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Can't get a break part 2...

Forum: Children with Special Needs


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January 12th, 2012, 07:28 PM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
Posts: 3,593
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So Danny woke up with a slight cough yesterday. Sinus infections wreak havoc on his asthma within 2 days...starting with a cough is just BAD. So by last night we were up to neb treatments every 2 hours, started oral steroids and were ordered that if he wasn't "significantly better" by 10 am that he needed to be seen in the office. So I picked him up from the preschool (who said they would call me if he coughed more often than every 5 minutes) and he coughed at least a dozen times walking from the preschool room to the car. That takes less 3 minutes. THAT is why I don't normally send him to preschool with asthma problems. With 23 kids running around, 1 minute seems like 5 so she didn't realize how much he was coughing. We go in at 8:30 in the morning to see his regular doctor and he has started him on a cough suppressant and said to hold the nebs at every 2 hours. If he starts retracting he has to go to the ER ASAP.

So to make today even better we went tot he GI today. He has lost weight at every one of the last 4 appointments. His reflux is so bad now that he says at least a few times per day that when he swallows his food just comes back up to his mouth and complains several times per day that his belly hurts (top, bottom, and middle are all achy). He is still getting 2000+ calories per day and getting his enzymes as needed. The PA that we have been seeing said that she didn't know what else to do so she went and consulted the leading GI of the group. After about 20 minutes, reviewing the chart, talking about recent history more in depth, and weighing a few solutions she came back down. 1) He wants to see Danny no later than 2 weeks from today. 2) He is sending Danny to an Endo to see if they can find anything that GI has missed or overlooked. 3) If Endo doesn't find anything he will likely go to genetics next. They are out of current options because Danny has already tried and failed them. Supplemental and elemental formulas have been rejected or not tolerated, NJ tube is out of the question due to how he reacted to the NJ tube used for the clean-out. He wanted to start periactin again but since we allready did that and it didn't really change anything that got nixed too. We have to bring a 7 day food diary with us so that they can verify his calorie intake. They talked about placing a permanent tube but after discussing his nutrition history decided not to. Even when he got 3000+ calories per day he didn't gain anything so it seems that adding more calories does no good.

I have to admit. I wasn't *terribly* concerned about Danny's issues until the PA started getting flustered and running around just short of a chicken with her head cut off trying to figure out ways to determine why everything is going wrong with Danny. They know that there are SEVERAL things wrong but not what is causing them or how to fix them. When the head GI squeezes Danny in to an already triple booked schedule it makes me a lot more nervous... :'(

Thanks .:Shortcake:. for my GREAT siggy.

Last edited by i3ai3ydanny; January 12th, 2012 at 07:36 PM.
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January 13th, 2012, 05:34 PM
MommaLexi's Avatar Adoptive and Foster Mommy
Join Date: Nov 2011
Location: The Desert ;)
Posts: 587
I know it must be so scary! I'm praying for him and for you!

FD ~ Squishy, 8mos old, Down Syndrome, Heart Disease (post open-heart surgery)
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January 13th, 2012, 05:48 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
I'm so sorry to hear that, but it's good that he's been seen as a priority. It seemed before like he was always at the bottom of the list and waiting on something.

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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January 13th, 2012, 09:33 PM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
Posts: 3,593
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I know I should be happy but the Doctor that has squeezed him in is one that we have seen before. When Danny was about 18 months old he was getting 3000 calories per day and losing weight on every scale but the GI's scales. He said that he wouldn't even look at the pattern on the other office's charts and said come back in two months... This is the doctor that now is very concerned about my child. The one that had always been apathetic and not really caring. The fact that Danny is near the top of his list terrifies me...

Thanks .:Shortcake:. for my GREAT siggy.

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