Allergy Shots

[LaurenK]

Sorry for all of the questions. We were told not to stimulate my sons immune system but he has severe allergies. Is there anyway to do allergy shots w/o having a severe exacerbation of PANDAS/Aspergers symptoms?

[LNN]

I think this is a quality of life decision. My DD's (CamK 179, anti-lysogangliasides higher than highest measurement (>1200) seasonal allergies were so bad that she would not go outside to play for 6 weeks at the height of spring. Her eyes would swell almost shut. She was miserable. Even tho she was only 5, her allergies had gotten progressively worse each year. Zyrtec and eye drops and an inhaler barely made a dent. So we resorted to allergy shots. She's been getting them for 18 months and they've made a world of difference. Last spring we only had to give her allergy meds a few days out of the entire season. Her quality of life is night and day. The shots never seemed to have any impact on her in terms of episodes or exacerbations. Now, her PANS trigger is probably lyme, not strep, but I don't think that wold make a difference.

 

IMO, the worst part of starting shots is the beginning, when the shots are so frequent. Very traumatic some weeks. But now we're at once/month and will probably stop them after this spring to see how she does. But in terms of stimulating auto-immunity, it didn't happen. Strep and lyme bacteria have an M protein on their outer surface that may play some role in the auto-immune attack. It's been speculated that cells in the basal ganglia may have proteins that look similar. To my knowledge, the antigens in allergy shots - the pollens in my daughter's case - don't have the same proteins. So it provokes a different immune response.

 

I think it depends on quality of life. I personally could not ask my daughter to keep being miserable for 3 months every year for what proved to be an unfounded fear of an auto-immune response. But everyone has to make their own decisions.

[LaurenK]

did your daughters PANS symptoms get better during allergy season after the shots? Is there a specific way that you have to do the shots?

[LNN]

did your daughters PANS symptoms get better during allergy season after the shots? Is there a specific way that you have to do the shots?

Her dominant PANS symptom - OCD - did not have much if any correlation with allergies - before or after shots.

 

What we did see a spike in during allergy season were the secondary PANS symptoms - the things that overlap a number of conditions, not just PANS. Things like perfectionism, inattention, anger, and very rapid bi-polarish mood swings. These symptoms are also associated with under-methylators and a "high copper personality". Her under-methylation issues would get worse during allergy season because she'd be producing wicked amounts of histamine, which is a methylation issue. Turns out she has a mutation in her MTHFR gene and cannot use regular folate to recycle homocysteine (which results in higher histamine). So we just started giving her methyl-folate, which should help bypass her genetic mutation. I'll let you know in May We're also giving her zinc for borderline pyroluria, which is lowering her high levels of copper. Not a smooth road, but she's improving.

 

So while it's all wrapped up in one little body, I think my daughter had/has three issues (at least) mixed in together. She has a PANS reaction to lyme/bartonella (OCD issues primarily). She has a genetic methylation issue which results in high histamine and all the health and behavioral issues tied to that (intense reactions, irritability, perfectionism, anxiety). And she has a copper/zinc imbalance that produces bi-polar mood swings (mania/depression in the same hour)and the low zinc impedes her ability to fight infection. It wasn't simply a matter of fixing one thing.

 

If anything, the allergies/shots were tied to the methylation/histamine issue and the shots have helped her in that regard. The shots are given by an RN in her arm. (We've had to use a lot of ERP to overcome needle anxiety - not always a pretty scene - but that's fairly typical for young kids and I don't think has anything to do with any PANS).

Edited January 2, 2012 by LLM

[cobbiemommy]

DS is doing sublingual allergy therapy. We had tried shots before, but they seemed to aggravate his raging, so on advice of Dr. K we quit. We have found a well respected doctor who has been doing the sublingual drops for over five years. They are not covered by insurance, but hopefully in three to five years he will be allergy free. He takes a daily generic Zyrtec (very cheap at Sam's Club), nasal spray and the the drops at bedtime. We are only in our fourth month, so it is too soon to tell if they have cleared his allergies.

 

Cobbie

[LaurenK]

Did your son start at a lower than normal dose for regular allergy shots? I heard with PANDAS the starting dose must be lower than the dose for normal kids?