kimballot

Hi NGold - I just wanted to make sure you saw my PM to you. To read a PM, click the number in the upper right corner of your screen - near your login name.

My son has a lifelong history of PANDAS with chronic sinusitis. Have you been to a good ENT? We also see Dr. B and he is an excellent member of the sinusitis team for us! We spent 7 years wondering why my son had uncontrollable behavior with every sinus flare up - only to be told by MULTIPLE doctors that it was coincidence. Then we spent 6 years making 3 visits to a local neurologist who was supposed to know about PANDAS only to be told time and again that the sudden-onset of OCD and tics with respiratory infections or sinus flare ups was coincidence, and my son needed CBT (CBT is great - but he also needed to get rid of the infections). We finally ended up with Dr. B who found a huge cyst in my son's sinuses that had been there for a year or more.... and all the CBT in the world was not going to remove that... That was last year and we have spent the last 12 months trying to undo al the damage that this chronic infection caused to his immune system. Regarding lyme - you might want to see if there is a lyme literate doctor in your area who takes your insurance or who will give you the paperwork to send to insurance. LLMDs base the lyme diagnosis on the clinical presentation - not just the test results, as the tests are limited. My son has not tested positive for lyme per se, but has done VERY WELL on the antibiotics and supplements the lyme doctor has recommended.... we are still trying to figure out if there is some sort of coinfection there that the tests are not picking up. If you haven't read it yet - the PANDAS article by Dr. Murphy and colleagues last year is an excellent summary and clearly identifies the link between sinus infection and other illnesses and PANDAS exacerbations. http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf Best wishes as you make your way through the PANDAS trails!

IVIG is something you have to feel very comfortable with before you do it. It is a commitment and it would be easy to look back and kick yourself if you have a rocky post-ivig period. We went to IVIG because my son's immune status was becoming affected by the PANDAS. In retrospect, I do wish we could have done it before puberty, because puberty throws its own set of behavioral issues into the mix!

I follow the sam protocol as Momaine - but I give ibuprofen and benadryl starting the night before. Don't know if it helps... I figure it can't hurt. Lots, lots lots of water. DS did not drink lots of water the day after IVIG this time and had a WHOPPER of a headache that night for the first time. Said he would never skip the hyper-hydration again!

I am sending you a PM with a couple of ideas in Manhattan and Brooklyn

if you are considering this at all then call asap and make an appointment. You can cancel if you change your mind and someone from their wait list will fill it, I am sure. I called back in April and got an initial evaluation for July — and we will then find out if they recommend the CBT program. Best wishes!

It has been 5 months since DS14 had his first HD IVIG after major and minor PANDAS attacks since he was a baby. I have been posting updates each month as he had a major exacerbation that began 2 weeks after IVIG, and has slowly recovered beginning about 10 weeks after IVIG (http://www.latitudes.org/forums/index.php?showtopic=14025&st=0&p=115367&fromsearch=1entry115367). He has been receiving HDIVIG about every 8 weeks, and has now had 3 total. This month has been amazing. Every week he is more calm and more cooperative, though some days are better than othrs. He decided to take summer school classes in an effort to get into high school after missing so much o 8th grade. He is doing well in the classes and seems to enjoy them. I can almost see his brain trying to overcome OCD thoughts as he gets ready for school in the morning and then starts to give up when something does not go perfectly well (eg: we are out of the food he wants for breakfast, his favorite pants are not clean, or his hair is not perfect). A month ago, ANY of those would have been a reason to go back to bed and skip school for the day. Now he pushes past it. Still seeing rituals, but he has had them his whole life so I really think it will take lots of work to undo these. We see Dr. M in Florida soon and I am hoping she can help us now to understand these and work through them. The best part is NO ILLNESS really since IVIG. A couple of small colds that lasted a couple of days, but no sinus infections, no respiratory infections, and allergies are even better (though we are very careful with those). I am keeping my fingers crossed!!

Vickie - good job catching this early! I am keeping my fingers crossed for you. Your son has been stable it will be GREAT if he recovers without triggering PANDAS!

