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thenmama- I absolutely was not trying to start trouble! I am sorry. I actually didnt start the post with you in mind. It was more to maybe give that parent who is debating calling or attending the trial a "nudge" because I needed one. Its scary no doubt. you worry will my child get placebo or ivig or will they poke and prod etc.

 

I remember my first visit one night it was just too much and as my pandas child is sleeping next to me after a trying day, I cried and cried myself to sleep alone in a strange place. but I wanted people to know that the crying and bit of poking and prodding does not compare to care we get.

 

 

I guess I do feel like I need to defend Dr. S and the team and I kind of threw that in when maybe it didnt fit exactly.It wasnt just what you said its all around the PANDAS community.

 

I didnt quote anyone or you exactly because well, I forget where it was and it wasnt really the jist of what I was trying to say. anyhow, sorry if you felt singled out, not my intention but

 

you said: " Nothing/no-one is inscrutable and we all have a right to exercise our critical faculties and state our opinions without being "ranted" at or accused of badmouthing. I really hope that if we continually remind one another of this-- and our purpose-- as members of this forum we'll be able to see past our differing views in the interest of balance and community"

 

I agree. bad mouth was a poor choice of wording on my part, but I can also agree to disagree with no hard feelings.I feel I used my critical faculties and stated my opinion in this thread.

 

anyway I hope I got the point across and you know I am sorry if you felt misrespresented....

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Our son was one of the 1st to participate in the present NIH clinical trial. Sadly, they had not yet determined what would be an appropriate prophylactic antibiotic when we participated. DS got IVIG twice, got 90% better, then got strep three weeks after the 2nd IVIG. That was in July and we are still in the process of finding a course of action to undo that major set-back, eight months later. We are hoping to get IVIG in May and are still trying to work out the logistics so that we can get DS (now 13) functioning again.

 

Back in July, when we contacted NIH to tell them DS got strep in spite of his having religiously taken the antibiotics they prescribed, they said that we probably ought to go to a doctor and get some different antibiotics and then determine what prophylactic antibiotic we wanted to use moving forward. When we entered the study, I had naively assumed that NIH would be providing the advice and guidance on these types of issues. As we progressed, we found out that they were the experts until something did not go as intended and, from that point forward, we were pretty much on our own. Admittedly, I was bitter, at first. We went through so much to get DS well, and to watch it all come undone and have our world so quickly spiral back out of control again was devastating.

 

But, ultimately, I do believe that the folks at NIH care very much about helping to further the recognized research in this field. I also know that this does not necessarily put them in a position to help individual children - even, in some cases, the individual children who participate in their study. From what I understand, we were not the only family to have a child get strep right after treatment and lose the positive results that had arisen from participating.

 

Since it's a clinical trial, even though they knew full well that an additional IVIG treatment and different prophylactic antibiotics would rectify my son's situation, they were not in a position to offer those remedies.

 

Fortunately, for those clinical trial participants who have come after DS, NIH has now changed their recommended prophylactic antibiotic to something much more likely to prevent future strep infections. So, some good has already come out of my son's participation. It just wasn't necessarily beneficial to him, specifically.

 

As much as NIH does care, a clinical trial is a clinical trial. If necessary, one must be ready and willing to advocate for one's child even if this means seeking additional professional expertise beyond what NIH has to offer. All of this being said, I would highly recommend that anyone with a qualifying child seriously consider participating, both in terms of remedies and treatments for your child and in terms of advancing the state of research.

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Bulldog-

 

I am sorry you deleted your post. I urge you to begin a new thread with the info about the study you had posted.

 

No doctor is perfect, and all have their hands tied to some degree- but we all owe the fact that we are able to secure any treatment to Swedo. She is a researcher, and has to follow strict rules at the NIH, or her work will not help anyone. We all know that. I am sure that being in the trial, and having a setback, and not being able to get follow up care, is horrific. Look, it is always horrific when our kids relapse. But- this conversation should not derail a post urging parents to consider the study. And maybe big mighty could add a caveat- arrangements should be made with another pandas doc for future follow up care.

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Our son was one of the 1st to participate in the present NIH clinical trial. Sadly, they had not yet determined what would be an appropriate prophylactic antibiotic when we participated. DS got IVIG twice, got 90% better, then got strep three weeks after the 2nd IVIG. That was in July and we are still in the process of finding a course of action to undo that major set-back, eight months later. We are hoping to get IVIG in May and are still trying to work out the logistics so that we can get DS (now 13) functioning again.

 

Back in July, when we contacted NIH to tell them DS got strep in spite of his having religiously taken the antibiotics they prescribed, they said that we probably ought to go to a doctor and get some different antibiotics and then determine what prophylactic antibiotic we wanted to use moving forward. When we entered the study, I had naively assumed that NIH would be providing the advice and guidance on these types of issues. As we progressed, we found out that they were the experts until something did not go as intended and, from that point forward, we were pretty much on our own. Admittedly, I was bitter, at first. We went through so much to get DS well, and to watch it all come undone and have our world so quickly spiral back out of control again was devastating.

