Hello, it has been over a year since last post

[Williams Dad]

Where in OH are you? We are in North Canton OH. I know of Dr. Nevada Reed at Kids Link in Akron who is great for PANDAS but does not take insurance. Contact me if you have any questions because we have seen alot of Dr's. for PANDAS. http://www.kidslinkohio.com/family/index.shtml

 

Hi, Just wanted to let you know that we did experience a very similar episode with one of our twin boys 5 1/2. (his brother also has PANDAS and had very different symptoms). We were in a mall and my son turned into a completly different person. I was so frightened that I called a psycologist friend of mine to ask if a 5 year old could have a sudden psychotic break. My son also was pulling at his eyes. He said it felt like there was something in his eyes like an eyelash. We had already been dealing with his brother's symptoms starting two weeks before that and had already seen every kind of specialist we could think of. When we finally came to understand that they both had PANDAS, our fist line of defense was Augmentin. Both boys were much improved within 24 hours. (their ASO was only slightly elevated and their titers were normal, we never had any sign of a strep infection or any illness prior to symptoms)

 

That was almost 9 months ago. Both boys doing much much better. They are on continuous antibiotics and we did do IVIG 3 months ago. We initially got help from Dr. K in Chicago thru the phone. He never saw the boys but was a great help to us.

 

My heart hurts for you. I know how scarey this all is. Just know there is hope, you just have to find the thing that will work for your son.

 

Warmest wishes,

Kari

 

We are near Bowling Green Ohio. We have seen a neurologist in the past for his tics. He did every test to get him nervous or frustrated. Didn't work. I appreciated the info and I might have to get in contact with you. We are all going to the Dr. today to get on some antibiotics. Even if they say we don't need them.

 

I will keep you all posted you all have been great.

 

Thanks Greg

[michele]

Goodluck today. Most neurologists we have seen in OH won't treat PANDAS. I know of an immunologist in Toledo/Bowling Green that has treated PANDAS and worked with a neurologist from Toledo Dr. Nelson and Dr. Cameron. I was able to get our ped to write the prescription for the antibiotics longterm when I couldn't find any local Dr's to treat him. How old is your son? My son goes through these periods of waxing symptoms where his personality changes drastically and he acts crazy. Usually upping the antibiotics for a few weeks seem to calm the exacerbation down. We also see a psychiatrist that gives meds for the symptoms that don't go away inbetween epsiodes like the attention and hyperactivity and anxiety which is a huge factor and causes meltdowns for him. Her name is Dr. Rocker. She is in Akron though.

Where in OH are you? We are in North Canton OH. I know of Dr. Nevada Reed at Kids Link in Akron who is great for PANDAS but does not take insurance. Contact me if you have any questions because we have seen alot of Dr's. for PANDAS. http://www.kidslinkohio.com/family/index.shtml

 

Hi, Just wanted to let you know that we did experience a very similar episode with one of our twin boys 5 1/2. (his brother also has PANDAS and had very different symptoms). We were in a mall and my son turned into a completly different person. I was so frightened that I called a psycologist friend of mine to ask if a 5 year old could have a sudden psychotic break. My son also was pulling at his eyes. He said it felt like there was something in his eyes like an eyelash. We had already been dealing with his brother's symptoms starting two weeks before that and had already seen every kind of specialist we could think of. When we finally came to understand that they both had PANDAS, our fist line of defense was Augmentin. Both boys were much improved within 24 hours. (their ASO was only slightly elevated and their titers were normal, we never had any sign of a strep infection or any illness prior to symptoms)

 

That was almost 9 months ago. Both boys doing much much better. They are on continuous antibiotics and we did do IVIG 3 months ago. We initially got help from Dr. K in Chicago thru the phone. He never saw the boys but was a great help to us.

 

My heart hurts for you. I know how scarey this all is. Just know there is hope, you just have to find the thing that will work for your son.

 

Warmest wishes,

Kari

 

We are near Bowling Green Ohio. We have seen a neurologist in the past for his tics. He did every test to get him nervous or frustrated. Didn't work. I appreciated the info and I might have to get in contact with you. We are all going to the Dr. today to get on some antibiotics. Even if they say we don't need them.

 

I will keep you all posted you all have been great.

 

Thanks Greg