Special Needs

New Here-- again

I frequented this board years ago with DS #2 (he is now 51/2).  He had some delays due to lead poisoning and except for insomnia he is right on track with his peers again.  Now I am here because of DS #3. 

My Ryry is 10 months old.  Since birth he has had bloody mucosy diahrea.  I mentioned it to his peds since day one and they had pretty much done nothing.  Thankfully we have a new ped who has taken our concerns serious and started to look into things.  Fast forward to 2 weeks ago, we hit the er twice in one weekend.  The first trip was for large amounts of blood.  That trip basically ended with blood work and a referral for a GI.  Less than 48 hours we were back for sever vomiting and come to find out severe dehydration.  That trip ended in him being admitted for 4 days.  He was on iv fluids and antibiotics for most of the 4 days.  We were discharged last Thursday with an appointment for the GI for this past Tuesday.  His platelets and inflamitory markers were elevated.  We attempted Nutragemin (sp?), Elecare and Elecare JR Vanilla, none of which he would drink so they put him back on Prosobee until our appointment.  When the Dr walked in the room at the appointment he immediately said he was not doing well.  Ryry now weighted less than he did in November (at 7 month).  We were immediately admitted on a feeding tube and as of right now that's where we still are.  They are planning on scoping him and doing biopsies in the next week or 2. The current plan is to send him home on the tube (with Elecare Jr Vanilla) tomorrow.  He is not allowed any dairy, eggs or soy until they can scope him to confirm the suspected dx of Chronic Allergic Colitis, they are also looking into some sort of auto immune disease (I have an auto immune disease).  Whoa this is the first time I have actually really thought about all of this.  If you made it this far...thank you.

Anyone have advice on foods??  They want us to introduce more table foods




Court
DH 40  ME 40
GD, Myasthenia Gravis, Factor V Leiden

DS #1 born via emergancy c-section 01/23/06 at 37w

DS#2 born via c-section 10/27/2007 at 36w due to PROM

DS #3 born via repeat c-section 04/13/2012 at 39w



"Life is not measured by the number of breaths we take,but by the moments that take our breath away." - George Carlin

Re: New Here-- again

  • No advice but you might try reposting on the food allergy board.


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  • I would 2nd the Food Allergy board.

    When you say table food are you speaking solids like baby food (purees) or actual table food like what kids and adults eat?  I would assume you could do most any food minus those you listed and those with the potential for allergies (like peanut butter, honey) either via already created baby food or by pureeing it.  

    I'd be pissed at the former doctors for dismissing bloody diarrhea for MONTHS.

  • i don't have any advice, just want to say i hope you get some answers soon. best of luck.
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