Hello & update!

[Pudgeo]

Hello, I wanted to say HI and check in...

We are doing HBOT and have seen some improvements....I still feel like we have a long way to go. My son is still very spacey and having trouble concentrating. I feel like we take 2 steps forward and one or 2 back!!

I have an appt with a Dr Sanger at Stanford next week. He is supposed to be some big medical researcher so I will be interested in his views on PANDAS ( if he thinks it's bunk or not) and what treatment options he would recommend.

I have my son off dairy and now I am thinking I need to do a trial of wheat free(because he is sooo spacey)

ALso my son had a really nasty ear infection(staph) and had to go back on anti-biotics..so now I am wondering what is going on with his immune system???

Thanks for everyones help! & hope you all survive the holidays! Sarah

[Pudgeo]

I just saw Amy S posts..sorry I was out for so long! My son had Lyme test run by Igenex and it did come back negative.

[amy s]

How often are you doing the HBOT and did you purchase your own? How does your son do while doing the HBOT treatment? Glad to see your update!

 

Oh I have another question too. I read somewhere that your son takes transfer factors. I have just completed the book "Transfer Factors and Immune System Health" by Aaron White. I am amazed that there is not more information out there about these transfer factors. Is your son still taking them?

[kim]

Sarah,

 

Happy to hear you're seeing improvements. When I read your post, had to share this link. Great video of hope, a mothers determination and quite a testiment to HBOT. Don't watch if you're feeling emotionally fragile thou. It's heart wretching.

 

http://www.ihausa.org/video/montel.html

[Chemar]

there are a number of members of the RSD forum at NeuroTalk who have used HBOT successfully for keeping the excruciating pain they suffer at bay

 

it is a promising therapy for a number of conditions it seems

[EAMom]

Sarah,

 

check out my post on OPC-3...maybe something to try for those still struggling post IVIG (also maybe good for PMoreno, Worried dad?)

 

What type of doc is Dr. Sanger? Let us know how things go. Often Stanford docs claim to be "evidence based" which means they don't believe in PANDAS (probably because they never bothered to look at the evidence).

[Pudgeo]

I used to use transfer factor but I switched to Epicor by VRP. It seemed like he was worse on TF but it's hard to tell.

 

We try to do the HBOT 3-4 times per week for a minimum of an hour. We rented one for the month of Sept and really started to see improvement in my son (personality coming back, less spacey, wanted to play again) so I was worried about regression so we bought a used one through our DAN Dr. With the HBOT we can't go in too late in the evening because it wakes you up!! All that oxygen gives you an energy boost! then you can't sleep at night!

I will post what Dr Sanger says...I know to not have my hopes up!! I was thinking of making him a DVD of my son before PANDAS so he can see the difference! Thanks, Sarah

[Pudgeo]

Hello, We met with Dr Sanger at Stanford on Friday. Yes, he was an"evidence based Dr" and he wasn't sure if he believed in PANDAS. He said he had no idea why my son changed after a fever/viral/bacterial illness, His explanation is that some kids are wired differently or have a pre-existing condition that's unknown and a fever/illness will set this off (isn't that PANDAS??? hmmmm) so he felt since my son was showing some improvement (after at least $20,000 out of MY pocket) that he didn't want to do anything or prescribe anything different....He also said that if it is PANDAS he will grow out of it anyway! ( yes, who wants to wait 3-4 yrs for this to happen!) Dr Sanger also gave me a little lecture on how HBOT wasn't tested enough for this condition.....

 

The good thing is that Stanford will review his MRI for me and give me a 2nd opinion. I brought in copies of all my sons medical records & all tests done by Kaiser & DAN Dr. THe nurse and 2 student Dr went through all of it and were very happy that I had brought it and had it well organized in 2 binders.

Hope that helps anyone who is thinking of going to see him! Sarah

[peglem]

I'm curious. What evidence is there that the kids will grow out of it? (ie..dare I hope?) Has it really been studied long enough to know? And what about all the missed growth and learning problems that happened during it? That's got to have a long term effect, if nothing else, just having to take extra time to catch up.

[amy s]

I'm curious. What evidence is there that the kids will grow out of it? (ie..dare I hope?) Has it really been studied long enough to know? And what about all the missed growth and learning problems that happened during it? That's got to have a long term effect, if nothing else, just having to take extra time to catch up.

 

 

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back)

Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us.

[pmoreno]

I'm curious. What evidence is there that the kids will grow out of it? (ie..dare I hope?) Has it really been studied long enough to know? And what about all the missed growth and learning problems that happened during it? That's got to have a long term effect, if nothing else, just having to take extra time to catch up.

 

 

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back)

Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us.

 

I'm not sure I understand your post. Did you say that before IVIG, your dd did not have any anxiety and now, s/p IVIG, she does? Pat

[amy s]

I'm curious. What evidence is there that the kids will grow out of it? (ie..dare I hope?) Has it really been studied long enough to know? And what about all the missed growth and learning problems that happened during it? That's got to have a long term effect, if nothing else, just having to take extra time to catch up.

 

 

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back)

Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us.

 

I'm not sure I understand your post. Did you say that before IVIG, your dd did not have any anxiety and now, s/p IVIG, she does? Pat

 

 

Sorry for the confusion....

 

Before August 2007 (when pandas symptoms began) my dd did not have any anxiety. She had anxiety throughout the whole time along with her other pandas stuff and now s/p IVIg she still has anxiety, albeit at a functional level at least.

[pmoreno]

I'm curious. What evidence is there that the kids will grow out of it? (ie..dare I hope?) Has it really been studied long enough to know? And what about all the missed growth and learning problems that happened during it? That's got to have a long term effect, if nothing else, just having to take extra time to catch up.

 

 

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back)

Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us.

 

I'm not sure I understand your post. Did you say that before IVIG, your dd did not have any anxiety and now, s/p IVIG, she does? Pat

 

 

Sorry for the confusion....

 

Before August 2007 (when pandas symptoms began) my dd did not have any anxiety. She had anxiety throughout the whole time along with her other pandas stuff and now s/p IVIg she still has anxiety, albeit at a functional level at least.

 

 

thanks for clarifying. When exactly did your daughter have IVIG? What changes did you notice and at what point? You may remember from my earlier posts that Gaby had it OCT 4, had 2 weeks of 80% reversal, then gradually behaviors came back.Right now she is still anxious and difficulty concentrating, but I believe its better - not too many anger outbursts - just when she's confronted by her twin or other kids and she gets anxious.

[amy s]

thanks for clarifying. When exactly did your daughter have IVIG? What changes did you notice and at what point? You may remember from my earlier posts that Gaby had it OCT 4, had 2 weeks of 80% reversal, then gradually behaviors came back.Right now she is still anxious and difficulty concentrating, but I believe its better - not too many anger outbursts - just when she's confronted by her twin or other kids and she gets anxious.

 

 

Nov 17 & 18 is when my dd had IVIg. She had and still has about 90% improvement back to baseline. But we didn't really get significant improvement until the second week after. She still has anxiety that is hanging on (but at a functional level now at least) and very subclinical OCD tendencies that I can see as well as emotional times. Now when she is emotional about something she cries rather than rages.

[Pudgeo]

Thanks you for your comments....My son is still dealing with mild OCD/ anxiety / and spaciness. I have tried different supplements but nothing seems to be able to beat this. I appreciate the input about Kavinace (sp?) and I am going to try it.