Mamapanda - welcome to the forum. A good immune workup is very important for our kids. Please keep us posted on your results!

LIKE

Jennifer - Great job!! Keep on moving forward!! I like your plan - sounds well rounded and practical.

I think United Health Care covers for "PANDAS" - all the others will often cover if there is immune deficiency... some more easily than others.

I basically agree with PANDAS 16 - except I think she meant to say that some believe lyme can result in immune deficiency (not that lyme can result from immune deficiency - though either case could be argued). I agree that once you have a crummy immune system (whether you are born with it or you acquire it) you are more likely to have long-standing infections that would be benign in folks with typical immune systems. I also agree that PANDAS and PITAND means "an autoimmune disorder whereby autoantibodies attack the brain". For some reason the immune systems of folks with PANDAS/PITAND and other autoimmune disorders do not distinguish "self" cells (eg: basal ganglia cells) from "non - self" cells (eg: Strep). I do not know if all types of infection can cause the body to make the autoantibodies originally, but our immune systems have memory B cells that allow the immune system to make new antibodies when it sees a familiar invader, so it is possible (I think) that strep is the original antigen that causes the body to produce these antibodies, and then any subsequent infection or inflammation results in a breach in the blood-brain barrier, allowing antibodies to get close to the basal gangila, where these autoantibodies think the basal ganglia is strep and go into attack mode. I think many of the diseases you listed could trigger a PANDAS reaction due to generalized inflammation. I also think that once the body has a faulty system for recognizing "self" from "non-self" it is likely that you will see the same problem in other structures such as the heart (Rheumatic fever), the joints (Rheumatoid Arthritis), the thyroid (Hashimoto) and the GI tract (Crohn's).

Minnesota Mom - I just wanted to thank you for being in the study! My son had long-term PANDAS prior to IVIG and we saw some improvement immediately (tics, OCD) and then a huge exacerbation around 2 weeks with continuous, gradual recovery since. cyndilynntk- Welcome! I wanted to let you know that you can send a Personal Message to members if you have questions about doctors. The members may not come back to this link to check the post, so you may not get your questions answered. To send a PM, click on the member's name and then click "send me a message". When someone sends you a message, you will see a number next to your name in the upper right corner when you sign in! I am also sending this as a PM to you so you can check. Good luck!

Tiffany - First off - I want to commend you for being open minded about this and not letting hurt feelings get in the way of treatment for your child. I think it is always good to use natural remedies when possible, and I also believe that children should be on antibiotics as little as possible as it can do harm in the long run. That being said - I am not sure that the doctor you are considering is really an expert in PANDAS. I read some of your earlier posts and it sounds like you have a pediatrician with limited knowledge of PANDAS who is relying on positive strep cultures or titers to diagnose an exacerbation. The pediatrician told you that you know more than he/she about PANDAS, which you said was scary. I understand. I have been in the same boat. I would caution you to really ask this new doctor about his/ her experience with PANDAS. There are many doctors who are very holistic that have experience with PANDAS and can complement traditional medicine with natural supports and detox, especially many of the DAN! doctors. Ask the new doctor how he/she would evaluate for underlying infections. That is really key. You cannot stop at strep throat. Our kids have exacerbations with a multitude of infections including mycoplasma, lyme, sinus infections, and viruses. If you take the child off antibiotics while an infection remains, you will only need antibiotics that are stronger and for longer down the road to remove the infection. I would agree with others that our healthcare dollars need to be spent wisely. You already know more than your pediatrician. Don't add another doc to your team that is a "trainee" unless you have a strong PANDAS doc to act as coach.

Mycoplasma that is untreated or undertreated can turn into asthma symptoms. Allergies can also trigger asthma symptoms. Has DS14 been tested for mycoplasma titers and/or been evaluated for asthma / allergies?

In some ways you are fortunate to have in laws who understand the severity of PANDAS and the need to find a good doctor. However, this particular doctor does not sound like your answer right now. We are fortunate that there are some doctors now who take insurance AND understand PANDAS. That would be the best place to start - and save this consult (and your dollars) for the future if you need it.

dut- WOW!! penicillin became and antigen for you!! Is this the same as an allergy? I would think not.. but I am not sure. That must have been difficult to sort through.

