kimballot

The whole concept of tonsils and the immune system is so complex. My son was addicted to augmentin for 7 years and then he reached a point where NOTHING helped his PANDAS symptoms and he went into total exorcist syndrome. When the pediatrician suggested putting my nearly 7 year old son on prozac I knew I needed to do something desperate. We saw a non traditional allergy doc who thought this may be due to yeast (yes - that was probably some of it)... so we stopped all antibiotics and in a few days his tonsils (which were always enlarged and vascular and gross looking) were white. We put him back on augmentin and then had the tonsils removed a couple weeks later - and after that he came off antibiotics all together (in retrospect, I don't know if I would take him off abx again). So - in his case, I think the tonsils WERE harboring bacteria (don't know if it was strep - we did not test when they were white), and I think the addiction to augmentin just kept the bacteria at a low enough level that he had a low level of autantibodies acting on his brain and he was able to function. HOWEVER - it is interesting because his IgG and IgA levels were fine from birth through age 7. Not a problem - and we did measure regularly to try to figure out why he was sick all the time. About 3 years after his tonsils came out, though, a doctor decided to check immune levels again and he had dropped below protective levels in several of the pneumococcal titers. The doctor did not tell me this at the time - figuring his overall IgG was OK. (obviously, before I became an educated PANDAS MOM with binders and copies of all tests). That was in 2007. By 2010 he was very sick with a sinus cyst and chronic sinusitis, and was below protective levels in 10/14 IgG pneumococcal titers. By August, 2010 his IgA was below protective levels. Was he always immune deficient and that was why he had the bacteria in his tonsils? Did allergies and postnasal drip cause crypts in his tonsils allowing bacteria to fester? Did his titers drop because he was fighting infection for so long? Did they drop because he no longer had his tonsils? Did they drop because he was genetically pre determined to have immune deficiency and he just reached a point where it was showing up? I don't have answers to this, but I am so grateful that SOMEONE is interested in looking at it.

Mama- When I first read your post I assumed you had a history of unusual thought patterns or quirky behaviors when you were sick.... but I don't see you mentioning symptoms during your own illnesses. If I am reading your post correctly, I think it has more to do with plain old human limits of patience and sensory overload than it has to do with PANDAS. I am saying this because what you describe could often be ME at the end of a long day - or my DH much earlier in the day (I am flexible and patient to a fault and he sets boundaries and is patience-challenged). DS 14 has a new "obsession" with "screamo" types of teenage music. I HATE it. He cannot get it out of his head, even though I have removed it from all ipods. He walks around the house singing this one song sounding like something from the exorcist. No inappropriate words — just that deep hoarse voice. I try to ignore it.... I give dirty looks... I say "please don't do that - it will hurt your throat".... I say "I SAID DON'T do that - it is annoying".... Finally - at 11 pm last night I screamed STOP!!! It was not a mother of the year moment. He jumped - then said "ok, ok...calm down". I had flashbacks to when he was younger and I was so entwined in his bedtime ritual and I felt like a slave to it (though I did not know what it was at the time). It was exhausting. I think we all have sensory limits and stress limits. We all need to take care of ourselves and try to meet our own sensory needs. When ds gets to me I generally try deep pressure, warm blankets, a bath when I can get a few minutes, etc.. and try to find time to exercise a bit each day (easier said than done for me). I also dip into the valerian root for my self on some evenings to calm down and take the edge off (its either that or alcohol and I figure the valerian root has to be better!). If I am way off base I am sorry - let me know if you think you see an increase in symptoms with your own illnesses. Hang in there...

Kari - thank you for sharing your story and all that information! It sounds like you and others have been quite busy working for all of us. Thank you! It is wonderful that you are giving back to the PANDAS community. I do hope that, eventually, all of the PANDAS groups can find a way to collaborate to avoid duplication of effort.There is much work to be done and together we can make it happen. I cannot believe the dedication of the parents on this forum! I look forward to hearing more about your organization - good luck with the website launch!

I agree that controlling inflammation is very important for our kids. Do you feel that the therapy is mainly working by controlling inflammation.

