Immuno Appt yesterday

[FallingApart]

We had our immuno appt yesterday at our Children's hosp in Seattle. Our Children's "doesn't believe in PANDAS". I knew this going in but this immuno doc is highly resprcted and also a friend of our ped. For that reason, our ped had been able to explain our story to him prior to our visit.

 

I made it clear at the beginning of the visit that I wasn't hung up on him giving us a PANDAS diagnosis or even his believing in it. My only goals were for him to help us, stabilize our daughter and help our family. The doc was very kind and ver thourough. He and his team spent 3 1/2 hours with us. He only sees paties 4 times a year and we were one of them.

 

His thoughts were very interesting. He said he wasn't surprised that PEX hadn't worked for us. He said it is possible that DDs "issue" is at the cell level and if so, PEX wouldn't have touched it. (At this point, we had been there for over 3 hours, so I wasn't sure how many more questions I could ask. I really wanted to ask his opinion on why it worked for everyone else's child though). He said that based on the things that had worked thus far for DD, he believes that she has some sort of inflammatory autoimmune disease going on. He also feels that she doesn't fit neatly in any existing disease. He ruled out CNS Lupus and other diseases but said there isn't one that she does fit in. For that reason he can't give whatever she has a name. I asked if this is uncommon and he said it is not uncommon for auto immune diseases not to have a name.

 

Really, I felt like he was telling us we have PANDAS without telling us we have PANDAS. He seemed to agree with everything I said just not the name. He was nice and I didn't have to defend myself and so I felt fine with the fact that he didn't call it PANDAS.

 

He believes that we will need to do IVIG monthly for at least a year. Possibly more. Like 3 or 5 years. He said that if this was caused by a virus (strep) that these types of autoimmune diseases typically "burn themselves out after a while" That is fabulous news, yes???? He lso said that even if it wasn't caused by a virus, they often burn themselves out as well with therapy (IVIG).

 

After we left, I did feel that we FINALLY have a team on board who can help us. It also helps that DD seems to have started to stabilize after this IVIG. She is no gem yet, but she is tolerable and seems to be improving.

 

All in all, I think I can start lending some positive posts here and there now.

 

Thanks for supposrting me through our darkest times!

[KeithandElizabeth]

Wow, what great news!!!!! Your family has been through so much and this sounds like it is a great treatment plan since the previous IVIG's worked so well for you and the PEX did not. Is he saying the PEX does not help with the T and B cells and that is why is was not successful?

 

 

Elizabeth

[faith]

falling apart,

so this doctor is going to set up monthly IVIG for you? or you just went for his opinion? And he thinks IVIG is better over PEX for your daughter?

 

I'm thinking more and more that some doctors just don't want to get involved with this whole 'PANDAS' stuff, maybe that's why they are being difficult with regards to it and using it as a 'name'. but that was very smart of you to say you didn't want a diagnosis or care if he believed in it or not, you just wanted his opinion of what was going on with your child. that just makes me think more that he was trying to be 'careful'. I guess if they start validating PANDAS, it would open the floodgates to them and they don't want to deal with it or or not equipped to deal with it, or their head honchos don't want them to deal with it. ... just my feeling from what some of the experiences have been here. you know, everyone's gotta cover thier tushies.

 

Faith

[Suzan]

Great!! I am so glad you have someone to help. Sounds to me like the Doc is a PANDAS believer but keeping it out of the diagnosis may get IVIG paid for. Fantastic!!

 

Susan

[FallingApart]

Elizabeth, he did mention B cells. But I didn't understand really what he meant. But he did say it could be at the cellular level and he did say the B cells could be a part of our problem. So I bet you are right.

[JDuffner]

First, I'm glad to hear that she is improving! I pray you have a peaceful blessed Thanksgiving.

 

Have you seen Doctor Kim Kacoroski, Dr Keller's Homeopathic friend? I went to her today and she spent 1.5 hours with Belle. She did muscle testing, etc. What she said was very similar to what this Immuno guy said to you. She said my dd's issues are at the cellular and membrane outside the cell level. She said my dd's primary issues are inflammation, digestive and anxiety. She did not find "strep" in her or any "virus." She said that dd was another "cool kid" (Keller's nickname for these kids that are out of the box) and that my dd really wants to heal herself. She believes it will happen pretty quickly for my dd. She gave us six different remedies. The ones for the three primary issues I mentioned she said were "acute" and have to be taken 5 times a day. We see her again next week. and the following week. She is proposing we will see huge improvements in my dd in the next two weeks but that follow up will be ongoing and remedies will be quickly changing as dd heals. She mentioned in my dd's case not moving forward with IVIG for two months but rather take it slow and steady and keep testing as the remedies start working. She said my dd's issues with OCD, Tics, processing, fine motor and behavior will start fading as the inflammation rememdy begins working. She gave me a remedy for the cells to because she said my dd was blocked and nothing was gettign in, especially the magnesium she needs to stop the tics. She takes our insurance, just not for the actual supplements and remedies.

 

She also recommended a chiropractor that Keller knows, Dr. Gross, that works at the neuro cellular level. He has been doing work with kids on the spectrum, people with PSTD from Vietnam, including himself and is making marked improvements with his patients.