kimballot

thanks - We are the parents. We are not alone anymore.

Too funny.... good thing it was not your son's answer or you would be in the doghouse for a long time!

Grace - I am sorry to hear that this has been a bumpy road for you. UHC has been good about covering IVIG for our kids, but it sounds like they are going to look closely at the PANDAS diagnosis. Has your son had his exacerbations linked to strep in the past? Do you have that documented? The Swedo 1998 study (the first 50 cases) talks about kids having triggers with other infections after they have a strep-induced PANDAS exacerbation. That may help make the case that this is still PANDAS. Also - have you had you son's immune status checked? If there are IgG immune deficiencies, it may also make your case. Many kids with lyme do have deficiencies, so it is quite possible your son does. I don't think it will help if you have them drawn now, but if you did have them drawn in the past I would add that to the diagnoses.

If he is getting one infection after another you may want to get a full immune work up. My DS14 (PANDAS since toddlerhood)had normal immune workups when he was younger, but started to show some deficiencies about 4 years ago. The doc ignored them at the time, but an immune workup during an exacerbation last year showed increased deficiencies. It might be worth checking on for your son - even if it is only to establish a baseline.

Interesting.... You may want to have the strep titers redrawn in a couple of weeks as it takes 3+ weeks to see a rise and ASO rises before DNASE. You may also want to check for mycoplasma and lyme - if the azith is helping it is likely bacterial.

I took my son for a one year follow up from his sinus mucocele surgery last year (http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&fromsearch=1entry71680). His sinuses have seemed good to me since we started IVIG in February, but he had some allergy flare up last week. I was dreading the "well.. the only way we can tell for sure is to do another CT scan" (last one was 7 months ago). Instead, the doctor numbed the inside of his nose and use a new digital endoscopy machine (endodigi was the name). He put the endoscope tube up my son's nose and we all watched a video of the sinuses! Then he snapped a few pics for his file and said everything was open and clear! My son's nose hurt afterward, but I am thinking it is better than unnecessary radiation. My son is 14 so he was able to tolerate the procedure - I would imagine it would be difficult with a younger child. The doc said we would still need to do CT scans sometimes, but this would help to reduce the number. I sure wish we had this for the last 14 years of "do you think it's a sinus infection??" So... if anyone is looking for an ENT - or wondering about a sinus infection - ask about endoscopy in the office!

Philly- I don't know how I missed this - but it is great! For those who may not have seen this - click on the letter about bullying.

Hmm..... I did end up switching docs but not until I found one that was at least a little PANDAS savvy. Shop around and ask questions before you switch. Sorry about the labs... You will be very careful from now on so I don't think it will happen again. (my son informed me tonight that I am a control freak)

Wilma - you have come so far. You are an inspiration!

ASO titers are believed to rise within 3-6 weeks of strep infection, and antiDNAse B rises 6-8 weeks after a strep infection. Also, ASO falls more quickly than DNAseB when the infection clears. So, having elevated levels of either one or both does not guarantee that you have strep at the current moment, as the strep could have cleared in the very recent past and that would not be reflected for a week or two. A lack of elevated titers also does not mean that there is no strep, as the titer could be on the rise OR the child could have an immune deficiency that prevents the child from generating enough antibody to measure as elevation. So - the best way to use these measures is to do repeated measures to see if the numbers are rising or falling, recognizing that there can be a lag of a couple weeks between the changes in the infection and the titer numbers. If you are looking for great information on any of the blood tests or research, look for Buster's posts on the forum. He has not been on much lately, but he is the person who has really pulled together the research that is found on PANDAS resource network and on PANDAS network, and he has helped us all to understand things much better. Here is a link to a thread where there was much discussion about ASO, DNASEb and Cam Kinase - it may make your head spin the first time through, but it seems that this might be the kind of information you are looking for. http://www.latitudes.org/forums/index.php?showtopic=5141 Also - if you click on Buster's name on the post, it will bring you to his page - then you can click on "find my content" and you can read all of Buster's words of wisdom!

