New to PANDAS & questions

[mom2boys]

My 6 year old was recently diagnosed with PANDAS. The neurologist called him a "classic case" and said that it is "nothing serious" and it will go away on its own. He was only having tics when we saw the Dr. They seemed like they were almost gone and now overnight he seems to have OCD. He is always crying, scared, having nightmares and stomache aches and is consumed with thoughts about a movie that he once liked and is now terrified of. This is awful and I hate seeing my child like this. I am just wondering if anyones child had this happen? To go from multiple tics (vocal & motor) to being almost back to baseline and than to overnight develop OCD symptoms and no tics. I am so confused. I spoke with my pediatrican again and she said that maybe he needs to "talk to someone" and told me to call the neurologist back. I will do that but I am also going to see another neurologist who treats PANDAS because it bothers me that the 1st was so casual about this- this is so difficult and is taking over our lives. Sorry this is so long, and thanks in advance for any insight.

[Chemar]

Hi

 

ok I am not a PANDAS parent but one thing I know is the neuro was not correct in telling you it is "nothing serious" and it will go away on its own. I am puzzled too that your pediatrician feels illness from a bacterial infection can be resolved by "talking to someone"??????????

 

when there is a flare up, its likely either that the strep is active or that there has been some exposure to it.

A flare of OCD is usually a clear indicator!!!

 

antibiotics are the first line of defense for most PANDAS kids

 

I REALLY hope you will get in to see the other neuro ASAP and personally would not waste my time with the first

[Pudgeo]

Welcome to my world! My 10 yr old son has PANDAS..He had a fever 17 months ago and totally changed. We went around and around for a year with Kaiser my HMO, they couldn't figure out what was wrong..his symptoms have waxed & waned alot. I got so fed up with Kaiser that I saw private Dr who tested him and his antibodies were off the charts! Now that we finally know what is wrong I am finding it's not soo easy to fix!

 

1. you need to find a Dr willing to think outside the box! you will probably have to pay to see a DAN! Dr or you need to find some Dr who will run a PANDAS/OCD panel on him. ALot of tradional Dr don't believe that PANDAS is a diagnosis.

2. Did anyone ever test your son for strep or ASO titer???

3. If you wait for PANDAS to clear up on it's own you could be waiting years!

4. Dr's have different protocals for PANDAS...anti-biotics/IVIG.....

My son has had one IVIG and we are supposed to get another next week. Kaiser said they would do 4 for me...

ALso I am giving him a ton of supplements/ LDN cream and nothing is helping! He is full of OCD & spacey right now. I have seen a reduction in his vocal and hand tics this month.

There's a lot of parents who have had success getting rid of PANDAS..if you search through the old posts here there's alot of info!

Sarah

[Pudgeo]

P.S> they also wanted my son to go to counseling etc..I feel like the traditional Dr's like to pass the buck..I felt like the Dr's didn't know what to do with me so they would pass me to someone else!

[peglem]

Sarah, can you tell me more about the PANDAS/OCD panel? What tests are included in this?

[Pudgeo]

It is a test by a company called NeuroImmunogy Labs .it checks anti-bodies to Strep..There are 12 tests on it..that check the IgM's and IgG's to B-call antigen, ganglioside, Myelin basic protein, Strep, tubulin..My sons numbers were really high, he scored in the abnormal range in 8 out of the 12 tests. My neuro said the test was meaningless. that there was no data to support it..My DAN! saw it and said that's PANDAS!!!!The test was about $350 and we ran it twice to be sure the results were consistent and they were..Sarah

[mom2boys]

It is a test by a company called NeuroImmunogy Labs .it checks anti-bodies to Strep..There are 12 tests on it..that check the IgM's and IgG's to B-call antigen, ganglioside, Myelin basic protein, Strep, tubulin..My sons numbers were really high, he scored in the abnormal range in 8 out of the 12 tests. My neuro said the test was meaningless. that there was no data to support it..My DAN! saw it and said that's PANDAS!!!!The test was about $350 and we ran it twice to be sure the results were consistent and they were..Sarah

Thanks for all the replies. What is a DAN? I am not sure what that stands for.