PANDAS 16 I agree with you that we need to coexist with our microbes. I think that was what Thomas Insel was trying to say when he made the directors post last year after the PANDAS meeting, and he said that 90% of our DNA is microbial, not human (http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml). I think the next decade or two will shed light on a whole host of microbes we are all living with. The way I see it, the problem is when either A) The immune system cannot keep the microbes in check (- that is when antibiotics and intifungals and antivirals help), B ) The immune system confuses the self with non-self and goes into autoimmune mode (eg: PANDAS). C) The microbes are stealth and hide from the immune system - mounting a major attack that can happen later in life. I don't mean to be melodramatic, but that is my fear with lyme and coinfections- that they could pass into the brain, where it is much harder to reach them with antibiotics. D) Our consistent use of antibiotics knocks out so many microbes that our immune systems become dependent on this and become weaker. I DO NOT have any evidence of this - this is my own thought/ fear of what happened to my son as he had chronic sinusitis (probably due to allergy and anatomy) and was dependent on antibiotics for many years. When he finally came off antibiotics, we saw a drop in his immune function (IgG and IgA gradually dropped)... I don't know if these are related, but I suspect we will someday learn they are. I am thrilled for you that helminthic therapy is working for you. It makes sense to me that we need to have a well-funcitoning gut if we are going to do a good job resolving autoimmune disorders. I am glad that this is helping you. Please keep posting so we can continue to learn!

Mama - It is great that you have at least SOME information from the folks doing the study and hopefully you will receive the list of antibiotic recommendations soon. Take that to your pediatrician when you ask for ABX. Also, if you made an appointment with a doctor who has seen other kids with PANDAS, take the ABX recommendations from the study with you. While your child may meet all the listed criteria for the IVIG study, the researchers would be negligent if they gave IVIG to a child who really did not need it at the present time. I think that is what they are saying. Please call them again for clarification and to get that antibiotic list.

Thanks for the link! Nice article! They talk about "thingpandas.com".... I think they mean "thinkpandas.com"... but when I go there it asks me for a password. Anyone know how to get a password or if this is something that would even benefit me? PM me if you need to.

You could try Dr. Leckman's clinic at Yale in Connecticut. He or one of his fellows should be able to help. Also, Dr. Michael Janike at Mass General

Ok- well that is good information for the next doctor and also helps to justify antibiotics. I am not sure what the requirements are in your area, but I know my ENT automatically sent my kids tonsils in for testing. See if you can get a copy of the pathology report on your son's tonsils. See if there was strep isolated. It could help to justify a longer course of antibiotics for you. Some kids have had trouble after tonsillectomy - especially if there were no antibiotics beforehand.

Mama - did the doctor put your son on antibiotics before the surgery? I am just curious as some docs are now doing heavy antibiotics before surgery and / or IV antibiotics during surgery for some PANDAS kids to "sterilize" the tonsils and reduce the risk of disrupting the strep.

I agree with Vickie to try ENT for longer prescriptions... but in the end I think you need a PANDAS specialist.

Thank you so much for sharing this. I know how well you research treatments and how thorough you are. It is great that you are finding relief and I hope it is lasting.

Christina - I am not sure how old your son is. I can tell you that in our case ds14 had his first IVIG Feb. 2011. He had chronic severe, unrelenting sinusitis prior to that and had PANDAS exacerbations with each sinus flare up. He is also mildly immune deficient. Prior to IVIG we had him drink lots of water and followed our doctors protocol of prednisone x 2 days, and benadryl and ibuprofen before infusion. After IVIG we had no nausea or headaches. We continued the water, ibuprofen and benadryl for several days after. He did have a nasty nosebleed - probably from so much ibuprofen coupled with his sinus issues. The GOOD: Since IVIG ds has not had any sinusitis or really any other illnesses except 2 instances of colds that lasted a couple of days. He has his old energy back, his muscle tone seems "normal" again (was low for a while), his coordination is back, is enjoying his previous activities, and has lost some weight and trimmed down (he needed this). THE BAD: Two weeks after IVIG#1 ds had a horrible exacerbation of neuropsych symptoms necessitating a hospital admission and then a slow recovery to baseline. He is near baseline now (5 months later) and is taking summer classes to try to catch up on the work he missed. He has had 2 more IVIG infusions with no ill-effects. He still has some long-standing rituals that get in the way of him getting to school on time in the morning and completing homework, and we are pursuing CBT for those. (However - at least we can address them now - during exacerbation we could not even address these). THE UGLY: I get angry when I think back to the doctors who insisted my son did not have PANDAS for 6 years or told me that there is no difference in treatment whether it is PANDAS or not. In retrospect, I wish we could have done IVIG 6 years ago. I believe the post-infusion exacerbation would be less and I know it would have been easier to deal with if he were smaller than me and if we were not also dealing with hormones and puberty! I feel like I am in a race against time to get him to function so he can be on track get through high school with decent grades and decent study habits. In retrospect - I would also recommend having some knowledge of the mental health system in your area (if your child is a teenager), so you are prepared if you suddenly have an angry or depressed young man living in your home! I don't know if that helps you with your decision or not. It is a very personal decision and I think, in the end, you need to look at your child's functional level to decide if you are ready for this.

