I have some questions

[Mommy]

I have a few questions. About 2 weeks ago my son (7yrs old) started displaying a tic that began with eye blinking then rolling his eyes extremely right. It became so bad one evening that it was continuous and he begged me to make it stop. We took him to Children's Hospital and after checking him with the CT scan we were basically sent home and told to follow up with a neurologist and family physician. So that is what we did. The physician wanted to do an EEG and then an MRI. After this was completed then we were to see the neurologist. All of this would take over a month to complete. The following weekend after our doctor visit my son started running a temp and vomitting. We had been advised that if he began vomitting or had temp we were to bring him back to the hospital. So off we went to the hosptial. This ER doctor talked to us about PANDAs and then checked him for strep. The strep test was positive and after listening to us and our need for answers this physician called the neurologist and advised we needed to be seen. So the following day we were seen by the neurologist. After checking him out she tells us she has seen this before and after talking about our history and his (he had always been what we thought was quirky and now believe to have been tics all along) she gives us the diagnosis of Tourettes and possible OCD. So now he has been put on low dose clonidine. He was also put on an antibiotic from the ER doctor. The neurologist ruled out PANDAs from the fact that he has always had a few tics that lasted about 2+ weeks and left or moved to something else.(sniffing, clearing his throat, smelling his hands, etc) While on the antibiotics the tics seemed less severe. Now after being off the antibiotics for 2 days I notice he seems hot and the tics seemed to be becoming more predominant again so I check him for fever. Sure enough low grade fever. I take him to the doctor today and he tests positive for Strep again. He has been given penicillin and was given a shot. My question is, am I doing everything I can? Do I need to have him checked for Rheumatic Fever? What is the long term effect of this? Do I demand him checked for Rheumatic Fever? He has always been a healthy child. He is an asthamatic but this is mostly seasonal as we have seen an allergist. I have spoken with the allergist about the allergy shots that have been recently started to rule them out as a cause for this and was told there is no way this could be any cause of any of these onsets. I'm not so sure and have stopped the allergy shots altogether. He was taking the allergy shots for seasonal blooms and grass and trees, etc. Not foods and yes he has been tested for food allergies as well) Any advice or anything anyone can throw at me would be appreciated. I'm so lost here and becoming increasingly worried something is being missed.

 

*note that he has developed other little tics now that are in his hands during all of this

 

Thank you!

[Chemar]

Hi

 

I would strongly suggest you also post this on our PANDAS forum

http://www.latitudes.org/forums/index.php?showforum=17

 

it sounds to me like the ER doctor at least knew about PANDAS but that the neurologist you saw was pretty clueless!! (no surprise there...very few of them seem to know much about it!)

 

just because your child had tics before does NOT mean he does not have PANDAS, *especially* as you have had recent positive strep

 

kids can have TS and develop PANDAS after strep infection, just as autistic kids can sometimes also have a PANDAS dx as can kids who have transient tic disorders, or allergic tics etc etc etc....they are not mutually exclusive

 

I really think you would benefit from the input of the PANDAS forum parents

[mkur]

PLEASE rule out PANDAS first by a PANDAS doctor. There are some PANDAS doctors that take insurance and the waiting list are not any longer than the local children's hospitals.

[Chemar]

hi mkur

 

Mommy has already posted her question to our PANDAS forum and is receiving helpful info there on how to proceed