Allergy shots

[mom md]

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?

[bronxmom2]

I'm so sorry you guys are going through this!

 

I think you should consult with Dr. Bouboulis in Connecticut. He seems to understand PANDAS and the immune system better than anyone I've talked to.

[KeithandElizabeth]

I am having similar issues, but with allergy pills (Zertec and Sinclaire) I go back and forth between giving them to my son or avoiding them. I think I am going to stick with the Zertec for now, but avoid the Sinclaire because it makes my son so hyper.

 

If you learn anything else, let me know.

 

elizabeth

[Suzan]

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?

 

 

Does she have anything to back up the fact that it's safe to push through? I'm sure she does not specifically for PANDAS patients but I imagine this has come up for other auto immune conditions?

 

Has anyone had discussions with any of the other docs (Dr. K, Dr. L, etc.) about their thoughts on allergy shots?

 

Susan

[Ellen]

Sorry to hear about the setback after the allergy shots. I think you are right in stopping them for good. I agree with BronxMom that it my be helpful to speak with Dr. Bouboulis. My son has many environmental allergies, and we are trying to keep them under control with Nasonex and various supplements suggested by his DAN doctor. When we had our initial consult with Dr. Bouboulis he mentioned the possibility of allergy shots in the future, but he backed off as soon as my husband and I expressed our reservations. I guess because allergy shots are like vaccines in a way and because my son had such a bad exacerbation from vaccines in the past, I was not comfortable with any kind of shot. Dr. Bouboulis totally respects this and he also gets how vaccines can harm children with PANDAS. He is the kind of doc who listens and learns from parents' stories and would not push on if you said your child had a bad reaction to something. I think if you had a conversation with him, he would hear that the allergy shots did worsen your son and might even try to explain that and/or offer possible alternatives you could explore.

I am hopeful that IVIG might help with my son's allergies in addition to the PANDAS symptoms. Dr. Bouboulis thinks it will help with PANDAS and immune issues and not necessarily allergies, but I do remember Diana saying her son's allergies cleared up after IVIG. So I think it's possible.

 

Ellen

 

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?

[Diana]

Hi there MD Mom. Your immunologist has NO experience with Pandas. Look, Dr. Kovacevic, Latimer and Trifiletti - each have treated about 300 cases - per doctor. Each of them. You need to seek their advice and trust it.

 

I don't believe you have done IVIG yet. I have seen and at least 5 other post-ivig parents I've talked to have seen that IVIG absolutely clears up allergies as well as calming the immune system with pandas kids. The CamKinase is activated in the brain and all efforts need to be made to calm the CamKinase. Allergy shots, flu shots, re-vaccinating, even deep dental work, while the child is repairing is just not a good idea. I think of our kids as if they are receiving an "organ donation." Organ donors need stability physically until the body adapts.

 

Finally, allergies ARE an overactive autoimmune response. It is a malfunction albeit mild. I have talked to Latimer and Trifiletti and told them that for GOODNESS SAKE they need to tell parents to just keep things uneventful after Plasma Exchange and IVIG. It is only logical I think. I don't know the antibiotic dose your on now or if you've done a steroid burst --- but allergy shots sure won't calm things -- it seems like the Immunologist is really mistaken.

[fuelforall]

Hm, I would say the only allergy shots worth having are LDA(low dose allergen) shots. There can be unmasking issues but they do eventually calm down.

 

drshrader.com

 

My son's allergies have been steadily decreasing after five rounds of shots that take place every two months. It's worth investigating, DAN doctors know all about LDA/EPD shots.

 

Michael

[EAMom]

Hm, I would say the only allergy shots worth having are LDA(low dose allergen) shots. There can be unmasking issues but they do eventually calm down.

 

drshrader.com

 

My son's allergies have been steadily decreasing after five rounds of shots that take place every two months. It's worth investigating, DAN doctors know all about LDA/EPD shots.

 

Michael

 

Micheal,

how is your son doing nowadays? Any better since IVIG...I remember initially there wasn't the improvement you were hoping for.

 

I'm curious....are allergies improved since IVIG? and have you done any allergy shots since IVIG?

[EAMom]

Hi Mom md,

I just wanted to add that I completely agree with everything Diana said....it seems like a bad idea to mess around with the immune system in this way at this time.

 

I sure hope things settle down for your son quickly!

[fuelforall]

Hi, no,IVIG hasn't done much for us at this point, alas.