Gracias - I cleaned some out. I think you can post a comment when the message box is full to let the person know it is time to do some cleaning!

Thanks, Twin Cities - Here's the link http://www.wthr.com/video?clipId=6084010&autostart=true Many thanks to the family that did this - if they are on the forum. Excellent news piece!

Cyndilynn- It is certainly possible that your son has lyme or a co infection. It is also possible that this is PANDAS (PITAND) from some other infection. PITAND is Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder. Many kids with PANDAS go on to have exacerbations with any infection - not just strep. This can include lyme, mycoplasma, and sinusitis. What is your son's immune deficiency and how long has he had it? How long has he been receiving IVIG and what is the dosage? Beth Maloney is great and I know Sammy did well with augmentin, but I would argue that Azith certainly can treat PANDAS (actually PITAND)- in fact, azith is better for intracellular infections such as mycoplasma and some lyme coinfections. Azith is also better for some strep that is able to go intracellular. I think the changes you saw may be more from the lack of azith than a herx from the IM penicillin. The problems with constipation may also be due to gut issues from the azith. Are you using probiotics as well? Have you considered seeing a lyme doctor? They seem to know quite a bit about infections in general and may be able to make some suggestions about antibiotics that could help your son whether he has lyme or some other type of infection.

Hi Cyndilynn - My son is mildly deficient in overall IgG, but he was below protective levels in 10/14 pneumococcal titers. Also, over the past year he started dropping in IgA and is now below the range in IgA as well. He has chronic sinusitis. IgA is usually the first line of defense for the sinus mucosa and then IgG usually follows with antibody protection. Since he is low on both, we decided to do IVIG which provides IgG (not IgA) antibodies, in hopes that the IgG would help to fend off sinus infections. I am not sure if that is the exact mechanism, but he has definitely had relief from sinusitis that we can only attribute to the IVIG. As for the dosage and schedule - we do 1.5 g/kg, as many kids with PANDAS receive. Typically, you would use lower dose for kids who are immune deficient, but there is at least one article in the literature that postulates that higher dose IVIG also has anti inflammatory properties, while low dose does not. Since inflammation is thought to lead to the breach in the blood-brain barrier that kids with PANDAS experience, we wanted to do higher dose. (note: some kids on this forum get low dose and do just fine, but I think most start with higher dose). As for the frequency - 8 weeks is sort of a standard that Dr. B set - though I don't think there are any research studies behind it. He told me he likes to start at 8 weeks and see how it goes. Some kids need it more often, and if we saw a decline along the way we could have it more frequently. I believe 3-weeks is around the half-life for antibodies (at 3 weeks half of the antibodies you received are still alive), and 4-weeks is sort of standard frequency for low dose IVIG for immune deficiency. Since our son receives twice the normal dosage of antibodies to start with to reduce inflammation, he should have at least the typical level of protection for twice the length of time of low dose - which would be 8 weeks. Does that make sense? Anyway - I think scheduling is very individualized and is something that each doctor seems to have his/her own protocol for. It is just one more thing we really need to have studied, but so far the only IVIG studies have been of one-time IVIG for kids who do not have any immune deficiencies. I hope that was not too much info!

We saw Dr. Rempfer. He was very good.

I agree! It is funny how many people on the forum take on various roles. Thanks, Vickie - for all you do!!

my son was leary and had lots of anxiety (in the form of defiance) the morning we were leaving. Refused to go to summer school that day, refused to pick up work for the trip... started to threaten to not go on the plane. At one point - about two hours before we needed to leave for the airport - we were all packed and he was calm and I said "you know what - since we are all ready I want to leave and make a couple of stops on the way. One of them will be dairy queen". He hopped in the car and got his ice cream and I came up with lame places to stop and then got to the airport early. It worked. I headed the anxiety off before it hit him! He was also very anxious the morning of the appointment - wouldn't get out of bed, really slow getting ready. We got to the appointment 10 minutes late and he had not had anything to eat. I just tried to go with the flow and grabbed him something from across the street (warning: no vending machines in that building). It all worked out in the end.

