Friday, September 25, 2015

Lord have mercy

How do I begin to update you on the where about's of my heart and the roller coaster ride of emotions I've experienced over the past few weeks?  For those of you who are just joining in, let me give you a little history.

Our seven-year-old Storm has always been a little bit of a handful.  I often say, "for the first twenty-four hours of his life he was the calmest baby ever".   Sometime around midnight on his first eve home, the crying started and it basically never stopped.    He was "colic," the doctor's told me, "he'll grow out of it".  So I waited.   First I had a colic infant, then a colic toddler, then a colic child.   He just couldn't sooth himself easily and he still can't. His emotions have always been extreme for the situation.  He's extremely happy, extremely angry, extremely sad.  He switches from high to low in a heart beat, and back again.   He goes from zero to sixty and this repeats over and over in the course of each day.  It's down right exhausting. 

Around the time he turned eighteen months or so, his tantrums got worse and started to last longer and longer.  He always had something to say, but his speech was very unclear; we figured that was what was driving his emotions.  "He's frustrated," the doctor's told us "because you can't understand him."  Like any good parent we enrolled him in speech therapy hoping this would be the solution.

Though he remained in speech therapy, the tantrums continued.  Our speech therapist recommended we see an occupational therapist for further evaluation since he could hardly sit still or pay attention during his fifteen minute speech sessions.  We did so, and were told he had a sensory processing disorder:  sensory seeking, they called it.   This made sense to us, because Storm was like a ball of energy.  He could literally, get up at 6:00 AM, ride his bike for three hours, go to the pool for four hours, come home and ride his bike for another hour, play soccer for two more hours and never get tired.  From dusk to dawn he was going going going; like a wind up toy.  So we added occupational therapy twice a week, plus a weighted vest for sensory problems, daily brushing, and a number of sensory diet exercises.  But the mood swings continued as did his endless amount of energy.

Enter kindergarten, and asking a child like this to sit still was like asking a bee to stop buzzing.  The school was calling me every other day about his behavior and him rolling around during circle time, bumping into kids in the line, and seeming like he wasn't paying attention or listening. 

We paid for a two day evaluation to rule out Autism, ADHD and other mood problems.  The testing center gave him an ADHD diagnosis and we were relieved.  He had a lot of Autistic like behaviors, such as the sensory problems and delays in his social relating, delays in his emotional regulation, very rigid and inflexible thinking and some restricted interests, but not enough to diagnose him with Autism.

We started him on ADHD medications and my husband and I took training classes on how to manage children with attention and behavior issues,  it was amazing for the first few months.  However, his behavior gradually worsened again.  He seemed agitated and angry so the doctor said he needed an antidepressant because irritability in kids is an indication of depression.    Reluctantly, I added this medication, but within a few months he was acting even more aggressive, he became combative.  He was hitting us at home, he was extremely angry, and at the same time extremely sad. 

He told me right after his seventh birthday that he wanted to kill himself.  When I was waiting in the car line at school to pick up my other children, he jumped out of the car and ran towards on coming traffic.  I tackled him in the school yard in front of hundreds of smiling mom's and dad's happily picking up their children for the start of Christmas break.   It was like the whole world slowed down, like a dramatic movie scene.    Only this was my real life.  I carried him kicking and screaming to the car and that night he screamed for hours before he finally wore himself down enough to fall asleep.    It was Christmas time last year, that I sat glazed over, in the psychiatrist's office feeling the shock of the words "he has bipolar."

I accepted this diagnosis, because I respected and trusted this doctor and because I was so desperate to help my precious son, I was so desperate for answers.  My son was literally climbing all over the doctor's office that day like a wild animal.  It was like he was lost somewhere inside that body, and it was a deeply painful and dark time.  Later I have realized that this worsening behavior has to do with his sensitivity to the medications.  At the time, it made him appear like he was bipolar.  We  followed the doctor's advice and started him on new medications for bipolar.  Like every other therapy that we had tried for him, it helped for a while and we had hope.

