Just starting the PANDAS path

[Seansmom]

Hi all,

 

The first time I heard the term PANDAS was one week ago.

 

My son Sean is 5. Last year he had chronic strep from October to February. Mono was confirmed in January, and I saw scarlet fever rash at least once too. He had a tonsillectomy in February. Two days after the tonsillectomy he blew an artery in the nose. I've been through some scary stuff with him, but that really took the cake.

 

Just prior to the tonsillectomy, I expressed concern about his behavior to his preschool teacher - hyperactive and always touching everything! My son was in a special needs classroom as a typical peer. You would think they would have noticed the behavior changes but they didn't until I pointed them out. His pediatrician and ENT both referred to sudies that have shown that some kids get ADD/ADHD with strep but the behaviors resolve once the strep is resolved. But noone made any references to PANDAS.

 

Sean's behavior issues didn't resolve. It has only gotten worse. And after reading about PANDAS I realized that there were even more behaviors that we were overlooking that are either tic or OCD manifestations. We met with a psychologist yesterday who has dealt with other PANDAS cases and she has referred us to a local pediatrician who has dealt with other PANDAS cases. I'm thinking he may have ties to Dr. Murphy since he did at least part of his education at UF.

 

I'm not surprised at the PANDAS diagnosis though. It's not the first time I've dealt with unusual medical conditions. We're temporarily living in Florida (not close enough to Gainesville where Dr. Murphy is). I actually told our new doctors that they should be paying us because we specialize in the rare and unusual and they might have a chance at making medical history with us or at least getting published. LOL!!! Boy, wouldn't that be a wonderful solution to the rising cost of healthcare - have the patients charge the doctors!!!

 

I believe Sean was predisposed to PANDAS. My entire family has asthma and allegies and just lately immune issues, and my husband's family has had neurological disorders associated with medical ailments. What a combo! My childhood asthma doctor was one of the key doctors at University of Michigan's Mott's Children's Hospital Department of Allergy and Immunology. I may contact him for an opinion at some point too.

 

Sean's OCD manifestations center around Ben 10 (a child superhero), insisting on buying him toys, and death. We've had some deaths in the family and his grandfather is in end stage Alzheimer's which only exacerbates it. Yesterday he actually told the psychologist that he thought she was going to die.

 

The tantruming and defiance at school is so bad that they referred us for psychiatric services. I requested psychological testing through the school, but they are insistent that they must go through this 8-week observation and intervention program first. I'm hoping that now that we have had private testing done and a recommendation for placement in a special needs classroom that they will be able to act on it.

 

On difficult days, Sean manages to exhaust both my husband and me. But despite his awful behavior I always try to find some element of amusement or content because it makes us all feel better. It might be a quiet moment after a tantrum, or some odd joke that doesn't seem that funny to me but it makes him laugh to his heart's content. It might be him saying "This was the best day of my life!" when I thought the day was actually kind of difficult. I think it's easier to look for these things because last year he was in a bicycle accident that almost killed him. We were in Hershey, Pennsylvania, and their children's hospital has a nationally recognized trauma unit. I actually commented on this as we drove by it the first day. I didn't know we would get a VIP tour! Sean rode his bike 100 yards down a steep hill and fell off onto a stump. You could clearly see the outline of the stump on his back. He broke two ribs and punctured and collapsed his lung. The surgeon said he had to have hit with the force of an auto accident and that she had never seen a child his age with those injuries where the spleen didn't rupture. And if he hadn't been wearing his helmet it would have been a different story too. The hospital team was great, and incredibly Sean was out in two days.

 

I appreciate all the factual information that has been incorporated into these forums. It really helped me sort out the interpretations of the various studies on treatments and their relative effectiveness. It also gave me a lot of insight into the symptoms of PANDAS. I think we will be able to work with our doctors much more effectively because of it and hopefully keep trial and error tactics to a minimum.

