Caloric Intake, recommend MD?

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Kathy:

Go with your gut. doesn't have a feeding tube, she eats stage 2 baby

food. We give her a balance of meat, veggies and fruit. (note: she doesn't

digest carrots..even on propuslid and zantac she'll spit up " orange " juice,

6 hours after attempting to eat them..any thoughts) She also drinks Vit D

milk. Due to reflux we thicken foods with oatmeal or rice, thicken milk

with yogurt (sometimes not always) and she gets Prune juice to help with

constipation althought the last 3 weeks we have needed to use

suspositiories).

When we see her GI MD they tell us she should be getting more. She takes

24-29 ounces of food, milk and juice in 24 hours. At 18months, she weights

25 pounds and is 32 " long. She doesn't move much. She is developmental at

2 mos. She doesn't roll over, sit up, crawl etc. So how much does she

really need? She doesn't cry much when she is hungry, so we guess what to

give her. Anyway go with you gut feelings.

We are pending news from Atlanta (reviewing 's records). I do want her

to see a pediatric nutritionist as well as get a second opinion from a

developmental MD. Can anyone recommend MDs they have had good experiences

with? Philadelphia and/or Bucks/Montgomery Counties. We live in Upper

Bucks, PA

Thanks & Good Luck,

Amy (mom to the younger, possible mito, developmental delay,

microcepaly, bladder reflux to kidney, GI reflux and GI delay in emptying,

CVI, and the best smile and giggle)

Questions! Growth Hormone and Caloric Intake

>From: KCorley309@...

>

>Hi, all. Sorry for cross posting!

>

>I took to the ped for his ears yesterday . . . six months and running

>with ear infections! But that is not why I am writing . ..

>

>Just to help you guys remember . . . is 31 months old, is mobile and

>verbal. He has a history of FTT, seizures, severe GERD/dysmotility,

>torticollis/scoliosis of his cervical spine, motor delays, tremors, etc.

We

>are awaiting results of a fresh muscle biopsy for enzyme and DNA testing

from

>ish Rite in Atlanta. He is suspected of having an OxPhos disorder.

>

>Since 's g-tube and fundo in August of last year, he has gained weight

>very nicely. He slowly climbed past the 50th percentile and is now near

the

>90th percentile in weight for his age! Problem is that his height has not

>responded so favorably. He is still well below the 5th percentile, and his

>trend curve is now falling off again . . . he has stalled out. We had a

nice

>little burst about 4 months after g-tube placement, but it still didn't

bring

>him up to the normal range. Now he is really really falling away from

>normal, and he is looking REALLY FAT. (Good Lord, I never thought I would

be

>able to say that about my little FTT boy!)

>

>First, let me say that we do not have the best of nutritional follow up. A

>dietitian (not a pediatric specialist . . . just someone covering the

>children's hospital) calculated his caloric needs when we were in the

>hospital post fundo/g-tube. There is not a formal follow up program,

though

>I have made a point to check in with her to ask questions on occasion. I

>called her and she suggests that we are not giving him enough calories.

She

>suggested that I up his intake to 1400 calories.

>

>Then I spoke with the ped about it. The pediatrician thinks it is time to

>consult with an endocrinologist to talk about growth hormone testing.

Okay,

>just another doc to add to the ever-growing contingent of those caring for

my

>son! But I am anxious about his growth (or lack of it) and excited about

>changing the treatment strategy, as I think we need to do something

different

>if we are to expect a different outcome!

>

>So, my questions are:

>

>1. Does anyone else out there take their child to an endocrinologist? use

>growth hormone treatments? How is it working?

>

>2. Where should I start to educate myself about the risks and benefits so

I

>know what I am talking about when we see the doc? Suggestions?

>

>3. (For the mito lists) Are there special considerations for children with

>mitochondrial disorders?

>

>4. What about the calories . . . my gut tells me that I shouldn't up the

>calories again . . . he is still gaining too rapidly and he is not growing

in

>length. Does anyone else have any advice?

>

>Thanks!!!

>

>Kathy

>

>

>---------------------------