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Lauren Johnson Update-Our (abbreviated) story..

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My son is 10 weeks post IVIG and I took him to see Dr. B yesterday. We had a great visit and Dr. B was encouraged about my son's progress. He said the fact that the improvements continued during the second month after the IVIG was a good sign that we had accomplished what we needed to on the autoimmune side of PANDAS and that he expects further improvement and possibly no more IVIG. I can't say enough about how much I appreciate his approach to learning about and treating PANDAS. Not a frivolous bone in his body as far as I can tell. There was a mom with a boy of about 11 or 12 leaving as we were heading in. We gave eachother that knowing PANDAS look but didn't introduce ourselves. Sorry about that and if you are new to Dr. B, you are in good hands.

 

Alex

[

 

I am very happy for you...i want all the good news to keep coming...

I do have a question though....do you think it is a 2 step process...now that you've had ivig..???

 

i noticed you did pex about 2 months ago had success and then relapse....so maybe we need to count the pex as dose 1 or 1 treatment and ivig as the second dose or 2nd treatment...and maybe realisticlyl not set ourselves up for hopelessness and go in realizng we probably need 2 to make it stick...

not my origianl idea, i think i it was laurenjmom.and/or sfmom....but it seems more and more to be a common protocal for success

 

what do you think alex???

Edited by Fixit

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I love positive updates. We are seeing continued healing the in the 15th week post our 3 IVIG. I will add that IVIG has been a miracle treatment for us.

 

In our experience when there was a baseline adjustment in symptoms downward instead of upward for weeks (not days) an additional IVIG treatment was required. After our 3 treatment, the healing that we are seeing is difficult to describe, true resolution of symptoms. We are very hopeful it was his last treatment required! Our confidence is building but only time will tell.

 

-Wendy

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My son is 10 weeks post IVIG and I took him to see Dr. B yesterday. We had a great visit and Dr. B was encouraged about my son's progress. He said the fact that the improvements continued during the second month after the IVIG was a good sign that we had accomplished what we needed to on the autoimmune side of PANDAS and that he expects further improvement and possibly no more IVIG. I can't say enough about how much I appreciate his approach to learning about and treating PANDAS. Not a frivolous bone in his body as far as I can tell. There was a mom with a boy of about 11 or 12 leaving as we were heading in. We gave eachother that knowing PANDAS look but didn't introduce ourselves. Sorry about that and if you are new to Dr. B, you are in good hands.

 

Alex

[

 

I am very happy for you...i want all the good news to keep coming...

I do have a question though....do you think it is a 2 step process...now that you've had ivig..???

 

i noticed you did pex about 2 months ago had success and then relapse....so maybe we need to count the pex as dose 1 or 1 treatment and ivig as the second dose or 2nd treatment...and maybe realisticlyl not set ourselves up for hopelessness and go in realizng we probably need 2 to make it stick...

not my origianl idea, i think i it was laurenjmom.and/or sfmom....but it seems more and more to be a common protocal for success

 

what do you think alex???

 

 

That's a good question. I can't be absolutely sure, but for us the PEX seemed to fail completely. My son had a bad tooth infection emerge shortly after PEX and was pretty much back to his worst with PANDAS. That was last August into September. In the following months we tried different antibioitics and more prednisone but didn't get far. We did a low dose IVIG in January with some postive results lasting just a few weeks. We did the higher dose IVIG in mid Febuary. Personally I think the high dose IVIG is what is working, but I can't say for sure that the PEX or the lower dose IVIG didn't lay the groundwork. Dr. K however is pretty adamant that the PEX did nothing in our case. My guess is that if he hadn't had the tooth infection the PEX would have had some longer lasting positive results but that we were bound to have a relapse considering how easily he was reacting to any immune challenges. As we can all relate though, I feel no sense of relief at this point. He could come home this afternoon from school a complete mess and we could be back at square one. At a minimum, we are not in crisis right now and have actually had a semi normal family at times recently. Both Dr. B and Dr. K feel that we are on the road to recovery. Here's hoping they are right.

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My son is 10 weeks post IVIG and I took him to see Dr. B yesterday. We had a great visit and Dr. B was encouraged about my son's progress. He said the fact that the improvements continued during the second month after the IVIG was a good sign that we had accomplished what we needed to on the autoimmune side of PANDAS and that he expects further improvement and possibly no more IVIG. I can't say enough about how much I appreciate his approach to learning about and treating PANDAS. Not a frivolous bone in his body as far as I can tell. There was a mom with a boy of about 11 or 12 leaving as we were heading in. We gave eachother that knowing PANDAS look but didn't introduce ourselves. Sorry about that and if you are new to Dr. B, you are in good hands.

 

Alex

 

Alex,

I am so encouraged to read your update. Thanks for posting!

 

Angela

Edited by momaine

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