I am wondering if he has any pain with this. Also, which muscles or muscle groups are involved - is it (for example) his back muscles, or is it all muscles in general. Do you have a neurologist that you work with (who understands PANDAS)? This could be a basal ganglia problem, and a neurologist who understands PANDAS would be able to help you sort that out.

Many labels have been suggested for my son through the years.... ADHD, OCD, Tics, Tourette, Sensory Modulation Disorder, Dysgraphia, ODD, Depression, Bipolar, Developmental Coordination Disorder, Dyspraxia, Allergies... NONE of those diagnoses have stuck because they only last a couple of months at most and then he is "normal"... So - I've also been told he is "fine", "normal", "just a boy", "the product of an anxious mother and distant father", and "immature". But ... I've never been told he had Autism, PDD, or anything on the spectru- nor has it every struck me that he might. Why is this when so many children with PANDAS present with autisic symptoms? I can only conclude that the part of the brain involved in my son's PANDAS is different than the part involved with children with autism symptoms... at least so far!!

PANDAS 16 - Thank you so much for sharing. I always look for your posts as they help me to understand my son so much better!

Peg - I, too, have a rudimentary understanding of complexes - but this is what I know so far: My understanding of immune complexes is that they are the globs of "stuff" that normally form when the antibodies attach to the antigen and disable the antigen. They are then "removed" by the body via phagocytosis and other mechanisms of breaking down and eliminating (not sure what those are... but it is probably worth researching ... maybe I'll do that soon). When there is a big or chronic infection, these complexes cannot be removed by the body quickly enough. They are then deposited in joints and in organs (the kidney is a big one). They can cause joint pain and kidney disease. IVIG adds good antibodies to attack the antigens and make complexes. When someone has an AUTO IMMUNE disorder - the same process happens, but it is believed that the good antibodies in the IVIG also complex with the auto antibodies and disable the autoantibodies. The body then has to remove these complexes.. which can take time... and can result in deposits in joints and organs. Dr. Swedo briefly talks about that here http://www.autism.com/videoflv-legacy.asp?flv=sd08-46-nimh_swedo.flv&h=240&w=720&VID=84 and refers to it as "internal pheresis" because it is removing the auto antibodies through internal mechanisms. From my discussions with Dr. B after my son's post IVIG exacerbation, I was left with the impression that we should expect to see elevated immune complexes after the first IVIG and that some of those complexes were likely deposited in various parts of the brain (an organ), since that is where the autoimmune response was occurring. He told me that we should see the exacerbation decrease as these complexes were removed, and that we needed to keep doing IVIG for a while to keep the good antibodies up and prevent another infection (my son has some immune deficiencies). It made sense and we have seen much improvement over the last 4 months - though it was gradual. He has not complained of joint pain in several months - and joint pain was constant prior to the first IVIG. If you continue to see elevated complexes, I would suspect that there is an ongoing infection that has not been removed. The antibodies are complexing with something. I am assuming that your daughter has been worked up for lots of known infectious microbes. I truly believe that many of our children have infections from yet un-named microbes. I think that is why some of our children do well on certain antibiotics, even though they don't have elevated titers or any hint of microbes we know about. I also think that is why some people see relief with lyme doctors - it may not be lyme at all, but perhaps the antibiotics are helping to fight some microbe that we are not yet able to test for.

I would second that a PANDAS doc is important if you can swing it. Ours works in collaboration with our pediatrician. The pediatrician is much more willing to order ABX when he hears that the PANDAS doc is in agreement. I did not think we could afford the time or money for a PANDAS doc but once we got desperate enough we found a way to swing it and it was the best decision for us.

If you click on the link it should work... the forum format shortens it so you really cannot cut and paste it from my post.

THis is the abstract from the study that showed that prophylactic penicillin AND prophylactic azith were both effective in reducing the frequency of PANDAS exacerbations. http://www.biologicalpsychiatryjournal.com/article/S0006-3223(04)01377-0/abstract