Overwhelmed by tics and allergy triggers

[mcturro]

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!

[Chemar]

Hi

How good to hear that Sheila's book and the website/forums have been of help to you.

 

It's good that you are working to eliminate allergens etc, but I do wonder about the dismissal of PANDAS? As far as I know, a family history of tics (even TS) and the existence of allergies does not exclude the possibility of PANS/PANDAS? I would want a second opinion on that! Especially with the fact that the ASO was high? Maybe also post on our PANDAS forum to get input from the parents there. They are very up on all the latest info, testing etc

[Chemar]

Hi

I just got back from work so wanted to also add that with supplements, good and pure are essential but that does not necessarily equate to expensive

 

I know many Integrative/Alternative etc physicians do often also sell the supps and many are excellent, but often there are other brands also pure and effective that do the same, or even better job! Here's a site that compares and does testing, though their lists are not yet comprehensive but growing https://labdoor.com/

 

I know some people with allergies avoid B12 due to histamine, but my son has always found it essential, and he takes it with only the P-5-P form of B6

But it *must* be the methylcobalamin form, not the poorly absorbed cyano form.

He has never been able to tolerate B Complex, and so takes the Bs needed for him individually and gets the rest in a good Multi

 

I do hope you get answers. Whether or not PANDAS is there, there are still other triggers for tics so it is great you are sleuthing to uncover potential triggers