Christmas is just gravy - our real gift came today!
We received a phone call from 'Lou's Dr. His IgF1 is 99 after a month off HGH. That's in the normal range!! He's producing his own growth hormones!! He's still on a heart monitor for the heart abnormalities that started about 9 days after quitting the shots that might be (unrelated) SVT (the pediatric cardiologists's working hypothesis) or that might be his extra sensitive body trying to adjust to the sudden loss of growth hormone (my working theory) Currently, there have been no more episodes since his hospitalization at Thanksgiving, and his energy and appetite have returned after the 1st couple of weeks off the shots.
As recently relocated people, I can share our news with friends and medical professionals who've known us for the last year, but nobody in our daily lives right now can possibly know what this means to us. I knew I could share it here and it would swell the hearts and overflow the eyes of so many ppl that have gone through this with us.
I am especially joyful to share it with so many that helped us so much through the darkest times. Our nurses and Dr.s, friends that helped with the fundraiser for the hospitalization at NJH, friends who held back the tears and tried to act normal when they saw his skin falling off. Friends that held back the tears and tried to act normal when they saw me falling apart. This is for all of you!
8 years ago we had a baby who was born breaking out in hives and bleeding from his GI tract because of the dairy in my diet and breastmilk. He was almost under 5 lbs before we got him to finally gain some weight.
By 18 months, he was allergic to the entire top 8 food allergens, everything environmental and barely gained weight or grew.
By 3, he was catastrophically ill. His sheets and pillows always had bloodstains on them, his skin was always falling apart, he could eat about 9 foods, he didn't grow, he lost weight constantly, he didn't sleep, he didn't play. All he did was nurse and scratch and cry. His IgE was over 12,500 when 0-120 is normal.
We didn't know why his immune system was attacking him like this. His Dr.s were testing him for leukemia, cystic fibrosis, genetic metabolic disorders and immune diseases. One specialist told us that he would have leukemia, lupus or some other critical auto-immune disease by 12 if we didn't find out what was putting his immune system into overdrive.
One specialist told us that a test came came positive for a rare and potentially fatal metabolic disorder called glutaric academia, type II. For 2 weeks of further testing, we lived with the reality that he might not survive childhood, no matter what we did.
Another specialist suspected EoE and wanted him weaned off all food and breastmilk and put on a feeding tube.
We lived in Dr.s offices and hospitals and if he'd slept for even an hour at a stretch, I know i would have had the breakdown that was trying to burst me at the seams.
When it started to leak out despite focusing every minute to keep my son alive and safe, what saved me from completely falling apart was the support from the people that stood by us.
Our pediatricians - esp Dr. Cheryl, who was there from the beginning, Dr. Dorsey, Dr. Bryzik, Dr. Elton, all of whom never doubted me when I described his unprovoked autoimmune flare ups. Dr. B, who took our calls whenever, wherever and whom we saw so much that my husband referred to him as "your Dr. husband" - and who also listened to my instincts and had an open mind about my unorthodox treatments.
Dr. Lowry, Dr. Doshi, Dr. Dekelbab, Dr. Aughton, Dr. Tulin-Silver, Karen and the staff at Physician's Compounding Pharmacy, Mya and the staff at Value Center Pharmacy... you all helped me process and learn and help our son and went above and beyond your professional standards and requirements in doing so. I absolutely attribute both my perseverance and his eventual diagnoses and recovery to the support system all of you formed for us - a more integral and frequently utilized one than even our families, at times! Speaking of family, Dr. Kaye and Dr. Pillow also helped us through this enormously stressful time that could have broken a lot of marriages.
Every Dr. we consulted took one look at him and his test results and moved heaven and earth to write long letters on his behalf - to get him approved by our insurance for new treatments, to get him into specialty hospitals, to get special genetic testing done, to do whatever he needed. I was treated like a colleague in his care and respected asset in diagnosing my son - and I've never forgotten it and I've never been able to settle for anything less ever since. For that also I sincerely thank you.
Our friends - who poured out their hearts and gave up their time and helped me process and untangle confusing symptoms for hours on end. Who stood by me when I was too depleted to give anything back. Who reached out to me when I became a hermit and never left the house with him. Who celebrated every hard-won improvement with us.
His open skin disorder was diagnosed by 4 and I don't hesitate one bit to give myself full credit for sticking to the soak and seal protocol I learned there like his life depended on it (b/c as far as i was concerned, it did) and thereby facilitating his nearly complete skin and allergy recovery.
By 5, his diet was miraculously expanded, his skin was like a glowing pearl, and his life was a whirlwind of trying to go to school part-time and manage the setbacks that environment gave him.
