Phasmid

Title got cut off! It should read "...make things worse right away." My question is can this happen as soon as the same day?? I can't believe that it really would happen so fast. Re-reading OCD much worse last night and this morning Infusion was yesterday morning and low dose Can "turning back pages" or "worse before better" happen that soon after infusion???

Congrats!!! Best wishes to you guys-

Hi, If you still haven't found a physician, I know that the Dowain Wright, MD, PhD at Children's Hospital Central California is a very caring, knowledgeable PANDAS doc who is using some novel treatments for severe cases. This hospital is in Madera. I know of a boy who is treated weekly there and the mom tells me how wonderful he, and his staff are to them. http://www.childrenscentralcal.org/OurDoctors/Pages/dwright.aspx http://www.childrenscentralcal.org/OurDoctors/Pages/default.aspx

Yes, until this Fall, he really only had challenges in math, since he has deficit in working memory/short term memory. I guess all our kids have this issue from what I read here. Tonight, as I was listening to him re-read aloud over and over, I could tell it was definitely a compulsion, and not comprehension issue, because he always stopped at the same word, and re-started at the same word. So, I asked him if he was okay, and he told me he was really frustrated with the "compulsion" as he called it. So he recognizes it as such. He asked if IVIg would make that go away. Poor kid. He used to have very poor comprehension, back when I consider him to have been "acutely" ill. It is much, much better now- almost 100%. But I don't know WHAT to do about the ocd except to read his textbook for him!?

Hi, ADHD was a HUGE part of the scenario for us. I have to say that antibiotics took care of most of this. However, over the course of six years we have found that a really nutrient-dense diet helps a lot. I think when the brain is affected so greatly, the nutritional needs of the child are even more than normal. I started his day in the morning with lots of protein rather than breakfast cereal. I also used magnesium citrate and I could really see a calming effect. A diet of mostly fresh, whole steamed veggies and lots of whole fruit helped my son a lot. He was totally off free sugar for about 9 months. I believe in nutritional therapy as much as antibiotic therapy.

Oh, I forgot I also have a question! Since we have only done a first infusion, and since he has been OFF azithromycin for past couple weeks, I am tempted to wait before adding back the azithromycin because I want to see what impact the IVIg has. If I do both, I won't know what is working. Doc told me to start him back on the zith, but I forgot to ask about waiting a bit. He does have re-reading ocd (what is that called??) where he has to re-read sentences over and over. This does SEEM to improve on the azithromycin. Would you consider waiting a week or so?

I believe my son's infusion will be covered under immune deficiency diagnosis rather than PANDAS dx. We have Anthem BC PPO. I did not have to get prior authorization. My son has specific deficiency in pneumococcal antibody. We will be doing every 21 days. I will let you know when I hear what/how much covered.

Perhaps the saddest impact of this dumb disorder. If it made the child shy, or quiet, or something else easier for others to handle it wouldn't be as bad. My son's friends couldn't take that he could never stop talking, could never stop moving, was aggressive, impulsive, and lastly, had coprolalia! He made and lost friends faster than I could keep track. I would just try to keep modelling good behavior for your child, and reinforcing the times he shows "likeable" characteristics and behavior. I also found that I had to supervise every minute of his play dates so that I could read his body language and intervene when necessary. At school I couldn't do that, of course, so he just ended up getting in trouble when he was having exacerbations, and had just one or two friends who COULD tolerate him!

yes, fingers, toes, every hair on my head crossed!!!

Just drove down to UCLA and home again for my ds12's first infusion. All went very smoothly- not one minute of waiting. In and out in 3 1/2 hours. Doc says infusion every 21 days for now, and keep him on azithromycin. He is getting replacement dose right now, so very low dose- about 25 or 30 grams in all. No side effects at all. His explanation is that he first wants to get antibody deficiency taken care of. Residual symptoms should, he says, clear up as well, but if not, he will use high dose later. After dealing with these symptoms for more than six years, it is easy to anticipate that this will be a magic bullet, and all will be just perfect with IVIg but I realize that might not be the case. So far, some anger/rage stuff over homework that may be more than usual. Don't know if this happens so soon or not?? I will update, as we see things, on our results with this protocol. To remind, my son's problems now are trichotillomania (first ocd sign to show during acute episode in '04), VERY minor germ/contamination fear, ocd while reading, and severe anxiety. Oh... doc told me that the abnormal movement which I described to him, that showed up in '03- the very first sign of problems- was most probably chorea! Nobody in six years ever mentioned that to me. What a shame.

Just when I start to think there isn't a thing wrong with my ds12 he says something about "germs" which makes me realize he is still not 100% I was making his bed and he stopped me and asked if the sheets had been washed. I told him yes, they had just come from the dryer. Before he let me make the bed, he wanted to know if they had been washed with "detergent, and disinfected." This is perplexing to me, since he doesn't care how dirty his own hands (or underwear!) are, but he is always concerned if his grandmother has "washed her hands." Do you think this is confirmation that he's not quite right? And good thing I have ivig scheduled? Do any of your "non-PANDAS" kids have this concern for cleanliness?

