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Yes, it sounds crazy, doesn't it? He does wonderfully on antibiotics. But his ped won't prescribe them anymore.. and when she did the longest dose she did was 14 days.

 

 

So he responds well, which I assume means his neuropsychiatric symptoms abate with antibiotics, correct?

 

Despite this, the doctor you are seeing won't prescribe longer treatment dose--to at least try for a month? (Find another doctor.)

 

...and in the meantime someone is telling you that you cannot get your child to be part of the PANDAS study because he did have a GOOD reaction to antibiotics???

 

I am sorry, I am not questioning you, it is just that I am floored that the Ps IVIG study might be so narrowly defining the subject pool that they are taking ONLY children whose parents have NEVER seen a good reaction to antibiotics. Could that be right?

 

I would think that almost all children, affected by PANDAS, would have had antibiotics given to them for a strep condition (or illness of some other type), at some point in time, as these are the same parents who are "finding" the PANDAS study! (emphasis on the S)

--and if it is PANDAS then logically they ARE more likely to have had a good reaction to antibiotics.

 

I am really sorry you are going through this--really. Keep pushing, until you find someone to treat him. (--I encourage you to call NIH to get further clarification.)

 

T.Mom - YES his neuropsychiatric issues clear up with antibiotics. He will have MAYBE a few tics that don't clear up - this last round of clindamycin even cleared those up. His night terrors go away, his extreme anxiety and being scared of everything goes away, his OCD, EVERYTHING. But she says PANDAS is a one-time thing and if he's continuing to have issues after stopping the ABX, he has tourrette's and needs to be on meds. And his testing positive for strep is just because he's a strep carrier.

 

This is the email I got from Rachel, the coordinator for the Yale study:

 

 

Hi ,

 

I presented your son's case to the researchers on Thursday and they wanted to take a little more time to analyze the information. At this point, the consensus is that the best course of action for your son would be to go on another round of antibiotics. The idea is that sine he did benefit from the antibiotics, it would be best to try this again. The inclusion criteria for our study is extremely strict because we are replicating a study that was done in the 80s. Unfortunately, this means that many children who do have PANDAS are not offered the IVIG treatment.

 

One of our researchers, Lily Katsovich, will be in touch with you to give you more details on the recommended course of antibiotics.

 

Please feel free to contact me with any questions.

 

Best,

Rachel

 

I haven't heard from this researcher. The email was sent on Sunday.

Edited by mamapanda
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Hi Mamapanda-

 

I am sorry you are dealing with this.

 

I am going to lay it out for you- as I would like to hear it- hope this isn't too blunt...

 

Pandas is really hard. That is why this forum is so active.

 

The GREAT news is, that your son responds to antibiotics (that is not always the case, and unfortunately doesn't always remain the case).

 

You need to get him on longer term daily dosing at treatment strength. Now.

 

Pandas is an illness where, you, as the mom need to take charge. You need to call the docs, or email, and find out how they treat. Or throw their name out here.

 

You will NEED a pandas doc. That may mean a 3 hour drive, 6 hour drive, or a plane flight. This is the reality. A pediatrician will not suffice in treating pandas. It is great to have one on board- they can be helpful- but it is a specialist's area- and there are few in the country who really treat successfully.

 

You need a pandas doc to get your child on the proper antibiotics. You need to keep them on board if, god forbid, the antibiotics stop working, and you need to be more aggressive.

 

The sooner you just accept this- (and all of the logistic and financial difficulties it presents)- the sooner your child will be well, and you will have a doc that will give you some peace of mind.

 

Where do you live.

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Unfortunately, the IVIG is a study- not a treatment plan. So- they need to pick kids that meet a certain criteria strictly. It is unfortunate for you- but WE ALL need this study to be done correctly.

 

IVIG is readily available if you want it, if you see certain pandas docs.

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Thanks dcmom, we live in South Dakota.

 

And I understand about the study. It is a treatment study, however. Which makes it valuable to a lot of people, and their participants are people who want the treatment to help their kid and that is why they are signing up for the study. People don't just volunteer to put their healthy kid through IVIG purely for research. So it's not crazy for me to want my son to be a part of this study - I am like every other mother here. For the record, he met every one of their PUBLISHED guidelines. This stuff about the antibiotics is not published anywhere they advertised. I don't think I'm being unreasonable.