But he still wasn't producing growth hormone or growing. At 5, he was the size of an 18 month old. He wasn't even big enough to open the bathroom doors in his kindergarten room. At the time, Dr.s theorized that the same genetic aberration that left him unable to produce the skin protein he needed also left him unable to produce growth hormones.
We started the shots and he grew better than predicted. Now he's been on them 2 years without a hitch and advancing bone age prompted his specialist to recommend a 4 week trial off them to see if he might actually be able to produce his own.
Today, we learned that he is starting to!! Nobody that knows us today will understand what this means to us. This is the 2nd part of what was stopping him from having a normal life, suddenly righting itself. The 1st part, I devote my life to maintaining -and I'm teaching him to do the same. We give him the hydration and barrier his body can't make, several times over, every single day and night. But the growth hormone - necessary for not only growth and gain, but also well-being, optimal healing and heart and lung function - we didn't think there was anything anybody could ever do about that except make him take the shots (and all the risks) for the rest of his life.
The theory now - with 2 more years of medical advancements and knowledge - is that when an inflammatory process or response gets out of control over a long enough period of time, it suppresses growth hormone production - sometimes for years. We already knew that certain catastrophic life events make children stop growing like death of a parent, divorce, disaster, etc...and we also know that certain diseases also take such a toll that a child is left without the reserves to grow, like cancer and some genetic disorders - but there was little research into inflammatory diseases and their effect on HGH.
So, seeing for ourselves that it was apparently 'Lou's level of inflammation that stopped production of his HGH is confirmation that we have really calmed that down and returned him to such a state of normal, that his basic hormonal functions are returning. It's like a giant, retroactive paycheck for all our hard work. And I want to be sure and give everyone their percentage. I can't even begin to describe how it feels. Only a picture will suffice.
Along the way we've had our share of detractors. Friends have ridiculed us for the obsessive management of his environment that he needed for so long. Family has ridiculed and even shunned us because of foods we've had to cut out of our family's diet. People who should have known better have failed to keep him safe by (not) removing dangerous allergens that he came into contact with. I've been called a Munchausen mama and heard people gossiping that I thrived on the perception that I had a sick child. People have suggested his issues are psychosomatic and that he's just a high-strung, nervous personality - a hypochondriac.
I gave these people and thoughts no more time in our lives than I'm giving them in this writing - only a tiny percentage! The only reason I bring it up at all is because I found along our own journey that this is something very common to food allergy families and it sucks.
My best advice is don't let it affect you other than to fuel you to keep spreading education and awareness. Don't ever let it make you doubt yourself. Listen to your instincts. Nobody knows your child like you do.
More and more medical knowledge is showing that allergic and inflammatory processes have much more far-reaching symptoms and consequences than we ever knew. Giving your child with a mild allergy "just a little" of their allergen because of family pressure at the holidays is only harming them exponentially - even if you don't see an immediate reaction. Inflammation is cumulative, and once your bucket is so full it tips, it's almost impossible to get it back upright without turning your whole world inside out. If that means losing friends, so be it. If that means avoiding unsupportive family, your child's health is worth it.
Inflammation is an immune response. The immune system is almost entirely located in the gut. Healing and maintaining gut health is absolutely vital to everyone for optimal health, but it is critical to children with inflammatory and food allergy issues. In our culture, food = socializing. Be prepared for backlashing, undermining and ridiculing in your quest to eliminate the triggers for your child's inflammation/ allergies.
I've come from watching my child slip away more and more every day and fearing we would lose him completely to now receiving more and more confirmations of his returned health and functioning. We feel like we have a completely new child some days, he is such a different little person with his recovery.
We didn't know his horribly inflamed state was domino-ing into so many other important biological processes, even his Dr.s weren't sure - but had we listened to the pressure to "Let him have a little, you can just give him benadryl!" or "You don't need to remove all the carpet from your home, we'd just keep him on Claritin long-term!", I know we wouldn't have gotten the test results we just did and the confirmation of what a huge toll his allergic process was really taking on him.
It doesn't happen often, but this is one day I wish we were still in Michigan - his Dr.s there would be as thrilled as we are. It's not the same to see the puzzled smiles of the Dr.s here when we discuss his latest test results and they see me cry. They have no idea how far we've come and what it's taken to get here - they've only known a vibrant, energetic and healthy boy for the last year! Then again, that's a sentence I would have given all that I own to be able to write 4 short years ago, so maybe I am going to practice enjoying exactly where I am right now for a change.
Wishing all of my loved friends, family and fellow inflammation and food allergy-affected families the same this holiday season.
