Re: Update on struggle with eating

[Guest guest]

Hi, Becky --

So sorry to hear about ' eating problems. If it makes you feel any better at all, my son is having the same type of problem. He was diagnosed with failure to thrive too -- he's 7, which I thought was kind of old for that type of diagnosis, but apparently not. My son is having this problem as a result of Post Traumatic Stress Disorder, due to trauma he suffered at school. We've been trying and trying to bulk him up, but not to much avail. We just keep trying. His brother has Celiac, but was tested for that and came up negative. Other than that, he shows no other obvious signs of GI problems.

We saw a dietician at Akron Children's for 's situation, but she said we were doing all the right things. We've tried supplementation, but he ends up refusing it after a while. I did have a question about the Resource you mentioned -- you need a prescription for it? The dietician indicated that it was available over the counter, but I haven't been able to find it. I thought maybe would take that since it's supposed to taste like juice. If you get a moment, please let me know.

I've heard good things about Dr. . I wanted to take my boys to him, but he wasn't under our insurance plan. We have different insurance now, so I'm going to check and see if he's on this new one. Do you like him? Would you recommend him?

I wish I had some miraculous words of wisdom that would make everything better, but unfortunately, I don't. Your family will be in our thoughts and prayers, and if it helps, know that you're not alone. I completely understand the locking yourself in your bedroom and crying. I can also understand never feeling like you've done enough. I am with you on both counts. I'm also just terrified for my son. Even though we've seen all the docs, the dietician, the psych -- everyone -- we still can't seem to get him better. They keep saying it'll take time. Wouldn't you know, patience is not one of my virtues! Again, Becky, I'll keep your family in our prayers, and you are definitely not alone.

--Suzanne

-----Original Message-----

From: sleeplessohio@...

AutismOhio

Sent: Wed, 14 Feb 2007 12:47 AM

Subject: [ ] Update on struggle with eating

Hi all,

' PCP found a doctor that would see and we had our 1st appointment Friday with him, Dr. Emery at Akron Children's. had lost another 3 pounds in 10 days and is down to 113 pounds. This places him in the 10th % for weight and 25% for height. Dr. wrote that he is now considered failure to thrive. I have never heard this used for a teen before.

He order an Ab XRay to check his bowel and see if he is backed up bad. has been having trouble moving his bowels for the last 2 years. He said if he is backed up bad he would not feeling eating. Makes sense and frankly we never thought about this.

He sent us home with a sample of Resource to see if would drink it. Up till now he has refused it. If we can get him to drink it he will be giving us a script for it. He will be drinking it 2X a day.

We go back in 2 weeks and meet with him, a speech therapist and dietitian. He will get a sensory eval at that time. We still feel very tense, helpless and worry so much about his overall health. The school reports that by 1 PM he is wiped out physically and has trouble staying in task. We see the samething at home on the weekend, or here of late all the snow days!

He had 2 seizures on the 1st, one at school and 1 while we were being registered for the ER. His neruologist whats him to have a new neruo physiological exam done and this is schedule for April. This is due to a decreace in in speech and small motor function since the 1st.

This has been such a hard journey and one of the most frustrating ones we have had to walk for sometime. There are days I just lock myself in our bedroom or my office and just cry. I know I am doing everything I can, but I never feel it is enough.

Thanks for letting me rumble. It has been a long day.

Becky

Becky

Mother to , 16, Autism, Epilepsy, Cerebal Palsy, MR, ADHD

Everybody has barriers and obstacles. If you look at them as containing fences that don't allow you to advance, then you're going to be a failure. If you look at them as hurdles that strengthen you each time you go over one, then you're going to be a success.

Carson

Surgeon

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[Guest guest]

Suzanne, Right we are trying to figure our just what as triggered this. There are any factors thatcan come into play, Meds, sensory, control. We are lucky to have a greta base tea of doctors that phone conference and work together when it comes to his meds and therapic measures. I am told that if the doctor writes a script for resource that many insurance companies will cover it as it is very expensive. Here is the nutrition break down on the french vanilla 8 oz container.. cal..................355 protein...............10 fat .....................17.8 carb....................39 sodium..............164 potassiu............309 vit a1.................711 vit c.....................24 thiain.....................0.28 riboflavin.................0.36 niacin.....................4.5 calcium...............309 iron.........................3.3 vit d.....................109 vit e.........................5.4 vit b6.......................0.38 folic acid................88 vit b 12.....................0.57 phosphorus ..........235 iodine.....................33.2 magnesium.............47 zinc..........................2.8 copper......................0.26 biotin.......................36 pantothenic acid.........2.4 vit k.......................... 9.5 choline.....................95 chloride..................178 manganeses..............0.55 selenium....................8.1 molybdenum.............14 carnitine......................6.2 taurine.......................32

m-inositol...................28 Becky Mother to , 16, Autism, Epilepsy, Cerebal Palsy, MR, ADHD Everybody has barriers and obstacles. If you look at them as containing fences that don't allow you to advance, then you're going to be a failure. If you look at them as hurdles that strengthen you each time you go over one, then you're going to be a success. Carson Surgeon

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[Guest guest]

Thanks for your help on the Resource, Becky. I'll give his PCP a call and I'm sure she can write a scrip for it. Maybe they'll even have some we can try -- the dietician didn't have any more samples left.

My son is on meds that can cause a reduction in appetite, but he got a boost up in meds that are supposed to increase his appetite. Obviously, that's not working. The dietician said that the psychological factors could be huge in this, as they can trump anything. But, he doesn't communicate well enough for psychotherapy. Sigh...

Again, best of luck to . I hope you get some answers for him soon.

--Suzanne

-----Original Message-----

From: sleeplessohio@...

Sent: Wed, 14 Feb 2007 11:40 AM

Subject: Re: [ ] Update on struggle with eating

Suzanne,

Right we are trying to figure our just what as triggered this. There are any factors thatcan come into play, Meds, sensory, control. We are lucky to have a greta base tea of doctors that phone conference and work together when it comes to his meds and therapic measures.

I am told that if the doctor writes a script for resource that many insurance companies will cover it as it is very expensive. Here is the nutrition break down on the french vanilla

8 oz container..

cal..................355

protein...............10

fat .....................17.8

carb....................39

sodium..............164

potassiu............309

vit a1.................711

vit c.....................24

thiain.....................0.28

riboflavin.................0.36

niacin.....................4.5

calcium...............309

iron.........................3.3

vit d.....................109

vit e.........................5.4

vit b6.......................0.38

folic acid................88

vit b 12.....................0.57

phosphorus ..........235

iodine.....................33.2

magnesium.............47

zinc..........................2.8

copper......................0.26

biotin.......................36

pantothenic acid.........2.4

vit k.......................... 9.5

choline.....................95

chloride..................178

manganeses..............0.55

selenium....................8.1

molybdenum.............14

carnitine......................6.2

taurine.......................32

m-inositol...................28

Becky

Mother to , 16, Autism, Epilepsy, Cerebal Palsy, MR, ADHD

Everybody has barriers and obstacles. If you look at them as containing fences that don't allow you to advance, then you're going to be a failure. If you look at them as hurdles that strengthen you each time you go over one, then you're going to be a success.

Carson

Surgeon

Don't get soaked. Take a quick peak at the forecast

with the Search weather shortcut.

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.