Xolair and kids

[Guest guest]

Hi, I just joined this group today as my grandson's allergist is

recommending he start the Xolair injections. I checked some of your

posts and notice you are all adults on this med, and that it is not

even recommended for kids under 12. To give you a little history

here, my grandson is 6yo with Cerebral Palsy secondary to

cytomeglavirus, he also has a seizure disorder, a swallowing

disorder (dysphagia), and is non-verbal. He unfortunately comes from

a long line of asthmatics dating back to my grandfather. He takes

Zyrtec, Singulair, Depakote for his seizures, Nasonex, Pulmicort,

and Albuterol every 3 hours during his waking cycle. He averages 3

hospitals stays per year for excerbation of asthma, which we have

had to fight for the asthma diagnosis as the Dr.'s wanted to

attribute his airway problems to his low trunkal tone. To keep him

on Albuterol I just agreed and stated he still needed the help. When

I convinced them to put on the Pulmicort they wanted to start at

once per day but my children had seen a very reputable allergist

here who had since passed away but was still well known. He had

always told us to go one step beyond what we thought the kids needed

and then back down, get control and then maintain. That was enough

to get the Pulmicort 2xdaily. When I noted the new posture without

the shoulder rounding they continued it. The allergy testing proved

to much for his system and caused him to have seizures. He did test

highly allergic to Bermuda grass, no surprise as 3 out of 4 of our

kids are allergic to it. Xopenex was tried and following the third

dose he again seized. His allergy and asthma trigger his seizure

disorder, other than that his seizures are well controlled. That is

another area we had trouble getting someone to understand, they

thought the seizure should trigger the asthma so I was nuts. Anyway

I would like to know what you who are on this magic medicine think

about its use in a 6yo. His allergist did not state this was a

miracle drug merely that it would allow to go out of the

house which he currently can barely do. He was dropped from

therapies due to his constant airway problems, and is phlegmy most

of the time. His IgE number was 35. Now the last time we coerced a

Dr. into testing his CMV(2 years ago) he still had an active

infection, mind you he has had that infection since before he was

born. I wonder if the CMV is the underlying culprit in our game of

breathing but the ID Dr. that everyone consults disagrees. Am going

back to the PCP as our youngest dau is on her second pregnancy with

high CMV titers so the OB specialists thinks she has a chronic

underlying infection. They won't test for that while she is preg and

then must convince the PCP that this is possible. Any suggestions

would be greatly appreciated.

CC