Thursday, December 22, 2011

I Made Curds and Whey

Who knew that Little Ms. Muffet was such a healthy little girl, eating her curds and whey.  I can only hope that someday soon little Henry will be able to enjoy the benefits that homemade whey can provide.

If you had told me a few months ago that I would be making this concoction myself I might not have believed you, it was only when I rigged some cheese cloth to dangle above my counter top that I sat back and laughed at the little house on the prairie-like-homemaker I have quickly become due to Henry's FPIES and our new GAPS diet!

You are mostly likely asking yourself at this point, why in the world would someone want to make homemade curds and whey?  Or maybe you aren't even there yet, maybe you are saying "what in the world is whey anyway?" 

Whey is the liquid that drips off of yogurt when you separate the liquid from the solids.   Whey contains pro-biotics, which are the good bacteria that your gut needs to fight off infection, digest foods and keep you healthy.  These good bacteria are depleted with the use of antibiotics or the insult from stomach viruses that cause vomiting and diarrhea.   You can use whey as a starter culture for your homemade yogurt, I have some brewing now.  You can also use a little whey mixed in fresh pressed juices or add it to your broth to add a pro-biotic to the liquids you are drinking.  I made whey mostly as a science experiment, and since my raw milk was tasting a bit sour,  I figured what the hey let's make some whey.  I would not recommend using whey if your child has FPIES to milk proteins as Henry does.  I made it so can use it myself, for my homemade yogurt and for my other children.

Start with raw milk, if you want to know about raw milk check out the Weston A. Price foundation which has lots of good resources about raw milk as well as eating a more healthy diet.   It seemed like it worked best when I used eight day old milk that was a little sour.   Right now I am trying to make yogurt from my fresh milk which was just delivered yesterday and it isn't curdling up like the older milk did.  Apparently you don't have to heat raw milk like you do pasteurized milk because raw milk already has it's own healthy bacteria in it which is not destroyed in the pasteurization process. 

To make whey I first warmed mine raw milk just slightly on the stove, you need to be careful not to overheat it or you'll have a mess on your hands.   After it's warmed, add in your started culture.   For half a gallon of milk you want to add about 1/2 a cup of yogurt, either your own or store bought, organic yogurt.   Mix it thoroughly.  I don't have a yogurt maker, so I just put mine in a stainless steal pot and covered it with aluminum foil.  I had preheated the oven so when I stuck my hand in it, it was just slightly warm.  I then left my stove just barely on, the first setting on my stove is 170, I put it just on, not near the 170, hoping the stove would be somewhere around the recommended 120 degrees.  I checked the milk frequently to make sure it wasn't getting to hot.   If you test it on your wrist it should be just slightly warm.   I have read that you can do the same thing in the crock pot and leave it on overnight.  I left mine in the oven for 24 hours.  I cannot be responsible for yogurt fires or worse, so I would recommend checking on this regularly and not leaving home for long.  Also, make sure your husband knows why the oven is just "slightly" on.  For some reason, the first time I tried this my husband did not know what I was doing.  You would have thought that he would have just shut the stove off or looked inside for that matter and asked me what I was doing.  He says he was washing the stove and "accidentally" turned the stove up to 170 degrees.  The result was overnight my milk burned to a chunky cheese like crisp, and thankful the house didn't burn down in the process, so be careful!

The first time I did this I didn't have a lot of milk to start with. The end product--yogurt--was lumpy and still rather liquidy, which I have been told happens often with raw milk because it is unpredictable as to what consistency of yogurt you will come up with.  That being said, if I ever perfect the consistency of raw milk yogurt, I will share the secret.

With so much liquid being present and not enough to feed the family, I decided to strain it and make my curds and whey.  This part is pretty easy as well as entertaining.  Just purchase some cheese cloth, you can find it at any grocery store, and line your colander with it.  Put it over a large bowl  so your liquid can fall through.  Put your yogurt in the cheese cloth and let it sit for several hours, the liquid will separate from the solids.


If you want to strain even further to really dry out the curds, then suspend the cheese cloth from something, have fun figuring that out and be careful!

 The end product is curds, which are like cottage cheese, only much better tasting, you can mix with salt, eat plain or mix in fresh fruit.  The whey will keep for several months and can be used to add pro-biotic to your drinks or as a started for your next batch of yogurt or curds and whey.   You can also use a little whey to lacto ferment your own fresh veggies or fruit.  So see how handy a bit of whey can be?   Have fun and enjoy!

Saturday, December 17, 2011

The Incredible Edible Egg!

I can't believe it, I made a grain free Birthday Cake!  And it was a complete hit.  Now the cake was for my third child Andrew's 4th Birthday and it was my attempt to make something that was GAPS friendly as well as something I could allow my son Henry to try.  Now, I know what some of your are thinking right now, how in the world could you give this to your son who is on the intro diet for GAPS.  I am going to stop you right there and make a confession.  I am NOT going to be the person to show you how to do the GAPS intro diet perfectly.  I am going to admit that I really struggle when my little son who has been struggling to gain weight, is crying and asking for food that is good for him, like an apple and having to tell him no.  I have allowed Henry to have some apple in the past weeks.  I try to limit him as I know that the apple would be a sweeter food and potentially allow bad bacteria to over populate his gut during this intro stage.  However, for some reason I'm not seeing any noticeable side effects with the apple right now.   I did however, repent of my not so wise choice to allow him to try strawberries, which he did not tolerate and that was obvious.   That disclaimer given, lets get on to the recipe. 

Now, if you want the exact recipe you'll need to pick up the GAPS book by Dr. Natasha Campbell- McBrided which I highly recommend regarardless of what aliment you have, it offers a wealth of knowledge and will change your thinking about health completely.  I tweaked the original recipe it to make a cake the size that I wanted and the way I wanted.

Eggs have gotten a bad wrap as far as cholesterol goes but let me tell you they are my new favorite food.  Of course we know that the cholesterol in eggs is actually not bad for you and that cholesterol is needed for a healthy brain and body.  I started with whipping up raw egg yokes as Henry's substitute "yogurt."  or "ice cream"  I would have been scared to try this in the past, but I got some awesome eggs that are from a local farmer and he said that they mostly graze the land but in the winter do eat an organic feed which he guaranteed did not contain soy or corn.  Awesome!  So I literally, separate two to three yokes and whip them up until they are fluffy and they go from that yellow color up at the top of the post, to a lighter color like this.

Can you believe that's the yoke?   Neither did I!  So you're going to keep whipping and whipping with your mixer, for about six minutes until you get the lighter color and fluffier texture, just when you think you need to stop, keep whipping and you'll see the change.  Then I add a little natural vanilla, no alcohol in it, and some honey to taste.  You think this sounds gross, try it yourself, it tastes like custard and it's awesome.  Freaking out cause its raw, I was a little nervous too, but then I thought about how usually I eat the yokes runny in my eggs anyway, so what's the difference?   This is a great snack and Henry loves it.  I also sometimes don't do the honey or vanilla but just whip up and add to the broth, a great way to get in some great nutrient's and extra protein and calories. 

To make the grain free cake you are going to separate the egg yokes and egg whites and put them in separate bowls.  For my cake I had two 9 inch cake pans and I used six whites and six yokes to make it.  For the whites they are going to be runny and clear at first like so,

I whipped up mine for about 8 minutes until they increased in size and become firmer in texture.  Seriously, this cake is just fun to make as a science project for the shear entertainment I got from just seeing the eggs change texture and color! 

I then added my alcohol free vanilla.  I thought an interesting twist might be to add some cinnamon or pumpkin spice.  Or if you wanted to take it a different direction may try lemon zest or orange, you can really be as creative as you want. 

I folded all the ingredients together and added in two cups of almond meal that was gluten free certified from Bob's Red Mill. 

I lined my 9 inch round pans with parchment paper which made the whole cleaning up process much easier in the end. 

I baked at 350 for 35 minutes and  this was the beautiful result

Okay, now these little egg puffs, have little flavor other than egg, so the taste is all in the filling.  The great part is, you can make a filling for the cake with whatever suits your child's needs.  I chose to make my own apple sauce from six organic apples.  I added in extra honey to make it sweet, man it was yummy.  I dug out some of the inside of both cakes and mixed some of the cake with my apple sauce.  I thought it would have been so yummy to add in some of the fresh cream I have from the raw milk share we have, but  don't worry, I'm not that far of  my rocker.  Of course Henry isn't ready for milk yet.  Then I put the two filled cakes on top of each other.

I then spread the rest of the apple sauce, that was not mixed with cake chunks all over the cake like a frosting.  Here's were I messed up with the GAPS intro.  I just though the cake lacked color and while I wanted to accommodate Henry, I didn't want Andrew to feel like his cake was blah.  So mushed up some organic strawberries and pored them all over the top.   I sprinkled poppy seeds to make a boarder and a "road" for a car and this was the end product.

