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It is time to move on to plan B. We have done 4 IVIGs with Dr. B and Ian is worse than he ever had been. His OCD is starting to cripple him big time. There haven't been any tics. But the OCD is worse than I have ever seen it. There are no co-infections. Lyme was all negative. he should be a typical PANDAS kid. But antibiotics do nothing. IVIG has done nothing, almost seems to make him worse. I don't know what to do next. He is now moving into even numbers ok, not odd. Saying things twice, walking up and down stairs so many times, etc. He is crying tonight because he can't take it anymore. He says his OCD is driving him crazy. He is only 8, no kid should have to live this way. We have tried this route, but it is not working. Steroids seemed to help at first. We haven't done them lately except the dose with the IVIG. He is on azythromycin again, was before. We have tried 3 or 4 different antibiotics. Clearly this is not helping him. The tics were here earlier in the year but seem to have subsided. The OCD is 100 times worse. I am going to make an appointment with a neurologist because the PANDAS route is not working for us. I am not giving up on it, but I don't see the point in putting him through 2 days of needles and treatments when it does nothing. I should have seen SOME improvement from it by now. I may make an appointment with an LLMD as well, but not sure how good that will be since there is no issue with Lyme according to the tests.....we did the whole IGENEX work up. Sorry to whine, I just don't know what to do and I am so frustrated.

 

Lisa

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I may make an appointment with an LLMD as well, but not sure how good that will be since there is no issue with Lyme according to the tests.....we did the whole IGENEX work up. Sorry to whine, I just don't know what to do and I am so frustrated.

 

Lisa

 

 

I am so sorry to hear about how difficult this has been. I would like to make several suggestions: 1) Just because the blood work is negative, this does not mean that he definitely does not have lyme or co-infections (my DS's blood work was negative, but he clearly has bartonella, finally came back positive for erlichiosis after almost 1/2 a year of treatment, and was clearly exposed to mycoP.) So, seeing a LLMD may prove beneficial. PM me if you want names.

 

2) Some people are finding relief with homeopathy and ART. I don't know great details about either one, but different things work for different people, and I wouldn't put any of them down.

 

I am going to keep your son in my prayers. I feel so badly for him.

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Lisa--I wish I had words of wisdom here. I am so sorry that nothing has worked. We are in the same position, however, we have not tried IVIG. I know this might not help, but at least you can say you tried it. I can't say that much. I'm too afraid of making things worse for her, but at the same time, it does help so many. But YOU HAVE TRIED. Way to go on that one! I don't know what else you can do at this point. PEX? I do understand your frustration, and I'm so sorry you are having to live this. I wish it had worked for you. I agree that after 4 IVIG and you see nothing but worsening, I would probably drop it. Wish there was another pandas doc you could consult with about multiple IVIG and them not working.

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I thought I was doing the right thing seeing one of the leading professionals with this disorder. Yet I can't help my kid. I don't know. Even Dr. B seems totally puzzled. Great, we are the first case that doesn't follow the protocol, lol. I am going to explore an LLMD. I have to, right? I have to help my kid. I didn't go the Neurology route because it seemed so pooed pooed here, with pandas. But I have to go that route now, too. If they suggest trying some medication, I will do it. I have to help him. At least try. I am sorry to put down IVIG, it is a wonderful thing for some, it seems. Not for us.

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This is so terribly disturbing to hear, on many levels. IVig is our "ace in the hole". I am so sorry that you and your son are going through this. Poor kiddo! Although it is not a cure, would you consider intensive CBT with a solidly experienced therapist? Perhaps he can get some relief in learning to deal with and specifically targeting the OCD, while you continue to work toward recovery through medical avenues...your son will be in my thoughts each time that I look upon my own, during this holiday season and beyond. Hang in there! -Kath

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Lisa

I find it hard to believe that your son is the first of his patients to not respond to ivig. Actually my daughter may have been only his 3rd pandas case 2 years ago. She did not do well with ivig and Lyme treatment has turned her around. I feel like I remember your son's Lyme results and they were technically negative but he was positive or at least indeterminate for some pretty specific bands. I don't think Dr B is really all that well versed in Lyme. He is trying and learning but it's a complicated field even for those that have been treating for years. For what it's worth, I think seeing a Lyme doctor is a good next step.

