kimballot

Thanks to everyone ... and I am laughing at CHemar's cartoon and worried dad's story!

Yes -your son sounds very much like my son - right down to the kicking (though we 've not seen that in many years, thankfully). My son has NEVER EVER had a positive throat culture nor elevated ASO titer, and we did not pursue PANDAS for many years because of that, but my son DOES have PANDAS- as defined by other blood tests and his response to antibiotics. You need to get with a PANDAS expert quickly to get a list of blood tests. It is important to do the tests before you start with the antibiotic treatments. You need ASO, DNASE b, Streptozyme, micoplasma, lyme, and a full immune status panel to really know what is going on. I am not a doctor, I just know what the the PANDAS docs commonly look for - but you really need to talk to one of them to get it right. If you can get a list of blood tests from them, then you can do the blood work immediately and start antibiotics right after to see if they help, while you wait for the blood results and the consult with the PANDAS doc. That way the PANDAS doc will have the blood work sitting in front of her/him when they talk with you. Keep us posted on how it goes! Best of luck!

Vickie - you are an amazing wealth of information! What a find!

Pete - I am sorry you are not feeling well but happy that you found this forum. Your posts about exercising helping are so interesting to me as I am an occupational therapist and some of the physical therapists I work with have been asking me if anyone is researching exercise and PANDAS. Exercise has been shown to be of benefit in other autoimmune/ inflammatory disorders, so it makes sense that it would be helpful in PANDAS. I hope that you follow the leads that OCDMom and others have suggested and find a PANDAS expert to work with you. Please keep us posted in your journey - we are with you and you could be a family member of any of us.

Please know that we are with you. My son also had PANDAS as a preschooler. There was much that we missed. There were also times I chose to take him to things (like Kindergarten open house from 7pm - 9pm) and later regretted it because people who did not know him saw his behavior and judged him, and did not forget it. Today my son is 13 and, while I missed out on some special "normal" times, he really does not remember much of it. You made the best decision for you son. Try to see if you can find a way to commemorate the end of the year for him - maybe bring treats to preschool next week and take pictures with him and his teachers... then put it in the photo album as his preschool graduation. In 10 years you can tell him that he had a special graduation day... and in 10 years you will still sit back at his chorus or band concert and think how fortunate you are that his PANDAS is managed and he is able to participate.

Yes..I know. But you are on to something. We are building the ship as we sail it!! http://poetbabble.tumblr.com/post/19743102...p-as-we-sail-it I think you are adding an important piece to the ship.

Thanks, Buster - any thoughts of doing that with a simple voicover so folks could watch it from their computers? I'd love to send that link to the teachers at my son's school, but I think it needs just a little explanaiton of the slides, and I am not looking to do a presenation to the class right now.

Fixit - you must have such mixed feelings right now. I want to thank you for being persistent with this and for sharing it with us. This is why we have to remember that cunningham's test is still in the resaerch stages and we are all part of this development. I want to make sure I have this straight - you tested your son in November and his CamK came out at 105- and at the time he was taking taurine. You then took him off taurine and his symptoms got worse You retested in April (off taurine) and his Cam K was 160. Is that correct? If it is, it sounds like you stumbled upon something very important in discovering that the Taurine may have changed your child's Cam K level. This is important becuase it shows that we need to be careful about what our kids take before they take the Cunningham test, and it also shows that the Taurine may have been helping your son. Let me know if I have this right. Thanks!

I don't know if you're refering to my daughter, here, but reading nonverbal cues is something that has never been there for her. One of those key things in early childhood development that didn't happen for her. So, I would not expect her to suddenly exhibit this during PANDAS abatement. But, during the 1st 3 months of this year, when she was doing so well- I do believe it was starting to develop. We are working with an RDI consultant on social/emotional development and this is one of the things we are tracking. I'm eager to bring the PANDAS under control again so we can get that development back underway for her. Peg - actually, I was referring to Johnsmom's original post. It sounded like her son did poorly on this and is sounded like he had been diagnosed with Autism. She was wondering if it was PANDAS related. Your daughter's situation is probably the closest one, so it is interesting to hear that IVIG alone did not help with the facial recognition. It will be good to see if she makes more progress with the RDI consultant once the PANDAS is under control. I just wanted Johnsmom to know that while the the basal ganglia does have some sensory processing, it is probably not the primary area for registering emotion - that would be more of a limbic function. Keep us posted on how your daughter does!

The basal ganglia is involved in processing sensory information more for motor output. The limbic system, another part of the brain, does more with registering emotion and processing emotion. We know fairly well that cells in the basal ganglia misfire with PANDAS. It is likely that cells in other parts of the brain also misfire, and that could be the connection. We need to learn more about all the parts of the brain that are involved in PANDAS. The difficulty interpreting emotion is a classic feature of Autism Spectrum disorders. It will be interesting to see if this changes after IVIG with your child who has PANDAS.

Wow! Thanks for sharing that information! No doubt they will all be able to work with PANDAS soon! I just checked and there is one near me - go figure!

This IS a much needed post as we do annual reviews and planning for school next year. Please do come back and tell us how you are doing! Also, if you every want to share any other information about your experiences, please know that we would love to hear about it! You have taught me a great deal today.

