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PANS/PANDAS doctor in Seattle who does IVIG?


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Hi there,

 

Before I say anything else...if you are just starting this journey, ugh, I feel for you. BUT, there is hope. We are in the Puget Sound area. My DS was hit hard, out of the blue in 10/13.... We had what seemed a very long and painful road, but not compared to others on this forum (this community has been a life saver!).

 

We did abx, steroid burst(s!), and finally two rounds of IVIG, though I think only one HD over 2 days was actually necessary. Now, 15 months later our son is a functioning 6th grader that goes to school, enjoys his friends and is learning to cope with only some residual OCD, depression and anxiety being mostly controlled by a very low dose of SSRI (I know this hasn't worked for most). We feel beyond blessed after a year of and over 5 months of him barely leaving the house, let alone go to school!! The week before this sh*t storm hit he was one of the stars of his school play. Ugh. So dark, the memories.

 

What is your story so I can give you more info. In fact, PM me if you'd like to know more about our story.

 

Also, insurance initially denied any coverage...his official dx was auto immune encephalitis - post viral. No sign of strep so he is def PANS but our immuno knew better than to code it that way. Cunningham Panel helped with eventual coverage, as well as my 4 page appeal letter. Eventually insurance covered the $75k bill (IVIG was done in hospital setting).

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  • 2 years later...

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 was a-symptomatic, but 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 am 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!

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Hi Sham7rock....

 

I'd say your symptoms and history sound highly suspicious for some sort of immune mediated mess. And it is hauntingly familiar to my own story.

 

Curious who you've already seen? And is CHMC Seattle Children's Hospital (SCH)? You can PM me if you are more comfortable. I feel like I've heard Ming's name mentioned recently, maybe on an FB page? Anyway, it is worth a shot to be seen by any doctor, especially if your expectation can be adjusted to expect the worst...know what I mean? Of all the frogs we've had to kiss along this sh*tty journey, we've always had at least something to learn even from the biggest skeptics. I would suggest that you refrain from using the term PANS or PANDAS at SCH, or honestly any doctor for that matter. Just stick with the facts and timeline re: your son.

 

I absolutely believe you can have years of functioning even through smaller exacerbations that may come and go only to be passed off as a phase of some sort. My son fell off a cliff with what we refer to as acute onset literally overnight back in 2013....but in hindsight I think there were signs and we muddled through some tough periods of time (separation anxiety, mostly) that were very likely flares or exacerbations post illnesses.

 

We have seen, and still do from time to time, see Gbedawo but our overall treatment is handled by a neurologist. Look up Dr. Lauren Plawner in Kirkland. Worth a try to meet her and get her input.

 

Pm me if you have more questions. And I'm interested to know who you saw in immunology (we were originally dx'd by Troy Torgerson) and who you have/are seeing in psychiatry. And what did they say?

 

Best to you.....

 

(Sorry for grammar or any typos...no proofreading this AM!)

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Hi MissionMamma - I'm still figuring out how this forum works and didnt realize you had replied. Yes I am referring to Seattle Children's Hospital. We have seen Dr. French in Psychiatry and Dr. Skoda-Smith in Immunology. Both were clear they are not PANDAS specialists. We were supposed to see Dr. Ming in neurology, but they called today and switched us to Dr.Vlcek. - no idea if he is PANDAS friendly or not. Good advice about just not mentioning PANDAS! Wow I'm blown away when there is clear literature and a PANDAS/PANS clinic at Stanford that there are not more resources at Seattle Children's. I did hear about Lauren Plawner and will explore that further ... was trying to find someone at children's because we dont have the best insurance so Children's works best for us. It appears my son may not have had a good response to his Prevnar 7 vaccination as an infant so the immunologist we saw is recommending we do a Pneumovax 23 shot to really test his immune systems ability to respond. I plan to wait till after I see Dr. Gbedawo to do this vaccination. All of what you said in your post makes so much sense from kissing frogs to falling off cliffs!! This has been a nightmare! Hoping Dr. Gbedawo will be able to help us. So far 2 months of missed school. I would love to talk with you more and will PM you my contact info. Thank you - Erin

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We have been working with Dr. Gbedawo since last summer and respect her wisdom, she is passionate and helpful. That said, she can't do IVIG but referred us to Dr. Plawner who has treated with IVIG and does recognize PANS as a legitimate dx. She has a kind demeanor but my child felt pressured-as she wanted to talk to her with us out of the room. Compliant child agreed, did a great job sharing but blew up once in the car. In hindsight if one knows PANDAS/PANS kids have separation anxiety then why expect it or even suggest they separate from parent? (Because she questioned if my daughter had it? Maybe but was costly to daughter) I pushed my kid too which causes more stress but we all wanted help so we were willing to do whatever (despite how hard it was for my daughter to have me leave).