My son had 2 positive strep throat cultures in 4 weeks and then a couple of weeks later was when we first started to notice the tics.

Does everyone dealing with this go on prophylactic antibiotics? Or do you just take antibiotics when you have a symptom flare up?

I live in the NY area and am going to try to get an appointment with Dr. Trifilletti in NJ because I see that he does PANDAS research.

Does anyone have a recomendation for anyone else in the NY area?

[Pudgeo]

A DAN! Dr is a Defeat Autism Now Dr and basically they know alot about immune dysfunction and treating PANDAS. My son was never considered autistic until after getting PANDAS..now he has autistic symptoms from PANDAS..spacey/OCD . If you can find a DR who knows about PANDAS go for it!!!

Also check out webpediatrics.com it is a DR from Chicago who specializes in PANDAS..he believes in using augmentin for 3 months and then weekly...

Sarah

[mom2boys]

A DAN! Dr is a Defeat Autism Now Dr and basically they know alot about immune dysfunction and treating PANDAS. My son was never considered autistic until after getting PANDAS..now he has autistic symptoms from PANDAS..spacey/OCD . If you can find a DR who knows about PANDAS go for it!!!

Also check out webpediatrics.com it is a DR from Chicago who specializes in PANDAS..he believes in using augmentin for 3 months and then weekly...

Sarah

Thank you so much, I am very glad I found this site.

[michele]

Hi. Welcome. My six year old boy has PANDAS and has had symptoms for five years after a bad strep infection and high fevers at age one. Now everytime he gets around someone who has strep or even gets sick he gets a flare up of symptoms. He also has OCD, emotional issues and tics, ADHD plus he is scared of lots of things. Another area that was affected was his fine and gross motor skills. He has trouble writing and has a difficult time with his midline crossing and core muscle strength. I know what you mean about taking over your life. It sucks the life out of you when you worry about them so much. We have seen a DAN! and a neurologist an immunologist an allergist, occupational therapist. Today I am taking him to an eye Dr. because he seems to have trouble with visual motor skills too. We are on daily prophylaxis antibiotics Omnicef from the immunologist and Abilify from the neurologist to help with the mood swings and the ADHD. I heard wait and see for years. It never went away and his symptoms got worse with repeat infections. The DAN! Dr. did do lots of testing and did treat him by detoxing his body of heavy metals and used supplements to get his body back in balance. It did seem to help but he is not covered by insurance. The obstacle for you will be to find the right Dr.'s. Keep us posted and all the best to you guys.

 

Michele

o

My 6 year old was recently diagnosed with PANDAS. The neurologist called him a "classic case" and said that it is "nothing serious" and it will go away on its own. He was only having tics when we saw the Dr. They seemed like they were almost gone and now overnight he seems to have OCD. He is always crying, scared, having nightmares and stomache aches and is consumed with thoughts about a movie that he once liked and is now terrified of. This is awful and I hate seeing my child like this. I am just wondering if anyones child had this happen? To go from multiple tics (vocal & motor) to being almost back to baseline and than to overnight develop OCD symptoms and no tics. I am so confused. I spoke with my pediatrican again and she said that maybe he needs to "talk to someone" and told me to call the neurologist back. I will do that but I am also going to see another neurologist who treats PANDAS because it bothers me that the 1st was so casual about this- this is so difficult and is taking over our lives. Sorry this is so long, and thanks in advance for any insight.

[mom2boys]

Hi. Welcome. My six year old boy has PANDAS and has had symptoms for five years after a bad strep infection and high fevers at age one. Now everytime he gets around someone who has strep or even gets sick he gets a flare up of symptoms. He also has OCD, emotional issues and tics, ADHD plus he is scared of lots of things. Another area that was affected was his fine and gross motor skills. He has trouble writing and has a difficult time with his midline crossing and core muscle strength. I know what you mean about taking over your life. It sucks the life out of you when you worry about them so much. We have seen a DAN! and a neurologist an immunologist an allergist, occupational therapist. Today I am taking him to an eye Dr. because he seems to have trouble with visual motor skills too. We are on daily prophylaxis antibiotics Omnicef from the immunologist and Abilify from the neurologist to help with the mood swings and the ADHD. I heard wait and see for years. It never went away and his symptoms got worse with repeat infections. The DAN! Dr. did do lots of testing and did treat him by detoxing his body of heavy metals and used supplements to get his body back in balance. It did seem to help but he is not covered by insurance. The obstacle for you will be to find the right Dr.'s. Keep us posted and all the best to you guys.

