Re: Diagnosis from Saint Louis Children's Hospital?

[Guest guest]

Cheryl,

Thanks for the info. I'm afraid my doctor might say the same

thing. My son Jack's sores get so bad that he can't eat, drink, or

talk. What we did was bought a big syringe from a pet supply

store. We keep vanilla pediasure on hand at all times. We have to

syringe the liquid into the back of his mouth so he can eat. The

episodes are still ultra-stressful, but knowing that he is getting

some liquid with nutritional value helps. And, you're right--the

steroids not only shortened the length between episodes but seemed

to increase their severity. The only reason we do it is to end the

really bad episodes he has. Thankfully, his fevers/sores aren't

coming as often as they used to, but I'd like to at least have the

option of the T & A if they start getting worse again. Good luck

with Nick. I hope we all find something that works for our

children. . . and soon.

Christie

[Guest guest]

Melody,

Thank you for the reply. I just wanted to let you know that we love

Dr. White and my son Jack loves him too. He is so easy to talk to

and seems very intelligent. He ran extensive tests on Jack this

summer, which all came back negative, but he has never mentioned

. That seems strange now that you mentioned that he is

familiar with the syndrome. Maybe he just isn't convinced Jack has

it or likes for another doctor to sign off on it to. Who knows.

We'll see what he thinks about that this month. I'll let you know

how it goes and please let me know what happens at your visit. Good

luck. --Also, how old is your child and what is his/her symptoms?

Thanks,

Christie

[Guest guest]

Melody,

Thank you for the reply. I just wanted to let you know that we love

Dr. White and my son Jack loves him too. He is so easy to talk to

and seems very intelligent. He ran extensive tests on Jack this

summer, which all came back negative, but he has never mentioned

. That seems strange now that you mentioned that he is

familiar with the syndrome. Maybe he just isn't convinced Jack has

it or likes for another doctor to sign off on it to. Who knows.

We'll see what he thinks about that this month. I'll let you know

how it goes and please let me know what happens at your visit. Good

luck. --Also, how old is your child and what is his/her symptoms?

Thanks,

Christie