Don't know where to start really..

[MMMommy]

I was here before but could not remember my username from before.

 

My son is 8.5. He is in 3rd grade. When he was in first grade he developed tics. Started with throat clearing and then moved up.. He had 2 rounds of strep that year.

 

They went away for awhile and then started up when school did again.

 

I had him evaluated last winter, 2012, By a Pediatric psychiatrist/neurologist at CHOP. But she said she did not think it was PANDAS and ordered blood work. It was done but it was not positive for a PANDAS diagnosis..

 

His tics go away for a long time. I can usually tell when they are coming because the behavior changes first and then the tics show up. This time it has been more than 4 months without them. His teacher is aware and except for the beginning of the year, She has seen nothing. Now he has gotten adept at hiding some of the smaller ones from strangers, but I can tell.

 

I don't know where to go. I don't want him medicated for OCD if that is not really what the cause is. Money is an issue but I will beg borrow and steal if I can help him.

 

We are outside of Philly..

 

Any advice is appreciated..

 

Thanks!

 

MMM

[philamom]

Welcome MMM. I went to CHOP in 2005 and again in 2009 (Neurology/Psychiatrist). I am so glad I went against their opinion/advice. I will try and send you a private message in the next few days. There are a few other parents here in the area. You may want to post this in the PANS section as well. I almost missed the post - as the forum has just recently been upgraded and new headings have been added.

 

edit to mention that negative ASO & D-Nase B titers (blood tests) do not rule out a PANDAS diagnosis.

Edited April 3, 2013 by philamom

[Sheila]

Hi MMMommy, I just wanted to say hi, and that I hope you find the help you need for your son very soon.

 

I think you'll find lots of good ideas on both the PANS and Tourette Syndrome & Tics Forums. We're glad you're here! Sheila

[philamom]

Yes, I'm not implying that your child has PANDAS (PANS). But since you mentioned strep in the past, I'm glad you're digging a little deeper. I think the Cunningham test will be available soon. You can get a link to the lab on the PANS forum.

 

Yes, wonderful information on this site (all forums). I don't know where I would be without the amazing support and suggestions/ideas from the parents here.

[MMMommy]

Thank you. I did not want to post my story without being directed,. I don't know what is going on frankly. I have been told everything from Possible PANDAS to childhood tics that can disappear with time..

 

Today he is not showing active tics.

 

The only thing from yesterday to today is that he was throwing up last night.. Virus? Could that make them worse?

 

My frustration comes from having people tell me that PANDAS does not exist. There was a dr that I emailed a year or so ago,(trifeletti?) In Jersey and he had me start my son on Ibuprofen and I did. I saw slight improvement..

 

I just don't know how to make the right steps. I don't want to just grab onto PANDAS because I am frantic to make the tics stop.. I want to make sure I am doing the right thing for him..

 

So frustrating..

 

Thank you so much for responding.

[Dedee]

Welcome to this forum.....please feel free to post in what ever area you feel your heart leads you. It sounds like you are suspicious that your son may have PANDAS or PANS. If that is what your Motherly instinct tells you then you should investigate that possibility. Do not let any Doctor tell you other wise. Especially since you seem to have good reason for feeling the way you do. First let me say that lab work can be mis-leading. Unless you have had a very thorough work up by one of the top PANDAS / PANS specialist in the Nation, put that aside. Many things can cause PANS.....strep, Mycoplasma, lyme, viruses, etc.... You mention that you see some behaviour changes along with the tics. That is very classic of PANS / PANDAS. There is a lot of good informtion of the PANDASnetwork.org website along with links to many good articles. Arm yourself with information and do not let anyone discourage you. I have 3 children with PANS. I started fighting this battle 11 years ago when very little was known about PANDAS and certainly many people thought I was crazy to think my son's OCD was caused by a throat infection. We regularly drove 12 hours to see a specialist. Please feel free to join the PANS / PANDAS group if you want more information. It's a great group for support and information.

 

Dedee

[pr40]

you may want to post your original post again on the PANDAS forum. you are more likely to get read there.