Allergy shots

[LNN]

Ok, I have to play devil's advocate, freely admitting I don't understand immunology. My incomplete understanding of allergy shots (having successfully taken them myself for many yrs) is that they do not excite the immune system. They desensitize it. The allergen, in a very small dose, is exposed to the body in the same way a new friendly visitor is introduced to your attack dog. Over time, the body learns to recognize the allergen as something that does not need to be attacked.

 

In contrast, a vaccine introduces a masked man to the attack dog and teaches the body that this is indeed something that should always be attacked whenever it comes near the house.

 

I have a big interest in this thread because my daughter (non-pandas but on the radar) is about to start allergy shots. She had a skin test 2 days ago and is extremely allergic to all trees and grasses. We have no choice. By May, when all the trees are in full bloom in CT, her eyes will be swollen shut and she will not be able to leave the house for 4 weeks. She's only 5. Each year it gets worse and will continue to get worse unless we start shots. She's had a full immuno workup and has very similar results to my Pandas son - they are both specific antibody deficient (he failed 13 of 14 pneummo titers and she failed 8 of 14). Both have overall strong IG levels, neither have rising ASO or anti-DNase despite both having had sinus infections and my daughter having had 2 bouts of impetigo in the past 10 weeks.

 

So here's my devil's advocate question - let's say I don't give my daughter shots. Well, she's going to be bombarded by pollen for 8 weeks, in high doses, and again in August when ragweed season starts and again in the fall when the molds from the falling leaves grow. So how would shots aggravate the situation? if anything, exposing her body to miniscule amounts of the allergen all year long will eventually desensitize her (they changed my quality of life immeasurably and they get their weak immune systems from your truly). And it's not like NOT giving shots is going to keep her body calm and unexposed.

 

From what little I understood of Dr T's posts, allergens probably aren't activating the same TLRs. the body isn't seeing pollen molecules and thinking they're strep and producing Rambo-like strep antibodies that set off to attack the neuronal tissues of the basal ganglia. Instead, the body sees the allergen as something to be eliminated and over produces histamines to flush it away.

 

I'm trying to understand how the allergic reaction can trigger a PANDAS reaction - and I do ask this with a sincere desire to understand - I have a lot at stake with this topic.

 

I do get how IVIG could theoretically help allergies go away, as you get all sorts of antibodies from the IVIG, including the normal ones for step and allergens. But can you help me understand what you think is going on medically that makes the shots a PANDAS trigger?

 

Thanks

Edited March 26, 2010 by LLM

[Fixit]

So here's my devil's advocate question - let's say I don't give my daughter shots. Well, she's going to be bombarded by pollen for 8 weeks, in high doses, and again in August when ragweed season starts and again in the fall when the molds from the falling leaves grow. So how would shots aggravate the situation? if anything, exposing her body to miniscule amounts of the allergen all year long will eventually desensitize her (they changed my quality of life immeasurably and they get their weak immune systems from your truly). And it's not like NOT giving shots is going to keep her body calm and unexposed.

 

From what little I understood of Dr T's posts, allergens probably aren't activating the same TLRs. the body isn't seeing pollen molecules and thinking they're strep and producing Rambo-like strep antibodies that set off to attack the neuronal tissues of the basal ganglia. Instead, the body sees the allergen as something to be eliminated and over produces histamines to flush it away.

 

I'm trying to understand how the allergic reaction can trigger a PANDAS reaction - and I do ask this with a sincere desire to understand - I have a lot at stake with this topic.

 

I do get how IVIG could theoretically help allergies go away, as you get all sorts of antibodies from the IVIG, including the normal ones for step and allergens. But can you help me understand what you think is going on medically that makes the shots a PANDAS trigger?

 

Thanks

 

To me.....(my son is also allergic to all trees, grasses, weeds.)....my theory.....the body is fighting something (the pollen) and its fight all it can...so that in itself is taxing...then wonder....just as you would get an allergy test...your skin inflames, if that is doing the same thing to the brains of these kids...so maybe its just the inflammation itself.....OR/ANd now the inflamation lets other things in...and for us maybe that was the onset of myco p.

if he has post nasal drip. runny nose, shiners, a dry cough(that could be from post nasal drip or myco p) i wyouldn' t be able to tell the difference...we are almost 1 year into this onset...Sons glands were swollen as always when i get him checked and they used to culture strep...as prestning witl illnness.

last couple of times...presesnts with illness and would get abx and tics go byby(and ironicly we went to doc the day before this onset as son said he didn feel good,4/5/09 doc thought it was allergies as test came back neg.)next day started jumping 1000's of times a day...we have progressed to multipole ticsa and now vocals...

anyway that is my theory.....its causing inflamatoin...on the thread i posted yesterday..i posted today about sublingual.....supposed to be lower dosage...you can do at home becasue there is no concern of shock.....but i have still not started...i'm scared of everyighin.....these are not homeopathic

[mom md]

It is my understanding that immunotherapy stimulates the immune system which can make autoimmune diseases (like PANDAS) worse. The World Health Organization released a statement that people with autoimmune diseases should be careful with allergy shots or immunotherapy. I do not think they would necessarily be bad for someone with immunedeficiency but not so great for someone with an autoimmune or overactive immune system.

