Seeking support and PANDAS friendly resources in Seattle

[Sham7rock]

Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he had no symptoms of strep, thankfully we tested and surprisingly he tested positive for strep again.

 

I'm specifically looking for:

1. PANDAS friendly physicians in the Seattle area?

2. PANDAS families or a support group in the Seattle area?

3. Insights into getting into the PANDAS/PANS clinic at Stanford or any other place with leading experts?

4. Any tips on schooling & dealing with Seattle Public Schools to get services for children who are medically fragile such as in-home tutoring since he is unable to attend school?

5. Does it seem possible my son may have had PANDAS since age 6 - first grade - and we didnt have the MAJOR outburst of symptoms unitl age 12 - 7th grade? Just curious if others had a similar situation as in each time the child got strep things got worse and worse over the years - but in between things were mostly okay?

 

We will be seeing Dr. Hatha Gbedawo who is an ND and listed as a PANDAS specialist on PANDAS.org. We will also be seeing a neurologist Dr. Ming at CHMC. We already saw an immunologist and psychiatrist at CHMC, but both physicians made it clear they were NOT PANDAS experts. I reallly want to find an MD - neurologist or pediatrician in the Seattle area who is PANDAS knowledgeable so I will have the option to explore both western medicine treatments such as steroids & IVIG as well as looking at the eastern medicine side working with ND Dr. Gbedawo. So far I am not having much luck finding someone who can prescribe and treat with IVIG - (hoping Dr. Ming is a possibility.)

 

The very first time my son showed major separation anxiety and started having difficulties in school was first grade. I thought the problems were solely due to ADHD & dysgraphia/dyslexia. I now realize this may have been PANDAS and/or PANDAS causing an exacerbation of co-morbid ADHD & dysgraphia.

 

My son has had two rounds of antibiotics since December and has had some symptom relief, but he is still having extreme anxiety and is unable to attend school. He has now been out of school with the exception of a few days here and there since Nov. 28, 2016.

 

It is agonizing watching him be in so much distress (mostly anxiety) and not feel like we are directly treating possible inflammation on his brain with continued antibiotics and/or anti-inflammatories. We have started regular vitamins and fish oil to try to help with the inflammation, but that is not cutting it and we need a PANDAS specialist to move on with treatment.

 

Thankfully we are not seeing tics or obvious OCD - (although I fear there may be some hidden OCD issues.) We are seeing: restricted food intake; extreme anxiety; separation anxiety; emotional lability & depression; irritability, aggression and oppositional behaviors; regression; deterioration in school performance; increased sensory & motor skill issues; somatic issues including nighttime fears and inability to sleep in his own bed. He was picking at his thumbs until they bled, but thankfully that has stopped. Not sure where this fits in other than an "escape" from this nightmare, but he has become obsessed with his cell phone and will not be away from it for any length of time. Huge fits and rages if we try to limit it or take it away.

 

Any thoughts you have would be greatly appreciated! Thank you in advance for reading our story and taking the time to share your thoughts.

[makeitfromscratchmom]

I am no longer in Seattle, left almost two years ago, but we went to see Dr. Amy Derksen at https://www.holistichealingarts.org/ She is very knowledgeable about PANDAS/PANS and we were with her for more than 3 years and had great success. If you want more from me just let me know. Both of my kinds have PANDAS and had very different symptoms but many of those you describe. Good luck and you will see results. I know it is hard now but we have done quite well with my two and they are now 13 and 14 and almost appear normal, although they do have their moments. Hugs from another Mama

[Sham7rock]

Thank you so much makeitfromscratchmom. Helpful to have options. Still would really like to track down a neurologist in Seattle who is PANDAS friendly. I'm blown away Seattle CHMC doesn't have more options of physicians who specialize in PANDAS!

[makeitfromscratchmom]

We were living in Washington DC when my kids were diagnosed about 8 years ago. Dr. Latimer was our doctor and we were lucky enough to find her since she was one of three at the time. She is a neurologist. PANDAS/PANS is not mainstream enough yet. You will have to go with the doctor's who know and treat PANDAS. She didn't really help in a neurological doctor kind of way but as looking at the big picture. I found the holistic approach worked much better for us after her suggestions of IVIG, which we didn't do, and tonsils/adenoids out (think it helped). We were able to get my kids off of antibiotics after a couple of years and do naturopathic and supplements that worked great with Dr. Derksen. I would just give her a call and talk to see if she is a good fit for you. She is very well connected worldwide and in Seattle. She is constantly learning new things and takes the time 1-2 hours to really figure out the problems, which may also be Lyme co-existing with my son.