Re: Urgent Feeding Question

[Guest guest]

Hi Brigitte,

You might want to ask to have a swallow study run. They have the child

swallow a liquid, and then take pictures to see how the liquid goes down. It

would tell them if Bobbi has an anomalies in her esophagus.

Hope this helps.

Pat (g-ma to , RSS, 4yrs 2m old, 28# 10oz, 35 " , G-tube, GHT)

[Guest guest]

Brigitte,

What you are describing sounds like Dysphagia. That is the

inability to swallow properly. Many, but not all RSS children have

issues with food texture, size, chewing, lateralization and tongue

over sensitivity.

My son Connor had tons of issues with texture. We had to literally

desensitize his mouth with toys, therapy and the introduction of

food slowly. So, understand that you aren't alone in your struggles.

A good speech therapist and a G.I. doctor need to be in your care

team for your child. They will do regular therapy and teach you

what you need to know.

It takes time. Patience. And work. Don't be alarmed if you take

two steps forward and three steps back. As Dr. H. likes to say, we

are literally working against their genetic programing to not like

food.

I can say that today, Connor age 3 1/2 eats whatever he wants. He

eats a variety of textures and tastes. It's very limited compared

to a normal (I really hate that word) childs oral motor function,

but it suits him. We work on it every month.

Good Luck! I'll be keeping you and your precious one in my prayers.

Mom to Graham 9; Cameron 6; Connor 3 RSS

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> Hi All

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> I know I have left it to the last minute to ask, and I'm hoping

some of you could help me out. We have an appt. tomorrow (Feeding

Clinic) and My main concern is that my daughter Bobbi who has just

turned 2yrs, is still showing absolutely no signs of chewing (or

even moving food around her mouth) she will only except milk and

smooth pureed foods (absolutely no lumps) even though she really

wants to eat other foods, she will get food out of cupboards and

then want to go in her high chair to have a go at them, but as soon

as she trys she will gag or pull it out her mouth with fingers. Its

as if she is unable to swallow anything except liquids. I have

tried everything the doctors etc. have suggested and more with no

avail. Has anyone else experienced this with their kids, and was it

just RRS or another underlaying problem. I was just hoping some of

you could give me some ideas of what to bring up in our appt.

anything else they could look for that may be a cause for this

problem. Hope this makes sense!

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> Many thanks

> Brigitte (Mum to Bobbi, 2yrs old, 18lb 7oz, 75cm)

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