Bloodwork and nearly tic free?

[texanmom]

My daughter started having many vocal tics and some motor tics in February. We've seen OCD, emotional outbursts, etc. We hadn't gone more than a day or two tic-free. A pediatric neurologist told us in May he thought it was going to be Tourette's. I read the Natural Treatment book and have been researching online--I wanted to get another opinion. I have an appt with one of the doctors from the PANDAS network web site next week. We will be traveling 4 hours and he has ordered a lengthy list of blood work. For the first time since February, she has now been 8 days with very few tics (maybe two or three vocal tics in a day--whereas before it was one every 20 seconds or so all day).

 

If it is Tourette's I understand this could be the wax and wane. Could it still be PANDAS related with this period of very few tics despite any treatment? Is it worth it to do all the lab work now or does it need to be during more of a flare up? The last time my daughter had blood work she fainted. She was extremely cooperative but it was a little traumatic for her. I want to make sure that when we draw blood, the timing is good and we are looking at useful information.

[Missmom]

Just my opinion, but if you have the appointment soon with a pandas reputable doctor, I would definitely keep the appointment and get the labs... That is as long as you have insurance or can financially afford to do this. Sometimes it takes us months to get these appointments and flair ups can happen overnight. I would at least want the baseline on labs and to be an established patient with a good doctor. Then when and if another flair up starts you can call the doctor and get in quicker. He will also have labs to compare and be more willing to start treatment right away.

 

I would hate for you to cancel the appointment then regret it a few weeks later. It helps to make sure your child is completely hydrated and had a good meal before labs unless the doctor tells you she needs to fast. We have never been told to fast though. The Elma cream will numb the injection site if you apply it thirty mins before the blood draw and she won't feel a thing. Unfortunately bloodwork is just a necessary evil in all of this. Hope this helps you.

[Dedee]

If it were me I would still go. Your doctor will be drawing blood to look for infection, and looking for immune issues. These things will not change even if your daughter is having a good day. I doubt that this issue has resolved. Most likely you are just getting a reprieve. Your doctor may think this is Tourette's but remember that Tourette's does not come with OCD symptoms, moodiness, behavior changes, etc.... These are all symptoms of PANS. Many kids have issues with having their blood drawn. My dd is terrible. However, this is a very important part of the puzzle so I would recommend getting through it any way you can. Make sure she is laying down, etc..

 

It's good you found someone four hours away. That's not too bad. Our LLMD is four hours away, but our PANS doctor we used to see was 11 hours away. It will be well worth your trip. Keep us updated on how things go. Best of luck on your trip.

 

Dedee

[texanmom]

Thanks. That is helpful and encouraging. We are going to get prepared and ready for the blood work.

 

Two other questions--

 

Before getting the appt with the PANDAS doctor, I took her to a second local doctor to see if he would be any help. He wasn't really but referred us for a psychological evaluation (he was thinking perhaps anxiety disorder related to OCD). What do you think about waiting on this until after next week's appt with the PANDAS doctor?

 

Also, the PANDAS doctor discussed an oral, rectal and vaginal swab for strep? How have your kids handled this?

[Missmom]

I don't know what pandas dr. You will be seeing but sounds very encouraging. It seems your dd will be getting a very thorough evaluation. You should definitely go to see this pandas doctor. Now about the psychiatrist...... If you really think it will help I would go but my guess is that they will give some anxiety disorder diagnosis and prescribe some anti-psych meds, yada, yada. I am not saying that this can't help some kids but in so many cases it does more harm than good. You will have to just use your best judgement on all of this.

[norcalmom]

Numbing cream for arm(we use lidocaine you doctor has to prescribe)- definitely get. I'd also make sure to get the Cunningham panel of tests-these are the only pandas specific tests- if they ate high you know you are dealing with autoimmune issue. If they are normal, probably not autoimmune, for many here, these are the tests that made it clear our kids have pandas.

ALOT of kids have pandas without ever having strep, and strep is so common among school age kids- it's pretty normal for the to have elevated titers( kids without pandas, the general population). That's why it's so difficult to diagnose

If you are seeing a pandas specialist you are in good hands, but I'd still ask about the Cunningham test.

It won't tell you what infection your child may have or had that set off the autoimmune reaction. Or if your child has any immune system anomalies, but it will tell you if your child is making autoantibodies to their brain tissue. It's like a screening test.

Good luck- and I think you are absolutely doing the right thing. So many kids get misdiagnosed because the doctors they see, although well meaning, dont have the experience to decipher pandas from regular Tourette's or OCD.

We got a transient tic diagnosis from pediatrician, and a probable Tourette's diagnosis from a neurologist before getting a correct diagnosis- once I sought out a specialist on OCD ( that I noticed after the tics) AND pandas. Also - never did have a raised strep titer or positive culture . BUT in retrospect did most likely have perianal strep- about 2 months prior to when he started ticcing. I only discovered you could have strep in other areas 2? Years later. So your pandas doc knows his her stuff- if they are doing rectal swab.

 

Cunningham tests from Moleculera labs-

http://www.moleculera.com/

[texanmom]

Thanks everyone! We did go this morning for the labwork. She started getting balmy and closing her eyes, but we started fanning her and talking to her and she came back. So it went better than last time!

 

The doctor we are seeing is listed as one of the 'leading physicians' on the PANDAS network site. I feel confident that we are finally headed in the right direction.