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mcturro

Overwhelmed, allergy triggers dismissal of PANDAS

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Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay:

 

 

Posted Yesterday, 08:48 PM

First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story....

 

But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies.

 

Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July.

 

Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics.

 

Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s.

 

His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems.

 

Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics).

 

She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?).

 

We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement.

 

We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time.

 

Could this be the allergy coming out in tics? Or is it just a trigger to the tics?

 

It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex.

 

Tonight he started shoulder shrugging and neck bending. It's bad.

 

Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps.

 

Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!

 

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Since allergies are technically an "immune event," i.e., trigger an immune response, I definitely think they could contribute to the tics, if not be solely responsible for them.

 

Just a note about the supplements; I would scrap the B-Complex because I don't know that you want the B-12. Someone else here can perhaps add to or correct me on this, but I believe that B-12 encourages histamine production which would be counter-active to all the allergy control interventions you're undertaking. My DS has numerous environmental allergies (dust, mold, pollen, cats), and we found that he responds best to B-6 without any B-12.

 

Good luck to you! I'm sure some others will chime in here soon!

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When your PANDAS specialist did a "thorough evaluation," did you do a Cunningham panel? And are any other symptoms present (bedwetting, OCD, behavior, separation anxiety, etc.?).

DS16's tic trajectory is similar to yours, and we have a family history of OCD, and tics but not in immediate fam. So he's always had a TS dx. But I remember the day he ticced straight for 12 hours (yelping every few seconds), it was so dramatic and that didn't seem like TS to me. He was sick around the same time. His tics got so bad over the years, especially the neck jerking, it was scary. We also tried
10 days of antibiotics, which is not enough if it's PANDAS.

 

Anyway, finally connected w/a PANDAS specialist in 2014, and when our Cunningham results came back, everything was in normal range EXCEPT CamKinase II, which is indicated in tics!! After 2 years of intensive PANS treatment DS16 is much better, tics only present when he's really anxious or stressed, or flaring. Neuropsychiatric symptoms have calmed way down.

Allergies are a trigger for us as well, in terms of other PANS flaring symptoms, but not so much tics anymore!

 

Good luck!


Edited by tj21

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mcturro - wondering what you did and how things were going for your child?

My DD has been doing very well but reacts to mold spores, so when June rolled around so did her OCD. It was getting really bad. Dr. B recommended allergy shots, but I'd like not to do that if possible. Plus that would take a long time to be effective.

We just bought 2 HEPA air purifiers - Alen BreatheSmart and the Honeywell True HEPA Allergen Remover HPA300. We have one upstairs and one down in her playroom. We had the Honeywell first and it helped a lot, but after we got the Alen, she said the OCD was gone. Not sure if its the Alen or having two instead of one. Alen is expensive, but so worth not having her flair. Thought this might help you or someone else :)

Edited by maryaw

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For my son an infection can trigger a tic. Have you had your son checked to see if he has a sinus infection? A high strep titer can make him tic (ASO, DNAose, Mycoplasma). When your child has a lot of environmental allergies they can have sinus issues. One thing that has worked great for my son and has cleared his nose is using essential oils. I bought on Amazon an essential oil nasal spray bottle. You can put either saline water, or filtered water with a pinch of salt with 4 drops of lavender, 2 drops of lemon, and 2 drops of peppermint. You can have him do 2 sprays in each nostril in the morning and at night. The other thing that made my son tic is food allergies. My son has a lot of food allergies but the ones that make him tic are soy, gluten, msg, preservatives. Have you had food allergy testing done? At first I just did an ellimination diet for 6 weeks I removed all major allergens then reintroduced them. My son would tic after eating wheat pasta, pizza. The funny thing is he has never tested positive for a wheat allergy. His doctor said he has an autoimmune reaction where his body is thinking gluten is an infection and starts fighting it. When doing the elimination diet I gave him soy ice cream. I first eliminated gluten, and dairy. Fifteen minutes after eating the ice cream he ticked. My son also ticks to preservatives. (Sodium Benzoate, Potassium Sorbate, Polysorbate, BHT, rbst). I hope this helps.

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I am not sure if I am remembering correctly, but I thought Sheila posted something about 6-9 months ago regarding a new patch that appeared to be very effective with tics.....

 

The company was offering a free trial with the patch?

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