Hi i'm new to this site. My son was recently diagnosed with Canavan's diease. He is almost 2 yrs. old. He is doing very well, he doesn't seem tohave problems with eating solid foods but he chokes on the liquids. The dr. seems to think he needs a g- tube put in soon, my question is that if he is eating well why put a tube in now?They are going to have a swallow study again in 2 months and then decide if he needs to get  the g-tube. Does anyone have the same situation with the dr. putting in a feeding tube and your child doesn't need it?

Hi, my son Nicholas who will be 12 next month also did well with food but couldn't handle liquids. Severeal times he became dehydrated because he had such bad reflux and would throw up his formula.  Nicholas had his surgery when he was 15 months old, I have no regrets.  In fact it was the best thing for him. Hope this helps.

Brenda

my son was also like that he was 18 months when they put a g/j tube into him we deff wanted what was best for him he wasnt getting enough intake and he has bad reflux and they didnt want him to asperate i feel that now with his tube he has had it for over a year he will be 3 and he is doing amazing he still eats applesauce and mash potatos from his mouth but does get his meds and formula threw the tube i feel that he is thriving 100% better with the tube they doc said that we deff can feed him threw his moth and tube my daughter on the other hand is 1 and she eats great but the doc said he doesnt want her to suffer like my son has and said she will get a tube but not any time soon she eats solids and formula as well but my daughter is a little on the over weight side so they said they will wait the tube for here she is over 25lbs and just turned 1 last week my son will be 3 in aug and is only 30lbs big differnce but other that that they are doing excellent

hope all goes well with little tommy good like and welcome to the canavan site!!

god bless Heidi

Thanks for the help. It is really great to get a little feed back from other people going through the same thing, instead of the doctors. Tommy is doing really well he is 26 lbs. He doesn't seem to miss alot of meals. I also didn't know you can feed your kid through his/her mouth when they have a feeding tube. That is a plus. I'll know if he has to get one in two months. I'll keep you updated. Thanks again for your replies.

Hi

My son Ben now aged 7 had a g-tube put in when he was 2 years old.  He was 3 before we started to need to use it for fluids but in the mean time and ever since it has been essential for ensuring he can take all the medicines that he needs.  The surgeon said to us that it was a good idea to have it put in when he was young and in good health to tolerate the anaesthetic.  I worried a lot about the decision at the time and was shocked when I saw it but have no regrets at all, now he is 7 he can't eat or drink at all and the tube is essential and he is doing well.

Sally x