The sublingual drops are used in Europe but have yet to recieve FDA approval over here for children. An ENT I know is on the board for their approval and said it may be a while.

[Fixit]

It is my understanding that immunotherapy stimulates the immune system which can make autoimmune diseases (like PANDAS) worse. The World Health Organization released a statement that people with autoimmune diseases should be careful with allergy shots or immunotherapy. I do not think they would necessarily be bad for someone with immunedeficiency but not so great for someone with an autoimmune or overactive immune system.

The sublingual drops are used in Europe but have yet to recieve FDA approval over here for children. An ENT I know is on the board for their approval and said it may be a while.

 

 

Hi mom...i never caught your response on this...so you have heard of these sublinguals...

there is an ent /allergy locatoin here in ga that offers them...so for me they are very accessible...

do you know why the approval may take a while????...

hate to be conspiracy theory gal...but...too inexpense and affordable

 

how is your ds...what are/will you do for his allergies???? my ds are terrible..

did the ivig take care of his allergies???.

is he still holding strong in general..i hope!!!!!!!!!!!!!!!!

[Guest alyssa]

After finding an immunologist here in Charlotte that believes in PANDAS she ran a bunch of tests. My son has severe allergies and she recommended starting allergy shots to help "calm" his immune system down. We started them will he was in a mild exacerbation but had him also start 30 days of steroids. After only two shots he is worse. His movements are worse, along with anxiety, mood swings, rages, and OCD. I e-mailed her and told her we needed to stop. Her response was that we needed to push through to see if we can calm this down. I know that in 1989 the World Health Organization released a statement that people with autoimmune disease needed to avoid immunotherapy because it can make their disease worse. I think we are a clear example of this. She does not think we have done it long enough to see. I on the otherhand have seen enough!

It is clear to me that only a few doctors understand this disease. Has anyone done shots and seen a negative effect? My guess is they open the BBB and let the antibodies in and also stimulate the production of the wrong antibodies but I don't know. Any thoughts?

 

 

Are you sure that the actual allergy shots are what made PANDAS worse? I've had PANDAS for 12 years and can tell you from experience LIVING WITH THE DISEASE, that whenever I had to take a steroid burst my symptoms ALWAYS got worse before they got better. (meaning my tics and OCD) When the steroids are actually in the process of calming the immune system it's sort of like an "explosion" in your body which causes an exacerbation. In the following weeks after the steroid burst has been completed is when you should typically see results. IF you started allergy shots and the steroid burst at the same time, I would say you can't really pinpoint what made the tics worse.

I think you shouldn't rule out allergy shots for your child because with PANDAS, allergies can truly make things very difficult. I'm speaking from personal experience. I am going to speak with Dr. Bouboulis in October and am contemplating allergy shots for myself since I have exacerbations during allergy season and very severe outdoor and indoor allergies.

[Guest alyssa]

I did clear the allergy shots through Latimer before we did them. She said she thought it made sense and we should do it. I did seek her advice and it was wrong. It is hard to know what or who to trust. My immunologist even talked to the immunologist Dr. Latimer is using in DC before she came up with this plan. My son seems like he is slowly getting better but we have not done IVIG. My plan is to compelte the steroids and do IVIG if we are not back to baseline. I do think that even the experts don't truly understand this though. Latimer thought shots were OK and might even calm the immune system. Clearly they don't. I hope they can all get together soon and discuss these things to help clear these issues up. It is hard to know which advice to follow.

 

 

Are you sure that the actual allergy shots are what made PANDAS worse? I've had PANDAS for 12 years and can tell you from experience LIVING WITH THE DISEASE, that whenever I had to take a steroid burst my symptoms ALWAYS got worse before they got better. (meaning my tics and OCD) When the steroids are actually in the process of calming the immune system it's sort of like an "explosion" in your body which causes an exacerbation. In the following weeks after the steroid burst has been completed is when you should typically see results. IF you started allergy shots and the steroid burst at the same time, I would say you can't really pinpoint what made the tics worse.

I think you shouldn't rule out allergy shots for your child because with PANDAS, allergies can truly make things very difficult. I'm speaking from personal experience. I am going to speak with Dr. Bouboulis in October and am contemplating allergy shots for myself since I have exacerbations during allergy season and very severe outdoor and indoor allergies.