I think the stimulant vs. non stimulant is really individualized and they noted strengths and limitations of each. They said good old ritilin in very small doses would be OK for us (though I don't know if they would recommend it if my son had heavy-duty tics)... and the advantage is that you can see the effects quickly and the effects wear off relatively quickly if you don't like it. They said strattera would be good if the problems seem to be more motivational than on-task attention in class. They said SSRIs could be used for anxiety but, again, they really cautioned about very low doses and very good monitoring for negative effects. Dr. M said pharmacists call her sometimes to double-check the dosages because they are so low and they laugh at her!

We do IVIG every 8 weeks with Dr. B. That is the protocol he usually starts with for kids with immune deficiencies like my son's. So far it has been good for us. My son has not had any sinus infections since we began IVIG 5 months ago and that is really good for him. We are hoping to go a year without a sinus infection to really give his sinuses, his immune system, and his brain a break! Dr. M said she would not change the schedule for the IVIG. I don't know if it was her first choice for schedules, but she did not have any problems with it. So it was reaffirming for us.

I don't really know the rationale behind the fish oil. I was just using a basic store-brand 1,000 mg fish oil. I believe she said something about absorption, but that could be something I read afterward as I was googling fish oil. Yes - we need to talk with Storch before deciding what to do about CBT. The Fellow will share my info with Storch and I have Storch's card. I have a feeling I will probably call him before he calls me- because that's just how I am!

Ok - I just tried to add an edit to this post and I removed my entire original post about my visit with Dr. M .... EGADS!! I will try to recreate it here.... What I forgot to say last time was that the BEST part of the visit was that I got to meet Dee Dee from the forum in the waiting room! Her kids are beautiful and it was so great to talk to her in person! wish it could have been longer!! Now - regarding my visit with Dr. M - It was a very thorough visit. The receptionist told me Dr. M likes lots of data, and I sure sent it!! I faxed lots of medical records and a summary of ds14 history over ahead of time. Then filled out the required paperwork that they sent ahead of time. I have to say that the questions they asked were really great - very much directed at PANDAS and clearly fit our kids. DS even got to participate in a couple of PANDAS research studies having to do with immune markers while we were there. When we got to the appointment we first met with a psychiatry Fellow and with another "trainee" (medical student perhaps?). The Fellow was excellent and he clearly had read and digested the mounds of paperwork we had sent. He asked pointed questions that really helped him to understand the picture until he was able to repeat it back to me. Then he met with Dr. M for a bit to discuss the case and review all the papers. Finally, the entire team met with us to make recommendations. They basically said that they were in agreement that DS has an immune-triggered neuropsychiatric disorder. They also said that they were in agreement with our treatments to date, with IVIG every 8 weeks (ds has immune deficiencies), and continued antibiotics. Prior to this I was thinking we would wean ds off antibiotics in the next year or so, but Dr. M said "no" - she really recommended long-term high dose antibiotics in our case. I told her that I wanted to continue IVIG for a year to try to give the sinuses, immune system and brain a break and she agreed and then said that antibiotics should continue even after IVIG ends. She reviewed all of our supplements and agreed with them. She stresses multivitamin, D3, probiotics, and fish oil. She is particular about fish oil and recommends coromega - orange fluff in packet (I purchased a lemon-lime version online from walgreens), omegabrite, Nordic Naturals, or Omega Mood. She spent some time talking about possible meds for attention and anxiety. She recommended extremely low doses of meds, but said they should be OK given ds' history. We will discuss the medication options with the local docs. They made suggestions for school and home and recommended intensive CBT with ERP. We do not have a local therapist to do this, and I asked to have DS do the intensive CBT program while we were there as we had time and a spot at the Ronald McDonald house. They were not able to accommodate this as Dr. Storch was out of town, so they could not begin that quickly. Overall, I was very happy with the appointment, though I was disappointed about the CBT. I had contacted them originally to set up intensive CBT and was told Dr. M had to evaluate first. I can understand that, and I am sure they have many details to worry about, but I would have liked to have done the CBT at this visit. Now I do not know when ds will be able to go again as he will be starting school soon.