PANDAS suspected, but it's only been a month

[BikeWP]

Quick update: We saw about a 90% improvement after the very first dose of amox yesterday. She was happy when I picked her up at school and didn't mention her fears one single time all evening. It was so fast, I almost thought it couldn't be the amox because I didn't think abx worked that fast. This morning she has talked a few times about feeling scared, but is still so much better than before starting the amox.

 

I know it can't really be this easy, but this is a pretty strong indicator that we're on the right track, yes?

 

Does therapy really not help at all? I realize it won't cure the problem, but our thought was that if she could learn some coping skills for when she does have a flare-up, that in itself would be useful.

 

I live in Boulder, CO. I found a list of PANDAS-friendly doctors on savingsammy.com, and there is one at Children's in Denver, but when I looked him up, he actually specializes in childhood stroke...? There is also one listed in Boulder who seems to work mostly with kids with learning disabilities (which my DD doesn't have). Is it still best to start by giving one of them a call, or is there another way to find a doc who actually specializes in PANDAS?

 

Thanks for the advice!

Hi

I don't know if this post is a little too late but we live in Colorado, also. I found a fantastic PANDA doctor in Ft. Collins. His specialty IS PANDAS. His practice is called Wholeness Center and his name is Dr. Rondeau. 970-221-1106. I hope this helps!

[coloradomom]

This is my first post...I live in Colorado, too, and really think my 7 year old may have PANDAS. He had strep in November, and the first day after he finished his antibiotics he developed a headache. I took him back in a couple of days later for another throat culture, but it did not show strep. Fast forward to now and he still has a daily headache, which by the way does not respond to advil or tylenol. His behavior has changed in that he is more moody and irritable than normal. He has now been to an eye doctor and had an MRI. Everything checked out okay.

 

I have been researching headaches following strep. It is during these searches I learned about PANDAS, although I never did see any connection to the headache symptom. But, having heard of PANDAS now, what started a few days ago really scared me: he started blinking rapidly and frequently. I took him to a different pediatrician today and after explaining the ongoing mystery headache which began immediately following strep coupled now with his blinking, the doc actually (to my surprise) mentioned PANDAS. But, he researched it for just a few minutes and came to the conclusion there is no link between headaches and PANDAS, therefore the blinking must be an unrelated tic..

 

So now my son has been diagnosed with a tic...just a tic, supposedly unrelated to the mystery headache that began immediately after strep (now almost 3 months ago).

 

We have an upcoming appt with a neurologist, but I would so greatly appreciate a referral to a Colorado doc (we live in Denver) who is "PANDAS friendly".

 

Thank you!!!

[BikeWP]

Quick update: We saw about a 90% improvement after the very first dose of amox yesterday. She was happy when I picked her up at school and didn't mention her fears one single time all evening. It was so fast, I almost thought it couldn't be the amox because I didn't think abx worked that fast. This morning she has talked a few times about feeling scared, but is still so much better than before starting the amox.

 

I know it can't really be this easy, but this is a pretty strong indicator that we're on the right track, yes?

 

Does therapy really not help at all? I realize it won't cure the problem, but our thought was that if she could learn some coping skills for when she does have a flare-up, that in itself would be useful.

 

I live in Boulder, CO. I found a list of PANDAS-friendly doctors on savingsammy.com, and there is one at Children's in Denver, but when I looked him up, he actually specializes in childhood stroke...? There is also one listed in Boulder who seems to work mostly with kids with learning disabilities (which my DD doesn't have). Is it still best to start by giving one of them a call, or is there another way to find a doc who actually specializes in PANDAS?

 

Thanks for the advice!

I can't remember if I posted to you already but thought I'd shoot out a quick one just incase...

We live in Niwot and found a PANDAS doc in Fort Collins. He is wonderful and knows his PANDAS!! His name is Dr. Steve Rondeau. The Wholeness Center.

My ds was diagnosed with PANDAS in Nov and also has Celiac.

Do you know of a support group in Colorado? Would love to get one together!!

Take care.

[Missmom]

This is my first post...I live in Colorado, too, and really think my 7 year old may have PANDAS. He had strep in November, and the first day after he finished his antibiotics he developed a headache. I took him back in a couple of days later for another throat culture, but it did not show strep. Fast forward to now and he still has a daily headache, which by the way does not respond to advil or tylenol. His behavior has changed in that he is more moody and irritable than normal. He has now been to an eye doctor and had an MRI. Everything checked out okay.

 

I have been researching headaches following strep. It is during these searches I learned about PANDAS, although I never did see any connection to the headache symptom. But, having heard of PANDAS now, what started a few days ago really scared me: he started blinking rapidly and frequently. I took him to a different pediatrician today and after explaining the ongoing mystery headache which began immediately following strep coupled now with his blinking, the doc actually (to my surprise) mentioned PANDAS. But, he researched it for just a few minutes and came to the conclusion there is no link between headaches and PANDAS, therefore the blinking must be an unrelated tic..

 

So now my son has been diagnosed with a tic...just a tic, supposedly unrelated to the mystery headache that began immediately after strep (now almost 3 months ago).

 

We have an upcoming appt with a neurologist, but I would so greatly appreciate a referral to a Colorado doc (we live in Denver) who is "PANDAS friendly".

 

Thank you!!!

Since you are new here you should probably start a new thread with any additional relevant information. You will find lots of support and advice on this board. My son has had the blinking tic in the past and it is so frusterating for him because it actually begins to hurt after a while from all the blinking. He also gets headaches sometimes but not daily. You should a full round of bloodwork. There is a lot of info on this board pertaining to which labs need to be done.