Dave - Well, now that explains why you are asking for a list of tests and did not respond the PM I sent you! I sent you a list of tests a little while back. Go to the upper right corner of your screen and click on the arrow next to your screen name- then click on messages. Whenever you have new messages they will also show up in the little number next to your name, and you can click on that. If the number says 0 then you have no new messages. Let me know if you have questions about what each test is for. Welcome!

I am sad to hear this but I am not going to mince words here - you really need to get your child to a doctor who understands PANDAS. I was given the same information about strep throat and ignored my son's PANDAS for six years. Last year he was miserable and his only symptoms were PANDAS symptoms (poor concentration and attention in school, joint pain, fatigue, OCD, mild tics). The local docs said "no strep throat = no PANDAS - put him on an SSRI". I knew it was PANDAS and got him to a PANDAS doc who did the labs and found lots of signs of infection and he now had immune deficiencies that he did not have 4 years prior. The doc then did a sinus CT scan (my son had a history of severe chronic sinusitis) and found a cyst that was so large it was eroding his sinus bone. They estimated it had been there for a year or more. I was sick that I did not find this sooner. He had surgery for the cyst, but his immune system is still recovering from that PANDAS attack. If you are seeing symptoms, you need to find someone to do the blood work. It does not have to be strep throat. ANY infection can trigger this. Look for signs of strep, mycoplasma, and lyme in the blood and look for signs of sinus infections and even allergies. This article is relatively recent and has authors who have been both "for" and "against" PANDAS in the past. They came together and agreed on the information in here - including the fact that strep throat is only one trigger of PANDAS/PITAND. http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf Best wishes to you.

Thanks,LLM - I took a quick look at the brain link and I think it looks really good - but I did notice that they classify dopamine as an inhibitory neurotransmitter. I believe dopamine can be either excitatory or inhibitory - depending on the neuron location - and I did not want folks to get confused (ex: why does my son have tics if dopamine is inhibitory and he has too much dopamine). Here is another link on that http://www.neurogistics.com/TheScience/WhatareNeurotransmi09CE.asp

Good glad it works - she does show choreiform movements but I want to make sure folks know that she does not show a romberg (though she recommends checking for choreiform movements this during a romberg test). If anyone wants to see a what a romberg test looks like try this:

Joan - So VERY happy for you. You and your family deserve all the best!

Tpotter - So happy you are getting positive results! Please tell your son how pleased we all are and that we are wishing him the best!

Dave - Dr. Swedo does a very brief demonstration of choreiform movements here at 13:45. I don't know if this is what you are looking for... http://www.autism.com/videoflv-legacy.asp?flv=sd08-46-nimh_swedo.flv&h=240&w=720&VID=84

I agree with Tami and I would add C3D immune complexes and IgA subclasses Depending on your child's symptoms, you may want to ask for thyroid tests (TSH, T4, T6). Also, if your child has been on medication for a while, you may want to have liver functions tested - Actually, it may be a good idea to have baseline liver functions tested even if your child is not on medication yet ... if you are anticipating long term antibiotics - AND if your child has enough blood available after all the other tests!.

Hello - and welcome to the forum. I agree with tpotter that you are fortunate to have an understanding doctor and you are fortunate to discover PANDAS early on. There are some folks on the forum with children who had one or two exacerbations and have remained exacerbation-free for a long time. Our case is just the opposite - many years of unrecognized PANDAS with severe immune system damage over time. I agree that an immunologist will help you to understand the infection and understand your child's immune system. You may also want to look for a DAN! doctor. DAN! doctors tend to be a bit better about supplements - and I think many of us are finding that keeping our children's guts healthy and inflammation low has helped to avoid exacerbations. Keep reading - the internet (and especially this forum) has much to offer. Also, you might want to check out the presentations from the Autism One Conference a couple of weeks ago - I believe most (if not all) sessions were recorded, and there were a couple of sessions (Dr. Cunningham's in particular) that dealt with PANDAS. This thread has more information. http://www.latitudes.org/forums/index.php?showtopic=13797&st=0&p=113933&hl=autismone&fromsearch=1entry113933

I indulge in audiobooks on an MP3 player - I can download them free from the local library and I listen while I clean or do outside work. I actually look forward to the annual garage clean up knowing I can be entertained while I do it... AND I am able to have conversations with other adults about popular books. I don't admit that I did not actually sit down and READ it!

