judy1270

Thank you, I'm on the phone with his doctor they are telling me to take him to the ER. We are walking out the door/

Has you doctor said why they fall asleep........and yes now my heart is beating faster! I'm going to look up, Gullain Barr'e syndrome...thank you

Has you doctor said why they fall asleep........and yes now my heart is beating faster!

Thank you. I will read anything you have on this..

Thank you, I would like to know the doctors name......still trying to work this form..I hope, I'm doing it right.

Hello........How is everyone doing? Tired and worried for two years now! (Thats Me) Some of you have read my posts...some don't know my story and I'm so tired today. I can't go into it. It was a long night. Today, I need someone to tell me if they have had their children say anything about their legs not wanting to wake up in the morning. Corbin's is telling me his legs will not wake up in the morning. I called his doctor and all he said was keep an eye on him. Is that normal? Shouldn't he tell me to bring him in. Corbin has been seeing this doctor for two years now.( He is taking Clonidine 3 times a day ) 0.1mg 2 in the morning 1 noon and 2 at bedtime. Dr. Johnson put him on the Clonidine to control the jerking of the head and nick...He has Pandas. It came on after he went to his WELL CHECK when he turned 7 they gave him a chickenpox booster shot.......thats when the jerking started........and he jerks real bad when he gets sick.! which is all the time. Dr. Johnson is the only doctor in my area.....and he only See's him two times a year. when he comes to Flagstaff AZ. I have looked all over for a doctor in the Kingman area and can not find a doctor. I'm so sad,,,,,,,all I do is cry and can't find any help, I try to come here and put my thoughts into words and I get so upset I just stop typing and lay down. But not this time, Corbin's little leg's are not waking up in the morning he just lays there...and he tells me when my legs get up then I will....................And his doctor tells me to keep an eye on him...what is happening!

My heart goes out to you and your children, this Forum has helped me so much the people here know a lot about Pandas. I don't get to post often, but I try to read all the info on Pandas. The people here are wonderful, if they can help they will. God Bless you, Judy

Good Morning, Thank you so much for replying to my post, Corbin is taking Clonidine 1mg 4 times a day. They just upped the meds by phone 4 days ago..Corbin was taking 1 at night and now he is taking 2. It did help the jerking for a day..it came back today..my heart just broke for him..he had said " Look no Jerking" last night.. I'm calling his doctor today, right now..!

Hi Vickie, Thank you for your input! I will try the Ibruprofen I think that will help with the pain. Corbin can jerk so hard..it hurts his neck. They did up his Clonidine from 3mg to 4mg four days ago, by phone. It it slow the jerking for one day..they came back today..I'm callilng his doctor today to let him know. I just don't think it is a good idea to up meds by phone.

Yes I am So....Obsessed that is all I do, I can't think of anything else. And I cry all the time! I know, it is not good for my grandson to see me like this. I feel so helpless. We all just what to help our kids get better, people that are not around our kids alot don't seem to understand what we are talking about. I know my grandson can be almost ok for a day and then..he just starts jerking out of his skin. And then I start going over the whole day trying to remember what he ate or did. Yes I'm Obessed.

Sam, Thank you for this phone number I'm going to get on the phone right now! Corbins doctors don't seem to know anything about PANDAS, I know they are trying but they just don't have the info to help Corbin. Thank you...I'm still trying, To get use to useing this Forum I don't know if I'm useing it right when I reply.

Thank you so much for this list, I am crying right now..just reading the replys..I can't tell you how much all of you have helped..

The same thing is going on here, I just got off the phone with a doctor in Phoenix. He said he did not believe in PANDAS..he is so closed minded about this. I no!! they don't have a clue what is going on with our kids, there are so many kids that have some kind of movement disorder. I am fed up! I what answers.........Why are there so many kids sick with this.

I know how you feel! They look at you like you have lost your mind.