I just want to scream! allergist app. today

[rissakaye]

First of all, I'm not sure if we're over here or going to be in PANDAS. The more this goes on, I'm thinking here, but there's a 72 hour strep culture running right now that should give us more info.

 

My ds developed a motor tic about 2 months ago. After reading on here and seeing him after an ice cream binge at Grandma's, I decided that he needed to try going dairy free. The tic disappeared. We can give him dairy, it comes back. That's been pretty reliable. He also developed a small vocal tic. I'm still working on that.

 

So I decided that it was time we finally allergy tested ds. We've known about seasonal allergies since he was 3. We've also known about tree nut allergies since right before he was 3. Nobody on my side of the family drinks milk so dairy and him probably genetically weren't going to get along anyway. I just wanted the specific list to see if there were any triggers that I could eliminate.

 

Today was the test. I have never walked out of a dr's appointment, but I almost did. Even my daughter commented on how rude the allergist was. We went to this guy because one of my friend's highly recommends him. Her daughters have severe food allergies. She also mentioned that he had also referred her to a homeopath which I took as a good sign that he was a bit open to non-mainstream things. Boy, was I wrong.

 

He almost yelled at us the whole time. He was just incredibly loud. He referred to dairy being a cause of ds's tics as "preposterous." I mentioned I had weeks of food journaling with tic info. He said he didn't care. The only way he was going to believe it was if I showed him a double-blind test about it. He thinks that ds was just acting to please me. Ds can't even duplicate the tic when it's not happening. He's tried. He kept listing his credentials as to how smart he was and how many associations he belonged to. It was honestly the most infuriating dr's appointment I've been too.

 

I guess the only bright side is that we got the allergy test done and I now have a list of allergies for my ds.

 

Going forward, we'll see what the result of the strep culture is tomorrow. Then, I've told our primary dr. that I'll talk to a ped. neurologist, but I will talk first. If they have tests that they can explain as to why they might help, then we'll probably do them. But I just need to talk to a dr. first to have confidence in them. I wish I had insisted on that today.

 

The other part that I'm weighing is how far do we push finding out the cause of the tics? Ds, so far, has just had a small motor tic that disappeared with the dairy elimination and a vocal tic that he can mask with gum. At this point, how far do you chase it?

 

Marissa

[mar]

I feel you!!! You just want to explode on everyone and everything! We have allergy, we have intolerances, we have tics, we have add, we have everything which is how I feel!! I know ds acts out with food , Its just better now bc he is older but the last three years point to food all the way! Even now I limit sugar bc dd gets affected more. But food and allergies helps with tics dramatically . Also helping to heal the gut. Ds was on tons of antibiotics for ear infections and colds and strep. He has been off them and he is doing good!! Both ds and dd are dairy free along with wheat/ gluten free for different reasons!! Ds with tics and dd with stomach and leg pains! Tics can be caused bc of several things. My ds had tics and has them occasionly bc of Allergies. When they are controlled by food or allergies I know it's not ts. Could it be pandas maybe they both had there share of strep! As I did as a child . Basically yes watch foods!! Watch sugar and everything. Never stop at tics . There is a reason for it. Also gum goes well! As they get older its good to get them chewing it is relaxing.

[Kayanne]

The other part that I'm weighing is how far do we push finding out the cause of the tics? Ds, so far, has just had a small motor tic that disappeared with the dairy elimination and a vocal tic that he can mask with gum. At this point, how far do you chase it?

 

You chase it as far as you and your son are comfortable chasing it. It is a very personal decision based on how well the tic is being tolerated and if it is interfering with day-to-day life. I have a PANDAS daughter who mostly has OCD for her symptoms. But her siblings have gotten very mild and transient tics. I've tested for strep at those times and the swabs and titers have been negative. Then I ask them if they care about it, and usually they don't. So I don't pursue it anymore. The worst was last year, my son was blowing into his hands for about a month. It never escalated and gradually decreased. He didn't like getting his blood drawn for strep titers, and I think that was the worst thing about it for him. Their Father also has tics that we only came to be aware of when we learned of PANDAS.

Edited June 13, 2013 by Kayanne