A Few Easy Questions

[LoveShines4Austin]

Alyssa,

I only spoke to the nurse at the clinic. This is all so new to me that I was in shock and didn't ask any questions. All she did was tell me what he had and what they were going to do for it. It's all a blur. I will talk to her again ASAP and ask the question about the mucoid or non-mucoid type of pseudomonas. I have also come up with many other questions to ask her - all thanks to this forum. Thanks for taking the time to help me .~*~*hugs~*~*

 

[jenhum]

I'm on TOBI one month on, one month off. I actually don't mind the taste at all...I don't love it or anything, but it doesn't bother me in the least. Maybe it's something you have to get used to? As far as his tastebuds- when I first started the TOBI it would leave my tongue so raw. I couldn't even eat ketchup b/c it was too spicy for me. I started drinking milk before I nebulized to coat my tongue and washed my mouth out really well afterwards. For a while I even had to do a half vial of TOBI twice a day instead of a whole one twice a day. But eventually it stopped bothering me!

About the coughing, when I start TOBI at the beginning of the month, I cough like craaaaazy for 3-4 days, and then I start feeling really good. TOBI has done wonders for me. I start feeling bad towards the end of every "off" month, but within 5 days of starting I always feel good again. So just tell your son to keep at it!

Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

I started my Tobi last nite for the first time in Months. I had been using Colistin. The Tobi reminded me of a batch of Brussel Sprouts. Unfortuntely I cant load it down with butter like I do them lOL

 

[anonymous]

Here is the criteria for SS Disability for children.

<a target=new class=ftalternatingbarlinklarge href="http://www.ssa.gov/disability/professionals/bluebook/103.00-Respiratory-Childhood.htm
">http://www.ssa.gov/disability/professionals/bluebook/103.00-Respiratory-Childhood.htm
</a>
If you are applying for state SSI, though, I can't help you there. I do wonder if the criteria is different from state to state or basically the same?