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Everything posted by judy1270

  1. 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/
  2. 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
  3. Has you doctor said why they fall asleep........and yes now my heart is beating faster!
  4. Thank you. I will read anything you have on this..
  5. Thank you, I would like to know the doctors name......still trying to work this form..I hope, I'm doing it right.
  6. 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!
  7. 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
  8. 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..!
  9. 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.
  10. 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.
  11. 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.
  12. 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..
  13. 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.
  14. I know how you feel! They look at you like you have lost your mind.
  15. I need help!!! I just don't get how doctors can be so clueless on how to treat Pandas. I live in a small town and the doctor that my grandson sees is two hours from me, and this doctor only sees my grandson every 6 months. He saw him July 9 of this year, Corbin was doing OK that day. Two days later he was jerking so bad he could not hold his spoon. I called the doctors office to tell him what was going on. They told me the doctor was on vacation and just go on and up his meds. This has been going on for two years now. I just got off the phone with a doctor from CRS. She said if my grandson gets strep this year, and starts jerking out of his skin. That no medication will stop him from jerking. "WHAT" I hung up on her.........She has to be wrong about this........Please someone help me out on this one.
  16. Very interesting. How did they find it there and did she have any symptoms other than a tummy ache--such as constipation?? Can the blood test on ASO level show strep in the gut?
  17. Hi, A year ago I would have said give your children there vaccines but, Not now! My Grandson was just fine before he had his booster shot for, Chickenpox. Now he jerk all the time! You can read my post on this. They still can not tell me what happen, they say he has PANDAS or, he has Tourettes they don't know!!!!!!!!! He has been in and out of the hospital for, a year now. Before that BOOSTER SHOT HE WAS JUST FINE!!!!!
  18. Hi, Kim Thank you for the links and, I will look them up and read more about Potassium. The doctors did not tell us way they where giving the potassium to him. I did call his Neurologist but, he has not called back. But, as of today My little grandson is jerking like a fish out of water. Kim: Thank you for the info on the levels of potassium I'm picking up his records from the hospital on Monday so, I will take a look at the level of potassium.
  19. Hello, It has been some time since I have posted here but, I have been busy with My Grandson. He was diagnosed with PANDAS all most a year a go. He has been taking "CLONIDINE" 0.1MG 3 times a day and, he still jerks his head and his hands. The Clonidine helps him if he was not taking the med's he would be jerking like a fish out of water. Some thing interesting happen this week he became sick he was running a fever of 100.8 and he was throwing up and, his tummy was hurting him. We took him to the ER they stared a drip of "Potassium Chloride" with in a 1/2 hour his jerking stopped. They told us he had," Mesenteric Adenitis". For two hole days he did not jerk. He is home now and he is jerking could it be he needs Potassium? He sees his Doctor on Monday I am going to ask for tests. Douse any one here know anything about Potassium Chloride?
  20. Thank you, I thought I had found something of a miracle cure. I know so little about TOURETTES.. Is there any medication that dose help with the jerking,my Grandson tells me his neck hurts all the time. He dose have an appointment today with his new ped Doctor. I feel so helpless.
  21. As some of you know I have a Grandson that had seizure in January and from that time he has been seen by a few Doctors. We still do not know why he had a seizure or why he is still jerking his little head to the right. One Doctor put him on Clonidine and one Doctor put him Topamax. I told both Doctors that I did not what him on these drugs, and my Grandson did not take the drugs. These Doctors did not do an EEG on my Grandson so I did not trust them. These where different Doctors and different times we where not seeing two different Doctors at the same time. I finally had an EEG done! and this will surprise you it was done at the rquist of my Grandsons Rheumatologist Thank God the EEG was normal. ALL THAT ASIDE. My Grandson asked for a piece of GUM TODAY he has never had a piece of GUM I know that sounds strange but it is TRUE. YOU WILL NOT BELEIVE THIS IT STOPPED THE TICS I HAVE WATCHED HIM ALL DAY, TIC FREE ALL DAY. GUM!!! CAN THIS HAPPEN WITH GUM?? I have been holding by breath all day.
  22. He is still jerking his head to the right. Sometimes all day Sometimes just a few times a day. It is driving me nuts. The doctors have no clue what has caused this to happen. Thank you for asking Kim. Kim Thank You for the Web-site. That is what they are checking for Lupus of Infection! Thank you Thank You This Site is the Best Place to find Information for our kids
  23. He is still jerking his head to the right. Sometimes all day Sometimes just a few times a day. It is driving me nuts. The doctors have no clue what has caused this to happen. Thank you for asking Kim.
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