The key with this cake was letting it sit overnight.  All the juices from the fruit soaked into it so that the whole thing was moist.  Not only did it look great, it tasted awesome and all the kids loved it. I can tell you, I was so proud to serve my kids and dye free, grain free Birthday Cake that tasted totally awesome.  I actually served with home-made ice cream that I only used honey to sweeten.  Again, I didn't give any dairy to Henry, but I did serve him up some of that egg yoke custard that I mentioned in the beginning.

Henry really doesn't care much for cake and after all this effort he only had a bite.  It happened to be of a strawberry.  Within twenty minutes his tummy was rumbling loudly and he said, it was hurting.  With in two hours he had the blow out diarrhea and horrible red but rash that bleeds when you wipe it.  And he had a rash on his face.  Of course I felt horrible that I caused him so much pain, when all I really wanted was to include him in the festivities and not have him feel left out.  I really struggle with this part, but I saw right away that I can't just detour from the GAPS intro, he really needs it, and while he's healing, he's not ready for sugary foods even if they are only just fruits.  I was feeling so sad and so guilty about making Henry sick.  I figured we'd be up all night, but that one episode was it, I was afraid he would vomit but he never did.  The rashes faded by the next day, which encouraged me that something is getting better as his reaction seemed so mild compared to how he used to react to trigger foods.

On a different note, I am thrilled to have an alternative to grain based cake that is actually packed with protein and good for you!  The kids loved it and I'm excited to try some other variations of this recipe

Purchase the GAPS book for more recipes like this one

Tuesday, December 13, 2011

Disappointment, Doubt, Discouragement--how do we cope

(If you don't have time to view the entire post skip down to the end for the summary points)

Many of you  dreamed of your baby taking that first bite of food and smearing it all over his face, not a child who vomited every time he tried a new food or got a rash from head to toe.   Many of you imagined a happy go lucky little one, not a screaming colicky baby who is still so fussy and fragile, who seems to be in pain more often than not.  You face daily disappointments and the overwhelming feeling that it is up to you to figure this out.  You spend your sleepless nights holding that crying baby and trying not to cry yourself.  You can't help but wonder why this happened to you and why God allowed this, couldn't you just have been like everyone else who has a baby that eats and sleeps normally?

You feel so overwhelmed every day, trying to keep it all together on little sleep.   You see the piles of laundry and dishes, you see the carpet needs vacuumed and the bathrooms scrubbed.  You need to go to the grocery store for the fifth time this week, that's the one thing you absolutely have to do, because you can't go to a fast food joint to pick up something "easy," you can't just take a break or have a night off from food allergies or intolerance's.  

At the beginning you told yourself, this would be over soon, the baby would grow out of his colicky state, he would eventually be able to eat, this wouldn't last forever.  Two and half years into it, it's hard to keep saying the same things over and over, how are you going to keep your spirits up in the midst of a "chronic illness?"

I say these things with humility, as nurse, I encounter Mom's all the time, who have children who have been battling cancer, have diabetes, are disabled, or will never grow to be self sufficient without the help of their parents.  I have spoken to countless parents who keep marching on in the face of adversity, who put themselves aside every day, to take care of the child they love.   What keeps them from falling into a deep depression?  How do they wake up every morning and deal with doctors appointments, chemotherapy, and caring for children with chronic illness? 


The love of a parent is all encompassing.  It is powerful.  It is blind, it is selfless, it is strong.  This love will fight against all odds, to do whatever it takes to protect his or her child, to help him, to give him or her the best life possible.  I have seen this, I have lived this.

We keep on because we have to, for our children.

However, it is possible to allow the chronic to steal our joy, even our very life away from us.  To consume us, to overwhelm us.  We have to fight this discouragement with the same gusto in which we are fighting for child.   Doesn't our child deserve to have a mother who is full of joy and life, in spite of all that threatens to take that from us?  I have seen the chronic destroy the spirit of the caregiver, I have seen the caregiver become so overspent, that she falls into a place of discouragement, or bitterness or depression.  How do we, the caregiver cope with the demands that fall upon us and at the present, have no for-see-able end in sight?

Let's turn to my favorite source of wisdom and help, The Bible, God's Living Word to us. 
What are the two things that often steal from our joy and threaten to weaken us and bring us down as we care for the chronically ill?  I would say for me it is fear and anxiety. 

"Cast all your anxiety upon Him (Jesus) because he cares for you."  1 Peter 5:7

The apostle Paul,was no stranger to suffering, he himself had been imprisoned, beaten, mocked, and even suffered from his own physical aliment which he refers to has a "thorn in his flesh."  He speaks from his own experience with chronic pain and suffering,  and he tells us:

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all comprehension shall guard your hearts and minds in Christ Jesus."  Phil 4:6-7

He goes on to explain how we can allow God's peace into our lives, we have to watch what our minds are dwelling on and make an effort to actually think about the following things:  "whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, let your mind dwell on these things.  The things you have learned and received and heard and seen in me, practice these things; and the God of peace shall be with you.:  Phil 4:8-9

Paul is one of my favorite hero's of the faith, he knows what it's like to endure hardship, yet he keeps his joy, he keeps his faith in spite of it all.  He has this belief which keeps him going

"And my God shall supply all your needs according to His reaches in glory in Christ Jesus."  Phil 4:19

You may be saying to yourself right now, well apparently God does not know my needs because he sure isn't supplying them right now.  I agree that there are times, when it feels like God is neither listening or near to us.  I do not wish to minimize your pain and suffering.  There were times in my journey when I felt that God was distant, when I cried out to him and felt He was silent, it was in times like these that I needed the help of others to keep me going.

As women, we are not good at asking for help.  We are used to doing it on our own.  In our culture we applaud those who put on a happy face and act like they have it all together.  The supermom who does it all!  In so doing, we do ourselves and others a great disservice.  In general, I feel that sometimes Christian women and mom's are even worse at being genuine.  Rather than admitting we are struggling with something, we try to act like we are the "good Christian" who would certainly never have questions or doubts.  What are we afraid of?  Afraid of being seen for who we really are, human?  We are still imperfect, that is why we need God's help, that is why we need each other.  We sometimes need another woman or older woman to come along side us and pray for us, to build us up, to share her wisdom and her journey.  We need to hear the stories of the older generation, we need to seek these women out and ask them to coffee and ask them how they did it.  We need to be real with each other so we can know that we are not alone in our struggles on this earth. 

Paul himself reminds us of the real secret to his incredible attitude, the real reason he kept going and never gave up in the face of constant adversity.  "But whatever things were gain to me, those things I have counted as loss for the sake of Christ, more than than, I count all things to be loss in view of the surpassing value of knowing Christ Jesus as my Lord, for whom I have suffered the loss of all things, and count them as rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith . . . I press on toward the goal for the prize of the upward call of God in Christ Jesus."  Phil 3:7-14

Paul knew, believed more than anything else, that there was more to this life than just the present day struggles.  His primary focus was on God and he says that he counts everything else as garbage that can't even be compared to the future that he has in heaven with Jesus.    He knew that the thorn in his flesh was temporary, though afflicting him in this life, it would have no power over him in the next.   He had his focus on Jesus first, He made an effort to put Jesus and the things of God first in His life, above everything else.

Well, that's all well and good you might say, but I'm not Paul, I'm just a regular person, and I don't have some super faith like that.  Well believe it or not Paul wasn't as different than you as you might imagine.   In fact he is quick to remind us that he was the "least of all saints," Eph 3:8, and that he was not even fit to be called an apostle 1 Cor 15:10 because he persecuted the church prior to his conversion.  If anything, God uses Paul to show us that He can use anyone, that He can change anyone, that if we put our hope in Him anything is possible, that His grace can reach the darkest soul and transform it.

I imagine that some of you may not know Jesus, I invite you to read the Bible, without thinking about what you've heard or imagined Him to be.  But start with the Gospel of John and just read about Jesus and see who He is and His message to you personally. 

As I think of the love that motivates me to keep fighting for my son.  The love and makes me want to be a better mother and a better person; I can't help but think of the sacrifice that God made for you and me.   Think of that love that you have for your child and imagine allowing your child to face suffering and pain, to not intervene on his behalf, to give him up to save someone who didn't even know you or even care for you.  This is the love that God has for you, I hope that you might embrace it and let it tranform you. 

"For God so loved the world, that He gave His only begotten Son, that who so ever believes in Him will not perish, but have eternal life. " John 3:16

Summary on how to overcome disappointment, doubt and discouragement

1.  Give your anxiety to God and believe that He cares for you 1Peter 5:7
2.  Pray and make your requests known to God  Phil 4:6-7
3.  Make and effort to dwell on the right things Phil 4:8-9
4.  Admit your struggles and your humanness
5.  Seek out other women who can help keep you on the right path and encourage your faith
6.  Know that this life and all the hardships that come with it are temporary Phil 3:7-14
7.  Accept Gods love for you, forgiveness and provision for you to have eternal life in Jesus John 3:16

Tuesday, December 6, 2011

Fish heads, bone broth and chicken feet. Oh my!