Yes, we did LDA about a month after IVIG. No impact one way or the other. But as I said, generally allergies are lessened so far. He never seems as anxious when we do the shots, and they are QUITE anxiety-producing as they do hurt. He does get rewards, of course, so that helps him along a bit.

We're supposed to do more IVIG next year. We'll see. Just upped his Zith to 250 mg a day and may do double that for five days as an experiment.

M

[mom md]

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.

[Suzan]

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.

 

I will see what Dr. Trifiletti thinks when we go next week. It's so hard to know what is right for our kids! I am glad that you are seeing some improvement...

 

Susan

[P_Mom]

That kinda freaks me out that Latimer would think the allergy shots would calm his immune system.....the shots, just like immunizations, are designed to ellicit an exaggerated immune response. So many PANDAS kids get a rise in symptoms with their allergies (like my son), because an allergy response is an over active immune response....thus producing PANDAS symptoms just like any other immune stimulant. So, it would seem pretty clear to me to stay away from anything that stimulates the immune system??!!! Right? With allergy shots, overtime, this immune response is supposed to diminish....but at what cost in the meantime????

[Stephanie2]

Mom MD,

 

I take it you are a physician (?) so I am not sure what you think of the DAN protocol, but it has done wonders for my son's allergies/severe croup/asthma. Just to give you a picture of the before and after...before: constant colds, allergies, ear infections (even with tubes he still got them), sinus infections, severe croup, steroids, antibiotics, nebulizer (which with the auditory and tactile defensiveness caused by PANDAS was ###### on earth to administer), singulair and zyrtec (which caused severe behavior issues). After: NO allergies, NO croup, NO ear infections, NO sinus infections, NO nebulizer, NO singulair, NO zyrtec, NO steroids. Just before we started the DAN protocol I was about to start allergy shots, but the DAN told me to give him a chance and I did and it all went away IMMEDIATELY!

 

BTW, I didn't even start the DAN protocol with his allergies/asthma in mind. I figured that was a nightmare that we were stuck with. I was shocked and elated that the "fix" was so quick!

 

He is on a ton of supplements, but he is also gluten and dairy free. We did most of this all at once so it is hard to say what cured him, but I will say this: 6 months after removing dairy I did a trial of dairy (to see if I could add it back) and BAM he had mild croup that night. I have never given it to him again and probably never will. It is amazing to not have to deal with all that.

 

I just wish it were that easy with getting rid of pandas, although there may be something to be said for that too. My son is a big responder to the abx and we have not had to do ivig...maybe b/c there has been such a change with his immune system...

 

Just my 2 cents

Stephanie

 

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?

[Fixit]

Mom MD,

 

I take it you are a physician (?) so I am not sure what you think of the DAN protocol, but it has done wonders for my son's allergies/severe croup/asthma. Just to give you a picture of the before and after...before: constant colds, allergies, ear infections (even with tubes he still got them), sinus infections, severe croup, steroids, antibiotics, nebulizer (which with the auditory and tactile defensiveness caused by PANDAS was ###### on earth to administer), singulair and zyrtec (which caused severe behavior issues). After: NO allergies, NO croup, NO ear infections, NO sinus infections, NO nebulizer, NO singulair, NO zyrtec, NO steroids. Just before we started the DAN protocol I was about to start allergy shots, but the DAN told me to give him a chance and I did and it all went away IMMEDIATELY!

 

BTW, I didn't even start the DAN protocol with his allergies/asthma in mind. I figured that was a nightmare that we were stuck with. I was shocked and elated that the "fix" was so quick!

 

He is on a ton of supplements, but he is also gluten and dairy free. We did most of this all at once so it is hard to say what cured him, but I will say this: 6 months after removing dairy I did a trial of dairy (to see if I could add it back) and BAM he had mild croup that night. I have never given it to him again and probably never will. It is amazing to not have to deal with all that.

 

I just wish it were that easy with getting rid of pandas, although there may be something to be said for that too. My son is a big responder to the abx and we have not had to do ivig...maybe b/c there has been such a change with his immune system...

 

Just my 2 cents

Stephanie

 

 

I don't understand this process...the dan version of allergy shots are lower than regular al-shots and 1x a mont???

do only dan's do this system?

sublinguals are supposed to be low dose too...that's why you can do them at home..no concern of going into shock...after they do the first one in office