hi again, i have posted in here a few times about my son baylee. well... he is now 2.5 years old and we have had a bunch of testing done and found some answers but still have no unifying diagnosis. here is a background list of symptoms and diagnosis he has..
FTT, enlarged liver, low and sometimes high blood sugar that is hard to stabilise, myoclonic jerks, allergies, MSPI, sleep apnea, low oxygen levels while sleeping, high glycine and another one was high also but cant remember the name
levels in the blood, aspiration from reflux, unable to grow even though he is on a fantastic amount of calories, malabsorbtion especially of fats and proteins, PLE, blood in stools all the time, mucousy stools, runny stools, mild developmental delay, did have severe speech delays has now caught up with therapy,walks on his toes, respiratory arrest after general anisthetic, currently 11 kg which he has been for about 12 months after he had been on TPN for 3 months due to severe malnourishment from a completely paralised gut which resolved with medications and gut rest... probably more but i cant remember right now.
he has had these procedures done..
gastrostomy tube inserted
nissen fundoplication (he has since undone that one)
TPN
GJ tube placed (since has fallen out and saw no point placing him under a GA if we could make do with a straight G tube.)
MRI - no answers there
multiple endoscopies and sigmoidoscopies with biopsies
he is on these meds...
amitryptaline, domperadone, flixotide juniour, ventolin, vitamin supps, omeprazole, movicol and feeds on neocate as he doesnt tolerate the neocate advanced. he can also have rice and pears.
he also now has a little brother who is now 7 months old and presents the same but is ALOT worse. he was nearly taken from us when he was 6 weeks old due to a severe bowel bleed from a necrotic and ulcerated bowel. it affected 1 and a half foot of bowel. he was in the PICU and was a very sick little boy, he now has the symtoms baylee has and also has been dx with eosinophilic eosophagitis and gastritis aswell as lymphonodular hyperplasia of the bowel and inflammatory cells in the bowel through biopsies. he has been skin prick tested for allergy to neocate and elecare and it was a positive ++ so we are running out of options to feed him as everything we try he is allergic to. he has anaphalactic type reactions aswell as gastro intestinal reactions. they have him in the hospital at the moment on a carb based feed with added amino acids, LCT fats and sugars. we dont knwo how long that can sustain him for as it is lacking in protein and carbs. its not enough for a long term option. he has aspiration issues also so is 100% tube fed so that minimises our options also. we have tried pear and lamb with complete failure they both resulted in GI bleeds and anaphalactic type reactions... what would your advice be to keep our son away from TPN and to keep him on some sort of enteral nutrition? he has leaky gut syndrome so is a HUGE sepsis risk there for we are super hesitant to put him on TPN.
sorry this is so long but i am sooo scared for my boys and really needed a second opinion. thank you so very much for your time and for reading this long winded complicated post. LOL.
i guess what i was wanting to know is what can cause high glysine and what is your opinion on all of this? also what can we try to keep our second son away from needing TPN and keep him going on enteral nutrition?
tamika xxx
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