About 4 weeks ago I looked at my son after his bath, his ribs prominent, his skin pale again, his throat sounding congested and full of mucous, much like it had in the days when he was aspirating.  I have to admit that since Henry's diagnosis of FPIES, I have navigated the murky waters of this diagnosis with little guidance from anyone.  The doctors wanted to try Henry out on what is known as an elemental formula NEOCATE, as the start of an elimination diet, to basically take everything out of his system that might be damaging his gut and sort of give him a break.  The plan was, to be on the formula for a  few weeks and then introduce one food at a time.  This was the "idea" however, after just three days on the NEOCATE formula, Henry's stomach blew up like a big balloon, he looked like he was nine months pregnant and he was crying and burping all night and refluxing.  Then he had horrible blow out diarrhea.  Supposedly the formula was hypoallergenic, however, he was more ill appearing on it than ever.  I stopped it immediately and put him back on my homemade formula with a hemp milk base.  Apparently NEOCATE has corn it it, the doctors said it is so broken down that no one could react to it, but Henry did.   I have talked with mom's of other, not so typical FPIES kid,s who have reacted to it as well.  

Months prior to our diagnosis of FPIES an ENT surgeon had given me, what I felt was a devastating evaluation of my son.  After attempting to scope his airway and failing to do so, she told me bluntly.  "I don't know what your son has, he reacted to my instruments in his throat like nothing I've ever seen before.  His throat instantly swelled and closed and he stopped breathing.  It is not safe for us to attempt a surgical repair of his laryngeal cleft at this time, and I don't know if it will ever be able to be repaired."  She told me, in all her years she had never seen a kid swell that quickly and aggressively just by having her instruments in his throat.  She told me "He has some inflammatory disorder that has probably not been discovered yet, I'm an ENT so I don't know what he has, but I bet we are about ten to fifteen years out from understanding it."     Thankfully, Henry did not actually have a true laryngeal cleft.  However, his severe reflux, caused by FPIES, along with his strange anatomical laryngeal notch, mostly likely contributed to his aspiration and difficulty swallowing. 

Looking back on what she said, I think she was the only person who was forthright with me, by saying, he has something that we don't understand.   And it's true, FPIES is not well understood and that may be what has brought you here to this place of your own research and struggle to try to help your own child.   I agree with her perception that he has an inflammatory disease, because I see how after the wrong food is given he has sounds in his throat and then later diarrhea.   It is as if the entire GI tract is inflamed.

My son started out in the 30% for his height and weight and after adding solids he fell to just below the 3rd percentile, never to improve.  A few months ago he was starting to fall below that curve, not even on the growth chart.  He has NEVER been able to put on weight, even when I was controlling his calories with the G-tube.   No one has ever explained why this is.  However a few weeks ago the nutritionist we saw told me that children like Henry, have so much inflammation that they mal-absorb nutrition, they can't utilize the calories they take in. 

With him growing thinner, I felt sense of urgency to find a way to increase his weight and improve his nutrition, but how?   That desperation is what brought me to the book by Dr. Natasha Campbell-McBride "Gut and Psychology Syndrome."  The book makes mention that all diseases begin in the gut.   I have posted a link to the GAPS website, which gives some of the information about the diet.  I have to let you know that I myself took a year to research before I was ready to take the leap into starting my son on this diet.  The first phase involves making bone broths from chicken, lamb, beef, and yes even fish heads.  When I read that other mom's were doing this, my first inclination was horror.  I really didn't understand how this could work, I hate to admit it, but I wrote this off as some extreme experiment that I would never subject my child to.  I was worried that it was unsafe, as it seems the diet is mostly based on eating proteins and fat.  It just sounded like another version of the Atkins diet.  I worried it was some weird concoction of empty promises that was most likely deceiving these desperate mom's who were looking to fix their children.  I had tried the Atkins diet myself in college and I knew that it caused weight loss, and that was the opposite of what I wanted for my son.

I admit that I judged the program without fully understanding it.   Now that I have actually read the book, I understand the science and rational behind it.  It makes sense, and in fact, makes more sense than some of the things that doctors have suggested, which we tried, but which in the end did not work for Henry.  I am in no way telling you to abandon your doctors advise and jump in blindly.  However, wish it would be that Doctors would come along side mothers and would look at the entire body as a whole, that they would use nutrition to help heal the body.  Obviously we know that a person who eats vegetables daily is most likely more healthy than the person who eats donuts and cakes?  We see that one person feels tired and bogged down, while the other has energy to live life and thrive.  It makes sense, but why don't we think about these basic principles when treating patients with chronic illness?  FPIES certainly feels like a chronic illness at this point.

 Henry was refusing to eat anyway, so what better time to start him on broths.  The broths are intended, like the elemental formula to give the gut a rest.   I see now, how soothing a broth could be.  Think of how you want to drink them when you feel ill.   A warm chicken broth when you have a cold, or after the stomach flu when you are not yet ready to eat.  I went to Whole Foods and purchased an entire red snapper fish; head, bones and all.  I went home and threw it in a pot.  I cooked it for 20 hours until it fell apart, I freaked out my other kids by showing them the left over head in the pot.  When they asked what it was, I told them "dinner."  Man, I wish you could have seen the look on their faces!   Then I told them it was Henry's dinner!   The next day my friend called me and said she had some chicken feet I could use to make broth, wow who knew!

Basically, Henry has been taking several broths along with the meat that falls off the bones, I have also added several types of  winter squashes and non-fibrous vegetables.  He also seems to tolerate eggs, which I am extremely thankful for.   Do I know for sure that GAPS is going to fix Henry?   Well, that IS a question.  If by fix, we mean that Henry will be able to eat ANYTHING he wants, that he will have no restrictions on his diet?    Well, I don't know about that part.  Right now, I am not looking for him to be able to eat MORE foods, that is not my goal right now.  My goal is for him to be able to actually USE the nutrition from the foods he eats.  To actually be able to absorb the nutrition, to have energy and to gain weight and grow.  He may be eating broth and squash for a while, and right now, I am okay with that.  I see a difference in him already in just three  weeks.  He isn't feeling sick right now, he isn't having reflux, and he has a lot more energy.   He has actually gained back the weight he lost and would now be back to his third percentile.   I think we'll stay here awhile and let his gut just rest and heal.  We don't need to trial any new foods, we just need to enjoy this break he has from pain and discomfort.   I'll admit that this GAPS diet isn't for the faint of heart, but then again was FPIES?   So go ahead, give your local butcher a call and ask if he has any left over fish heads, or chicken feet, and save a few for me, I'm clean out! 

Here we go again!

First of all welcome back to those of you who actually read this blog in spite of my failed efforts to keep it current.  I have to be honest, sometimes when dealing with chronic issues in your child, it is hard to keep ones focus in the right place.  It is easy to become discouraged, or to feel consumed by the problems you encounter on a daily basis.  While I want to be informed and enlightened, I also don't want to be consumed by fear or worry.   It is hard balance as we search and hope for a cure for our child.  Balancing the need we have to fight for our child's well being, and yet the desire we have to submit to God's will for our lives.   Working constantly to help them, and yet at the same time being willing to accept and let go of the things outside of our control.    It is a fine line.

I took sometime away from the Internet and blogging to just be quiet and calm my mind and thoughts.   For about 6 months Henry has been drinking thin liquids without aspirating.  It is nothing short of a miracle in my mind.  I remember when he had his G-tube, I remember when he couldn't eat and the doctors told me they didn't know if or when he would ever eat.  It was a dark place, it seems like a very  faint memory now.   I attribute all of the healing in his body related to eliminating many foods from his diet, shortly after the diagnosis of FPIES or Food Protein Induced Enterocolitis Syndrome.   I saw my son swallow water for the first time 6 months ago, something he had never been able to do with out choking. 

The one thing still not under control has been chronic diarrhea.  Henry seems to have a chronic form of FPIES and delayed reactions to the foods that hurt him, making it hard for me to figure what he is reacting too.  I put together some pieces of the puzzle, but it seemed to me that something was still missing.

A few months ago Henry had an emergency called intussusception.  The doctors don't know what causes the intestines to telescope onto themselves in this way, cutting of the circulation and eventually causing death to the gut.  Thank God we got him in early enough and he did not require a surgery or have any "lasting" affects.  I did notice a change in him ever since that happened.  Along with bloody stools and even after that resolved, Henry just stopped eating.  After a few weeks it was enough for him to eat one or two bites of food a day, and he was hardly drinking.  I began to become extremely concerned.  The doctors didn't know what to do.    I started to research and remember things I had looked into in the past--the other pieces to Henry's puzzle. 