[fuelforall]

It is my understanding that immunotherapy stimulates the immune system which can make autoimmune diseases (like PANDAS) worse. The World Health Organization released a statement that people with autoimmune diseases should be careful with allergy shots or immunotherapy. I do not think they would necessarily be bad for someone with immunedeficiency but not so great for someone with an autoimmune or overactive immune system.

 

 

Hi!

Yeah, I talked to Dr K about this a couple months back and he said allergy shots are a no-no, any kind of allergy shots. They can cause flare ups of symptoms.

Wouldn't do any more, if I were you. My son had LDA shots and they certainly did not help Pandas. They stopped helping allergies too. So we stopped.

 

Michael

[Suzan]

Are you sure that the actual allergy shots are what made PANDAS worse? I've had PANDAS for 12 years and can tell you from experience LIVING WITH THE DISEASE, that whenever I had to take a steroid burst my symptoms ALWAYS got worse before they got better. (meaning my tics and OCD) When the steroids are actually in the process of calming the immune system it's sort of like an "explosion" in your body which causes an exacerbation. In the following weeks after the steroid burst has been completed is when you should typically see results. IF you started allergy shots and the steroid burst at the same time, I would say you can't really pinpoint what made the tics worse.

I think you shouldn't rule out allergy shots for your child because with PANDAS, allergies can truly make things very difficult. I'm speaking from personal experience. I am going to speak with Dr. Bouboulis in October and am contemplating allergy shots for myself since I have exacerbations during allergy season and very severe outdoor and indoor allergies.

 

I will be interested in hearing what Dr. B says about it. I have been giving my dd allergy shots since June and she has been managing them fine so far. She still has pandas flairs but I have not seen the allergy shots making things worse.

 

Susan

[Fixit]

Are you sure that the actual allergy shots are what made PANDAS worse? I've had PANDAS for 12 years and can tell you from experience LIVING WITH THE DISEASE, that whenever I had to take a steroid burst my symptoms ALWAYS got worse before they got better. (meaning my tics and OCD) When the steroids are actually in the process of calming the immune system it's sort of like an "explosion" in your body which causes an exacerbation. In the following weeks after the steroid burst has been completed is when you should typically see results. IF you started allergy shots and the steroid burst at the same time, I would say you can't really pinpoint what made the tics worse.

I think you shouldn't rule out allergy shots for your child because with PANDAS, allergies can truly make things very difficult. I'm speaking from personal experience. I am going to speak with Dr. Bouboulis in October and am contemplating allergy shots for myself since I have exacerbations during allergy season and very severe outdoor and indoor allergies.

 

I will be interested in hearing what Dr. B says about it. I have been giving my dd allergy shots since June and she has been managing them fine so far. She still has pandas flairs but I have not seen the allergy shots making things worse.

 

Susan

 

This is of HUGE interest to me!!!!!!

do you think her allergies are better!?!?!?!?!

we have not had a spring w/o an onset from a complete remission period and this last spring, since we never acheived full remission it went into full chorea movements and vocals...prior were simple tics...to complex, chaining..

too look at him now you would never believe it...

 

i have opted to not put him in any outside sports this entire year and give his body a chance...he just asked about boy scouts......when spring hits i would like to get a note from doc l or b to keep him inside during recess for feb,mar, april....Yah..lets see how that goes over

 

And i am open to hearing the bad experiences...but has anyone seen improvement....lessoning of allergy symptoms and no knew infection!!!

[Suzan]

This is of HUGE interest to me!!!!!!

do you think her allergies are better!?!?!?!?!

we have not had a spring w/o an onset from a complete remission period and this last spring, since we never acheived full remission it went into full chorea movements and vocals...prior were simple tics...to complex, chaining..

too look at him now you would never believe it...

 

i have opted to not put him in any outside sports this entire year and give his body a chance...he just asked about boy scouts......when spring hits i would like to get a note from doc l or b to keep him inside during recess for feb,mar, april....Yah..lets see how that goes over

 

And i am open to hearing the bad experiences...but has anyone seen improvement....lessoning of allergy symptoms and no knew infection!!!

 

I have not seen an improvement yet. I hear it can take a year before you notice anything and it's been about 4-5 months for us I think. So I am just hoping we can get through this year with allergy shots and notice an improvement in the spring which will be almost a year.

 

An unknown, maybe she'd be doing better after her IVIG's if we weren't doing allergy shots? I don't know but I don't see any negative effects that I can attribute to the shots.

 

I do believe that each child is different so it will be an unknown whether they can do them without increasing symptoms. She tends to be a low responder to immune testing so maybe it's different for her than those who have overactive immune systems? My dd does get much worse in the spring too. That has always been when she is at her worst.

 

Susan