PANDAS question for the experts

[tlkinser]

Hi everyone,

As you may have read already, my 5 yr old son was diagnosed with PANDAS by his pediatrician last spring after a sudden explosion of tics. His throat culture came back negative (rapid strep test), but his ASO titres were over 600. The first neurologist we saw actually dx him with Sydenham's Chorea, but my pediatrician thought it was more like PANDAS. A second neuro said it was not PANDAS as it's common for kids to have strep at any given time and in order to be dx with PANDAS, my son needed to have another sudden explosion of tics AND test + for strep.

 

So, my question is, is this second neurologist correct? My son has exploded with tics again this summer (worse than last spring), but his ASO titres have been normal. I think I've read that strep can live in other parts of the body. Is this correct? I am asking all of this because I would love to get him in with Dr. Murphy at Shands but am afraid I will be declined because he is not testing + for strep anymore. Part of me feels like the second neuro was right, but the other part of me KNOWS that there is some kind of conflict/battle going on inside my little boy's body. Is it possible that there is still strep somewhere in his body that doesn't show up in a blood test?

 

Thank you for your help.

 

tlk

[Chemar]

Hi

 

I am by no means a PANDAS expert but my son was seen by Dr Murphy 7 years ago .

 

Dr Murphy does not only consult for PANDAS cases, but covers a wide range of pediatric psychiatry and neurological disorders, plus, the very fact that your child has had strep and does have tics etc fits right into her area of expertise.

[michele]

Hi again,

I am by no means an expert and spend most of my days researching to learn more on PANDAS. Here is what I know about Dr. Murphy and Shands. Dr. Murphy's number is 352-265-7041 She has a guy receptionist by the name of Dustin. His number is 352-265-8500. He sets up the appointments and is called the intake coordinator. He told me last week he will schedule appointments for Dr. Murphy after he gets copies fromyour records faxed to him. 352-265-7054 is the fax number. He schedules about three weeks out. She sees PANDAS patients on Fridays. Dr. are very leary about making an actual diagnosis in writing for PANDAS. Pam is Dr. Murphy's research assistant. Her number is 352-846-1456. I left a message last week and have not heard back yet. Did your pediatrcian put PANDAS in writing as his diagnosis in his files? I have had it told to me by several Dr.s but they ususally are more apt to diagnose as ADD or chorea movements brought on by strep infections or immune problems. That is why I want to go to Shands to get Dr. Murphy's opinion since she is actually a lead in the research field on PANDAS. The other Dr.s seem to guess on diagnosis and treatments. A common response I have gotten is just wait and see. The Cleveland Clinic neurologist said a diagnosis is more of a label and what is more important is the now what do we do? How do we treat this now? We know his symptoms. We are in the process of another round of blood tests with a new DAN Dr. . Also penicillin V prophylaxis and Actos and lots of supplements daily. It seems to get worse with each infection and with age. More sems to come out such as behavior issues, tics and OCD. Someone today suggested a tourettes clinic at John Hopkins. They might have more success with treating the part of the brain that is affected. Just keep looking and reading. This is your son and nobody else has as much invested or love for him as you. Keep me posted.

Michele

 

 

 

 

Hi everyone,

As you may have read already, my 5 yr old son was diagnosed with PANDAS by his pediatrician last spring after a sudden explosion of tics. His throat culture came back negative (rapid strep test), but his ASO titres were over 600. The first neurologist we saw actually dx him with Sydenham's Chorea, but my pediatrician thought it was more like PANDAS. A second neuro said it was not PANDAS as it's common for kids to have strep at any given time and in order to be dx with PANDAS, my son needed to have another sudden explosion of tics AND test + for strep.

 

So, my question is, is this second neurologist correct? My son has exploded with tics again this summer (worse than last spring), but his ASO titres have been normal. I think I've read that strep can live in other parts of the body. Is this correct? I am asking all of this because I would love to get him in with Dr. Murphy at Shands but am afraid I will be declined because he is not testing + for strep anymore. Part of me feels like the second neuro was right, but the other part of me KNOWS that there is some kind of conflict/battle going on inside my little boy's body. Is it possible that there is still strep somewhere in his body that doesn't show up in a blood test?

 

Thank you for your help.

 

tlk

[tlkinser]

Thank you Chemar and Michele. I appreciate the input, especially the details regarding scheduling with Dr. Murphy. To answer a few of the questions, yes, I do have a dx in writing from my pediatrician for PANDAS last spring. I don't know if he received a report from my second neurologist negating the dx, so I'm not sure where he stands on the PANDAS issue right now. We haven't seen him since the spring. I am taking my son in tomorrow for another blood test just for some peace of mind as his behavior and tics have been more severe than ever these past few days. We have a well visit scheduled next week so I'll be able to discuss all of this with the dr then. I will bring all of the Shands info with me and beg him for a referral. I can't thank you enough for all of the information so that I can go into my pediatrican prepared. I will also look into the clinic at Johns Hopkins. ANYTHING to help my son stop ticcing every second of the day.

 

Thank you!!!

tlk