 

But, ultimately, I do believe that the folks at NIH care very much about helping to further the recognized research in this field. I also know that this does not necessarily put them in a position to help individual children - even, in some cases, the individual children who participate in their study. From what I understand, we were not the only family to have a child get strep right after treatment and lose the positive results that had arisen from participating.

 

Since it's a clinical trial, even though they knew full well that an additional IVIG treatment and different prophylactic antibiotics would rectify my son's situation, they were not in a position to offer those remedies.

 

Fortunately, for those clinical trial participants who have come after DS, NIH has now changed their recommended prophylactic antibiotic to something much more likely to prevent future strep infections. So, some good has already come out of my son's participation. It just wasn't necessarily beneficial to him, specifically.

 

As much as NIH does care, a clinical trial is a clinical trial. If necessary, one must be ready and willing to advocate for one's child even if this means seeking additional professional expertise beyond what NIH has to offer. All of this being said, I would highly recommend that anyone with a qualifying child seriously consider participating, both in terms of remedies and treatments for your child and in terms of advancing the state of research.

 

Was this when they were using once daily Amoxicillin as a prophylaxis? I could have told them that wasn't going to work.

 

So, after they 2nd IVIG, they didn't put your son on a better prophylaxis? Geesh.

 

Well, hopefully when they publish, they will make it crystal clear that aggressive steps (not once daily amoxicillin) to prevent Strep post-IVIG are needed, or a relapse WILL happen.

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Was this when they were using once daily Amoxicillin as a prophylaxis? I could have told them that wasn't going to work.

 

- We were told to give 500 mg azithro once a week, all at once, and instructed not to give more

 

So, after they 2nd IVIG, they didn't put your son on a better prophylaxis? Geesh.

 

- He was still on the very-low-dose azithro after 2nd IVIG and got strep. After that, when we contacted NIH to ask what we should do, they told us to get with a ped and figure out what antibiotics and what dose to try. Ped put DS on curative dose of Omnicef plus the Azithro. At one point during our e-mail exchanges, NIH recommended switching to low-dose Amox or a combo of Amox and Azithro. By then, we had already been to an ENT and an infectious disease specialist. They both recommended Keflex. So we stayed on Keflex until Dec, when Dr. Bouboulis switched us to Augmentin. I have heard from others who came later to the NIH trial that their children are on Augmentin prescribed by NIH. I am hoping that this does the trick for the present and future participants.

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Was this when they were using once daily Amoxicillin as a prophylaxis? I could have told them that wasn't going to work.

 

- We were told to give 500 mg azithro once a week, all at once, and instructed not to give more

 

So, after they 2nd IVIG, they didn't put your son on a better prophylaxis? Geesh.

 

- He was still on the very-low-dose azithro after 2nd IVIG and got strep. After that, when we contacted NIH to ask what we should do, they told us to get with a ped and figure out what antibiotics and what dose to try. Ped put DS on curative dose of Omnicef plus the Azithro. At one point during our e-mail exchanges, NIH recommended switching to low-dose Amox or a combo of Amox and Azithro. By then, we had already been to an ENT and an infectious disease specialist. They both recommended Keflex. So we stayed on Keflex until Dec, when Dr. Bouboulis switched us to Augmentin. I have heard from others who came later to the NIH trial that their children are on Augmentin prescribed by NIH. I am hoping that this does the trick for the present and future participants.

 

I believe there was another parent that said their child was on once daily Amoxi. for the study...maybe they are doing different abs for different kids?

 

OKay, my theory is all this low dose prophylactic stuff (esp. 1x daily stuff, unless it's Azith. which has a long 1/2 life) doesn't cut it for PANDAS kids. PANDAS kids don't have a "normal" or "good" immune system against strep and the risks of getting strep on this low dose stuff is too great. And the East Coast has Azith. resistant strains. IMHO you are just going to create more resistance by using the low doses. With high doses, everything gets killed. With low doses, the "stronger" bacteria can survive and replicate. That's my theory.

 

I wonder if NIH is now doing 1x daily Augmentin, or what they are doing. I even question that. If it works, I don't know why Augmentin's 1/2 life is too short for 1x daily dosing.

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My understanding is that we will be on a daily prophylactic dose until the completion of the testing portion of the study which will be a total of 6 months. I'm sure we will know more after our next visit. Our first one was pretty much a whirlwind.

 

After that it will be up to us to work with a local doc on continuing the antibiotics.

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We are currently on 5mg/kg. I'm sure we will discuss this more in depth on the return visit.

 

So 125mg for a 55 pound child...or

875 mg per week (vs the previous 500mg/week).

 

So the study is only doing 6 mo of follow up ? I think the previous study followed the kids for a year.

Edited by EAMom
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