JenniferG Posted April 10, 2015 Report Share Posted April 10, 2015 My ds 7 twins just had allergy testing and tested posted for quite a bit...trees, grasses, horse, mold. Dr. B suggested allergy shots. My question is 2 fold 1. Has anyone tried D Hist Jr.? Is it a problem for PANDAS kids or kids with + MTHFR A1298C +/-? 2. Has anyone tried allergy shots? What is in them besides the allergen? The theory sounds great by my kids are deadly afraid of needles. I have just heard of Sublingual Immunotherapy from Dr. S. Has anyone done this? I am looking for something to help with the allergens while we decide. They don't do well with Claritan etc. Benadryl helps but it dries them out and them both have sinus infections now, so that won't work. Would this mean they have high histamines? Sorry for the slew of questions! Any info would be appreciated!! Jen Link to comment Share on other sites More sharing options...
jtp Posted April 10, 2015 Report Share Posted April 10, 2015 Hi Jen, My DS 14 is a patient of Dr B's too. He has been on a maintenance dose for almost a year and it took us about a year to work up to that dose. His reactions to the shots only a happened a couple of times and it was just a tender area or swollen area where the shots were given. Mostly he reacted to the mold injections...His worst allergy is pet danger then dust and mold. It has definitely worked for us, but keep in mind this a commitment. Especially in the beginning but now he receives 3 shots once a month. I don't have another appt with Dr B until this summer, but at that time we will discuss how long we need to continue with the shots. I'm assuming a couple more years. He hasn't had a sinus infection for a least a year and half. Sorry I can't answer your other questions, but we are really pleased with the results of the injections. Hope this helps. Link to comment Share on other sites More sharing options...
JenniferG Posted April 10, 2015 Author Report Share Posted April 10, 2015 Hi Jen, My DS 14 is a patient of Dr B's too. He has been on a maintenance dose for almost a year and it took us about a year to work up to that dose. His reactions to the shots only a happened a couple of times and it was just a tender area or swollen area where the shots were given. Mostly he reacted to the mold injections...His worst allergy is pet danger then dust and mold. It has definitely worked for us, but keep in mind this a commitment. Especially in the beginning but now he receives 3 shots once a month. I don't have another appt with Dr B until this summer, but at that time we will discuss how long we need to continue with the shots. I'm assuming a couple more years. He hasn't had a sinus infection for a least a year and half. Sorry I can't answer your other questions, but we are really pleased with the results of the injections. Hope this helps. Do you get one shot per allergen?? That would be a lot of shots for my DS's. Both boys have chronic sinusistis. Is that what your child has? Link to comment Share on other sites More sharing options...
JenniferG Posted April 10, 2015 Author Report Share Posted April 10, 2015 Also, did you do the Intra dermal tearing also? Link to comment Share on other sites More sharing options...
MaryAW Posted April 11, 2015 Report Share Posted April 11, 2015 I am going thru this too and have been debating the shots for over a year now. My DD tested positive for almost everything, BUT she is definitely not allergic to all of it. We notice a reaction to mold and grass pollen only. I decided to go to a different allergist for a 2nd opinion. We are waiting on blood tests for the allergies because the new doc said someone with sensitive skin (my DD has that big time) could react to the pricks and intradermal tests because of the hypersensitivity. Hopefully the blood test will give us the truth. Also, I asked Dr. Swedo about this at a conference and she thought it could be that the immune system is so inflamed that it is reacting to the allergens, but that my DD is not necessarily allergic. We need to work on reducing the inflammation in the immune system and the "allergic" response should improve. And we have seen this improve over the past year and a half. Also, it is my understanding they bundle everything in one shot. Link to comment Share on other sites More sharing options...
reactive Posted April 15, 2015 Report Share Posted April 15, 2015 This thread is interesting to me. My DS14 PANS has allergies, but they have varied in intensity over the years. In 2010 I had the allergy shots ready to go. But he was not in a major flare at the time and I was afraid of triggering the PANDAS/PANS so I chickened out. They actually had them ready to go and I changed my mind. They did bundle the allergens together for those shots we never got...but he had so many positives on the back testing he would have needed 3 shots per week at the beginning. So they could not get them all in one shot. He is very fair and has very sensitive skin so now I wonder...he was tested for 56 items and was 3+ to 4+ for all of them except one: he was negative for dust mites go figure. But he was positive for every mold, tree, grass and weed they tested for. That was so long ago I know he would need retested if we ever considered allergy shots again. He is flaring now, only stable on steroids, so if I ever did that I would ask for blood testing (isn't that the RAST testing?) I was wondering what Dr. B's opinion on allergy shots would be. I have the opinion of 2 rheum. and one said yes and the other said no way. But I can see that allergy issues are triggering DS now...but it is a chicken/egg issue for me (what is triggering what) Link to comment Share on other sites More sharing options...
MaryAW Posted April 16, 2015 Report Share Posted April 16, 2015 I'm in the same mess, but it's even worse! The original skin prick was just positive for dustmites; however, she flares when the pollen counts are high (like now!)She has very sensitive skin, so we don't trust the intradermal testing - she tested positive for almost everything. So we did the blood testing. However, she has an antibody deficiency, so we're not sure how accurate that is either (the blood allergy testing checks the antibody response to various allergens). It showed just an allergy to dustmites. So, maybe she really is only allergic to dustmites and she flares because her immune system is so inflamed? Or maybe she has high histamines? I guess we may do another blood test for this. We need to talk to her doctor. There is no doubt in my mind that the high pollen makes her flare, but how do we treat that if she is not technically allergic? I am so confused. BTW - Dr. B is pro-immunotherapy. Shots, not sublingual. I think they start with a lower dose with the PANS kids. reactive 1 Link to comment Share on other sites More sharing options...
reactive Posted April 17, 2015 Report Share Posted April 17, 2015 Hmmm My ds who has so many allergies has a low IgG level now. He did not have low IgG when his allergy testing was done...but it was low last year and is still low even though IVIG given this past August. Link to comment Share on other sites More sharing options...
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