I have always wondered about Henry having a "leaky" gut.  It seems he's had mucousy diarrhea since birth.  We got it under control with the elimination diet until a few months ago when it returned along with new weird rashes.  Henry has been on antibiotics and steroids most of his life.  These drugs are known to disrupt the normal flora in the gut.   This opens a door for opportunistic yeast, candida albacans to flourish and grow.  The rashes Henry has on his face and bottom look the same, I am nurse, I know they look like yeast.  Have you ever had yeast?  It burns, it hurts, it's not fun.  If Henry has this inside his whole GI tract, maybe that's why he wont eat.  I've always had him on a pro-biotic but I recently read an article about how one needs to be on a pro-biotic with several different strains and for a child his age he need about 15 billion units.  The one I've been giving him has about 5 billion.  It's also hard to find a good probiotic for an FPIES kid who is reactive to all kinds of things. 

I started reading more and more and I ordered Dr. Natasha Campbell-McBride's book called "Gut and Psychology Syndrome."  A few weeks ago Henry was pasty white, he had lost a pound and a half and was 23lbs 3 oz at 30 months old.  His little arms and legs were so thin and I could see his ribs.  I was scared, because he would not eat and as you know, I don't have a G-tube any more to force calories in.  I read the book and I'm still reading it over and over.   I started making bone broths and the child who was refusing to eat actually has been drinking these broths filled with fat and nutrients and before my eyes, I am seeing slow progress.  The diarrhea stopped and it seems the pain, that was causing him to refuse to eat, has stopped as well.   Today he ate squash, which he would NEVER touch before this and several plates of chicken.  It was amazing to see.   We are trying something I feared to try, another elimination diet, but this time with the goal of actually cleaning out his gut and rebuilding it so to speak, with good flora and new cells.  Is it possible?   I'm hoping so, come on the journey with us and lets see what happens, we've got nothing to loose.

Saturday, May 21, 2011

Two years . . .

I remember it well, my fourth child and my longest labor . . .Henry was born after 13 hours and I laughed when I saw his thick jet black hair.  Whoever said that kids with thick hair give you heart-burn was right, I had the worst heart-burn of my life when I was pregnant and Henry of course he had severe GERD and colic.  I'm not sure what the hair has to do with it, but that old wives tail may have a bit of truth to it!  The neat thing about Henry is that he was the answer to my oldest daughter Hannah's prayer to have her baby brother born on her birthday.  And so today she turns seven and he turns two.
I sit in awe today, and waves of nostalgia wash over me.  I've been a mother for 7 years.  How did that go by so quickly.  I remember when I brought my first daughter out in public as a newborn.  I remember a mother I met in the store; "I remember when my children were that little . . . it goes by so fast, cherish it." she said.  Her words stuck with me, the longing in her eyes warned me of a time in the future, when I would actually miss those nights of sleep deprivation, nursing and rocking a newborn.  She was right, it was gone in a blink of an eye.

I sit in wonder and awe that God choose me to be the mother of these precious and beautiful children.  Me, a flawed , impatient and imperfect person.  He gave me these beautiful, spirited, funny children, a gift beyond anything I could have ever imagined in my life.  I am indeed blessed.

The past two years has gone by faster than any previous years.   It was like a world wind of tests, doctors visits,  fears and worries.  It was a pit of darkness and nearly despair, and a wilderness of unknowns and a deep thirst for answers.   At times I was gripped with panic and despiration, the terrible helplessness in not knowing what was wrong with my son, or how to help him.  Some questions are still unanswered.  Why is Henry still aspirating?  Why is he still underweight?

I've had him on an elimination diet for over 6 months.  His stomach issues have improved, it's not quite perfect, but the diarrhea is mostly gone.  He still has to drink liquids very thick, or else he coughs and his chest gets rattly and congested with aspiration.   In case you were wondering, we chose to hold off on the swallow study, and yes the allergy testing too.   Maybe you wonder why.  Well, Henry doesn't have any symptoms of true allergy, he has "intolerance's" to many foods.  He has had blood work in the past, as well as skin testing when he was younger.  When I give him dairy he doesn't swell up or get hives.  He has diarrhea;  he burps and has a lot of reflux sounds in his gut.  So  I opted to not put him through any more testing as of yet and to try to continue on this diet.  Also, he has had at least four swallow studies in the past year.  All of which showed that he was still aspirating.  I wanted to give his body more time to heal from the inflammation that might have been caused by food intolerance or the FPIES that he was recently diagnosed with.  The doctorsfeel if he has not outgrown his pseudo-laryngeal cleft (Cincinnati children's determined that he has something LESS than a type one cleft which is the smallest size cleft) that they would attempt to sew up the grove in his larynx in hopes that this would stop his aspiration of thin liquids.  I guess, I am not quite ready to do the surgery.  I have seen some progress in little Henry, and when given small amounts of water with a cup, in which I can control the sips, he doesn't choke unless he takes it too fast.  The confusing part is Henry's aspiration is silent, so we usually don't see the signs of it right away, until a few days later when he is sounding "gunky" in his throat like he has to clear it, he also starts sneezing a lot and then coughing and much later wheezing.   In other words, I am not convinced that a surgery would fix Henry's aspiration.  If have learned anything about aspiration in the past two years, it is that there are many reasons that a child aspirates, it is not always as clear cut as having a laryngeal cleft.  Sometimes surgery helps, other times, there are more things involved, such as reflux or GERD and in Henry's case also food protein intolerance.  I am not fully convinced that a surgery will "fix" him.

All this to say, that we are sort of in a holding pattern.  I am okay with this.  Last year on Henry and Hannah's Birthday I called 911 because Henry was gagging and going limp.  It was a horrible day.   Looking back on it, I think he was possibly having a delayed reaction to the food he had eaten earlier, but it took me nearly several months to find out that he had FPIES (Food Protein Induced Enterocolitis Syndrome).  It has been a long, rocky road.  I have been  tried  and stretched and today I am a thousand times thankful for today:  the present moment.  Today my son is rosy cheeked and happy, today he is eating and drinking by mouth and not by G-tube like he was last year, today he is making funny faces and running around the house being a normal toddler.  Today he is off ALL of his medications, he is not wheezing, he is not at the hospital.  He is home.  I know that others who read this are not were I am yet, I maybe you are at the beginning of the journey to answers and hope.  Henry is not perfect, there are many foods he cannot eat, he cannot drink liquids without thickner, but I choose to look at all that he can do and all that we have today.  I hope to give you hope for a better tomorrow.  I hope that my today will be yours soon.

Wednesday, February 23, 2011

Latex and Salicylate containing foods

For the past week Henry has been consuming ONLY his safe foods, a long with my miracle formula that he drinks to get the majority of his calories each day.  I have to say that he is doing wonderful.  I can see how our allergist advice to NOT TRIAL FOODS has made a difference in Henry.  For the first time in his life, he is consistently having normal stools and his little bottom isn't red any more.   Now, I just read that sentence back to myself and had a thought.  How is he going to feel when he is twenty years old and comes back and reads this blog?  Will he be angry that I discussed his red bottom with the entire world?  Well, hopefully, in the name of science, he'll be able to forgive me!

He has been happy and sleeping though the night!  He doesn't have eczema, or rashes on his body--it's truly amazing.  Even better, he's gained several ounces, which is the greatest indication that healing is taking place.  I am thankful that our allergist recommended to NOT TRIAL FOODS for the next six weeks, in order to allow his gut to heal.   After which time, they will repeat his swallow study and see if he is able to swallow without aspirating, that is, spilling liquid into his lungs.  It is our hope and prayer, that the inflammation caused by FPIES is contributing to his dysphagia (difficulty swallowing) and aspiration. 

I am also happy to report that Henry currently has an upper respiratory infection and is not wheezing or needing nebulizer treatments!  I believe that  that since Henry is eating his safe foods, in spite of having a respiratory infection, his overall inflammation is down.  Therefore, he is not refluxing or aspirating as he was previously and so he is not wheezing. 

I find it a bit interesting as I look at Henry's lists of food intolerance's.  There are two correlations I've noticed and I wonder if the skin prick testing might confirm which compound is the culprit.  Many of the foods listed are related to latex allergy.  Noted on the Cleveland Clinic's website the following list of foods are considered latex related are:


These foods can cause a latex like allergy because the proteins in the foods mimic latex proteins.  Obviously, the IgE mediated Latex reactions are life threatening, and would require avoidance of all latex and the need to carry an epi-pen.  However, I found it interesting that many of Henry's trigger foods are on this list, and curious whether it would be advisable to be very cautious with latex products, due to the sensitivity he already has to the foods.  The article states that just because you can't tolerate these foods does not mean that you will develop a latex allergy, however, I think it is an interesting observation.

