Allergy shots for kid with Pandas

[memom]

We just got our immunology bloodwork back for dd17Pandas. Her IGE is 782 (mean 13.2, +2 standard deviations 127. Her eosinophils also elevated. Though the immunologist hasn't reviewed the results, I looked over the others and doubt she would be considered low on any of the other testing (never had vaccine for pneumovax or prevnar). She has a history of allergies since a newborn, tested at 2yo with the old fashioned poke test but has never had testing for foods (which I plan on doing). Much improvement in Pandas after tonsils out in August (50%), a great response to steroids (up to 75% and amazing effect on stuffy sinuses and asthma and allergies/eczema, but once done with steroids, regression occurred). Now on Augmentin 875 bid, and we are back to the 50% place we got to with surgery.

DD notices her symptoms ramp up with worsening allergy symptoms. Has anyone else persued allergy treatment as part of the Pandas treatment? If so, any worsening symptoms from allergy shots?

 

Thanks

Ellie

[ShannonOtown]

Ellie,

Thanks for asking the question. My son's (11 yrs old) immunologist is recommending testing/allergy shots, since his IGE came back high from his bloodwork. He failed 12 out of 13 pnuemo titers, which she said was because he never had his Prevnar shots and recommended the Pneumovax. His other IGs came back normal. I went ahead with the Pneumovax a few weeks ago, and he had a really bad night following the shot. We put him on Augmentin just in case the relapse was a strep exposure.... I still think the relapse was caused by the vaccine. He is doing well and only had the one bad one night. We will be retesting the pneumo titers in a week to see if the vaccine worked.

 

In the mean time, I'm very nervous about the allergy shots. But our immunologist and neuro psych feel the eye tics are triggered from allergies. If you can lower his response to allergens then his eye tics will improve. We will be doing the scratch test and full food panel. I plan on talking to the allergist about Pandas and my fears of messing with his immune system. I have heard some allergist doing lower dosages and starting off slow. His eye tics are his main problems right now, so I feel the allergy shots might work. Hopefully others will respond with their experience. Our appt is at the end of Jan and I'll keep you informed on our visits and results... keeping my figures crossed.

 

Shannon

[Fixit]

I would love to hear what he tells you..

do they offer sublinguals???????

 

here's s good utube

 

again, i think this is lower dose because it's daily and if i am correct its just the antigen/no fillers

if you could ask your doc.about how pure it is..and i think they are hoping for fda appoval this year???

 

Oh and i think they also start low and build up on 3 month intervals and supply 3,6,12 months order

so the first set must be really low and you dont' have to go every week!!!!

 

i think this is one of my next steps and get his levels retested this month

and eliminating salicilates

[Suzan]

We just got our immunology bloodwork back for dd17Pandas. Her IGE is 782 (mean 13.2, +2 standard deviations 127. Her eosinophils also elevated. Though the immunologist hasn't reviewed the results, I looked over the others and doubt she would be considered low on any of the other testing (never had vaccine for pneumovax or prevnar). She has a history of allergies since a newborn, tested at 2yo with the old fashioned poke test but has never had testing for foods (which I plan on doing). Much improvement in Pandas after tonsils out in August (50%), a great response to steroids (up to 75% and amazing effect on stuffy sinuses and asthma and allergies/eczema, but once done with steroids, regression occurred). Now on Augmentin 875 bid, and we are back to the 50% place we got to with surgery.

DD notices her symptoms ramp up with worsening allergy symptoms. Has anyone else persued allergy treatment as part of the Pandas treatment? If so, any worsening symptoms from allergy shots?

 

Thanks

Ellie

 

There is one member who will probably post who had a horrible reaction with allergy shots. I have postponed ours until I can discuss further with the immunologist. I have heard that it is not a good idea to mess with their sensitive systems. But if you can push past any symptom ramp, maybe it would benefit them but I am afraid to try it. I would like to hear what Dr. Bobulous (sp??) has to say about it and if he has experience with allergy shots and PANDAS kids. I don't care to have my dd be the guinea pig. I would like to hear more about the sublinguals but I don't think we can get them.

 

Susan

[ShannonOtown]

I would love to hear what he tells you..

do they offer sublinguals???????

 

here's s good utube

 

again, i think this is lower dose because it's daily and if i am correct its just the antigen/no fillers

if you could ask your doc.about how pure it is..and i think they are hoping for fda appoval this year???

 

Oh and i think they also start low and build up on 3 month intervals and supply 3,6,12 months order

so the first set must be really low and you dont' have to go every week!!!!

 

i think this is one of my next steps and get his levels retested this month

and eliminating salicilates

 

Fixit- Thanks for the Sublingual info... I'll ask our allergist for this option if it's available. My son (like all our children) is not keen on shots!

[memom]

I thought I remembered the same thing with someone having a bad reaction but couldn't find it when I reviewed all the posts. I was hoping others would have more experience. I will give you info when I review it on Tuesday.

 

Ellie

[peglem]

Is this the thread you were looking for?

http://www.latitudes.org/forums/index.php?...l=allergy+shots

[memom]

Yes. Thank you. I think my eyes are crossing after reading every post from April to now. Even then, I missed it! Thanks again.

 

Ellie