He seemed to do well again for about four to five months, but then all of his "behaviors" started to creep in, the irritability, the anger; what looks like purposely annoying his siblings:  getting in their faces, blowing raspberries, making lots of vocalizations, and obsessions with his special interests.  The doctor added a new medication and within twenty four hours it was like deja' vu of last Christmas. 

What I had most feared would happen did.   Storm became so out of control that we could not control him ourselves, he was hitting us, kicking us, spitting on us, calling us names.   If he had any curse words in his vocabulary he would have cursed at us, but thank God he doesn't know any bad words yet!   He was throwing anything and everything in his immediate reach.  After almost half a day of this and the inability to call him down; We called the police.  We had our seven-year-old admitted  to the psych ward at Children's Hospital and our hearts were broken.  

Though I have grieved over and over, the many things I have had to let go when it comes to accepting Storm's challenges, I cannot begin to explain how scary it is to see your beautiful child suffering in this way.  This night, it was as if my own heart was ripped out of my chest.  This feels like too weak to stand, too hard to breath sort of pain and desperation.  It's the kind of face on the ground, laying prostrate before God, gut wrenching cry "Lord help me."   I could hardly muster the words through the gasping, deep chest, heaving weeping I did that night on the floor of my bedroom.   I've cried out to God many many times concerning this boy, but this night I would have given my life in exchange for his freedom from whatever holds him captive.

He is still currently in the Day Treatment program at the Children's Hospital.  This a step down unit from the inpatient treatment.  He has nurses and a counselor, an occupational therapist and a doctor.    I've been told that he was on perhaps too high of a dose of this last medication, as well as the wrong medication for him.  The Children's doctors do not think he has bipolar, and how I do hope they are right; but I will now hold loosely to any diagnosis from here on.  The label doesn't matter, I just want to get him the help that he needs. 

We are finding through this process that he does have quiet a few developmental delays including several learning disabilities, which makes sense that all of his behavior issues peaked at the start of second grade.   Several doctor's and nurses feel that he really behaves like a child on the Autism spectrum, but for some reason, doesn't qualify for this diagnosis.  That is a topic for a separate post, but if Autism is really a spectrum disorder, than it would seem that he is somewhere on this spectrum, even if it's at the end of it.  

The doctor's explained that children with neurological differences often respond much differently to medications than their typical peers.  This makes a lot of sense to me; as Storm has had more agitation with the stimulant type medications for ADHD.   The doctor's feel very strongly that he does have ADHD, sensory integration issues and a mood disorder.   This poor child has a lot of things he has to overcome each day to simply function.

We just finished his second week in the hospital and the progress is slow.   I feel relieved that we are in a place with people monitoring Storm's reaction to the medications, more testing is being done, and we are learning strategies to manage his sensory issues and the extreme anxiety they cause.   I have walked through one of the darkest places I have ever been and I still do not have all the answers.   I am still learning.

I'm gonna just come clean with you all.  Last year when something similar happened, my first reaction was the opposite of crying out to God.  I searched the internet, I went into "fix it" mode as I often do, and I researched and called doctors and therapists and tried everything I possibly could to help my son.  For seven years I have known something was unique about him.  I have known that he is different from my other children, I have known that he struggled with things that his peers did not.  I have been searching for answers for years.  We have tried, speech, OT, gluten free diet, GAPS diet, supplements, weighted vests, exercises, medications and the like.   The things that helped my other son did not help Andrew and this did not make sense to me.

 I have left no stone upturned in desperation to help my son.   If you just got a diagnosis, or if you are in the darkness right now, I first want you to know that you are not alone.  I know how you feel, I know the desperation of a mother who wants more than anything for her son to just be an average little boy, who is happy and care free.  It is so painful to have a child that is angry; screaming that he hates you, hitting you day after day.  It is so painful to see little glimmers of that child's sweet personality for a day or a week and know that that sweet happy child is somewhere in that body; but as soon as you have a glimpse of it, it's ripped away from you.  It feels like your child is dying every day and you grieve it as such.  And grieve we must, as this is part of the process of finding our own healing, which I will discuss later.  I have a sweet friend who frequently grants me permission to grieve and reminds me that it's okay to go through those actual stages of grief: Shock/Denial, pain/guilt, anger/bargaining, depression (reflection/loneliness),  reconstruction/working through, acceptance/hope (