Further Henry has always had a weird reaction to Ibuprofen or Motrin which contain salicylates.  He coughs and sometimes makes a retching sound when taking it, so I don't give it to him anymore.  Many of the foods on his intolerance list contain salicylates.  It is suggested that sometimes people can tolerate a small amount of salicylates if they are rotated in ones diet.  Foods that contain salicylates are as follows:

Green bell peppers

Salicylate-Containing Food Products
Ibuprofen (contains acetylsalicylic acid--a similar chemical)
Salad dressings
Tartar sauce
Hot chocolate mix
Cocoa mix
Candies (yellow and green)
Corned beef

We will have to see if the allergist thinks that there is a connection between latex or salicylate containing foods.  For those of you just learning your child or your personal allergy triggers here is another helpful link on the common food allergies.  It lists the most common allergens and gives lists of which foods contain them.

Wednesday, February 16, 2011

FPIES--how did we miss the signs?

Yesterday was Henry's allergy appointment.  I have to be honest I was reluctant to go.  I feel like
"we've been there, done that" when he was just 5 months old--all the skin prick tests came back negative.  I have to admit that when Henry's respiratory issues first surfaced, my first inclination was "could he have allergies?".  I have to admit I had an initial "gut feeling" that was quickly suppressed by doctors who told me that babies don't get allergies.  I pursued  an allergist anyway, all the skin prick testing was negative, but since she had two children of her own with MSPI (milk soy protein intolerance) she suggested that I stop eating milk and soy, since I was breast feeding and since Henry was having lots of mucousy diarrhea.   I did this and many of Henry's symptoms improved initially, until I started adding solids to his diet.  This should have been my first clue into Henry having a significant issue tolerating food proteins.  I guess I  never thought about solid foods playing a roll.   Henry was diagnosed with a type one laryngeal cleft around the same time, in  March of 2010.  After the cleft diagnosis, everything was focused on "airway."  I was so concerned about his aspiration issues that I didn't revisit the idea of food allergies or intolerance's.  Today I went back and read my blog posts on the laryngeal cleft kids website.  I read from day one until now.  I couldn't help but feel a deep sadness, as I everything I read, pointed to the diagnosis of FPIES--it's just I had never heard of it.  No doctor had ever mentioned it.    I guess my doctors weren't familiar enough with it, or we all were so fixated on the Henry's airway issues that we dismissed the possibilities of food intolerance.  All the while, Henry was failing to gain weight, he was anemic--all these things happened after the introduction of solid foods.  Failure to thrive, the increased coughing after eating, the difficulty swallowing, the diarrhea, random hives and rashes--then these weird spells where he would look like he was "passing out" and would become lethargic and unresponsive.  All of it was blamed on the laryngeal cleft and aspiration.  The thing that never added up for me, was that most children with a laryngeal cleft usually improve after the introduction of solids--Henry worsened.  I can't tell you how many times I questioned the doctors about this symptom,  over the past year and a half, but no one had an answer for me--no one.  The solution finally: "JUST DON'T FEED HIM any more."  It makes me sad that I knew in my heart that something more was wrong with Henry, but I pushed the feeling aside after months of Doctor's telling me that  "Henry is just different."  The doctors couldn't figure it what exactly was different,  but they didn't look into it further either.  I can't help blame myself for not questioning his  symptoms or pursuing a solution.  For months I thought Henry was going to need a tracheostomy so that he could breath--I was so afraid and obsessed with his upcoming airway surgery--which never took place; I couldn't see beyond the immediate obstacles.  I was so obsessed with him being able to eat by mouth and getting rid of his G-tube, that I didn't look beyond it and into the real reason behind his persistent reflux, chronic diarrhea and constant inflammation.

There is no sense going backward.  There is no sense obsessing about what I should have done.  I don't blame anyone, I just feel sad that Henry was suffering from inflammation and reflux caused by his intolerance of solid foods.  A friend and I discussed today, that ANY TIME a child presents with GI reflux that does not respond to medication, combined with diarrhea or vomiting, as well as failure to thrive--FOOD INTOLERANCE should be evaluated.   I think with Henry, as soon as the laryngeal cleft was diagnosed, nothing else was pursued, everyone was focused on getting him well enough to have a surgical repair of his airway--yet interestingly enough, his airway was so inflamed, that repair was not possible in May.  It was not until we took all solid foods out of his diet that he finally healed enough for them to reevaluate his airway in Cincinnati, at which time he was found to have an interarytenoid grove and not a true laryngeal cleft.

I share this info, because I have heard countless stories about other kiddos who can get well enough to have the repair of the cleft--what is typically to blame--persistent reflux.  What I kept asking myself--is WHY in the world does a child have reflux that persists beyond 6 months?  The doctors tell us that a certain amount of reflux is normal in infancy due to the natural forces of laying prone most of the time and that it's easier in the laying down position for milk to reflux up the esophagus.  Also the esophageal sphincter is looser and tightens as the child grows.  If most children supposedly outgrow reflux after 6 months, wouldn't persistent reflux warrant further allergy testing--especially if it is coupled with respiratory symptoms as Henry had?  Obviously, we know that with FPIESEosinephilic disorders?  Is it possible that infants born premature are at more risk for developing more gut issues due  both the early introduction of cows milk protein (formula supplementing in early life)  as well as the fact that their GI tracts are more sensitive and underdeveloped to begin with?    These are just questions, I don't know the answers, I think we are about 5-10 years out from doctors understanding the connections between such things.  Originally our ENT who was looking primarily at Henry's airway said that the majority of the children she saw with airway malformations also had reflux and that the two were connected--although that connection was not well understood.  I venture to question if food intolerance in many cases are the cause of severe reflux as my son experienced.

It regret to think that many children diagnosed with severe reflux and asthma could possibly have food allergies that would not show up on the typical skin prick test.  I think that as parents, we can only be proactive in asking doctors and as I did, trialing my own elimination diet and thus proving the connection between Henry's intractable reflux and respiratory issues.  I cannot emphasize enough, that if you have a gut feeling that something is wrong with your child, keep a journal of symptoms and seek a second and third and even forth opinion if necessary.

I am pleased to know that Henry is seeing an allergist at The Children's Hospital in Denver who is very knowledgeable about FPIES and is working with some of the top researchers to stay abreast of current research.  The program is connected with National Jewish as they also specialize in asthma and allergies.  I appreciated the insight our new allergist gave concerning how to proceed with FPIES new food trial.  He said that right now Henry is reacting to everything due to the inflammation in his gut.  This goes along with the leaky gut theory that the idea that the gut is damaged and thus more reactive to any and all foods trialed.   In an article in The Journal of Pediatrics, Dr. Putnam who saw Henry in  Cincinnati Children's states, "Continuing food challenges in the face of repeated failure is emotionally taxing and, if not carefully done, commits the child to perpetual illness during the failed search for something to eat.  It is essential to recognize these cases and suspend food challenges until such time as optimal health is restored" (pg 8, The Journal of Pediatrics, July 2008).

This ideology is exactly what our allergist presented to us.  He suggested that for the next 6 weeks we keep Henry on his safe food list and suspend any further trials until his gut has a chance to heal.  He also suggested that we come in for more skin prick testing prior to starting the solid food trials.  At first I questioned this, but he further explained that it would be prudent to test Henry for any IgE mediated allergies, that is, the allergies that create a histamine response.  IgE mediated allergies produce the typical symptoms we recognize when a child has a reaction to peanuts such as facial swelling, hives, wheezing etc.    Once, we know Henry's underlying IgE allergies, if any,  we would know NOT to trial those foods.  This of course makes sense to me, so we have that appointment scheduled in one month.  Andrew, his older brother, will also be tested as he has similar symptoms to foods and has had notable improvement since I've removed some of the trigger foods I've identified. 

All in all, we are making progress, and finally have a plan.  To be honest, I am glad to stop trialing food, as every day it seemed someone had a rash or diarrhea and with trying to figure out both boys triggers I have my hands full.

Thursday, February 10, 2011

Take a vacation from your problems . . .

