Could this be PANDAS?

amother

Babyblue

Thu, Jul 30 2015, 7:19 pm

My DS has been struggling recently with aggression issues in school. We met with a school counselor, who sent us to a psychiatrist for mental health clearance. He left all professionals baffled. He is sweet, well behaved, smart and loveable. Yet for whatever reason he keeps on tripping up and acting aggressively towards other children, and only in school!

As an aside, he has been having recurrent strep in the past few months, going from one antibiotic to the next. Today he has another strep and was prescribed clindamycin 3xdaily for 30 days to finally get rid of the strep.

Today I had an epiphany. Could this possibly be PANDAS? I tried googling and the results frightened me. He fits the profile so perfectly. I plan to speak to our ped about my findings but would also like to hear what anyone on imamother has to say about this.

Does my son have hopes to return to school normally? (currently he is staying home for the summer as the summer school lacks the proper structure to keep him from attacking other kids). I am so frightened and confused.

amother

Babyblue

Thu, Jul 30 2015, 9:55 pm

Where are the heimishe doctors on PANDAS? Before I even contact Dr. Shullman, I wonder how her theory is perceived by the peds treating patients in our crowds.

amother

Chocolate

Thu, Jul 30 2015, 9:59 pm

amother wrote:

Where are the heimishe doctors on PANDAS? Before I even contact Dr. Shullman, I wonder how her theory is perceived by the peds treating patients in our crowds.

Dr. Shulman treats OUR crowds. She works in BP. (Duh! Rolling Eyes

)

ra_mom

Thu, Jul 30 2015, 10:11 pm

amother wrote:

Where are the heimishe doctors on PANDAS? Before I even contact Dr. Shullman, I wonder how her theory is perceived by the peds treating patients in our crowds.

PANDAS is still very much an unknown. Most doctors know about it, can take a blood test to check aso titer levels, try to treat it, but really don't know what they're doing. There are just a handful of doctors in the US that know how to deal with it properly and know how to deal with it long term. Dr. Schulman is a leading expert and we are lucky to have her locally in our midst, even if it does cost a pretty penny.

amother

Chocolate

Thu, Jul 30 2015, 10:15 pm

ra_mom wrote:

and there are many who don't agree with her approach of putting a kid on antibiotics for so long-term. My friend went to her with her child and the kid is suffering from side effects of the antibiotics in addition to the Pandas which is better but not gone.

octopus

Thu, Jul 30 2015, 11:43 pm

PANDAS diagnosis and the treatment for PANDAS is highly controversial. Read up on it. The whole syndrome makes sense- but treating with anti-biotics for six months to a year? I would think long and hard before doing that on a growing child. Get educated. A consultation with Dr. Shulman is $400 bucks off the bat, not covered under insurance.

amother

Babyblue

Fri, Jul 31 2015, 12:05 am

At this point, what are my choices? DS has had 3 sessions with a licensed school counselor, we dished out $600 bucks for a psychiatric eval, and one thing we all have in common now, is scratched heads...Not the school, not the teachers, principals, professionals and parents know or can figure what's going on. We have been told by the school admin that DS can return to the new school year only if we and the counselor can promise he won't be violent anymore...And that he will need a shadow initially when he returns in case he does have an outburst...

This is so frustrating because we dont even know what's going on and why the kid is so aggressive.

seeker

Fri, Jul 31 2015, 12:54 am

Probably your regular pediatrician can blood test for PANDAS.

I know there are natural/holistic/whatever methods that claim to treat it. Just if you want something to research as an alternative to antibiotics. Since from what I understand PANDAS is an autoimmune problem, it makes sense that supporting healthy immune system function would be a better response than antibiotics, and because PANDAS is not so well understood in the medical community anyway, this is one of those things where I would look carefully into both options.

amother

Forestgreen

Fri, Jul 31 2015, 3:01 am

If it comes down to anxiety meds long term with therapy and an OCD diagnosis vs. antibiotics for a year and a PANDAS diagnosis, you can understand which one I would choose.

amother

Babyblue

Fri, Jul 31 2015, 1:10 pm

amother wrote:

Dr. Shulman treats OUR crowds. She works in BP. (Duh! Rolling Eyes

)

I understand that, duh back...

I was asking how are the heimishe doctors accepting her theories? Before I get to speak to my DS's ped, I don't want to sound like a looney. I'll ask him what he knows about PANDAS and he'll tell me they eat bamboo...

amother

Indigo

Fri, Jul 31 2015, 2:20 pm

Please look into getting your son sleep tested. I have written on here before about this. My DS was having issue after issue in school and after ruling out ADD and other diagnoses by a psychiatrist we decided to see a sleep doctor. B"H by changing his sleep routine 95% of the issues have gone away.
There are studies showing that 50% of kids diagnosed with ADD actually have sleep apnea and other sleep issues and if treated, the ADD symptoms would subside.

seeker

Fri, Jul 31 2015, 3:41 pm

Babyblue, I am pretty sure they've all heard of PANDAS by now. They might not all "believe in it" but they will not prescribe bamboo, lol.

Indigo, what sleep doctor helped you like that? I am very interested because we clearly have some sleep difficulties, besides for the potential relationship to other difficulties. Would love more detail. Feel free to PM me if you prefer.

amother

Indigo

Fri, Jul 31 2015, 4:40 pm

Quote:

Indigo, what sleep doctor helped you like that? I am very interested because we clearly have some sleep difficulties, besides for the potential relationship to other difficulties. Would love more detail.

We actually went to the sleep clinic in the children's hospital in our city. We first met with a doctor. My DS then went for an overnight sleep test and we then met with the doctor again. We also went to an ENT to rule out any tonsil/breathing issues.

I have a friend whose son has severe ADD - he is in a special ed school. I finally convinced her to take him for sleep testing and during the overnight test he woke up more than 20 times and his oxygen was at dangerous levels. They are starting a treatment plan and told the mother that the kid may not have ADD at all. This is a kid that has been medicated for years and is not in a Jewish school because the school could not deal with him!

seeker

Fri, Jul 31 2015, 4:45 pm

Which hospital is that?
Does anyone know where in NY they have a good quality sleep clinic? I'm assuming they are not all created equal. I'm sure many just test for sleep apnea and if you don't have that then goodbye.

amother

Indigo

Fri, Jul 31 2015, 5:49 pm

I live in the South, so I can't help with hospitals or doctors Sad

If you get your pediatrician on board they may be able to help you out. My ped was the one that guided us to the right place.

amother

Salmon

Fri, Jul 31 2015, 6:00 pm

My daughter was one of Dr. Shulman's first PANDAS patients, she was our pediatrician when we lived in Brooklyn. So I hear your question. But I had a thought. What if his aggression in school is not necessarily related to the strep? What if he is being bothered or bullied? Maybe there is an undiagnosed learning disability that as he is getting older he is having a harder time compensating for a weakness? Why would the aggression only show in school if it is related to PANDAS?

amother

Salmon

Fri, Jul 31 2015, 7:02 pm

Long term zithromax kept it at bay. She is 18 now and outgrew it a few years ago. She's had strep without the PANDAS behaviors. PANDAS is by definition a pediatric disorder. That is what the "P" in PANDAS stands for.