peglem

Well, we've used valium, emla cream to numb the jab site, and play therapy. It always helped to, to let her know why the doctor needed the blood draw. Still, its never been easy.

Bringing back this ancient post to say that this evening my Allie opened an elevator and actually stepped in with both feet. She stayed near the door and we didn't "ride it" or even close the door, but all this time we've been working on this...it was a major break through. Before tonight we could not even get her close enough to touch the darn call button. Last week on spring break, I finally figured out how to get "friendly" elevator videos on youtube. (instead of searching "elevator", which brings up a lot of scary stuff, search "how to use an elevator" for instructional videos) She spent a lot of time on those vids and she was checking out/confirming info from those vids tonight. She did start the experience tonight w/ a bit of anxiety, I didn't push her. Every time I suggested we leave, she'd do more, get closer...the entire process took about an hour. Boy, what a rush. By the time we finally left the elevator, there was no anxiety! Hoping to repeat the experience soon!

I don't have a link, but the "Where Do We Go From Here?" paper- by Murphy et al has a nice review of completed studies and sorta of sums it all up well. If I had to pick one, I think that's what I'd go with. I guess it depends on what point you want to make to the doctor, though.

Absolutely- the treatment I was talking about was PANDAS treatment, not strep treatment, although treating the infection is obviously essential, its the anti-inflammatories, steroids and IVIG that ultimately bring results. We do see slight improvements w/ just abx, but stopping the autoimmune reaction is the biggy.

My child is much deeper into the spectrum- and I do believe it is due to PANDAS during early childhood development. I don't know if we'll ever get rid of my daughter's OCD since those are the (now) deep seated patterns of thinking/processing that were laid down during her critical times of development. But, the really huge, huge difference we see w/ treatment is the anxiety level- when she is in a flare we get constant meltdowns, SIBs and aggression. She spends most of her day just getting through episodes of fight or flight. She gets flash migrains. When she gets treatment- the OCD is still there, but low or no anxiety. She is able to recognize when she is fixated or stuck and can get out of it herself. She becomes much more flexible, communicative, cooperative and social- and that wonderful, spontaneous smile returns. The difference is very dramatic!

I agree, check out the study- your son will be examined for free by people who know more than anyone what is going on.

My grandson's culture showed growth of e-coli and staph, but not MRSA. So he gets to go home today w/ oral abx.

Just got the update- One doc said the little guy will need to stay in the hospital for 7-10 days! But, the next one said they were culturing, and if its MRSA then he'll have to stay on IV abx in the hospital for possibly that long, but if its not MRSA, and he's doing well, they can probably send him home w/ oral abx. I'll get on that probiotic issue and make sure that is taken care of.

I seem to recall that tylenol messes up methylation?

Thanks. I guess I can look at the 1/2 full glass. My grandson is with my PANDAS kid's ped and he knows a lot about PANDAS and will treat and I know that he does not push the vaccine thing. My daughter has already decided no to the HepB. So, I guess we know enough to recognize and deal with it early on if we have to. Can a breastfeeding newborn take probiotics? Have they developed their own flora already?

Well, I was totally not worried (I'm certain he is the greatest grandson ever birthed!)until this infection came up. Then I was stunned to realize that I'm more concerned about what might happen after the infection than the infection itself. PTSD I suppose.

The NIH is doing a study on treating new PANDAS cases. I don't have a link, but I'm sure somebody will post one for you. If you can get into the study, your child will get treatment from professionals who know this disorder better than anyone! But, I want you to know it is not too late to get successful treatment. Many people on this forum have gone much longer w/o treatment and still had good outcomes. Abx alone may not do the trick- but there are other things to try. It is sometimes very helpful to give ibuprofen (anti-inflammatory) around the clock. Also, for us, prednisone usually will decrease the autoimmune reaction. If you don't do the study, at least find a doctor who knows how to treat this.

My oldest (non PANDAS) daughter just had a baby Monday morning. Thursday at the pediatrician, it was found that he has an infection at the umbilical cord. He is in the hospital getting IV abx. I'm concerned about the infection, but very concerned about post-infectious neuro problems. Is there anything we can do to minimize risk of PANDAS or other post infectious problems? His mom is breast feeding.

Okay, forgive me for misreading- low IgA- I thought IgG (really, my 1st grandchild was born Monday and was hospitalized today w/ an infected umbilical chord and Allie is in a flare...sigh). Allie has been low IgA since the 1st time we tested, before any immune treatment. She is also IgE deficient. So, was IgA normal in the past? Was it the TSH that was high, or T3 and/or T4? Will they check for thyroid and IgA autoantibodies?

When was his last IVIG prior to the blood draw? When was his last PEX before the draw? Could the PEX have filtered the IgG?

Our problem is that if we don't respond, our child will seriously injure herself.

So, are the study participants receiving Cunningham tests?

Try to make a plan with your daughter when she is calm. Reassure her that you know this is something that happens to her that she doesn't like, but you need to make sure everyone (including her) is safe when it happens. She likely has no idea what to do and when you try to disengage, she may feel like you are punishing her for naughty behavior- which escalates things. Having a plan in advance and practicing when she is not in a rage will make her feel more in control and safer, just like fire drills make kids feel safer. You can probably find some good ideas on the Children of Rage link that I posted on the other thread.

We do 500mg zith every other day when not in a flare. I find that s boulardii works pretty good for the yeast issues- at least in the gut, and I don't have to worry about timing the dose around abx, since it is a yeast. For vag yeast I usually use diflucan.

http://mychildsafe.org/rage.htm I found this site many years ago and rediscover it several times a year. If your child rages, even if it is only during flares, you can probably find something on this site that will help.

oops! Never mind.

http://www.amazon.com/Xlear-Nasal-Wash-1-50-Ounces/dp/B000QYNWS2/ref=cm_cr_pr_pb_t they have it at Whole Foods, not sure where else... I've gotten it at CVS pharmacy.

The first time this happened to us, we were also on zith. But, we had never cultured after a positive rapid before, and most people do not culture if the rapid is positive. My guess is that if they confirmed every rapid w/ a culture, they'd find that it happens frequently. Anyway, we switched to 14 days of clindamycin, but had a +rst w/ neg culture 3 days after finishing that as well. We seldom do strep tests anymore (what good are they?) My daughter remains on zith with a switch to something stronger (clinda or rifampin) + prednisone when symptoms flare. I've tried quitting the zith and going abx-free, but we get a symptom flare w/in @ 3 days when I do that.

The positive rapid means that whatever antigen the rapid test detects was present in the sample. This is supposed to be an antigen that is specific for GABHS. We've had this happen alot. In addition to what blake's mom mentioned (swab not done well enough), it could be recent abx has made it so the bacteria does not reproduce so it won't grow in the culture. Could be lab error...lots of theories about why this might happen. But, I'd err on the side of caution and treat for strep.

What 10 tests did they run and do you have a copy of the results or did the doc just tell you its normal? It is common for doctors to report "normal" on labs, only to find out when you see the report that its not all normal. On the other hand, it does happen that PANDAS kids can look normal on paper, but still have an immune problem that causes an abnormal response to infection.