Do you remember the comedy with Bill Murray and Richard Dreyfus--"What about Bob?"  Remember the advice the psychologist gives:  "take a vacation from your problems."   That's sounds good to me.  I think we all could use a vacation from our problems.  As mom's we spend so much time nurturing others that we forget to nurture ourselves.  Sometimes we even loose sight of who we are because we are so wrapped up in trying to help our children and others that we forget the things that we love, the things that make us who we are.  We start defining ourselves by WHAT we DO rather than WHO we ARE.  When we go down a road of defining ourselves by what we do--it quickly becomes depressing.  Cooking, cleaning, sorting the laundry, loading the washer, loading the drier, folding, changing a diaper, changing another diaper that exploded onto Jr's newly washing clothing and ran down the leg onto the carpet, re-loading the washer with the diarrhea soaked clothes and the vomit covered sheets, washing the stain out of the carpet,  REPEAT.   No wonder we quickly find ourselves depressed and despairing.   Even more tempting is despair in the mother of a child with chronic illness.  She consumes herself with doing all that she can to help this child, researching, praying, comforting, researching, writing letters, calling insurance companies, explaining the symptoms over and over to doctors and well meaning friends, scheduling appointments, going to appointments, fighting back the tears as her child is poked again--she is always surviving for her child, always fighting for his/her rights, all the while pushing back the guilt she feels  that she is somehow not  doing enough for him or her or the other children who have to wait while she helps the sick child who demands all her time.  What would she give to take a vacation from her problems?  What would she do to make it all disappear.   

Oh, sisters, I wish I could be there at that bedside in the hospital with you even now.  I wish I could hold your hand through that procedure that your child is facing, I wish I could wrap my arms around you and in the silence whisper, "I've been there, it's okay."  I wish I could take away your fears and worries and give you the answers that you seek.  I wish I could spare you the pain that you are feeling for your child. 

I wish I could tell you that during those times of darkness, I never wavered in my faith, I never questioned God's love, I never doubted His care for me.  But if that were true, I would have been more than human.  No, rather, it was in the darkest times that I realized I was in fact human, that I was in fact merely a woman, a woman who never felt weaker than I felt then.  It was then that I was so low, that all I could do was look up, and cry out as your little ones cry out to you--"hold me, hold me".  I wish I could say that in a shining moment God parted the sky and said "HE IS HEALED."  And everything was better for Henry.  Instead, through the unexpected, God continues to teach me to wait and trust.   

I still do not have all the answers concerning my Henry.  I don't know why he still has trouble swallowing, or why he has to drink his formula as thick as pudding to prevent it from leaking into his lungs when he swallows.  After 20 months of doing all that I can, I don't know why he is still so severely underweight.  I don't know why he can't tolerate certain foods and why the things that most people can eat wreak havoc in his gut.  I don't know why he is prone towards inflammation or if he will still need his airway surgery.  I don't have the answers and neither do the doctors--yet.

God has chosen to leave some things unanswered.  I was angry at first.  Why would he allow this to happen to me.  Hadn't I been faithful--What did I do to deserve this?  What did Henry do?  The answer dear friends--is NOTHING.  I had to ask these hard questions, and so may you.  Do not fault yourself for being human.  Do not try to be something you are not.  As women we try to be so strong, we try to keep it all together.   Every other woman is wishing you would be real, so that she can know that she is NOT ALONE, that you are human too and so is she.  She is riddled with questions and anguish and pain.  That she is trying to be the best mom possible, but sometimes she makes mistakes--sometimes she forgets to plan dinner or do the laundry or dare I say--feed the dog!  She is human and so are you.

If we define ourselves by what we DO, we will end up despairing when we, by own standards, fail to be what we think we ought to be--SUPERMOM.  Who set this standard?  And what does it even mean?  Are you seriously a better mom because your child went to school with a picture perfect outfit and braided hair?  My child went to school today with a rats nest hairdo and purple flower boots--and he is a boy! 

Truth be told:  when our lives are filled with the stresses of REAL life, such as caring for a sick child, or caring for any child for that matter--we will despair when we focus solely on the problems,  the "diagnosis,"  or lack there of. 

Jesus said "MAN SHALL NOT LIVE ON BREAD ALONE"  Those with food allergies will give a hearty amen!  But what did He mean?   Well, look at the context in Matthew 4, Jesus was being tempted by Satan.  And when did Satan come to Jesus?  When he was at His strongest?  No!  He came to tempt him after Jesus had fasted for forty days and nights; when his body and mind were weak with hunger, when he was at the point of total exhaustion.  When He would have been most prone to depression and despair.   Jesus answered, "MAN SHALL NOT LIVE ON BREAD ALONE, BUT BY EVERY WORD THAT PROCEEDS OUT OF THE MOUTH OF GOD." 

Bread is of this earth, and it gives temporary life, but in the end we are all perishing with out God.  Imagine as with FPIES, when you taste it, it is wonderful and quenches your hunger, but hours later--it causes you to wreath in pain, and then putrefies in your gut causes you nausea and then to vomit.  It never satisfies, it never nourishes, it never fills--instead it ultimately destroys.   That is what I think happens when we feed ourselves with the wisdom of this world rather than the WORDS of God.  Why settle for the bread of the earth, why do we dwell on the  temporary--when  GODS word is available to us?  WORDS OF TRUTH. WORDS OF LIFE.  So many times, instead of turning to God's word, I worry, I research, I freak out--I eat the bread and later feel so sick.  I need His WORD to survive.

This life is in our face every day, and more so all the problems of it.  It is easy to be consumed by them, so often I am.  When I constantly dwell on the negative, it sours like putrid bread in my stomach, and if left unattended long enough it will grow into bitterness.  

One verse in my Bible study spoke to me, should I say screamed out at me this week--Sisters, eat it as the GOOD bread, let it fill you, let it nourish you, let it heal your soul:

"Therefore, we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day.  For momentary, light affliction is producing for us an ETERNAL weight of glory far beyond all comparison, while we look not at the things which are seen, but the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."  2 Corinthians 4:16-17

Don't lose heart.  Do NOT lose heart.  If I dwell only on what is happening here on earth, I will certainly lose heart, I will certainly despair.  There is more than this life, for you and your child.  This life is not the end.  There is a day coming when He, Jesus,will wipe away all the tears from our eyes.   When there will be no more pain or suffering.  This is temporary, I know it doesn't feel that way now, but what is coming is beyond all that we can imagine.  Also,  Paul says this "momentary" affliction will produce for us an ETERNAL glory, far beyond comparison.   These words come from the apostle Paul, who knew about suffering in more ways than one.  He knew what it was like to be isolated, to be misunderstood, he had faced prison and physical beatings, he knew what it was like to "despair even of life" (2 Cor 1:8) 

In God's time frame, what we are experiencing in this life is only momentary.  It is hard for us to understand, but I think it will be as though we've woken from a dream, when we wake up in heaven and realize how momentary it really was; although while we are here, this life feels like eternity.   We might not have an answer as to the WHY of our child's illness, we may never understand.  But God does tell us that the affliction or suffering we face is producing an eternal glory. What is that glory?  Is it  that others around you see what God is doing and see how He is working and they follow Him due to your response to the affliction?   Is it that as you experience these sufferings that you are changing into a more kind, compassionate person--that you now show empathy to others who have similar problems?    Had you never experienced these challenges, would you be the person you are today, or the person you are becoming?  As our children and husband watch us, will they see in fact that we are human, we do make mistakes, we do struggle, but in the end we set our eyes toward heaven and ask for God's help. 

I know it is easy to despair when your child is sick, especially if it is chronic.  Especially if there are no answers or good solutions.  If that is where you are right now, I have been there too, and it's OK to be in that place.  I want to reach into that place of isolation and emptiness and tell you, you wont have to be there forever.   God can still reach you, even in that pit of darkness. 

I can't take you on a vacation from your problems, I can only point you to the place where I turn from my problems and find hope.   That place is at the Cross, where Jesus was willing to lay His life down and suffer the worst of sufferings for me and for you.   He knows the deepest pains and hurts of our hearts.  And our Father God knows what it is to watch his only son suffer, to watch his son die a painful death.  He allowed Him to bear all our sin, He took our place, so that you and I could have the hope of eternal life, a life that is free from suffering and pain and loss--a life that we must hope for, that we must fix our eyes upon--it's coming . . .

Some practical things you can do to mentally take a vacation from your problems:
(I am not saying it is easy to do these things when you have a child/children who are ill they are just goals to work toward)
1.   Read the Bible--put encouraging verses around your house, on mirrors and random places to help you focus on the positive.
2.  Pray.  On your knees.  In the car.  while you cook, while you clean.  Just talk to God like He's your best friend--soon He will be. 
3.  Try to get out with some friends (I did this last night and it's something I haven't done for months--I laughed so hard, belly laughed--thanks girls--I needed that!)
4.  Go out with your husband--if you can't afford it  or spare a lot of time, be creative--think outside the box.  Have a friend watch your kids and just spend time at home, eating and talking and relaxing without the kids (more on how to focus on your marriage to a post to come)
5.  Do something for someone else who is in need--send a card,  call and ask how they are doing and listen to the answer,  make a meal--when you focus on someone else it gets your eyes off of your own issues for a while. 
6.  Purposefully give hugs to your children and husband--hugs make everyone feel good
7.  The next time one of your kids says "play with me," try not to say "in a minute" just surprise them by doing it--now.
8. Turn off the TV and Internet and get down on the floor and play with your kids.  Pretend to be a lion or something silly, loose yourself in their world of pretend and be someone else for a few minutes.
9.  Exercise--if you can't get out then turn on the music and see how long you can dance with your kids, they will love it and you will start laughing--laughing burns calories too!
10.   Go to bed.  Let yourself rest so you can do this again tomorrow.