Wherever you are in these stages, I welcome you here, this is a sacred place.  You will not be judged here, you can be angry, you can cry, you can share your pain and know you are not alone. I am relieved right now that my son has Autistic like features, it really explains a lot of the funny things that he does, like obssess about tornadoes and firecrackers and graffiti.  Why would a seven year old care so much about graffiti; desperately searching for ways to draw certain letter styles when he struggles still with the actual alphabet?   He has a love for working with his hands and especially decorating.  Give this boy an occasion and he will decorate better than Martha Stewart!  He's got skills that would make her blush! 

Had you told me he was slightly Autistic several years ago, I would have been devastated, but I have come full circle to a place where I am no longer desperately trying to fix him.  As my dear friend Rebecca says about her son with PDD-NOS, he's NOT BROKEN!   This is how God made him, rain or shine, sunny or cloudy, up and down, my spicy sweet Storm.  He is my answer to a desperate prayer for a son. And God is not about to give up on him or I now.

Believe me, I know we have a mountain ahead of us.   I know it's not going to be easy.  I know there are going to be a lot of mudslides and treacherous terrains.  Yet I have found freedom in letting go as I was literally forced to, when I left my son on the psych unit last week.  God took back what was already His; what I had dug my heels into and said "Not this part of my life, this is MINE!"  I finally came to the end of myself, the end of my resources, the end of my solutions, the end of my, "but Google said this was what I should do".  I fell on my face and I cried out utterly destitute: "Lord, please help me. Lord have mercy on me and my son." 

And in that moment I found peace.  Nothing about my circumstances changed.  But I changed.  I let go of my striving to control, fix and manipulate the outcome of my situation.  I let go and I let God be God, cause guess what--He is a way better God than me!  I'm not a quick learner and I'm new to this letting go thing, but I don't intend to go back to the old way.  It was full of pain, and stress and agony and disappointment.  It was full of despair and fighting to have something I could not obtain.  This boy is God's boy, He made him and He made me to be his momma.  I know I can't do this on my own.  I desperately need God's help and the help of those God has put in my life.    I am done fighting, I am done striving.  My new posture is prayer and surrender; the result is a peace that can only come from  a God who never changes, not my circumstances. 

In my next post I will discuss "Caring for the caregiver," and ways those of us taking care of chronic kiddos can attempt to stay sane! 

Wednesday, September 23, 2015

Henry's Story--a summary

Baby Henry was born on May 21, 2009 and shares a birthday with his oldest sister Hannah.  He was, as she puts it, her "Birthday present." He certainly is our gift from God. God has used him, since his conception, to bring us to our knees and teach us to TRUST God's plan for our lives.

Henry was our first child to be born with hair and lots of it! He has a full head of jet black hair and is truly the cutest thing ever.  For the first few days of life he had the most quiet disposition. Then he started screaming.  He screamed night and day. After a few days of this, I started thinking, " I think this is more than just colic".  I asked our pediatrician to put him on reflux medications, since our first son had severe reflux; and also because not sleeping EVER, gets old very quickly.  The medications seemed to work for a while.  However, every time we attempted to wean Henry from his medications he would become fussy again. 

Between three-and-a-half and four months of age he started to have a rattle sound in his throat.  Every time I picked him up, I could feel this rattle in his chest. It seemed like he needed to clear his throat but he couldn't.  His voice was sort of hoarse. It was kind of cute at first, when he started making noises, because he was enamored with the sound. He thought it was funny and would coo in his raspy voice.  But it never went away.  And then the symptoms got worse.   His nose was congested with severely thick mucous which I had to suction out of him several times a day.  I started to worry that he had cystic fibrosis or some immune system disorder.  We went to the ENT and our pediatrician put us on antibiotics.  The ENT doctor sent us to the GI doctor who attributed his problems to reflux and increased his dose of anti-reflux medications.  Yet nothing changed.  Out of desperation I brought him to an allergist, yet everything came back normal. She suggested I try to get off of all milk products including casein and whey to see if this helped. It seemed to help a little so I stayed on the diet, but he continued to have respiratory issues.