I always get a prescription for diflucan when I get an ABX prescription. Diflucan is a systemic antifungal. My son gets yeast not only in the gut but also fungal sinus infections. Diflucan really seems to help. ... and I agree with Mati's Mom that skipping around and throwing flowers in front of him is helpful too. (lol)

Welcome. I am sorry that you child has been ill, but it is good that you found this site. I am going to echo the sentiments of previous posters - get a consult with a PANDAS doc. The docs most frequently used (in alphabetical order) are Dr B - Dr Bouboulis; Dr K - Dr. Kovacevic; Dr L - Dr Latimer; Dr T - Dr Triffileti. Other doctors may also be helpful (see http://www.latitudes.org/forums/index.php?showtopic=5023). Don't spend time trying to educate someone and bring them up to speed. You need an educated person to lead you now. The symptoms may subside in a few days. Do not let that stop you from pursuing this. I also recommend documenting things as objectively as possible. It is amazing what you forget in just a few days. Buster has a good charting system (but I cannot find the link now - anybody have that?). For now, I'd sit down once a day and write down your observations and list all medications and illnesses. You may also want to videotape the tics (just one short sample) in case you have to explain them to someone later. Please stay connected and keep us posted. Best of luck!

I agree with the information posted thus far and I found the flow chart helpful (once I figured it out). My son (13) was recently diagnosed with PITAND and I can tell you about our journey. We started with a phone consult with Dr. T, who had us get all of my son's medical records and put them into an excel spreadsheet that he sent us. That was one of the most beneficial things we did because it really showed my son's history of behavior problems that resolved with antibiotics. Dr. T also ordered a series of blood tests. All of these blood tests had been done before - but the most recent was about 4 years ago and they were negative for everything. This time, the blood tests were very helpful in finding, among other things, a history of micoplasma infection that was never identified, and current elevation in anti DNASE b titers. Dr. T did a lengthy phone consult with my husband and I and really educated us on what was happening and how my son's history led to PITAND. My son also had mild immune deficiencies that were new. Because of the immune issues and because he was currently fighting a sinus infection, we sought the help of Dr. B, who is currently treating my son. Dr. B also diagnosed PITAND along with immune deficiencies and has ordered several more tests to look for auto antibodies (I believe that is what we are looking for!). In addition, we enrolled in Dr. Cunningham's study. The study is not funded right now (that is what we are trying to get funded with pepsi refresh Project PANDAS)- so we reimbursed her for the test. My son's blood serum came back in the PANDAS range. I don't know if that is helpful - but that is the path we recently took.

We use an austinaire healthmate. It is pricey, but it works well and and lasts. We've had ours 7 years - replaced the filter once, and had it serviced once. We leave it on all the time in my son's room and it seems to work very well.

This article is a summary and advice from this particular doctor. He seems to be referring to research studies, but he does not cite the studies, so it is difficult to take the information at much more than face value and it is difficult to apply it to kids with PANDAS. for example when he talks about Two similar studies compared immediate penicillin treatment with treatment delayed for 48 to 56 hours in 343 children with documented strep throats. Early antibiotic therapy produced a three-time increase in the frequency of recurrent infections as compared to those for whom treatment was delayed It is really hard to know what each study said, how they picked the kids, how did they know when the kids developed strep. I think the general idea of NOT treating with abx unless necessary is great - but without seeing the original studies, it is hard to know how this fits our kids.

We are battling both PANDAS and Puberty right now.... There really are many similarities

LOL - thanks ... anti psych meds are fine if that is what is best for the child... but I am with you that we need to address the underlying problem first IF there is strep/inflammation etc. Thanks for your other post tonight on the 2008 articles. Good to have that freshly available!

Buster - I've also wondered about the neuro psychiatric meds that the kids took - particularly in Kurlan's studies. It looks to me like the kids were allowed to continue on whatever tic and OCD meds they were currently taking. If the tic and OCD meds helped at all, they would decrease the symptoms of the exacerbations. Therefore, if the kids were exposed to strep and were having an exacerbation, it might take a very long time to notice it... or the strep may clear before it was noticed at all. Then - when you go back and look for a correlation between strep and exacerbations of tics and OCD in the PANDAS group and you compare it to the non PANDAS group to see if there is a difference and ... um... it's not there. Wouldn't we have to remove kids from meds that mask symptoms to really do the study right? Of course that would not get past IRB or parents either if the meds are helping. Am I reading this right?

I have to say that the first time we tried melatonin it was not so great. My son seemed to have very active dreams and it was difficult to wake him up in the morning. I cut it in half - then half again to get just the right dose. One thing with melatonin is that having the lights on could make it harder for the melatonin to work. Once my son started taking melatonin I was able to talk him into turning his lights off and letting me lay down with him (that way he was not feeling so anxious about something bad happening). Over time, he got used to turning his lights off when that sleepy feeling hit. Now he (usually) reads for 20 minutes and then turns the light off himself - just a hall light on. When he is an exacerbation he asks me to lay down for a few minutes, but I can often talk him out of that. here is a website that may help http://www.talkaboutsleep.com/circadian-rh...n-correctly.htm

My dd turns all the lights on...I just thought it was her. I so appreciate this forum...makes me feel less isolated, still sad...for all of us... but at least less isolated. Mine turns them all off! We have the lights on thing too... lights on all night in his room when he is really bad.. but melatonin has helped that.

I am not sure why Dr. B picked 17 days. It may have had to do with my son just finishing a 5 day course. I am assuming he based it on my s on's symptoms and his goals fo r him, as my son has severe sinusits and allergies.

My son was on a 5 day course of prednisone April 10-14 for sinusitis, then was put on a 17 day course that started April 23 (today is day 8). He asked me today if prednisone brings back old symptoms (he does not know anything about "turning back pages" in IVIG). Says he noticed a few days ago that he started having the compulsion to "sound out words" in his thoughts. Says he's had this in the past. It is not bad now.. he says it is not interfering.. just a familiar thought pattern that returned. I was wondering if prednisone may also "turn back pages". Anyone have experience with this?