Hi all!
I'm a new member. I'm from Russia, pardon me for my clumsy English please. I have a daughter of 2 years old. Her name is Ann. From 11th week of pregnancy doctors kept telling me that she might have genetic abnormalities. She was scanned for DS and some other syndromes after her birth, but it turned out she din't have them. She was 8 months when we finally found out what was the cause of her health problems. She misses more than 10 genes in one chromosome, and she has more than 100 genes duplicated in another chromosome.
At present Ann cannot crawl or walk, but I hope she will learn how to do that within a year. She cannot eat, I feed her through gtube in her stomach. Ann is like 9 months old baby, I mean her intellectual development corresponds to this age (I don't really know how to say it in good English, but I hope you got my meaning).
I know this forum is for parents with DS children, but Ann's abnormality is so rare that I cannot find people with the same problems. So I hope that I can get some information of how to teach a child with developmental delay, about discipline and so on at this forum.

Hello! Sorry we have been slow to respond. This website isn't very busy but there are a few regulars who are good to know. I don't know about your daughter's condition, but my little boy is fed via g-tube too. People here might be able to advise about developmental delays, or suggest better resources. Welcome to the site - I hope you can find out more on the internet but we are supportive group here too. Good luck!

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Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

Hello Rachel!
Thank you very much for you kind reply!
I'm sorry to hear that Jacob has a g-tube too. I hope you will get rid of the tube one day.
My daughter had a NG-tube from birth. We had it for the first 12 months, it was a dreadful experience. Now that we have a g-tube, things are much better for us. Still I hope she will learn how to eat one day!
May I ask you some questions about the food you give to your boy?

We recently learned that Jacob will always be tube fed, because he doen't have a swallow or choke reflex, which makes oral feeding very dangerous. This was very hard for us to hear, but he has done so well with tube feeding - put on weight, more active, talking/signing a bit more - we hadn't really realised how poorly he was until we saw the difference. So it is for the best. We give him a milk type feed which contains all the nutrients he needs, and we flush his tube with water afterwards.
How is Ann?

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Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

We recently learned that Jacob will always be tube fed, because he doesn't have a swallow or choke reflex, which makes oral feeding very dangerous. This was very hard for us to hear, but he has done so well with tube feeding - put on weight, more active, talking/signing a bit more - we hadn't really realised how poorly he was until we saw the difference. So it is for the best. We give him a milk type feed which contains all the nutrients he needs, and we flush his tube with water afterwards. We have a dietitian and a doctor-led feeding clinic to help with all of this.
How is Ann?

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Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

Hello Rachel!
Thank you for your reply!
I'm really sorry to hear, that Jacob will always be tube fed! But it's great you know what is better for him! I do not know whether Ann has these reflexes. What helped the doctors to find out that Jacob doesn't have them?
Sometimes (not very often though) I give Ann a bit of fruit sauce, she can swallow a bit. She even likes it, but she eats just a little bit (not more than a half of table spoonful). She doesn't want to eat more. And I have no idea why she doesn't want it. And she doesn't drink water at all. Even a couple of drops are unpleasant for her.

I give Ann ordinary baby food from birth. When she was small, I gave her formula. And now I give her formula, meat (baby food), vegetables, curds and yolk. We have 7 or 8 meals a day and each meal lasts for about an hour. 2-3 meals are given to her when she's asleep, and I worry that it's bad for her stomach.
I wonder if special food for tube fed children is a matter of convenience or it is bad for health to give ordinary baby food to a child with g-tube? Could someone clear it out for me?
I asked our doctor whether I should give high-energy formula to her, but the doctor told me that Ann is not skinny, so ordinary baby food is ok for her. It's true that she isn't skinny, but her weigh and high are low. She is like a normal one-year old. But she is 2 years old.

Jacob had a video-fluoroscopy (moving xray) for his diagnosis. I think you need to ask for a referral to a dietician / feeding specialist - someone who can assess your daughter properly, then go on from there.

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Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

Thank you, Rachel, we will try to find a good dietician!