Tourette Syndrome

[judy1270]

I have had 4 weeks of racking my brain going over every little detail of the onset of this tic the doctors say my grandson has.

I am going to start at the beginning.

This all started with a well check on the 21 of January,we go to his doctors office,he is laughing having a good time. His doctors says he needs a booster shot for chickenpox, I didn't

pay much attention to that comment I left the room, I don't like shots.

He was fine, after the shot we went to Penney's and got him a new pair of shoes and then he said he did not feel good he wanted to go home. So we came home he was in his room I went to check on him,he was hot to the touch and really sleepy. I no that any vaccination can cause a fever and make you sleepy. So I did not worry to much the fever was 99.9 so I gave him Motrin and he laid back down. That was at 4:30 I checked on him around 5:40 dinner was ready. He was burning up his fever had jumped to 105.8 I pulled him out of bed and put him in a temp bath to cool him down, called the ER they told me to give him Motrin and Tylenol and that should bring his fever down. I was up with him all night with a cool pack on his forehead.

By 9:30 he was jerking and holding his head to the right side, we ran him to the ER and told them what had happen.

They said it had nothing to do with the chickenpox shot!

We were there for 6 hours while they did a x-ray of his head and took blood. His blood work showed his ANA test came up pos. Underline Lups.

 

The hole time is uncontrollable jerky his hole body, they took a video of him because they could not figure out what was going on with this little guy.

Finley doctor said he was going to send him to Phoenix to see a neurologist for an EEG and more test, he said he thought it was Sydenham Chorea. Dr. gave him a dose of penicillin before they took him to Phoenix.

I drove down and it took me 3 1/2 hr. to get there. By the time I got there the convulsions had stop and he was just jerking his little head and the right arm. So the penicillin had worked.

But Dr did not see he till 8am he came into the room he looked at him and said he has a tic. I will put him on topamax, and for us not to worry that tics are genetic and he could till his kids all about them when they get there tics. (I KID YOU NOT THAT IS WHAT HE SAID)

I took him back to Phoenix on the 14 February to get an EEG, no luck the Dr said he had talked to both doctors from the ER, and they thought it was only a tic and we were overreacting. And he told me that he did not need an EEG.

I left there so mad that I could not talk, I took him back to his pediatric Dr, on the 19 and asked him to put him on penicillin just to try it see if it works. And his pediatric Dr did put him on penicillin for two week's and it did stop the tic's! But Dr, Jon, Schwartz told Dr, Davison my grandson doctor, to take him off the penicillin. I could not understand why this doctor would take him off the mediation. The penicllin did stop the tic's. This doctor should not be a doctor!

The bottom line is there is more going on with my grandson then a tic.

I have found a neurologist for him and he is not in phoenix and he said he will do an EEG on

I will get to the bottom of this some how some way.

I believe that to Meany doctors see our kids and say they are ADD and they have a tic.

In our case this is what they have done.

There is a good web-site called WEMOVE, I have found a lot of good info there too.

This site has help me so much it open my eyes to a lot of things that I would not have looked for.

God Bless our Kids.

[michele]

Judy,

My sons tics came on initially after a group of shots at his twelve months visit. He also had a super high fever 105 degrees. I also took him to the ER because his body was jumping and his fingers were moving like he was playing a piano. His eyes were blinking rapidly too. They did a CAT scan there and also ordered an EEG which we did the next week. The neurologist spoke to us after the EEG was normal and told us he thought he had syndomes chorea or PANDAS. My son had strep throat at the ped office that week. Initially they told me a baby can't get strep but my daughter also had it. Needless to say it was at thirteen months that this began for us. Everytime he was exposed to strep from then on he got these episodes where he was emotional, moody, hyper, had to urinate constantly, became obsessive, and started the tics again. It usually lasted for about eight to ten weeks after each exposure. He didn't always get the strep just the behaviors associated with PANDAS. Now that he is on long term Omnisef I notice if he gets the symptoms they are much less and the tics have gone away for the past two months. For a couple weks he blinked a bit more then usual in Jan. but it was not as bad an episode as before. If I up his antibiotic for a few days he seems to improve. I pray you can get a prescription for antibiotic long term therapy. We left his PANDAS go on too long before I realized the damage it was doing. The more episodes they have the worse the episodes become. It never completely goes away but is better between episodes. I pray you get some answers. This is a very saw toothed disorder and comes and goes. At times it is very bad and other times it seems to go away. For us right now the ADD is the worse part.

 

Michele

 

 

I have had 4 weeks of racking my brain going over every little detail of the onset of this tic the doctors say my grandson has.

I am going to start at the beginning.

This all started with a well check on the 4th of February,we go to his doctors office, Corbin is laughing having a good time. His doctors says he needs a booster shot for chickenpox, I didnt

pay much attention to that comment I left the room, I don't like shots.

He was fine, after the shot we went to penneys and got him a new pare of shoes and then he said he did not feel good he wanted to go home. So we came home he was in his room I went to check on him,he was hot to the touch and really sleepy. I no that any vaccination can cause a fever and make you sleepy. So I did not worry to much the fever was 99.9 so I gave him Motrin and he laid back down. That was at 4:30 I checked on him around 5:40 dinner was ready. He was burning up his fever had jumped to 105.8 I pulled him out of bed and put him in a temp bath to cool him down, called the ER they told me to give him Motrin and Tylenol and that should bring his fever down. I was up with him all night with a cool pack on his forehead.

By 9:30 he was jerking and holding his head to the right side, we ran him to the ER and told them what had happen.

They said it had nothing to do with the chickenpox shot!

We were there for 6 hours while they did a x-ray of his head and took blood. His blood work showed his ANA test came up pos. Underline Lups.

 

The hole time Corbin is uncontrollable jerky his hole body, they took a video of him because they could not figure out what was going on with this little guy.

Finley doctor Scot said he was going to send him to Phoenix to see a neurologist for an EEG and more test, he said he thought it was Sydenham Chorea. Dr. Scot gave him a dose of penicillin before they took him to Phoenix.

I drove down and it took me 3 1/2 hr. to get there. By the time I got there the convulsions had stop and he was just jerking his little head and the right arm. So the penicillin had worked.

But Dr Deering did not see Corbin till 8am he came into the room he looked at him and said he has a tic. I will put him on topamax, and for us not to worry that tics are genetic and he could till his kids all about them when they get there tics. (I KID YOU NOT THAT IS WHAT HE SAID)

I took him back to Phoenix on the 14 to see Dr Barnes and to get an EEG, no luck the Dr said he had talked to Dr Deering and they both thought it was only a tic and we were overreacting. And he told me that Corbin did not need an EEG.

I left there so mad that I could not talk, I took him back to his ped dr on the 19 and asked him to put Corbin on penicillin just to try it see if it works. And it had helped a lot.

The bottom line is there is more going on with my grandson then a tic.

I have found a neurologist for him and he is not in phoenix and he said he will do an EEG on Corbin.

I will get to the bottom of this some how some way.

I believe that to Meany doctors see our kids and say they are ADD and they have a tic.

In our case this is what they have done.

There is a good web-site called WEMOVE, I have found a lot of good info there too.

This site has help me so much it open my eyes to a lot of things that I would not have looked for.

Thank God Bless our Kids