Edited by mamapanda
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I wonder if they worry that results would be askewed once they put him on antibiotics post IVIG/placebo. But, I did read over the criteria again and I don't see any clause about no children who currently improve while on antibiotics cannot participate. Does he nearly fill any exclusion criteria? http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969

 

I would contact that Rachel back and tell her you yet to hear from the researcher. You can call her which may be better. Ask for contact info or you should be able to track down info yourself too. I can feel your frustration. You know what your child needs, someone else will tell you what your child needs, but that doesn't help you get it. Tell her you would like something in writing or if your ped can contact her directly for guidance. If your ped gets the green light from someone from the NIMH to give your child abx, he probably will.

Edited by Vickie
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He meets all of the inclusion criteria and none of the exclusion criteria. He was disallowed solely because he does well on antibiotics. They are using kids who have been fairly recently diagnosed and those kids often have good results with antibiotics so it doesn't seem like he's so special in that regards. But if they're worried about him improving with the abx versus the ivig I can understand that. But how can they be sure they're controlling for antibiotics for everyone?

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Again, I am finding it difficult to believe what you were told verbally. How could the Ps IVIG study be taking ONLY children who have NEVER had a good reaction to antibiotics. Most PANDAS children, would have been given antibiotics for a strep condition (or illness of some type), at some point in time, as these are the same parents who are "finding" the PANDAS study! (emphasis on the S) Again, if it is PANDAS then logically they ARE more likely to have had a good reaction to antibiotics.

 

I am going to PM you -- in my opinion contact w/ a top doctor representing the trial location at Yale, or at NIH is merited to comment on the "medical advice" you are receiving.

 

I am sending you a PM --

 

One final thought: Could it possibly be that they think he is not "severe" enough right now, for IVIG? --Any thoughts?

 

I posted to you exactly what she replied to my e-mail. There was no verbal conversation. She told me she would call me the Thursday afternoon after the panel meeting or the Friday morning. When I didn't hear from her on Friday evening, I emailed her. She replied on Sunday with what I posted.

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OK, I think I understand.

 

As an outside observer, to me, when I read the email note you posted it does not imply that it is because he did well on abx that they are not accepting him -- but rather that he DID do well so they are suggesting you go ahead and try that again, rather then "risking" IVIG at this time (frustrating I am sure but understandable.)

 

I really don't see any reason stated in the note you posted about why exactly he was not accepted into the study.

 

You are asking really good questions here-- and I hope the feedback you are receiving is helpful along the way. All the best to you--

Edited by T.Mom
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OK, I think I understand.

 

As an outside observer, to me, when I read the email note you posted it does not imply that it is because he did well on abx that they are not accepting him -- but rather that he DID do well so they are suggesting you go ahead and try that again, rather then "risking" IVIG at this time.

 

I assume you must have had some other interchange w/ the staff re: what you noted was said about it being tourettes, and Ps being a one-time thing?

 

You are asking really good questions here-- and I hope the feedback you are receiving is helpful along the way.

 

My son's pediatrician is the one who is saying she thinks he has tourrette's and it's not PANDAS because PANDAS is a one time thing. We are having no luck with her and I've called the other pediatricians here and none are familiar with it. His ENT took his tonsils out but I know he won't be any help. Someone pointed me to this study so I contacted them.

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OK, I think I understand.

 

As an outside observer, to me, when I read the email note you posted it does not imply that it is because he did well on abx that they are not accepting him -- but rather that he DID do well so they are suggesting you go ahead and try that again, rather then "risking" IVIG at this time.

 

You are asking really good questions here-- and I hope the feedback you are receiving is helpful along the way.

 

My son's pediatrician is the one who is saying she thinks he has tourrette's and it's not PANDAS because PANDAS is a one time thing. We are having no luck with her and I've called the other pediatricians here and none are familiar with it. His ENT took his tonsils out but I know he won't be any help. Someone pointed me to this study so I contacted them.

 

Got it -- thanks. Hold steady, hopefully when you speak w/ the researcher you will find a doctor then to go to, and the abx to request. That should work in your favor for getting the abx.

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