Tics

[judy1270]

Hi,

I have been reading the replies and I am grateful to all of you for your concern about my grandson. I am also concerned about your children and I am praying for all of us. I would like to say to Chamar that I know you are not a Doctor but you should be, you and all the members here seem to know more about PANDAS AND SYDENHAM CHOREA. Then the Doctors that I have taken my grandson too!

But I also know that we have to put our trust in the hands of the God and pray that he guides us to the right doctor. In my case we got the run around by so, Meany doctors that I could not understand what was happening. All doors where being closed on us!

And then like a light went on I remember God will close doors,becuase you are going the wrong way.

Now I don't know if the doctor in Vegas is right about it being PANDAS. Or Dr Scott is right about it being SYDENHAM CHOREA.

My heart is saying it is CHOREA. AND all the research I have done says it is CHOREA.

The CLONIDINE that the Dr. prescribe scares me. It knocks him out at night and I mean it KNOCKS HIM OUT.

To night I am going to cut the pill in half and call the Doctor Monday and tell him that I don't like this med.

I have to go give him a bath with Epsom Salt right now.

Because he is jerking his little head so the tics are back:(

Thank you all Chemar,bmom,michele,DERESmith,calicat. if I forgot anyone I also Thank you for all your help and please keep posting.

You are in my thoughts and prayers.

[Tracey111]

Judy,

 

I just went through your original post. I noticed that he had the chicken pox booster shot around the time the tics started. My son's tics started 2 or 3 weeks after the chicken pox vaccine (at age 6).

 

I posted earlier this week about basal ganglia dysfunction.....they listed Huntington Syndrome (?) under this and I just looked up Chorea because I had never heard of it. It is a form of Huntington??? I just find it interesting that under Basal Ganglia Damage/Dysfunction they don't list vaccines, but they list drug overdose?????? These vaccines are damaging some portion of the brain....why can't they see it?

 

I think that this forum is SO imformative. We live it, so we research it and put it together. It is not text book, as every case is slightly different. It takes trial and error, so I think we are the experts here b/c they are the only ones who take the time to figure out exactly what works!

 

I wrote in several months ago about how the Dr's need to come to this site. Glad to see someone else agrees.

[Chemar]

hi Judy

 

when my son's tics and OCD suddenly manifested so severely, I didnt know about forums etc and I went thru agonizing days and nights alone and very afraid. Finding these self help support groups was more valuable to me than I can ever describe, and that's the whole reason I stay part of them...to pass forward what we received

 

re the clonidine aka catapres

it is mainly used to treat high blood pressure but also rx for tics. I have personally seen it make someone very psychotic, with out of control rages, brooding, paranoia, hyperactivity, impaired functioning etc etc. Those symptoms stopped after the med was withdrawn. I've heard from others about these side effects too. yet many doc's do seem to rx it for kids with tics. I also know that for some people it seems to be very helpful and they dont suffer any serious side effects beyond the common ones of fatigue, dry, burning mouth, dizziness, digestive changes etc. So I am sure not saying it is wrong to give it...rather just suggesting to be watchful

 

if you notice side effects that are of concern, do discuss it with the doctor immediately. Also, do NOT just stop giving it to him. It is one of the drugs that has to be withdrawn slowly, being reduced in dose gradually otherwise withdraw side effects can occur

 

I hope the Epsom bath calmed the lil guy and that he got good sleep...and you too Judy.