Xolair and kids

[Guest guest]

Hi, I have been severely allergic/asthmatic since I was 3 years old -

35 years. I spent 10 years working with children with health and

special needs children through the Head Start program, so I have

some experience with severely allergic/asthmatic children and some

experience with children with special needs.

I know that you well know that there are risks in trying a child on

any new medication. That said -

--I always had trouble with allergy shots and could never reach

maintenance dose due to reactions. I have never had any reaction

problems with Xolair

--we have two women who may possibly be experiencing hearing loss as

a result of using Xolair. These are not yet absolutely confirmed.

Of all the folks that have posted on this board in the last three

years, the only side effects that seem to pop up on a regular basis

are headache and fatigue, which generally diminish in the first few

weeks. Whether these are a direct result of Xolair or simply our

immune-ravaged bodies recovering as Xolair starts doing some really

good work on us, we don't know.

--Most of us have been able to decrease our regular daily meds,

decreasing side effects of those, in particular the issues related

to long term steroid use.

--We have had two (maybe 3) parents come on and post that they have

elected to start Xolair with their children on the advice of a

physician, and the reports have been very positive. I'll try to

find out who they are and get you some more information.

Lastly, if it were me, with ALL the issues your son has, I would

seriously consider Xolair. If you can find an allergic/asthma

measure that will prevent attacks that bring on seizures, that in

iteself would be a blessing. But the possibility that you might be

able to break some ground in other developmental areas once you get

the seizures under control is truly something to hope for.

National Jewish Research Hospital has a great website. They have a

1-800 number you can call. I'm sure someone could tell you where to

start looking for information on other young children using Xolair,

especially special needs children. Also, check with your doctor and

ask him/her to ask the area Xolair rep about it. There's also a

group called Mothers of Asthmatics. Check the web - they used to

have a website. You can probably find a way to network there with

family members with young children on Xolair.

Good luck,

and please keep us posted on how things are going.

Addy

Group co-owner (NOT a doctor)

Please make sure to discuss all changes to your treatment plan with

your doctor.

--- In , " daisygrazer " <Daisygrazer@...>

wrote:

>

> 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

>

[Guest guest]

HI,

My name is Lin and my son has severe asthma.

he takes the allergy & zolair shots for the asthma.

also he takes other meds as well along with the shots to prevent his asthma.

i do post on here from time to time.

when i can help. im not a dr. i speak from experience. my son has had his

asthma since birth. hes 14 now.

anyone on here can help you but you still do need to ask your physican

questions.

have a asthma free day.

Lin from pittsburgh

pyle456 <coachmac@...> wrote:

Hi, I have been severely allergic/asthmatic since I was 3 years old -

35 years. I spent 10 years working with children with health and

special needs children through the Head Start program, so I have

some experience with severely allergic/asthmatic children and some

experience with children with special needs.

I know that you well know that there are risks in trying a child on

any new medication. That said -

--I always had trouble with allergy shots and could never reach

maintenance dose due to reactions. I have never had any reaction

problems with Xolair

--we have two women who may possibly be experiencing hearing loss as

a result of using Xolair. These are not yet absolutely confirmed.

Of all the folks that have posted on this board in the last three

years, the only side effects that seem to pop up on a regular basis

are headache and fatigue, which generally diminish in the first few

weeks. Whether these are a direct result of Xolair or simply our

immune-ravaged bodies recovering as Xolair starts doing some really

good work on us, we don't know.

--Most of us have been able to decrease our regular daily meds,

decreasing side effects of those, in particular the issues related

to long term steroid use.

--We have had two (maybe 3) parents come on and post that they have

elected to start Xolair with their children on the advice of a

physician, and the reports have been very positive. I'll try to

find out who they are and get you some more information.

Lastly, if it were me, with ALL the issues your son has, I would

seriously consider Xolair. If you can find an allergic/asthma

measure that will prevent attacks that bring on seizures, that in

iteself would be a blessing. But the possibility that you might be

able to break some ground in other developmental areas once you get

the seizures under control is truly something to hope for.

National Jewish Research Hospital has a great website. They have a

1-800 number you can call. I'm sure someone could tell you where to

start looking for information on other young children using Xolair,

especially special needs children. Also, check with your doctor and

ask him/her to ask the area Xolair rep about it. There's also a

group called Mothers of Asthmatics. Check the web - they used to

have a website. You can probably find a way to network there with

family members with young children on Xolair.

Good luck,

and please keep us posted on how things are going.

Addy

Group co-owner (NOT a doctor)

Please make sure to discuss all changes to your treatment plan with

your doctor.

--- In , " daisygrazer " <Daisygrazer@...>

wrote:

>

> 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

>

---------------------------------

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[Guest guest]

We are going to start my grandson on the xolair if for no other reason

than the only person that seems to be listening is the allergist. The

first dose should have been delivered to the DR.on Tues so will try

calling again tomorrow to arrange an injection time. Since he cannot

go outside most days, and we are afraid to put him in school this

feels like our only option. Beings allergy testing might have

contributed to a seizure the thought of allergy shots was kind of

overwhelming to us. Everyone please cross your fingers for him!

We kind of hope that with this we will get some verbalization out of

him. Would be nice to hear his voice more often!

Daisygrazer

[Guest guest]

--- In , " daisygrazer " <Daisygrazer@...>

wrote:

>

> We are going to start my grandson on the xolair if for no other

reason

> than the only person that seems to be listening is the allergist.

The

> first dose should have been delivered to the DR.on Tues so will try

> calling again tomorrow to arrange an injection time. Since he cannot

> go outside most days, and we are afraid to put him in school this

> feels like our only option. Beings allergy testing might have

> contributed to a seizure the thought of allergy shots was kind of

> overwhelming to us. Everyone please cross your fingers for him!

> We kind of hope that with this we will get some verbalization out of

> him. Would be nice to hear his voice more often!

> Daisygrazer

>

Just to let you know, I was on home bound till the 6th grade. My

teacher came to my house twice a week for school. I was allergic to

almost everything in the classroom and outside. Allery shoys didn't

work for me= they just triggered severe attacks. My peditrician told

my family that about every 7 yrs an asthmatic child has major physical

changes and the asthma usually improves drastically. I can't speak for

anyone else but I followed that pattern. then I hit 40 and it came

back with a vengence! Xolair really is a miracle drug for me. It has

eliminated almost all my other asthma meds and I feel great! I will

keep your grandson in my prayers.

becki