New to this

[lovemy3kids]

I am a new member hoping to get some insight. My son is 10 years old was diagnosed with TS from a neurologist in this past fall. Leading up that that over the summer my son was put on a medication (Focalin) for his ADHD (Inattentive type) and developed "tics" consisting of facial movments, shoulder shrugging, head jerking, slurred speech and therefore not seeing this before I actually took him to the ED where I was told that I should follow up with Neuro. Previous to this past summer my son has dispalyed tics before from the 1st grade when I look back at it all. I remember concerns around him blinking all the time, but an eye exam ruled out anything, and from 2nd to 4th grade things progressed. However, things such as nose twicthcing, throat clearing, barking, walking on all fours, nail biting, all of a sudden not being able to sleep by himself, to constantly tryign to scare people with "boo", to crying when I would leave the house would all be attributed to him being "immature, being a boy, his silly personality to acting out due to my divorce with his dad". I think the tics have been there and I just never put two and two together. Oh and his handwriting has gotten so bad. Actually, his performance as school has come way down to where he can't ever write a sentence and the teachers always seem to find joy in showing me the erasers, papers, and other items he has "destryoed" from poking holes in, chewing, marking all over etc. My son has a long history of strep throat and other health issues that could have killed him. I guess PANDAS could be a possibility, but am not sure how the ped. will take it when I present info to him. I am not new to advocating and researching, since both my boys have a long medical history, but knowing my sons' ped and Neruo I think they will think I am crazy. In the midst of all this, I am dealing with Autism, LKS variant in my younger one and the boys' healths issues as well. Just hoping to get some insight.

 

Thanks

[Suzan]

Hello, good morning and welcome. It does sound like you are heading down a path that could be a possibility in your child. The symptoms you describe with the history of strep do sound like PANDAS. I think you should present it to both your ped and neurologist. Hopefully one of them will have heard of it before and listen to your case. Where do you live? Maybe there are some other docs in your area who could help who are familiar with the condition.

 

I know when I first went to our ped with this idea, I printed off the best articles saying what it was and also started a symptoms list from as early as I could remember (my girls got this young) and show any waxing and waning pattern. I was lucky that our Ped new of the condition and was willing to do a trial of antibiotics since they both had documented strep and had a recent explosive episode.

 

Hopefully your docs will be willing to run the ASO and AntiDNASE titers although these don't have to be high to be pandas (my girls have low titers with documented strep).

 

I'm sure others will have good suggestions for you.... Good luck to you!

 

Susan

[thereishope]

Welcome. Just wanted to share a similarity. My son out of no where would say "BOO! Did I scare you?". I have no idea why he did that so much. Looking back, perhaps there were times he wanted to share a different thought and just couldn't. That phrase perhaps was used as the replacement. Or he used it when he felt awkward.

 

As for the possible fight with doctors. Always try to get through to them, but ultimately, know you don't have to stay with that doctor. I had problems with my ped (the whole practice I had problems with) and with my son's neurologist.

[faith]

lovemy3kids,

hello,

the first thing I'd like to say is about the Focalin. If that is a stimulant med for ADHD/ADD, and your child has a tendency toward tics, it should not be used. If you say he's developed more tics since using it, then I would try to get him off and find another alternative. unless you feel it has helped greatly in other ways and the tics are minor, that is your call. how is he doing on that med?

 

The behaviors, tics, ocd, etc. are all a part of the syndrome, wether being driven by PANDAS or otherwise, there are alot of things going on there. I can relate to the erasing stuff, that is all ocd.

 

If you say he has a long history with strep, I don't think you need to do much convincing, just a matter of finding a pediatrician that knows about TS and PANDAS and try to get some form of treatment, with antibiotics being the first. I don't think you need to figure too much out, I would just go about treating it as such and see what happens. You should ask one of your docs (pediatrician, Infectious Disease doc, neurologist, etc.) for the ASO and Anti-Dnase titers to be done, have you had that? if there is strep in the past, he may have those titers elevated and that will at least give you a leg to stand on with one of the docs and hopefully try to treat with some antibioitics and see what happens. some of us here have kids who don't show high titers or positive strep tests, my son being one of them, so we are in a harder position to prove this is the problem. If I were you, knowing that he has a long history of strep, I wouldn't hesitate to at least start antibiotic therapy and it shouldn't be too hard to find a doctor willing to give it. Did you ever discuss this possibiity with any of his docs?

 

Where do you live? has your child been on antibiotics in the past when he had the strep? could you remember the outcome? did his behaviors seem to decline while on the abx? If I may ask, what are the other health issues you referred to? these may have contributed to the problem.

 

Faith

[Megs_Mom]

It certainly sounds like he either has PANDAS or OCD - children with problems with erasing on papers, especially if a deterioration from prior abilities have classic signs of OCD. There are many reasons that they are forced to erase and mark up papers to the point where they are no longer legible. Either way, it sounds like you are on the path to figuring it out. Aureen Wagners book about OCD is very helpful reading "What to do if your child has Obesssive Compulsive Disorder". And the website www.pandasnetwork.org is helpful reading about PANDAS. Also, you may wish to read the thread from Buster: http://www.latitudes.org/forums/index.php?showtopic=6265. Either way, there is great hope for children with OCD - with medical intervention for a child with PANDAS and ERP therapy for a child with OCD (although we found the combination of the two to work best with our child who went undiagnosed for many episodes before treatment).