Seeing Pandas/Pans dr. Thurs.

[kmacdonald34]

I have an appt on Thurs. with Dr. Walter at Mass General. She works with Dr. Kyle Williams and other Pandas dr. at Mass General. Any tips on things to ask/request? I am still not sure if Pandas/Pans is what my dr. has but I want to eliminate it if possible. Thanks!

[MaryAW]

I would call and ask them what they need from you. I would suggest you write down a timeline of events - symptoms, illnesses. I would get a history from your pediatrician. You might want to check the PANS symptom scale:

 

http://latitudes.org/downloads/pandas-pans-scale.pdf

 

You are in very good hands. They will ask questions and do the appropriate bloodwork.

[pr40]

in general, it is good to know what you want from specific drs. we see Dr W. and he has a very conservative approach, for my taste. So, I would say that in this case you have to know even better what you want.

What makes you think that your child has Pandas/Pans? did you do any tests?

[kmacdonald34]

I guess what I am looking for is a dr. to look very specifically at her bloodwork and see if there is anything that along with her severe OCD onset might lead to the idea of Pandas/Pans. I do not think hers is strep based but more pneumonia based. She was hospitalized at the end of the summer for pneumonia and after that we saw a couple spikes in OCD. Then she got sick with a respiratory infection before Christmas (and I regret not having her lungs x rayed) and we had severe, sudden onset OCD that was extremely bad for a month. It is better but she is still not who she was before she got sick at Christmas. So I guess I want a dr. to look at her symptoms and bloodwork and say not PANS and we can just treat it as OCD.

[melmix]

I called Mass General to make an appt (6 mos wait) and posted on one of my facebook groups about them.

I was PMd by a couple of different individuals who told me not to go based on their experiences. I was already

seeing Dr T and they said he is a much better resource and that when they opened they were more open minded

to PANDAS but that pressure from the main hospital has caused them to diagnose psychiatric problems much more

often. This is not my experience as I have never been there but wanted to let you know.

Melmix

[pr40]

in your place, I would post the bloodwork results on the forum and ask here first for our collective opinion. then go to the visit with informed and push for what you think is best.

if OCD was sudden after the the pneumonia, you have a classical definition of PANS. You don't need anything else.

So, you mean she did not have any OCD before the pneumonia?

At MG they are especially vigilant, I am very sorry to say, about parents with autistic children hoping for Pandas/pans diagnosis.

[kmacdonald34]

She had one mild period of OCD/anxiety last spring where she didn't like her hands dirty. It did last for a couple weeks and then disappeared. We had nothing for months and months till the pneumonia this summer. Looking back it could have been OCD or just 5 year old sensory stuff. I had never dealt with it before so I had no idea. Compared to what we are dealing with now, it seems like nothing. Her symptoms now are clear cut OCD and are significantly worse. I would dream to go back to last spring when she didn't like her hands dirty for a couple weeks.

 

I will definitely post her blookwork results here and see what you as a group thinks.

 

And are you saying, a lot of people with autistic children go to Mass General looking for a PANS/PANDAS diagnosis? My daughter is no where on the autism scale so that is not my goal.

 

Thanks for all your input.

[pr40]

About autism and MG, I am saying that they are find that, to their taste, "too" many such parents come to see them hoping for Pandas/Pans diagnosis. I heard it ones from two different drs we see there. I could not believe what I was hearing.

If I were you, I would focus on the sudden onset OCD. And give any background info when they ask for it.

Among the reasons I am suggesting you go prepared and know what you want is that this kind of Pandas/Pans dr is going to be only a solution for a part of your puzzle. You will need to figure out the complete treatment of your child on your own -- whether it should include diet changes, which supplements, if any, to take, decide on appropriate CBT, and so on.

You also need to go one step at a time not to get too overwhelmed so I'll stop here.

[kmacdonald34]

Thanks. From what I have read, I realize that the PANS fight can be a hard one. We have started therapy, started inositol and omegas and probiotics and will look to diet next. I appreciate all your input. I know how hard it is to get heard when your child has Pandas. At student at my school had it and it took her mom so many months till she found a dr. who would listen to her and by then her daughter had severe issues. Will keep you posted. We are buried under snow and I have not worked (a teacher)in a days so not sure if I will see if I can push the appt. back. Getting into Boston right now is a nightmare. Thanks again.

[kmacdonald34]

Next available appt is May. Will be going tomorrow. Thanks for input. Will update tomorrow.

[MaryAW]

Your supplements sound good, but you're missing vitamin D3 - which is crucial. you need to find out what the current level is to know how much to supplement. 1000 IUs per day is safe, but you will probably need more. Most PANS children (most people, period) are low in vitamin D. Make sure you are doing Omega 3s only - no 6s or 9s. High quality on all supplements. Good luck. My DD is 3 years into this and getting much, much better. I feel that getting her D level up and the Omega 3s have been the most helpful in her healing.

[kmacdonald34]

Thank you Maryaw for the D3 supplement suggestion. Will get that this weekend.