 

As a last thought, does anyone know if there are any national organizations related to PANDAS, i.e. support groups, associations. (It seems like there is for everything else!) I couldn't even find a web site with comprehensive centralized information. I had to get really creative with my web searches. I kept stumbling across Panda BEAR immune disorders!!!! I also sense that finding doctors that are experienced with PANDAS is an issue, too.

 

I'll keep you all up to date and of course add anything new that I think might be helpful to the forum.

 

Sean's Mom

[michele]

I wanted to say to you that you are one of the lucky ones. If you have contact with a Dr. who knows about PANDAS and is in contact with the experts( DR. Murphy being one of the leading researchers) you are in a much better place then many of us who have had to hop Dr. to Dr. and get no where but blank stares and no help! Please post your results here after you speak to the Dr. We have had to piece together Dr.'s because one helps with the tics, one with the immune, one with the allergies. It has been a long difficult road.

 

I did get to see Dr. Murphy with my son last year. She is awesome and helped alot but is too far from Ohio to see as a primary physician. It was great to just hear her confirm our PANDAS beliefs.

 

My son is six and is very stuck on themes and Ben 10 is one of them. He gets so much excitement out of his interests but they are very narrow and obsessive. You are right these are fun kids because they are creative and passionate about what they love. However the tantrums and behaviors can be embarrasing and exhausting to deal with everyday. We have had to go on some meds recently for the anxiety and ADHD. It does really help getting through the day but I know it is not a fix to the real issue PANDAS that is going on. So if you come up with a treatment plan to "cure" PANDAS please let me know. I know there are alot of sites out there on PANDAS but Tourettes Plus has good info and TSA and NIMH. As an organization I have been going through the mental health NAMI for info right now. There are alot of support groups. http://www.tsa-usa.org/

http://www.tourettesyndrome.net/ http://intramural.nimh.nih.gov/pdn/web.htm http://intramural.nimh.nih.gov/pdn/recent_publications.htm

 

Good luck with everything and stay in touch.

Michele

 

Hi all,

 

The first time I heard the term PANDAS was one week ago.

 

My son Sean is 5. Last year he had chronic strep from October to February. Mono was confirmed in January, and I saw scarlet fever rash at least once too. He had a tonsillectomy in February. Two days after the tonsillectomy he blew an artery in the nose. I've been through some scary stuff with him, but that really took the cake.

 

Just prior to the tonsillectomy, I expressed concern about his behavior to his preschool teacher - hyperactive and always touching everything! My son was in a special needs classroom as a typical peer. You would think they would have noticed the behavior changes but they didn't until I pointed them out. His pediatrician and ENT both referred to sudies that have shown that some kids get ADD/ADHD with strep but the behaviors resolve once the strep is resolved. But noone made any references to PANDAS.

 

Sean's behavior issues didn't resolve. It has only gotten worse. And after reading about PANDAS I realized that there were even more behaviors that we were overlooking that are either tic or OCD manifestations. We met with a psychologist yesterday who has dealt with other PANDAS cases and she has referred us to a local pediatrician who has dealt with other PANDAS cases. I'm thinking he may have ties to Dr. Murphy since he did at least part of his education at UF.

 

I'm not surprised at the PANDAS diagnosis though. It's not the first time I've dealt with unusual medical conditions. We're temporarily living in Florida (not close enough to Gainesville where Dr. Murphy is). I actually told our new doctors that they should be paying us because we specialize in the rare and unusual and they might have a chance at making medical history with us or at least getting published. LOL!!! Boy, wouldn't that be a wonderful solution to the rising cost of healthcare - have the patients charge the doctors!!!

 

I believe Sean was predisposed to PANDAS. My entire family has asthma and allegies and just lately immune issues, and my husband's family has had neurological disorders associated with medical ailments. What a combo! My childhood asthma doctor was one of the key doctors at University of Michigan's Mott's Children's Hospital Department of Allergy and Immunology. I may contact him for an opinion at some point too.