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Lisa

I find it hard to believe that your son is the first of his patients to not respond to ivig. Actually my daughter may have been only his 3rd pandas case 2 years ago. She did not do well with ivig and Lyme treatment has turned her around. I feel like I remember your son's Lyme results and they were technically negative but he was positive or at least indeterminate for some pretty specific bands. I don't think Dr B is really all that well versed in Lyme. He is trying and learning but it's a complicated field even for those that have been treating for years. For what it's worth, I think seeing a Lyme doctor is a good next step.

 

I agree. I am sure we are not the first to not respond to IVIG. But it seems most end up positive for Lyme. We are going the LLMD route next. Regardless. that was plan B and we have to now try plan B. Plan C would be homeopathy. One step at a time, I guess.

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There's a clinical trial for RTMS soon. I think children after a certain age can be includeded. You could also try glutamate modulating drugs. I've had some luck with TSO.

 

How many IVIG's did Dr. Bouboulis suggest? Maybe the batch he got was contaminated with PANS antibodies?

 

 

Also, other ideas, you could try a gastroenterologist, see if he has a problem with his gut. They said at the Texas conference that the gut was big. There's also PEX and DBS... but I think for DBS you have to be older...like my age unfortunately.

 

Alternatively, you could try homeopathy.

 

He doesn't have a set number. I think it depends on the child and how they respond.

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pandas16---can you elaborate on the TEXAS conference and the gut involvement? Did they get into specifics? Whenever I have asked our pandas specialist about gut stuff, she says that's all basically hogwash. Even that pandas kids don't have issues with yeast. Were they talking about yeast? gut strep? gut inflammation from allergies? Sorry to jump on this thread, but curious about this.

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Does Ian still have his tonsils and adenoids. If so, it might be worth considering having them removed. Here are a couple of interesting articles that are worth reading. The reader comments to the first article are also interesting. Good luck. Alex

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

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Does Ian still have his tonsils and adenoids. If so, it might be worth considering having them removed. Here are a couple of interesting articles that are worth reading. The reader comments to the first article are also interesting. Good luck. Alex

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

He does. But at this point I don't think we are considering that. If we find down the road it might be a good idea, perhaps. I am thinking Lyme is a more likely route for us right now. he doesn't get sick hardly every, never has infections, etc. i will keep it on the table as an option if circumstances suggest we should.

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I am wondering if your son has any immune deficiencies. If he does not and you are seeing no progress why continue?

 

My son gets IVIG every 8 weeks, but has immune deficiencies and had chronic sinusitis - the IVIG keeps that at bay.

 

We went the LLMD route in addition to Dr. B. My son's bloodwork does not look positive for lyme, but he really responds the best to the lyme antibiotic cocktail. I figure as long as he has to be on antibiotics they may as well be ones that make him function better - and the lyme cocktail he is on now seems to do that. We are also doing supplements to support his gut and immune system as per the LLMD. I have to believe it is helping, as he is continuing to make slow, steady progress.

 

Best wishes...

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Lisa,

 

Reading your post is how I feel at times about my 8 yr old son. Even though things are so unbearable and seem like they will never be better I then stop and think back and realize that things were worse if that's at all possible. I just wanted to point out that my son too was negative on igenex for Lyme and coinfections, however my other 2 kids were positive. So it doesn't mean there are no other coinfections just because lab work doesn't show it. A clinical diagnosis is what you may need as opposed to positive labs.

Good luck!

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My son did not respond to much of anything before going to a lyme-literate doctor. Our last chance at PANDAS treatment was IVIG but I decided to bring him to an Llmd before going that route just to make sure we were on the right track. What the heck, it was just one appt. It was the best choice I ever made. As you can see by my signature line, we have found many things since then and are treating with many successes even though he is not there yet after one year of treatment.

 

Best wishes for your little guy!

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