bigmighty

My DS tried NAC at two different times - each for a two week interval. On each occasion, he began getting stuck and became extremely redundant - often repeating the same story a dozen times within an hour. By the time we'd concluded the second trial, it was very obvious that the behavior was tied to his use of NAC, so we stopped. In his case, that was the only change. Nothing positive transpired as a result of his use of NAC. Curious to hear from others what the positives have been and if there have been negatives.

NIH did specifically tell me that we would not get scores or break-downs on cognitive testing unless there was an area of concern significant enough to require exploration by the school system

I was told that the reason for the IQ testing is dual. First, they need solid verification that ever child in the study has an IQ above 70 in order for their results to be considered valid. Second, they are finding that some symptoms are different depending on cognitive competency. There are PANDAS symptoms related to diminished capacity to do math, reading, school work. In general, there seems to have been the feeling that PANDAS kids are not going to be able to continue to pass their classes during an exacerbation. What they are finding is that the kids at the highest end of the curve IQ-wise, often are able to compensate and can continue to get good grades in school, even when they are ill. I was told that NIH was considering comparing parent reports on school success or lack thereof with IQ to see if that was true within the study.

Yes. Your description of your situation/household is identical to what we experience. It goes in spurts where DS seems to have no cognition with respect to volume for a week or more at a time. Then it is somewhat back to normal.

"I am anxiously awaiting my sons IQ and testing... we are part of the study, so they are looking at these things to some degree" I do not believe that NIH will give you any IQ test results. I was told that they would me you know if they found any areas of significant concern. At one time, they told me that they would let us know a blanket "scored average or above in all areas" if all we well. But no specifics. DS did most of the one-on-one cognitive testing during his final visit at six months. We never received any feedback with respect to that testing.

http://www.wkyc.com/news/state/article/224507/23/Benefit-to-help-fight-difficult-pediatric-disorder-PANDAS

DS's titer score came back "below the measurable limit for testing" even though labs were drawn just minutes after his quick test popped positive. He is also diagnosed by NIH.

Sorry - missed the subtitle that said your DD has strep. I thought it was your DS. So sorry. I hope you get things back to normal soon.

So, what happened? Did the lab test from the throat culture they took during the NIH physical pop positive? How is you son feeling? Does he seem to be doing okay?

Please let me be misreading this. Are you saying that you think your DS has strep right now? Oh, no.

A spinal tap is a must for the study? My kiddo should not be having spinal taps due to other issues, so I am just curious if it is a requirement. Yes. DS was required to have two LPs in NIH study.

What about making some extra thick milkshakes and/or fruit slushies? Also, what about something like Boost (add icecream to that). Thanks. That's something we have done daily and will continue.

Hope it went as expected and that the recovery is smooth.

Thanks. They just called to follow up. Asked me to call them on Wednesday and let them know if we were able to push past it or not. They said the doctor will be back in the office then and we can make a decision.

Heard from the PA at Dr. B's office. She told me to keep DS on the augmentin and just push extra nutrition supplements.

Thanks. I e-mailed the nurse earlier today and already got a response. They are going to ask the PA tomorrow and e-mail me back. Again, thanks so much - Suzanne

Thanks. I was told that they would be closed until 1/3. So we will ride it out until then. I sent an e-mail to the nurse's line and will call the doc when they reopen.

Dr. B. switched DS to augmentin 875 from keflex 500 mg. It has only been three weeks, but DS has lost a pound a week since starting. He was well below the weight chart to begin with. Since starting augmentin, we have to follow him around and beg him to eat. He does have three meals and two snacks every day. But we are very lucky if any one of those is more than 200 calories. He was eating well and gaining on the keflex. Had been on keflex since september and finally starting to grow after not growing or gaining at all in nine months. We have a conference call scheduled with Dr. B. on Jan 23. If you were me, would you wait almost a full month more before calling, or would you call him now? I am thinking of contacting as soon as their office re-opens in the new year. I am sure there is a reason why the doc switched DS to the augmentin, so I want to give it a real try before throwing in the towel. Here's what we have seen on augmentin - Herxing days 5-9. But since then - very minor improvements with sensory issues, plus a bit more interest in helping others and more cooperative at home, in general. OCD slightly worse. Appetite reduced to near nonexistent. Ability to pick up on social cues, significantly reduced (almost, at times, to the point that we can't have him go out in public or see people in social situations anymore). Would you wait longer to see if there is eventual benefit? If not for the weight loss, we would attempt to ride out the increase in ocd and lowering of social cognition. But the weight concerns me. At this point, DS needs to gain 11 pounds to be above the 1st percentile on the weight chart. Anyone else on augmentin or others with insights? Thanks so much - Suzanne

Just curious, what probiotic?

Any chance of a throat culture popping positive or labs showing high titer? Or have you already tried that? So sorry.

Ellen, I cannot even begin to tell you how sorry I am about your son's illness. I hope that the very small amount of improvement you have seen, of late, is the beginning of the climb back to health. Sending hugs today and hoping you are able to get through this very difficult time. Best, Suzanne

Did they give evidence as to why on either count??? Antibiotics were prophylactic (allegedly - DS isn't the only participant in the study who got strep again while taking them). SSRI - main issue was small increased likelihood of suicide in teens. Also, although it was not said, I suspect that they wanted to see if any recession of symptoms was expressly due to IVIG, not other causes.

Hopefully, the more articles we see, the less we will see of the word "rare."

http://insurancenewsnet.com/article.aspx?id=316379&type=newswires