 

Sean's OCD manifestations center around Ben 10 (a child superhero), insisting on buying him toys, and death. We've had some deaths in the family and his grandfather is in end stage Alzheimer's which only exacerbates it. Yesterday he actually told the psychologist that he thought she was going to die.

 

The tantruming and defiance at school is so bad that they referred us for psychiatric services. I requested psychological testing through the school, but they are insistent that they must go through this 8-week observation and intervention program first. I'm hoping that now that we have had private testing done and a recommendation for placement in a special needs classroom that they will be able to act on it.

 

On difficult days, Sean manages to exhaust both my husband and me. But despite his awful behavior I always try to find some element of amusement or content because it makes us all feel better. It might be a quiet moment after a tantrum, or some odd joke that doesn't seem that funny to me but it makes him laugh to his heart's content. It might be him saying "This was the best day of my life!" when I thought the day was actually kind of difficult. I think it's easier to look for these things because last year he was in a bicycle accident that almost killed him. We were in Hershey, Pennsylvania, and their children's hospital has a nationally recognized trauma unit. I actually commented on this as we drove by it the first day. I didn't know we would get a VIP tour! Sean rode his bike 100 yards down a steep hill and fell off onto a stump. You could clearly see the outline of the stump on his back. He broke two ribs and punctured and collapsed his lung. The surgeon said he had to have hit with the force of an auto accident and that she had never seen a child his age with those injuries where the spleen didn't rupture. And if he hadn't been wearing his helmet it would have been a different story too. The hospital team was great, and incredibly Sean was out in two days.

 

I appreciate all the factual information that has been incorporated into these forums. It really helped me sort out the interpretations of the various studies on treatments and their relative effectiveness. It also gave me a lot of insight into the symptoms of PANDAS. I think we will be able to work with our doctors much more effectively because of it and hopefully keep trial and error tactics to a minimum.

 

As a last thought, does anyone know if there are any national organizations related to PANDAS, i.e. support groups, associations. (It seems like there is for everything else!) I couldn't even find a web site with comprehensive centralized information. I had to get really creative with my web searches. I kept stumbling across Panda BEAR immune disorders!!!! I also sense that finding doctors that are experienced with PANDAS is an issue, too.

 

I'll keep you all up to date and of course add anything new that I think might be helpful to the forum.

 

Sean's Mom

[Seansmom]

Michele, I had asthma as a child and was treated by one of the head allergy & immunology doctor's at a hospital in Michigan. I have written to him regarding PANDAS but have not yet received a response. If he does respond with anything helpful I'll let you know.

[bsimon3]

I believe Sean was predisposed to PANDAS. My entire family has asthma and allegies and just lately immune issues, and my husband's family has had neurological disorders associated with medical ailments. What a combo! My childhood asthma doctor was one of the key doctors at University of Michigan's Mott's Children's Hospital Department of Allergy and Immunology. I may contact him for an opinion at some point too.

 

Hi Seans Mom,

This is actually my first post after lurking here for a long time and I hope I am doing this right! We are really struggling with finding docs who what to work with us on our son's health issue (tics, dark circles under eyes, eczema, unexplained fevers). We live in Ann Arbor and I wondered who the doc is at U of M that you referred to in your note. If you could pass on that name I would really appreciate it. After 1.5 years of stuggling with this, I am at the end of my rope and tired of spinning my wheels. And worst of all I feel that I am letting my son down.

 

Thanks,

Beth

[bronxmom2]

Hi Seansmom-- welcome.

 

One thing stands out to me in your post-- is the constant insistence on new toys really an OCD symptom?

 

My ds7 is also incredibly obsessive about his toys and play fantasy, and the insistent begging for new stuff to fuel his obsessions results in almost daily tears. Funny, I would have thought of this as selfishness, not OCD... good to have a new perspective.

 

I think this forum is the closest thing to a national group. Researcher, prominent doctors, etc. refer to it respectfully when they talk about PANDAS.

[ShaesMom]

Check out Diana P.'s new website www.pandasnetwork.org Her 9 year old son has Pandas. Also, Dr. K's website is webpediatrics.com