 

Michele

o

My 6 year old was recently diagnosed with PANDAS. The neurologist called him a "classic case" and said that it is "nothing serious" and it will go away on its own. He was only having tics when we saw the Dr. They seemed like they were almost gone and now overnight he seems to have OCD. He is always crying, scared, having nightmares and stomache aches and is consumed with thoughts about a movie that he once liked and is now terrified of. This is awful and I hate seeing my child like this. I am just wondering if anyones child had this happen? To go from multiple tics (vocal & motor) to being almost back to baseline and than to overnight develop OCD symptoms and no tics. I am so confused. I spoke with my pediatrican again and she said that maybe he needs to "talk to someone" and told me to call the neurologist back. I will do that but I am also going to see another neurologist who treats PANDAS because it bothers me that the 1st was so casual about this- this is so difficult and is taking over our lives. Sorry this is so long, and thanks in advance for any insight.

Michele- that is interesting because we have been to the eye dr twice with our son- he too has visual motor skill trouble.

[michele]

We went today and my son had poor vision in his right eye causing straining to his left eye. He wants him to get prescription glasses. Although he did not see a relationship to the handwriting difficulties and writing on lines and making diagonols and crossing the midline. He felt it was more developmental and that part of the brain needs to catch up. He did see some allergies(bumps) in his eyelids. He said we could use drops but it would most likely not help with the tics. So I guess have his eyes checked was a needed thing, but now I found out he has something else wrong with him! I wonder why the school and ped didn't ever find this vision problem? What did you find out at the eye Dr's?

 

Michele

Hi. Welcome. My six year old boy has PANDAS and has had symptoms for five years after a bad strep infection and high fevers at age one. Now everytime he gets around someone who has strep or even gets sick he gets a flare up of symptoms. He also has OCD, emotional issues and tics, ADHD plus he is scared of lots of things. Another area that was affected was his fine and gross motor skills. He has trouble writing and has a difficult time with his midline crossing and core muscle strength. I know what you mean about taking over your life. It sucks the life out of you when you worry about them so much. We have seen a DAN! and a neurologist an immunologist an allergist, occupational therapist. Today I am taking him to an eye Dr. because he seems to have trouble with visual motor skills too. We are on daily prophylaxis antibiotics Omnicef from the immunologist and Abilify from the neurologist to help with the mood swings and the ADHD. I heard wait and see for years. It never went away and his symptoms got worse with repeat infections. The DAN! Dr. did do lots of testing and did treat him by detoxing his body of heavy metals and used supplements to get his body back in balance. It did seem to help but he is not covered by insurance. The obstacle for you will be to find the right Dr.'s. Keep us posted and all the best to you guys.

 

Michele

o

My 6 year old was recently diagnosed with PANDAS. The neurologist called him a "classic case" and said that it is "nothing serious" and it will go away on its own. He was only having tics when we saw the Dr. They seemed like they were almost gone and now overnight he seems to have OCD. He is always crying, scared, having nightmares and stomache aches and is consumed with thoughts about a movie that he once liked and is now terrified of. This is awful and I hate seeing my child like this. I am just wondering if anyones child had this happen? To go from multiple tics (vocal & motor) to being almost back to baseline and than to overnight develop OCD symptoms and no tics. I am so confused. I spoke with my pediatrican again and she said that maybe he needs to "talk to someone" and told me to call the neurologist back. I will do that but I am also going to see another neurologist who treats PANDAS because it bothers me that the 1st was so casual about this- this is so difficult and is taking over our lives. Sorry this is so long, and thanks in advance for any insight.

Michele- that is interesting because we have been to the eye dr twice with our son- he too has visual motor skill trouble.