Tuesday, February 8, 2011

Snow Cream--The Magical Allergy Free Treat!

I had a friend in college who was the sort of friend that only comes along once in a life time.  You know, the kind that puts others before herself, the kind of person who loved to give gifts and celebrate every occassion--the kind of person who made up holidays like "Best Friends Day" just to make you smile.  The kind of person I'd love to be for my kids if I wasn't bogged down with the realities of life.   She is the one who first introduced me to Snow Cream--a delicious frozen treat that is free, fun and located right in your back yard.  I came home from a stressful day of nursing school and had to study for an exam that night.  I thought she was joking when she said, let's make some ice cream out of snow!  Ah, yeah right.  But she ran out side and came back and whipped it up in front of me, and in her magic way, for a moment, she made me forgot the cares of the day and we laughed as we enjoyed this silly treat together.  Of course during those care-free college days, I never imagined this recipe would be so handy, fast forward into the future of a world of food intolerances. 

The very best part!  Snow cream is ALLERGY FREE and safe--unless of course you have a dog, and in that case carefully examine your snow!  My kids absolutely love this, and they can help make it . Why don't you send yours outside today with a pot to collect the snow, tell them you have a suprise that you are going to make.  Then  you can all sit down together and enjoy a perfectly delicious and care-free treat, and for a moment, you can forget about the worries of the day and just enjoy each other.

Collect as much snow as needed to feed your family.  I used about 6 cups of snow.  Here's the recipe, but feel free to tweak it to your delight!  Have fun and enjoy the snow!

Snow Cream

6 Cups of snow
1 Cup of  sugar (try warm honey or agave nectar if you like) add more sugar to taste
Start with about 1/2 cup of milk ( coconut is FABULOUS if you can tolerate, rice, almond or hemp)--add more to make the consistency you desire
2 tsp natural vanilla
Mix together with a spoon until soft
Add chocolate sauce, fruit, cookies, a dab of coffee, or just eat plain--it's yummy!

Monday, February 7, 2011

Home Made Baby Food--prep work for Complete Formula

Again, I am re posting this prior post for making your own baby food.  This is the prep work needed to make your own complete Formula.  

I head to the store each week to buy my fresh ingredients. The original COMPLETE FORMULA recipe calls for the jar puree baby food. I have modified this to use REAL food because I feel like it is fresher and jarred baby food can be contaminated with wheat or other foods that are not tolerated.  I used to use baby food if I didn't have the time or ran out of prepared food.   If your child has a G-tube but does not have food in tolerances that you can do the same.  Another other tricks if you don't have a lot of time, is to by frozen veggies that you can steam and and then puree.

Whenever there is organic meat on sale, I buy some to make for dinner and I buy an extra pound to cook for Henry. I usually use Salmon, Lamb, Bison, and chicken. Salmon has the omega oils, which have so many wonderful benefits, including reducing of inflammation in the body.  This is why, I always include a pediatric dose of liquid omega oil in my feed (you can get this at vitamin cottage in the children's section).  Lamb and Bison are supposed to have the highest iron content of meat, and since Henry was once anemic, I like to alternate those meats.    Most recently, with Henry's diagnosis of Food Protein Induced Enterocolitis Syndrome (FPIES) I have only been using chicken and turkey because I am trialing solid foods right now. 

I cook the meats the same way I would for my family except I exclude the spices. Then I puree the meat in the food processor and usually use the broth left in the pan to dilute it. This way, I can puree it to a very thin texture. After much trial and error, I have found that this step is really important if you are making G-tube feeds so that your feed is thin enough that it wont get stuck in the G-tube. If needed, you can add water, juice or milk to thin the meats more.  I then take the pureed meats and veggies and pour them  into individual ice trays.  Freeze overnight and then place the frozen different meats and veggies in labeled bags.  I usually try to do the ice trays after I go grocery shopping or whenever I have extra meat and vegetables on hand.  This way, it is so easy to just grab a few ice cubes of meat and veggies, thaw and then make your feed or formula! Ladies, you can do this step to make your own baby food as well. Just take your left over potatoes or meat and make your ice cube trays at night and before you know it you will have a whole stash of fresh baby food. With organic baby food being 0.69 to 0.89 cents per jar, you will SAVE A TON of money--believe me it is worth it, plus it is SO MUCH healthier for your baby, also you can be sure that there are no additives, dyes, preservatives or allergens. You can use whatever veggies you'd like when you make the formula, however I typically always add half an avocado for extra calories and healthy fats.   Yams and Sweet potatoes are the quickest baby vegetable to make if you are low on your pre-made veggies.  Just wrap a sweet potato in plastic wrap and put it in the microwave for about 5 minutes (more if it's a big one) and WAH LAH--smash it up and instant baby food!

So that's the prep work so you have some fresh meats and veggies frozen and ready to go.  Check out the Miracle Grow link for making your own Complete Formula. 

My Miracle Grow Formula

I wanted to take a moment to re post, what I call my MIRACLE grow formula for Henry.  Even the doctors are amazed at how much this has helped Henry and said that I should "bottle" it.  I wont claim that your underweight child will suddenly pork out to sumo wrestler--however, this formula has done much more for my son than add weight--I truly believe it has given him the nutrition he needs to thrive--all though in medical terms he is still considered "failure to thrive."  Failure to thrive is such a broad term.  Doctor's use it to describe a child who has "fallen off" their normal growth curve.  However, as a pediatric nurse myself, I believe there is a HUGE difference between a thriving child and a child who is FAILING to thrive.  So I would venture to say that my little Henry is THRIVING, and I believe that nutrition is the reason for this.  Is Henry small?  Yes he is, but since I started him on this feed, he is no longer pale and tired--he is a happy, climbing, running, baby boy with a beautiful skin tone, far from the way he appeared when he was anemic and on formula. 

I hope that others can tweak this formula to meet their child's needs.  This formula is NOT intended for infants but is it is considered a COMPLETE FORMULA for children who can not eat, and Henry survived on this formula ALONE for several months when he was not eating any solid food.  Of course if you have to eliminate items it would not be nutritionally complete so talk with your pediatrician or GI doctor if you are unsure. 

To this day, Henry does not drink anything else but this formula.  I do not give him plain water, juice or milk to drink, as our doctor said that we should ONLY give him this to drink so he is always getting extra calories.  I attempted to put him on Neocate, but his stomach blew up like a balloon, he had horrible diarrhea and rashes, and he was refluxing and coughing and I feared all his respiratory problems would return if I kept him on something he could not tolerate.    That being said, I know some people have to use Neocate, but I think due to Henry's issues with corn, he just could not handle it.  If you have any questions for me please don't hesitate to ask.  I hope this can help others as it has been the life saving food for my son!

Approximately 1000 cal G-tube feed, or Infant formula (33 cal per oz)

2 cups milk (soy, hemp, coconut, almond)--typically rice milk is too low in calories, but you could use it for a short time until you trial other milks.

1 cup juice (make sure you buy REAL 100 % fruit juice. Read the labels because some are all sugar and only 15% juice)--or make your own if you are that savy!

3 tablespoons of sugar (honey, white, or black strap molasses) I use the black strap because it is high in iron and calcium
3 tablespoons of oil ( rotate olive, or safflower)
6 tablespoons of infant rice or oat cereal (store bought can be contaminated with other allergens so I make my own rice, you can try Qinoa, millet, gluten free oats.  If your child cannot tolerate grains you can try equal amounts of a starchy food such as yams or potatoes)

2 2.5 oz jars of baby food meat (or about 2 ice cubes of any homeade meat or fish--rotate for variety)

2 4oz jars of baby food veggies (or about 4 ice cubes of  homade prepared veggies rotate for variety)
I add half an avacado for extra calories and  good fats

liquid baby vitamin supplement (dose per baby's doctor or per weight specifications on bottle read carefully for allergens)

liquid baby omega oil supplement (cod liver oil is the best source, dose per baby's weight/age specifications on bottle) be careful if your child has intolerance to fish--you could use flax seed oil if you know your child can tolerate flax--but look for gluten free

Optional secret ingredients (I believe these do wonders to heal the gut and boost the immune system)

pro biotic powder (obtain from pediatrician--dose per instructions.  Get one that is milk free if needed)

Braggs Apple cider vinegar (2 tsp)

for premaking meat and veggies, check out link to home made baby food

For those of you who have to thicken your feeds due to swallowing issues or having a laryngeal cleft--I use xanthum gum (same ingredient in the product SIMPLY THICK)--but it is a derivative of corn.  Other option would be to use Guar Gum which is derived from beans.  Start with small amounts and increase until you get the thickness desired--a little goes a long way so be careful--make sure you blend for about a minute to get the desired thickness.