After months of this I began to feel helpless. I went to doctor after doctor and no one seemed to have an answer. Henry was put on breathing treatments because he was wheezing with every feed. However, he continued to get worse.  Also Henry had seemed to stop growing and was looking more pale every day.

In January Henry had a swallow study in which they watched Henry eat and drink under fluoroscopy. Finally, what I had suspected all along was proven.  He was aspirating.  Every time he drank thin liquids a little bit of milk went into his lungs.  That's why he was wheezing and so congested. His body was working overtime to try to protect his lungs.  I felt a sense of relief in finally knowing what was wrong with him. Yet at the same time I felt so angry that the doctors failed to listen to me for months and that it took so long to get a diagnosis.

It took a whole month to schedule a bronchoscope with the pulmonologist and ENT Doctors.  The bronchoscope revealed why Henry was aspirating.  He had a rare birth defect called a laryngeal cleft.  There is a small connection between his airway and his esophagus which allows the liquid that Henry drinks to go into his lungs.   He was admitted to The Children's Hospital for failure to thrive. At first we stayed for one week.  They sent us home telling us to thicken his feeds. We tried this but he continued to cough and choke and we were re-admitted the next week for a scary choking episode he had at home.  We ended up staying in the hospital for a total of twenty-five days.  They ran tons of test on Henry and it was one of the darkest times I've faced in my life.  I felt so alone, and so isolated in that hospital room.  I was separated from my other children and from my husband and felt disconnected from the outside world.  As a nurse, it gave me great insight as to what people go through who are in and out of the hospital with a chronically ill child.  It is the hardest thing I've ever experienced.  Worse then the isolation was the pain of watching my baby suffer through all the tests, sedation, IVs and blood draws. It broke my heart.

Even after being on steroids and thickening his feeds his lungs did not improve.  Finally the gastrointerologist placed a PH impedance probe.  This is a probe that went in Henry's nose and was in place for twenty-four hours.  It showed that he still had severe reflux and that while the thickened feeds were easier to swallow; after he ate, much of the food refluxed back up into his esophagus and potentially was aspirated later through his cleft.  The doctors suggested he have the Nissan fundoplication procedure and G-tube placed.  This was one of the most difficult decisions we had to make for Henry.  The Nissan is a procedure in which they wrap a portion of the stomach around the esophagus to tighten the esophageal sphincter so that liquids and foods which are swallowed cannot come back up.  In a baby this means they can no longer throw up or even burp on their own.  That is why it is necessary to also place the G-tube, which is exactly what it sounds like.  It is just a tube that is connected to the stomach through which you can feed the baby liquids and also open it up and allow the baby to burp or even vomit if necessary. 

The day he had the surgery was the hardest day I've faced yet. He was under anesthesia for three hours. Those of you who have had a child go under for any length of time, know what this is like. I prayed constantly and I was so worried for him. He came out fine and slept the whole night. I looked at the tube in his stomach and wondered if I made a mistake. I knew we didn't have any other choice, but I cried and cried over the decision to change his body this way.

In an effort to help Henry gain weight the doctors had me mix formula with my breast milk and put it through the G-tube.  Henry didn't seem to be gaining much weight or tolerating feeds well.  He would frequently wretch after feeds and have to be vented (this is when you let excess air out of the G-tube).  I felt that the G-tube was actually making things worse.  After a 911 call on his first birthday after he had a small bite of cake, the ENT doctors told me I couldn't feed him any more by mouth.

As soon as Henry turned one I started making my own G-tube feeds and stopped giving him formula.  Looking back I see that my G-tube formula was not too far off from the GAPS diet which you can find out about via the links of the right side of my blog.    I wasn't satisfied with the ENT's statement to not feed my son and that "I'm not sure if he will ever be able to swallow like a normal child."  I vowed to get rid of the G-tube as soon as possible.   

