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Forum: Children with Special Needs

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  #1  
September 7th, 2011, 02:01 PM
Ditzzy's Avatar Stupid Lamb;)
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How are everyone's lo's doing? Let's catch up!
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  #2  
September 7th, 2011, 03:35 PM
C&K'sMama's Avatar Platinum Supermommy
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Our diagnosis has been revoked once again.... after yet another EEG, we're back to being "undiagnosed".

Otherwise health is good. They've been fighting some nasty allergies, but all is good here.
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  #3  
September 7th, 2011, 03:40 PM
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Kaiden's doing great!! We're now 4 weeks into Adventures of Self Feeding and his refusal is totally gone, so now we're just working on improving his control/aim of the spoon. Still no finger feeding though.

Working on some dietary issues, he's had an on/off diaper rash since the lymphedema started - the lymphedema's gone, but the rash still crops up. Trying eliminating different foods right now.
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  #4  
September 7th, 2011, 06:11 PM
C&K'sMama's Avatar Platinum Supermommy
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Quote:
Originally Posted by greenchild View Post
Kaiden's doing great!! We're now 4 weeks into Adventures of Self Feeding and his refusal is totally gone, so now we're just working on improving his control/aim of the spoon. Still no finger feeding though.
AWESOME!! Go Kaiden!
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  #5  
September 8th, 2011, 10:36 AM
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Danny is an overall mess. Less of a mess than many other children but still... He lost weight at his last weight check, his allergies and RAD/asthma have flared up "again" though it hasn't gone away. They thought he had a sinus infection three weeks ago so they put him on Augmentin to clear it up. That didn't help so they put him on Omnicef and his last dose is tonight. We had to pull the nebs back out from coughing fits, productive coughs (throat phlegm), wheezing when crying or running, etc. We did every 3 hours with Xopenex last night and he is going in tomorrow morning to see his allergy/asthma doc. He hasn't seen "his" doctor for this yet because he has been booked. He has seen 2 of the PA's and spoken with several docs in the office through the on-call system but I am really hoping that we will get something figured out when he sees his normal doctor. After we had the Xopenex in his system he did okay so I am afraid that he will look at him and say that he is fine and dismiss it because he has been on antibiotics for a little over 3 weeks straight now. His doc has always been really good about accepting that I know what I am talking about though so hopefully the same will happen this time. I can't just give him steroids everyday. He is already on Advair HFA 115/21 2 puffs twice a day, Flonase, and Singulair as routine meds. That includes everything that should be needed to control his asthma/RAD. What else are we supposed to do???

Sorry about the megadump... I am just so sick of watching him be sick. :'( I just want him to be a normal healthy child just like everyone else...
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  #6  
September 14th, 2011, 05:46 AM
alicenwonderland's Avatar Platinum Supermommy
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Teddy's doing pretty awful right now. He got into some chocolate last week. (milk is a big trigger) and he's been having mucousy bloody diarrhea ever since. His GI doctor wants to schedule upper gi, endoscopy and colonoscopy with biopsy plus a whole panel of blood work. They are specifically looking for eoe.
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  #7  
September 15th, 2011, 03:10 PM
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alicenwonderland, it does sound like EoE. Hopefully the GI can find a feeding plan that works for him. ((Hugs))

Alycia, I'm sorry. I really hope you get some answers!

Ava is hanging in there. She's still fed approx 20 hrs a day and continues to have unstable blood sugars and acidosis. She's using her oxygen about 50% during the day and 99% at night. Her energy is better on O2. Her liver is still being funky. She's had 2 seizures this week, which I think are worse because she's in school and really tired. She's going to be tested for Diabetes Insipidis. I hate Mito.

She's also happy and a total goofball.
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