I have been wanting to post here for over a year, and never know where to start... then more comes up... Have to start sometime tho! A mommy friend of mine suggested I post on Mothering for some advice, support, and help. I kind of want to introduce us and get to the point.. start searching for support...
My name is Jessica (26) I have 3 boys, 7, 5 and almost 22 months. I am here for my 22m old Ocean. What we have learned over the past 22 months... hopefully its not to much to soon... and hopefully it makes sense.... i wish i would have done this sooner..there is alot to say
After writing everything it sounded horrible So I wanted to say before you read the list of "stuff" Ocean is the haaaaappiest almost 2 year old I know... He knows 10 signs and can IMO communicate very well! He is soooo smart.. He in the past 2m has started to pull him self up on everything and walk around it.. push his toys.. <3 hes a super scooter still! he started to scoot about 17m old .....ive been convinced since forever that its a huge food thing with ocean... i know its a nutrient thing and I just need to keep getting more info and help on figuring out what and how to help him! Its super frustrating to know these things and not know why its happening...
-born at 41 weeks..emergency c-section..prolapsed cord for not even one second...
-"routine" resuscitation at birth.
-5lb 11oz (same as DS2)
-He is currently 18.4lb and 30inches @ 22m
-His head has always grown at "age" hes on the charts for that.. dont have my notebook or id have percentile...
-Pediatrician considers him FTT d/t poor growth.. BUT genetics specialists say his weight and height are proportionate so he isn't technically FTT
-Fecal fat test @ a year old showed poor absorption of fat soluble nutrients (a, d e and k)....they r gonna re do it..
-He has GI problems "constipation" and had a colonoscopy at 15m old.
-Recently had a test to show how fast food gets through his GI tract and he was uncooperative but it showed things moved very slowly.
-He takes a half cap of mirlax every day to help soften his stools. it only helps a little.... xrays recently showed he was pretty backed up
-He is on pediasure as a supplement to help gain weight and for extra nutrients.
-always has been a poor eater... eats small amounts all day.. literally he eats ALL day just small amounts with small breaks... and doesn't like much... or many textures
-He has always been mucusy and snotty .. has been sick since 3m but his blood tests show immune system is good...and so far tests show no known allergies to anything.... still going to do more tests...
-cystic fibrosis test neg
-celiac test neg
-3 chromosome tests neg and one genetics test was neg
He has gross motor skill delays physical therapist evaluated him recently and he was at 8-10m..his cognitive skills are the same
-Last weeks blood test showed a deficiency in vitamin A.. waiting for appointment with the GI/nutritionist specialists.. I still have to go over the results with the Dr's but they gave me a copy Ive been researching.... it looks like he was low in vitamin d too I need them to explain this to me still
-last week we also had an EEG... that showed abnormalities too..Ive got a copy of that to and it seams impossible to understand...but dr said that there was slow activity in the right lobe
-no knee reflexes
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The only thing that strikes me right away is some kind of gastroparesis (slow digestion), because that's what my DH is going through. We don't have many answers or solutions either, but he is doing a lot of protein shakes for nutrition and because the liquid digests much easier than solids. He doesn't digest fat very well...it goes SO slowly, that he's on such a low fat diet due to necessity.
There is another mama here dealing with mitochondrial issues; she always has good advice; I wonder if she will say hi. Anyway, I hope some others chime in here.
ETA - Just remembering to ask you if you've tried digestive enzymes, particularly lipase? Not sure if you can get them in powder form to mix into liquids or things like yogurt or applesauce, but I guess you could open a capsule. And vitamin C in the form of "C-salts" or ascorbic acid and magnesium helps DH with constipation.
Also - he may not have IgE "true" allergies, but has he been checked for food intolerances (ie. IgG-mediated)?
Mucusy - makes me think of a problem with dairy, and particularly cow dairy.
Kim mama to DS 12/2005, Pepper kitty , and 10/03, 1/05;