In August of 2010 we went to Cincinnati Children's to have Henry airway scoped and have his laryngeal cleft repaired.    However, to our surprise, when they scoped him, they found that he did not have a type one cleft as originally diagnosed at Children's in Denver.  Instead, they said he had a deep notch which like a cleft, could be contributing to his aspiration when he becomes more inflamed.   All his respiratory symptoms had resolved since I had placed him on what I call my "miracle grow" formula.  They told me to go home, remove the G-tube, and start feeding him solids by mouth.  We went home and slowly increased solid foods, as at the time he was living solely on my home-made thickened formula.    Eager for him to gain weight,  I started adding all sorts of foods into his diet.  I gave him everything soft and then progressed to more textured foods.  I did not limit him, I was focused on calories.  Now knowing that he did not need airway surgery, I thought of nothing else except getting him to gain weight.  However, after a few weeks of eating, all his breathing issues returned.  He was congested and his throat sounded just like it did when he was aspirating and swollen.  I was perplexed--if he didn't have a cleft, what was causing the inflammation.  Also, I realized that he was having more diarrhea again, which never really went away, but seemed to be worse now.   Then he started wheezing and needing Albuterol again.  I went to the pediatrician and she was also confused--was there something that they missed?  And why was he still not gaining weight? 

In January of 2011 Henry's new GI doctor diagnosed him with FPIES which stands for FOOD PROTEIN INDUCED ENTEROCOLITIS SYNDROME.    It seems that Henry reacts to the proteins in foods and when he eats the wrong things this wreaks havoc in his gut.  This explains the trips to the ER in times before when he would go limp after vomiting, but the doctors never made the connection with food intolerance.  We began an elimination diet to try to figure out what foods he can and can't eat.  At the time, Henry was still aspirating and could still only drink thickened liquids, nothing thinner than honey, our ENT said it's possible that his swallowing issues are related to FPIES.

Henry was never behind in his developmental milestones so there was no other reason for his swallowing problems.  The doctors wanted us to trial him on a restricted diet and re-test his swallowing in March of 2011.    When March came around I called the aerodigestive team at the hospital and told them I knew he was still aspirating.   By that time I had learned all Henry's aspiration symptoms far too well.   He would constantly sound like he had something stuck in his throat, like he needed to cough or clear it.  His chest would rattle after eating or drinking, I knew I needed more time.  I had been doing the elimination diet for only eight weeks at this point; in my mind, it took Henry more than a year to get as sick as he was, maybe he just needed more time to heal all the inflammation in his gut and airway?

We cancled the swallow studies and scopes.  I pressed forward, keeping Henry on only a few foods, basically, chicken, rice, his thickened Hemp milk formula and squash and carrots.  Around the time that he turned two years old his throat was starting to sound clearer.  I started thinning his drink.  About 6 months after starting the elimination diet,  I gave him a glass of water, for the first time in his entire life, he drank a clear, cool drink of water and he didn't choke.  He said "yummy."  I bet! 

And we didn't look back.  I actually never had them do a repeat swallow study, because it was so obvious that he was completely fine.  The weeks went by and he drank Hemp milk and water without thickener and he did  not cough, he did not wheeze.  It was a miracle. 

I have to confess that again looking at calories, I felt that I had to add more as he was not gaining weight and truth be told, I might have added in more things to his diet faster than I should have.  He seemed okay, and I was keeping him off of gluten but I starting making a lot of sugary type foods in an effort to get him to eat.   Around Sept of 2011, he started getting rashes around his mouth and he was still having weird diarrhea that wasn't completely under control.   Again, I was so happy about his respiratory and swallowing issues being improved that I wasn't quick to try to eliminate things again.  I couldn't help but wonder, with him eating so many things, why he wasn't gaining any weight. 

Oddly enough about 6 weeks or so after the diarrhea became worse again I brought Henry into the ER for severe stomach pain that had him curled up in a ball and crying for almost 12 hours.  He had a complication called intussusception, which is an emergency and has to be fixed right away before the bowel starts to necrosis.    They performed a horrible procedure called an air enema to straighten out his intestines and thankfully he didn't require a surgery.  I asked the doctor if this might have to do with his FPIES, I wasn't surprised when they answered "we really don't know if there is a correlation"   However, it is interesting to me that FPIES seems to cause inflammation in his entire gut from mouth to anus and intussuception is caused by possibly virus' or inflammation or other causes that doctors don't really understand.  I personally, think that something in Henry's diet again was not working for him and that lead to the intussuception. 

