I think my daughter has PANDAS

[canadianmom]

Hello,

 

Here is our story. Our daughter is now 9. About a year ago she started two tics. One is a low moan and one is a nose crinkle. They were very mild and not very often. We would notice them maybe once a week or so. No one outside of our family ever even noticed.

 

However, last week, she literally woke up one day with two brand new tics. An eye opening one where she opens here eyes super wide and holds them open for a few seconds, and another where she abruptly turns her head to one side, looks up and then rolls her eyes. These tics are very often. She does them many times per minute at times. And other people have noticed right away.

 

She hasn't had strep that I've noticed recently. However, she did have a rough time around a year ago where she had strep about 4 or 5 times within a four month span, and one time she had it, and then finished the antibiotics and a few days it came back. I also noticed in the fall November and December that her tonsils seemed really big to me and she had a few episodes of choking. When she went for her checkup in January though, I mentioned the tonsils, but by then her tonsils seemed to be smaller, and the doctor didn't think anything of it.

 

My husband took her to the doctor today about the tics as I am travelling and the doctor didn't think it was PANDAS, but likely related to stress, but is referring us to a pediatric neurologist. However... in Canada... who knows how long that will take.

 

The sudden, dramatic change in tics really makes me think it is PANDAS, as opposed to stress or tourettes or something. And I am worried that if we wait too long without treatment she will just get worse.

 

What should be our next steps?

 

Should I push for some tests? What tests?

[MamaV]

Hi there,

 

I am also a Canadian mom. It is difficult to find doctors who are familiar with PANDAS/PANS. Fortunately there is a naturopathic doctor in BC who specializes in these issues - Dr. Ayla Wilson. She is very well regarded and many families across Canada (including mine) are working with her. I'm aware that she attended a conference last year in Saskatchewan where the expert American doctors were also present (Dr. Swedo and Dr. Murphy). She has a facebook page called 'PANDAS treatment Canada', and also a website (just google her name). She does phone consultations and is probably your best and fastest bet in terms of an opinion on whether your daughter may have PANDAS. Hope you find some answers soon.

[MamaV]

Oh and she can order some tests (at least in BC) though you will have to pay. Kids may have strep infections that don't manifest as sore throats, and other infections can trigger PANS, so Dr. Wilson orders tests if she suspects PANDAS/PANS

[canadianmom]

We live in Ontario, so don't think that doctor can helps us. My family doctor is usually pretty up on literature and trends etc.

Apparently it will be 2-4 months my husband said for the pediatric neurologist (I'm actually shocked it isn't longer), but am worried in the meantime to wait any longer...

 

I may take her back to the doctor myself when I get back and push for more testing. It is so hard when I don't want to wait and chance things getting worse.

[pr40]

if your dr is open to new things, he/she should be open to the possibility that "stress" doesn't mean much. "stress" has certain mechanism by which it causes the symptoms you see. ask your dr what mechanism, if not autoimmune, does he/she think this stress follows. sometimes, drs can be persuaded to do their job. I would argue for, at least, trial run of abx while you wait for the neuro.

[canadianmom]

Yes, I spoke with my husband more and he said he got the impression that our Dr wasn't really sure what PANDAS was, or hadn't heard of it.

 

I am going to book her another appointment as apparently it will be 2-4 months for the neurologist.

[chubbermommy]

There is a PANDAS/PANS Ontario Support group on Facebook. We're quite active so please join.

[canadianmom]

I did request access. Just waiting for approval

[pr40]

I suppose you do know that you can show NIH web page to your dr if he she doesn't know what pandas is.

Here is one of the many pages

http://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml

[canadianmom]

Chubbermommy - Do you know how I can get access to that Facebook group? Still waiting for approval.

 

pr40 - Thanks, that is what I plan to do. Like I said, I was travelling, and my husband took my daughter and my husband said my doctor didn't seem to know what PANDAS was, so I am planning on taking her back after I am back from my trip, armed with some articles, to see what he thinks.

 

I hope he is open to trying some treatment or at least testing her, because... maybe I'm wrong, but if I'm not, this could be damaging her brain.....