EljoMom - You are asking the same questions that the researchers are asking now. We don't know why the exacerbation sometimes ends a few weeks after the infection and why in some cases the exacerbation continues. From what I read in this forum it seems like the first few exacerbations end with antibiotics, but as the kids get older and have more exacerbations (or perhaps go unrecognized and untreated like my son was for awhile)... then it seems to me that something needs to be done to stop the autoimmune process. That is just my observation - not anything I have read in a research study. That is why so many people say first to get rid of infection and then do steroids or IVIG or plasmapheresis if the exacerbation continues. I think that is also why sometimes IVIG alone does not work if there is lyme disease or another hidden infection - because the infection and inflammation are still there.

Eljomom- The blood vessels in your brain have very tight walls. There are not many things that can pass through the vessels into the brain. This protects the brain from lots of toxins. It is also the reason that many medications in the bloodstream do not go into the brain. This is called the blood-brain-barrier. One of things that does not normally go into the brain is antibodies. Antibodies should stay in the bloodstream and should not cross over into the brain. It is believed that in PANDAS antibodies somehow cross from the bloodstream into the brain. I think (and I could be wrong here) that the current thinking is that once these antibodies cross they attach to nerve cells in the basal ganglia. The antibodies do not destroy the basal ganglia cells, but they do make the basal ganglia cells produce abnormal levels of Cam Kinase II, which eventually affects dopamine levels. Some people have seen inflammation in the basal ganglia on MRI scans, which may be due to all of this activity from the antibodies. Now the question is - how do the antibodies cross over the blood brain barrier? Why do they cross in kids with PANDAS and not with other kids? What makes this "breach" in the blood-brain barrier? My understanding of this (and, again, this could be way off), is that no one has exact answers to this, but it is thought that this breach may be due to general inflammation, which causes the blood vessels to become inflamed - thereby weakening their walls and allowing the antibodies to cross over.

Eljomom - I don't know if allergies could be the only thing involved. If they are, then it is probably a direct result of allergies - not an autoimmune response. I think for it to be PANDAS/PITAND there has to be an antibody that crosses the blood brain barrier and attaches to basal ganglia cells. The idea is that inflammation may be the thing that allows these antibodies to cross - and allergies can increase inflammation. Therefore, kids with PANDAS/PITAND could have exacerbations of neuropsych symptoms with allergy flare ups. Anyone else have any thoughts on this?

If the antibiotics are working when you leave for disney, you may want to ask the doc for a few more days of ABX. In my experience, doctors do not want their patients to have a relapse when out of town, so the doc may be willing to extend it a few days to be safe.

Tiffany - I read the whole post - from top to bottom and I would say you are in the right place. Welcome. Look through the pinned thread at the top of this page ("helpful threads for PANDAS"). There is much information in there about ASO titers, doctors, and other resources. Also, please realize that strep is just one infection that can trigger an exacerbation in our kids. Any type of inflammation, including allergies, mycoplasma (walking pneumonia),lyme, and viruses (such as mono) can trigger an exacerbation. This is a recent article that is a good review of PANDAS and also talks about the role of other infections with PANDAS/PITAND http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf It would probably be a good idea for you to keep some sort of objective journal of your son's behaviors. Something simple, like recording his obsesive/compulsive comments or any other unusual behaviors. That will help you to see if the antibiotics are helping. Keep reading and please let us know how the antibiotics work.