Two weeks later Henry started having blood in his stools, and I rushed him back to the ER but he did not have intussuception again thankfully.  His appetite continued to decline until he would hardly eat anything and days went by in which I was desperately just trying to get him to take in fluids.  I decided I would need to do something soon, as he had already lost one and a half pounds.   At 30 months old he weighed only a little over 23 pounds.  I could see his ribs and when I picked him up he felt so thin.  I brought him to the doctors again, but they had little suggestions other than to put him back on Prevacid, the reflux medication that he had been off of for a year.  I asked why would I put him on this if he wasn't having any reflux symptoms?  The doctor just said to try it, since they didn't know why else he was refusing to eat.  
 We went to Cincinnati Children's Aerodigestive clinic and Henry had scopes done by the top ENT, pulmonary and GI doctors in our country.   Miraculously they told us that Henry did not have a TRUE laryngeal cleft but merely a grove, after a few months of not eating by mouth at all, they did a swallow study and gave us the okay to take him home and to start SLOWLY weaning the thickness of his liquids.

Though Henry's lungs looked better after a few months of not eating or drinking by mouth, he was still incredibly small and the doctors were concerned about his growth.  The nutritionist told us to start adding more foods into his diet and to butter on everything and even try cream.   Desperate for Henry to gain weight I did exactly what she said, I put half in half in his G-tube and within moments he was violently retching.  I  assumed it was just that he wasn't used to the fats, I didn't realize he was reacting to dairy.  I continued to give him things like toast with butter, waffles and anything that seemed fattening.  He was eating but not gaining anything, he was having profuse watery diarrhea each day.   Also, all of his symptoms that had disappeared when we started my homemade G-tube feeds had returned.  The silent refluxing, gagging, mucous in his throat, the coughing, the hoarse voice, wheezing and difficulty breathing, all the symptoms returned in earnest.  The GI doctor looked at Henry and asked me, "Is his abdomen always this bloated?"  I proceeded to tell him that yes, it had always been that way, it would be worse a few hours after certain foods, I explained how he retched and sometimes became limp, pale and clammy and how no matter what  I did he had profuse watery diarrhea every day.  The GI doctor told me that Henry had something called FPIES, or Food Protein Induced Enterocolitis Syndrome. 

A light bulb went off in my head.  Henry had never had a true laryngeal cleft.  He had always had severe reflux, and aspiration.  His airway was inflamed, his abdomen was distended,  His entire GUT was inflamed.  The GI doctor told me to try an elimination diet, to start him on NEOCATE for a few weeks and then slowly add foods back in to try to figure out what foods were causing his symptoms.   We tried NEOCATE but by the third day his belly was swollen and hard and he was crying and in so much pain.  I decided to stop the NEOCATE, no matter how hypoallergenic it supposedly was, it was hurting my baby!  I modified my homemade G-tube formula and  took out all the high allergen foods from his diet.   Within several days all of the aspiration issues resolved.  He still could not drink clear liquids, but after six months on an elimination diet void of gluten, wheat, and corn, I was slowly able to wean the thickening agent out of Henry's drinks.  One month after he turned two years old, he took his very first sip of water.  He drank it, he didn't choke, he didn't cough, he didn't turn blue.  And that was it, he wasn't aspirating anymore.

The final piece was Henry was STILL having diarrhea and he was not growing.  For several months I had been reading about a specialized treatment called GAPS, a diet designed to HEAL and SEAL the gut.   When I read the book, I knew this was the missing piece to our puzzle.   Though I was afraid to eliminate the small amount of food Henry was eating I was determined to actually heal my son, once and for all.  After all we had been through what could I have to loose?  So we started our GAPS journey.  The rest is history.  Literally.  The only reminder of the old days, is a small scar where Henry's G-tube used to be.   If you want to find our more about GAPS please check out the link on the right side of my page and be sure to join GAPS kids for support.