in uk son 13 severe pandas, seeking treatment

[spongeblob]

Hi,

My son had a strep infection sept 2006. He woke up a changed boy. He was jumping around like a 2 yr old, severly regressed, high anxiety, paranoia, aggression, strange walk, emotional ups and downs, piano playing hands,loss of maths skills and cognitive functioning. In the 16 months of pandas, he has never returned to being our son we knew. He has periods of normality, periods where he comes back to haunt us.The rest of the time he is a different child. He has dips and waves, he gets more stable, then something happens again and he ends up like he is today. he had some type of vacant seizure last week, which has left him with left sided weakness and a tremor. Now this could be due to his medication risperidone, to calm him down. But he is having extensive tests done to rule out any other condition.

He has been out of school for over a year, seperation anxiety and concentration problems stop him from learning in a conventional way.

Is there anyone that you can recommend that may be able to help him. I have tried emailed dr swedo but no reply. I have emailed her again over the weekend, and some of her associates in the hope I may be able to get some help.

It is very difficult in the uk as hardly anyone knows what pandas is.

Hope someone may be able to help!

look forward to hearing from you.

[michele]

Welcome. Youv'e found the right place. Dr. Tanya Murphy is one of the experts on PANDAS in the states. She has worked closely with Sweedo doing research. We went to visit her this fall. Basically she gave us alot of good suggestions of how to treat and what to expect. The only thing she did not do was write prescriptions. However she will communicate via email. http://mdc.mbi.ufl.edu/murphy.htm

Please write in and let us know what she suggests. I do know she wanted my son on Coromega daily. Also she recommended lots of throat swabs when symptoms worsen for everyone in the family. Also a stronger dose of antibiotics like Augmentin or omnisef during flare up times. She also wanted him to get OT therapy/evaluation for motor delays and a speech evaluation. We are currently getting weekly OT for the handwriting core muscle delays. I know what you mean about a changed personality. My sons symptoms never completely go away. They worsen during exposures to strep but he has emotional liability and short attention everyday now. However during flare ups he has to go potty over and over and becomes obsessed with cerain ideas. I can't figure why he can sit so well for the computer or movies buth has little focus for school work. We have had the piano finger movements too. My son also becomes aggressive and has a short fuse. We have had the strange walks along with knee bends and touching the ground and cracking fingers and toes. He gets paranoid that others are doing things to him. Please keep in touch. We have to stick together because the medical community is not knowledgeable on this so we have to become the experts. All the best.

 

Michele

 

Hi,

My son had a strep infection sept 2006. He woke up a changed boy. He was jumping around like a 2 yr old, severly regressed, high anxiety, paranoia, aggression, strange walk, emotional ups and downs, piano playing hands,loss of maths skills and cognitive functioning. In the 16 months of pandas, he has never returned to being our son we knew. He has periods of normality, periods where he comes back to haunt us.The rest of the time he is a different child. He has dips and waves, he gets more stable, then something happens again and he ends up like he is today. he had some type of vacant seizure last week, which has left him with left sided weakness and a tremor. Now this could be due to his medication risperidone, to calm him down. But he is having extensive tests done to rule out any other condition.

He has been out of school for over a year, seperation anxiety and concentration problems stop him from learning in a conventional way.

Is there anyone that you can recommend that may be able to help him. I have tried emailed dr swedo but no reply. I have emailed her again over the weekend, and some of her associates in the hope I may be able to get some help.

It is very difficult in the uk as hardly anyone knows what pandas is.

Hope someone may be able to help!

look forward to hearing from you.

[spongeblob]

Thankyou so much for your reply. My son is now 13 yrs old, 16 months of trying to find someone that can help him. Many thanks for the link I will email her asap and let you know the outcome.

Thankyou!

sarina

[CSP]

Welcome spongeb,

 

I'm so sorry for how this has changed your son. Is the seizure one of the side effects to the risperdone? I just wanted to ask if lyme was going to be one of the tests? Lyme can cause a sudden paralysis on one side of the face. (Bell's Palsy).

 

Please do keep us posted, and I pray you fine answers soon.

 

C.P.

[spongeblob]

hi,

We arent sure whether it is his medication that caused the seizure or not, he had a tic in his left shoulder at the same time it happened. His mouth drooped down to one side after and left him with slurred speech. I havent a clue what they are testing him for, he has had an heart echo, chest xray, eeg, ecg, emg, ssep, bloods, 24 hour urine, and now awaiting a lumbar puncture.

Im sure that it is still just pandas, we have stopped giving him the risperidone to see if if the additional symptoms are side effects. Usually manage 3 days without and then he starts to get agitated and tearful.

Thankyou for all your replies. Don't stop, im sure there is someone that has found something that has worked!

sarina

[CSP]

spongeb,

 

I couldn't tell by your first post if last week was his first seizure or was that another one? And what year was the tick found? Did you ever tell the Dr. you found a tick on him?

 

C.P.

[faith]

Spongebob,

Was your child treated with antibiotics for the first strep that you mention? Has he ever been on any antibiotics since that time? Since you say he is 13, has he ever had any of those issues before that time or any tics as a youngster?

 

C.P., I think he meant a tic involving the shoulder, not a tick like the bug? (sorry, if I'm wrong, but "hi" anyway

 

 

 

faith

[spongeblob]

hi,

sorry yes i did mean a tic movement, sorry all my posts are always typed in a hurry with a 2 yr old distracting me!!!!

He had a course of antibiotics when he first had a sore throat, after 2 weeks his bahaviour and personality changed, we took him to the hospital where they did blood and then sent us on our way, josh regressed further, had temporary vision loss, we rushed him back to the hospital, this was 4 weeks after the initial hospital visit. it was only then that they told us he blood tests showed high level strep infection it was over 5000 in is blood! They hadnt bothered to call us and tell us to start more antibiotics. They gave him another course, and sent us on our way again.

Josh has never had tics before his illness, and too be honest hasnt had much after, just this episode 3 weeks ago. He had a little in his head when he was first diagnosed in oct 2006.

After a year of keeping on for long term antibiotics and being refused, we have now been told by 3 neurologists that it would be a good idea!!!

He started a 10day course last thursday 250mg 4 times a day then will reduce back to twice a day long term.

Hope this helps

sarina

[CSP]

OOPS,

 

OK Major power outage here last night I did not get much sleep, and froze my ###. I guess a few brain cells died too.

Confusing tic for tick, and calling kallik, Lenny.

 

Bed can't get here soon enough.

C.P.

[kkver]

spongeb

 

Sorry to hear about your son . It gets tough at times. Regarding PANDAS you can try certain things to test

1) Do the throat culture for strep infection.

2) Do the blood test for O ASO and Anti Dnase titer counts. If these are high means the body is fighting a strep infection.

3) If any of above conditions there try to use antibiotics ( amox ,penn,zithromax ) and see if there are changes . Lot of people on this forum have kids who are on weakly antibiotic dosage.

4) If those titer count are high and not coming down then can look for plasma replacement which is not done by every one treatment but had helped lot of kids.

 

If PANDAS is not there then you should look to find why is it happening, is cause of TS or come other things.