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Ditzzy told me to join you guys over here and it seems this is the best place so far! Most boards are for this specialty or that specialty but don't deal with crossover. Tada!!! This is the place!
A life history would take forever so I will just give the highlights of each area separately because they overlap so much.
Height...never really has been a problem. He was in the 78% at birth and stayed there until about 8 months ago. He is now in the 38th I think but has just slowed in his height...not stopped.
Weight...a MAJOR issue. Birth-6 months he was a monster. At 6 months old he was 18 pounds. I stopped BFing at 6 months and he stopped gaining weight immediately. He stayed 18 pounds for 18 more months. He started Neocate Jr in March of 09 and gained 2 pounds in 2 weeks. He was now up to 20. From then until that October he gained another pound so he was up to 21. He started digestive enzyme supplements to see if he responded in October 09 and gained 8 pounds in six months (29 pounds in April of 10) then flat-lined again. He has gone from 29 pounds in April '10 to 31.4 now but he is losing weight again. From March 20th to near the end of April he decided he wasn't hungry at all but we have since gotten that straightened out. Other than that short time frame he has eaten more calories than he needs and either loses weight or stays the same. Right now he is losing weight...slowly but still losing...getting 2000 calories every day. His enzymes are at the right dosage according to fecal fat and elastase tests but he isn't taking things in somehow or at least isn't using them like he should. Around Dec '08 he was getting 3000 calories per day but still losing weight rather quickly for someone who weighed around 18 pounds. I think he was down to 16 at one point in there while getting 3000 calories per day. ---Basically this is the problem that has gotten the most attention and led to focus on the other issues.
Immune System...Wasn't a big concern (of the doctors) until recently. From birth to 6 months Danny had thrush and a yeast infection diaper rash that would not go away with anything. Gentian violet, nystatin, corn startch, nothing helped. At 9 months old, the longest Danny had gone without a fever-illness was 9 days... Before that it was less than 2 days between them. At 11 months old the longest he went was 11 days. After that he had them at least 2-3 times a month until after 2 years old. From then to now he will have frequent spurts of viral illnesses but almost exclusively gets a fever with the flu. In the past 10 weeks he has had strep...no fever...severe bacterial tonsilities that took so long to diagnose that his lymph nodes got infected...also no fever...and a sinus infection. All bacterial.
Respiratory...Danny got croup at 2 months old. That started the horrendous cycle of RAD that has never ended. He was on breathing treatments for 6 months straight and steroids continuously before he was a year old. He never got off of breathing treatments but would only have to take 2-3 a day unless he was sick. He had pretty much stayed like that until this past Oct. He had another bad flare in Oct of last year and was on Xopenex every 3 hours, Pulmicort every 8 hours for 3 months straight. He was on 5 rounds of oral steroids in the last 2 months alone. His allergy/asthma doc put him on Advair and he has only had to have breathing treatments round the clock once (with the flu) and oral steroids once (same). He has needed intermittent breathing treatments a few times for asthma-type flares but not around the clock. His allergy/asthma doc doesn't diagnose asthma unless they have no signs of outgrowing it by age 5 at which point they will do a pulmonary function test to confirm asthma.
Allergies...Danny's food allergies are eggs, milk, soy, carrots, red 40, cinnamon, tree nuts, and strawberries. He outgrew his tomato allergy. He environmentals include mold, dust, cat, dog, trees, and grass. The cinnamon, tree nuts, and mold are more or less anaphylactic (ANA) allergies. Cinnamon may be okay with quick benadryl but his lips swell and if his tongue starts to swell too it is considered ANA. The rest have varying reactions. We may be outgrowing the milk but the current GI disagrees. We will see what happens when we go to Cinci for that part.
Procedures...I cannot remember them all but here is a general overview.
10+EGD w/biopsy 2 of which had pancreatic function tests(PFT).-biopsies all normal, PFT-first...low chymotrypsin, second...missing Amylase, severely low on other 3.
1 Colonoscopy w/biopsies...normal
Who knows how many CBC's---Cyclic neutropenia, cyclic anemia, possible cyclic thrombocytopenia
Other blood work-slightly elevated salivary amylase, others normal but all immune studies are being redone due to age limits when first done(13 months old).
Bone age-done at 2 years...6 month leeway for normal...Danny's bone age was 18 months. He was dismissed from endocrinology.
sinus and chest x-rays-structurally normal, several showed advanced respiratory infections
Cystic fibrosis genetic tests-no mutations found
Sweat tests-#1-39, #2-24---negative for CF
Celiac's genetic screening-positive for one gene...not conclusive for celiac's and no benefit from the gluten free diet on trial #1
Ph probes-2-both abnormal...eventually discovered egg allergy induced severe vomiting.
SDS genetic screening-mutations found
The leading hypothesis right now...that his GI, nutritionist, Allergist, ped, and Hematologist here are waiting for Cincinnati to confirm or rule out is Shwachmann-Diamond Syndrome (SDS). That pretty much explains everything but also carries an extremely elevated risk for AML leukemia. At this point we are supposed to see the doctors in Cinci on June 21st.
If you got through all of this...that means you had time to read a novel. I hope to get to know you guys better!
We're a crossover case too and we love it here. We have no diagnosis, just a hypothesis (probably metabolic disorder) but we have issues in everything from sensory processing to feeding to neurological problems. Sorry you guys have been through so much, but glad to see you here I saw that you're in TN, have you been to Vanderbilt? We loved that hospital.
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
Are there varying severities of Mito? He doesn't have near as severe of problems as the stories I have looked at through your FB but I have never really looked into that and it has never been mentioned...
upper and lower were all normal. He saw an endo once after the bone age was done and he ordered growth related tests...the byproduct of a growth hormone or something and checked his metabolism. At that point everything on that end was normal as well...
Welcome!! your little guy has been thru alot!! How did they eventually treat the yeast infection? Kaiden had a MASSIVE one and his pedi never believed me I ended up putting him on a 5 month course of special probiotics. A yeast overload can cause all sorts of problems.
Can your little guy take raw honey? That helps for enviromental allergies - dust, mold, pollen, etc. Trick is getting raw, unfiltered, unheated honey from a fairly local source.
Not sure if you've tried any of that or if it would help, but thought I'd throw that out there
We got local honey...we can't get it raw but it is better than nothing. We tried 1/4 teaspoon each as we both have terrible allergies and both wound up with throat swelling. :/ That pretty much nixed that in the rear. We do have raw honey that I use to cook...it just isn't local. When we stopped nursing and stopped paci's and bottles it went away after another 2 months with the gentian violet and nystatin. We both had it very badly and we would get rid of it maybe for 2 days before it hit full swing. The allergist tested his immune system about 7 months later but it was pretty much normal. The hematologist now rechecked the quantitave side of his immune system but doesn't want to do any qualitative tests until after he sees Cincinnati. He had a normal white count on all sides and yet a scrape on his knee would get infected within 6 hours if I didn't put peroxide and polysporin on it and cover it with a clean bandage. He had a CBC done the same day...right before we started an antibiotic for a sinus infection that seemed to help with keeping his knee better too. I could have told her that...and did...but she still wants to wait a month to do anything more. GRRRRRR....