Wilma, I have been reading your posts and wish I could help more. I am not sure I understand your child's situation just yet. I can tell you that severe hyperactivity is very much part of the PANDAS complex of symptoms. I have video of my son's first severe episode that shows him literally unable to stand still. He ran from room to room and COULD NOT walk anywhere we went. It was completely exhausting for us, and other family members to be around him. That hyperactivity went away with resolution of his PANDAS ocd and tics. It took us from April until about September to see all of it resolved. But it was steady improvement the whole time. I am not sure but am worried about what might be going on with all that I see your child taking. With the serious psych meds your child is on, I hope that adding all the other meds is not interfering. I hope that you can find a local PANDAS specialist to help you. I think with as serious as your situation is, a remote physician is of little help. Are you able to get an appointment with someone in person? That doc needs to carefully monitor all the psych meds. I will go back and read your posts to gather what you have stated to this point about treatment so far.

My son was an early reader, well above his grade level. In fact, he could read before entering kindergarten. During his acute episodes, he couldn't focus at all to read anything. It was totally exhausting to him to read for school. He was home for three weeks from school during his really horrible episode, and I had to read his school work to him. He recovered and was fine after that. During recent exacerbations, he has dealt with reading issues again. This includes feeling that he has to re- read everything - over, and over, and over... which could be problem comprehending what he reads, or just having the compulsion to re-read. It is sad to hear him do that. When he goes on azithromycin for 10 days (that is what we do for each exacerbation which seems to come once per month or so now), that reading problem goes away.

I don't know how to avoid getting the commercials, but not too obnoxious! Susan Schulman, M.D. is physician in New York. I don't know if y'all already know about her. http://www.dailymotion.com/video/xensaa_pandas-and-obsessiveycompulsive-dis_lifestyle http://www.5min.com/Video/Giving-Children-Azithromycin-for-PANDAS-400046160 http://www.5min.com/Video/Family-History-Markers-for-PANDAS-401845755 http://www.5min.com/Video/The-Controversy-About-PANDAS-402327838

Have been reading some studies on both TS and PANDAS. In TS, impulse control is mentioned much more often than in PANDAS. My son had HORRIBLE impulse control issues. We had always assumed his issues were TS, prior to PANDAS dx. Wondering if poor impulse control has been part of the complex of symptoms in your PANDAS kids??

I would save the $$. Until there is something published from the new data collected. Until doctors can interpret the results, and test has been repeated by others scientifically. Right now, it is purely research and we should not be using this to diagnose just yet.

okay, that's what I thought you meant, but wasn't sure. What are the symptoms?

Since nobody else responded, Wilma, I will give my 2 cents. I don't believe that it is wise to spend money on Nystatin (very expensive, I know) and antibiotic and other meds and try to give activated charcoal as well. It is very likely that all will be neutralized by the charcoal. I also think that unless there is a gut infection with something putting out serious toxins, such as Clostridium or Giardia, docs should not be pushing this stuff so much. My own opinion only. I tried to use another type of "absorber and neutralizer" but it really kept the antibiotic from working. The probiotics I think are worth taking.

Fill the soap dispenser with lotion. Don't worry about the absence of soap.

Can you explain what you mean, "step down?" What are the symptoms? The prednisone worked well for my son's behavior. He wasn't having tics when he did prednisone, so no data there.

My son will have first infusion January 6. He has only behavior stuff- no tics (hasn't had motor or vocal tics for couple years). He only has a vocal tic that is barely audible and only triggered while watching a video or t.v. His outward sign of his illness continues to be trichotillomania (eyelash/brow pulling) and mood, oppositional stuff. His ocd is minor and pretty much in remission after another round of azithromycin. My question is this: Since he looks almost "normal" in terms of visible behaviors, is he likely to have no worsening or "turning back of pages" with infusion? He is having replacement dose only this time, which is about 30 grams. I don't know why, other than doc says it will be easier to get covered since he has absence of pneumococcal antibody. Also, my son is so mild in terms of symptoms, maybe he is only giving replacement dose because of this. Thanks in advance, and Happy New Year to all. May it be truly a new, and healing year to all!

Very much the opposite, here. Makes him "normal" which is calm, sweet, cooperative, etc.

I know the topic has been discussed before but I couldn't find threads regarding low vs. higher dose IVIG. My son will have his first infusion in January. His doc is giving my son a "replacement dose" of 25 mg. He said this will be sufficient to take care of the immune deficiency issue (has no pneumococcal antibodies) as well as the PANDAS symptoms. Using the dosage of 1.5 g/kg, my son ought to get 80+ grams of Ig. He is having infusion all in one day. I don't understand why he would only get 25 grams. Is it because it is his first? I know others have had 1.5 g/kg with same doc. Does the fact that my son's symptoms are relatively mild have something to do with the low dose? Thanks for any info ~

This is interesting. By this, my son would move down to "low PANDAS" range from mid range. This actually makes more sense, as he was not right in a huge exacerbation at time of his blood draw.

Congrats! We haven't done IVIG yet so no wisdom there. But my son will have his first in January. Happy you are seeing improvement, and hope that infusion brings him the rest of the way!