My kids tire of seeing doctors and not get better, new pills new docs and so I wasn't surprised when my daughter refused to go back. I do think Dr. Plawner would be a good choice and she is one of the helpful willing ones who are learning about and treating PANS, which is so needed in this Puget Sound area.

Nearly a year prior to Dr. G we did a phone consult with Dr. K and he dx and of course suggested we do IVIG. A few months later we met with Dr. Vlcek (11/2015) he was at Seattle Swedish. To be extremely blunt- see Plawner instead!

At that time he clearly hadn't read or didn't embrace the PANDAS/PANS dx criteria/white paper. He didn't even do a neurological exam on my child and when I received the chart notes he didn't have the history correct; not even the correct referring physician.

This is my first post here but I read it often, it has helped me accept that I am not crazy though I can make excuses..."it was a scary story" 8yr olds don't suddenly stop sleeping alone because of a scary story/movie. I wanted to post and just offer caution about Dr. V. if your child is like mine getting them out of the house can be such a chore. I would do a phone consult first and ask him what he knows about inflammatory brain disease (PANS), if and how he treats it. To his credit he did want us to do the Cunningham panel.

 

We did the panel with Dr. G and it has been very informative, the lab will answer any questions you have, they are great! I wish we would have done it earlier but didn't have the money, though insurance actually covered some of the cost.

We are now working exclusively with Dr. Gbedawo, Dr. Trifiletti and psychiatrist Dr. Johnson (who was the first to suggest PANDAS- a life savor!). We opted to see Dr. T for a few specific reasons instead of returning to Plawner. Mostly because we felt we needed someone with lots of experience who could also do IVIG if deemed necessary. We were blown away by his insight, he knows these kids and the horror the families are living in very well, those that are textbook cases and those that are not. He and Moleculara explained a similar interpretation to the Cunningham panel results identifying one of my childs as being a more chronic state.

I might also research on here about doing the vaccine test/vaccines. I have learned a lot through parents posts.

Feel free to PM me if you have any questions, I am just starting to network support. Having two PANS kids and traumatized non-PANS kids under one roof doesn't leave a lot of time for support but boy is it needed! Just reading missionmamas post on this thread has been encouraging to me!

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  • 2 months later...

I'm so sorry I disappeared on the forum! Things have been crazy with trying to figure out how to get my son the treatment he needs, keep him occupied now that he has been out of school for 4+ months and we have to move in 2 months so trying to get ready for that. I'm also a single mom with autoimmune issues of my own. PANDAS sucks beyond belief and it blows my mind there are not more providers who are willing to step up and help.

 

I really appreciate each of your responses to my questions. I also got a little overwhelmed reading the forum and had to take a break and just focus on what was in front of me.

 

I never did end up seeing Dr. Vlcek - I read enough reviews to know it was not a good idea. And as a few of you suggested (knowing it is so hard to get a PANDAS kid out of the house) I decided to cancel.

 

Thank goodness for Dr. Gbedawo - she is fabulous! The only one I've been able to find in the Seattle WA area to really pick up the ball and help with PANDAS symptoms. My son is 13 and major symptoms started late Nov. 2016. It took a little over 2 months to get into see Dr. Gbedawo, but it was worth the wait.

 

My son got overwhelmed at the first apt with Dr. G so I suggest you bring someone with and when you get to the technical parts of how to treat etc. you have your child leave the room. Bring 3 adults total if you can so 2 can listen and take notes with Dr. Gbedawo and the other can take your kid off to hang out elsewhere. Its just too much info for a kid and it really freaked my son out.

 

He is doing somewhat better on prednisone, antibiotics and lots of supplements. Working toward getting IVIG soon. He's had severe anxiety, emotional lability, sleep issues, low frustration tolerance leading to rages, regression and temper tantrums, fear at night, not feeling well but can't explain what doesn't feel good, extreme skin picking till fingers bleed, food issues - wont eat (says food is bad/rotten) or super hungry now that he is on prednisone. Hard to say on handwriting deterioration at he was previously diagnosed with dysgraphia & dyslexia. (I now wonder and speculate that we may have been dealing with simmering PANDAS since 1st grade and "fell off the cliff" so to speak in 7th grade.) Worst part are the evening rages - which thankfully have stopped on 30-40 mg prednisone. He has not had any tics. OCD issues just seem to pop out briefly surrounding cell phone and picking.

 

Cunningham showed high Anti-Dopamine 1:4000 and high Anti-Tubulin 1:2,000. CaM Kinase was 113 which is considered normal but still above mean. Streptozyme 1:400, ASO 1290, Anti-DNASE B Titer 815 (after 2 rounds antibiotics.)

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