PANDAS

[judy1270]

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!

[peglem]

Not exactly Kingman, but I know of a very good pediatrician in West Phoenix. Tried to PM you, but it said your PM was disabled.

[judy1270]

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

[trggirl]

I'm not even sure I want to post this but I think information is good so I will just tell you our experience. After some vaccines last year my daughter was complaining about her legs. The complaints ranged from hurting to not feeling her legs. I especially remember her wobbling on them and telling me they felt wobbly. I called my doc and he told me to rush to the ER and have them check her for Guillain-Barré Syndrome. If you look it up, it's scary. And please understand, this may not be what your doctor is thinking at all. I think I would call him and ask for more details if it was me. Again, I am so sorry to post something so scary and I hope I am doing the right thing. On a good note, they evaluated my daughter in the ER and did not think she had the syndrome. The leg issue passed within a couple of days.

[trggirl]

Ok, I just went back to read about Guillain-Barré Syndrome and it talks more about rubbery legs as opposed to legs that are asleep. Just wanted to mention that now that I have probably scared you to death. And I will say that my daughter complains often about her legs falling asleep. I even mentioned that to her doctor.

[judy1270]

I'm not even sure I want to post this but I think information is good so I will just tell you our experience. After some vaccines last year my daughter was complaining about her legs. The complaints ranged from hurting to not feeling her legs. I especially remember her wobbling on them and telling me they felt wobbly. I called my doc and he told me to rush to the ER and have them check her for Guillain-Barré Syndrome. If you look it up, it's scary. And please understand, this may not be what your doctor is thinking at all. I think I would call him and ask for more details if it was me. Again, I am so sorry to post something so scary and I hope I am doing the right thing. On a good note, they evaluated my daughter in the ER and did not think she had the syndrome. The leg issue passed within a couple of days.

[judy1270]

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

[judy1270]

Ok, I just went back to read about Guillain-Barré Syndrome and it talks more about rubbery legs as opposed to legs that are asleep. Just wanted to mention that now that I have probably scared you to death. And I will say that my daughter complains often about her legs falling asleep. I even mentioned that to her doctor.

 

 

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

[judy1270]

Ok, I just went back to read about Guillain-Barré Syndrome and it talks more about rubbery legs as opposed to legs that are asleep. Just wanted to mention that now that I have probably scared you to death. And I will say that my daughter complains often about her legs falling asleep. I even mentioned that to her doctor.

 

 

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

[peglem]

Judy, I was able to email you w/ the docs info.

[judy1270]

Judy, I was able to email you w/ the docs info.

 

 

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/

[P_Mom]

Judy...if I recall correctly, Corbin had this vaccination years ago....I don't think GB syndrome is a concern this far past the vaccination.

[peglem]

Judy, I was able to email you w/ the docs info.

 

 

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/

Well, I sure hope they are able to give you some answers, and then I hope they have a solution too!

[tapiash]

Not exactly Kingman, but I know of a very good pediatrician in West Phoenix. Tried to PM you, but it said your PM was disabled.

 

I am looking for a pediotrician doctor close to NM. I talked to one in Colorado but he has been no help.

[memom]

Judy,

 

I know you are on your way to the ER. What I really want you to know is that though I have no answers, my thoughts are with you. I can hear your defeat and exaustion. You are still in the thick of worry. Please keep us updated.

 

Ellie