Disclaimer: This advice is not medical in nature and is not intended to replace the advice of your doctor. All children who are failure to thrive or have swallowing problems should be followed closely by a doctor and may need to be evaluated by an occupational therapist of speech pathologist.

Wednesday, February 2, 2011

Is Corn the culprit?

Welcome to the world of mystery--attempting to discover what foods your child might have an intolerance to.  Welcome to expecting the unexpected--take two.  Back in August we discovered that little Henry did not have an actual cleft.   This was good news to us, since it seemed for the time being that he would not need a surgery to repair his airway.  Most recently, through my own research and daily documentation of what Henry eats and every little reaction from red lips to red bottom, I have made some interesting discoveries.  I do believe that Henry has an intolerance to foods.  I am not completely sure as to what extent.  For instance last night I gave him some, may I add delicious, gluten free sugar cookies.  As a side note, let me add that this brand, which I newly discovered is called 1-2-3 Gluten Free, and it was wonderful!  Not only is it gluten free but also soy, dairy, corn and nut free--a wonderful find for mommies of kiddo's with multiple allergies and food intolerance.   The cookies in and of themselves tasted awesome, and they were soft and chewy.   The problem--I made my own frosting with powdered sugar and a milk free and butter free alternative.  Earth balance makes a great soy and milk free spread (make sure you look for the SOY free) and it's a great way to add some calories for your kiddos who need to grow!  However, there is some corn in it for flavoring.  Then of course powdered sugar is pretty much all corn starch.  I whipped it up and wallah--it was a perfectly delicious reaction to corn which I believe occurred about 2-3 hours after consuming loads of frosting goodness.  I was so excited that Henry liked the cookies and ate about 3 of them (which is a lot of food for my little guy) that I didn't expect for him to have a reaction.  I was pretty darn proud of myself for making a gluten free, milk free, soy free cookie.  I didn't think about the lurking possibility of corn.  I must admit that this is why the elimination diet is so hard.  I am still in the process of discovery and I am not really sure how much or how little of a food will set him off.  Even more confusing, is if I can see something on the outside--such as a rash and hives, what could be going on inside that I cannot see?

Within two-and-a-half hours Henry had a rash on his lips and cheeks.  He also was really fussy and wanted to be held and kept drawing up his legs to his tummy and saying "ouch, ouch."  So sad.  Then he had a yucky poop and a red bottom and a little blood when I wiped him.  Really sad. 

The question is, if Henry has an issue with corn--is there a threshold?  I mean, can he tolerate a little but not a lot at a time?  Can he tolerate a small amount in a food, but not 3 cookies loaded with corn starch frosting?  I know from what I have read about FPIES so far would say "NO" I need to eliminate the food completely.  For those of you who read labels, corn is in everything so I have a challenging time a head of me, and I think many long hours of cooking and creating things my sweet boy can eat.  I am learning as I go about the challenges of having food intolerances, and I am just beginning to delve into these waters. 

I will be compiling a list of resources that I hope will be useful for those of you starting this journey or who know someone who has allergies or intolerances to foods.  Looking into the future we'll be keeping our cookies frosting free until I figure out a way to make it without corn starch. 

Thursday, January 27, 2011

FPIES diagnosis--what in the world is that?

Well, after a long hiatus, I am back to blogging, and a bit overwhelmed about where to begin.  Basically, after we returned from our Cincinnati trip, Henry seemed to being doing great.  I kept him on my homemade formula and we were not longer using the G-tube.  We also started introducing him to all sorts of foods.  I started out slowly since all Henry had ever really had was thickened liquids.  He loved being able to eat by mouth and welcomed new foods.  This was a real blessing because many children fed by a G-tube and with reflux issues can develop aversions to certain foods and eating can become really stressful.  For a over a month it seemed that all of Henry's problems were gone, that he had been miraculously healed.  Not to down play that, because I do feel that God has done quite a bit of healing in Henry's little life.  All of his inflammation was gone when he was scoped in Cincinnati.  His lungs were clear and he sounded great.  I know that God allowed this, and gave me hope that Henry could in fact be healthy. 

I have to admit that I was so focused on getting Henry to fatten up, that I didn't really withhold any foods from him.  In fact, the nutritionists encouraged me to put butter on everything, to even put cream or half in half in his drinks.  And I did.  I snuck in fats every where I could.  And I gave him milk products with abandon--I mean that's where all the fat is right?  Half n' half, sour cream, butter, cream cheese, cheese sticks, ice cream.  And Henry seemed to love it all.  I didn't really pay much attention to the loose stools and diarrhea, I didn't really think much of it when he vomited and kept retching a few minutes after putting half in half in his drink.  I guess I thought, maybe it was the fat content making his tummy a little off.    Plus he'd had diarrhea and weird yeasty smelling and sometime mucousy stools most of his life.   But then he started waking up more and more at night and I could hear him coughing again and since he has the Nissan, he can't throw up as easily as other kids, but I think he would have if he could.  It seemed like maybe he was having reflux again?  But I wasn't sure why and I just kept desperately trying to fatten him up.   I feel stupid now that it took me so long to put two and two together.   

I think sometimes when you have so many issues with your child you get a little tunnel vision.  Once we were back from Cincinnati and I knew Henry's lungs were okay I think I just went full force ahead to try to help him gain weight.  Slowly he started to go down the same path that we had experienced when he was first diagnosed as an infant with reflux and aspiration.  The coughing at night, then tons of mucous in his nose and throat, and then the noisy breathing, and then the coughing and choking when eating, and then the rattly chest and then the wheezing and needing Neb's. 

How did this happen?  What in the world is going on?  I had questioned how quickly Henry seemed to recover after we stopped feeding him by mouth and I had him just on the G-tube feeds.  These feeds were with a hypoallergenic formula, I guess I didn't take into account that maybe that was part of what helped him get well.  I thought all his issues were related to the laryngeal cleft and aspiration and reflux, I forgot that when he was just 5 months old the allergist had suggested he might be sensitive to milk proteins and soy.  I guess I assumed he would just outgrow it.  But the longer time went on, the worse Henry was sounding and I knew in my heart that there was something more going on with him.

I saw the pediatrician who listened to him and thought his throat did sound inflamed as it had been before and his chest was rattly in the office as well.   "There's something else,"  I said, something they missed.  "The only thing that has changed in the past few months, is now Henry is eating every food, wheat, dairy, soy--there must be something he can't tolerate."  She set up an appointment with the aerodigestive clinic at Children's Hospital and then suggested that maybe I try eliminating foods in the mean time.  I decided to try to eliminate the big 6.  Wheat/gluten, dairy, soy, eggs, nuts, fish and see what happened. 

In the mean time I considered some family history that seems interesting to me and I'm not sure if it's related or not.  My older son seems to vomit randomly and then goes on with his day as if nothing ever happened.  This happens maybe a few times a month, maybe less.  He will look very pale and almost as if he is going to pass out, his legs will be weak and he is very shaking.  Most recently he also starting having a rash on his face that comes and goes and seems to worsen after he eats, but I cannot figure out the trigger. 

I remembered also that Henry had several episodes in the past in which a few hours after eating he would retch and then go limp, it was so scary, I thought that he was going to die because he would literally collapse in my arms lifeless and then he would be very sleepy and hard to wake up.  The last time he did this was in May when I had to call 911 on his birthday.   The ER sent us home and with no answers and told us to just come back if it happened again. 

We had our aerodigestive appointment yesterday and several things happened that I didn't expect.  The GI doctor told me about FPIES.  He said it is an intolerance to certain proteins in food:  turkey, chicken, rice, oats, squash, beans, peas--to name a few.  Henry's weight is not good and the doctors said that the only way to figure out Henry's triggers would be to do an elimination diet.  Try as I could, I realized that with Henry's diet being so limited it would be best to put him on Neocate in order to boost his calories while trying to figure out what foods he might be sensitive too.    The GI doctor mentioned that Henry's bottom was red, I told him that this was normal and that many times after Henry eats and has a stool his bottom is instantly bright red and painful.  He said this is also proof that he has intolerance to foods.

On the ENT front, the surgeon told me that he wants a repeat swallow study in March to see if Henry is still aspirating in spite of the dietary measures we are taking.  He said that while Henry does not have a cleft, he has a deep notch, and that if he does not out grow the aspiration, it would be worth repairing in the future.

So right now I am just absorbing all this new information.  I am searching the web for new recipes and ideas on how to feed a boy who might not be able to tolerate many foods.  I am also holding on the the hope, that God knows all the answers, even if I do not.   To be continued . . .