kimballot

Thank you to everyone who organized and attended the meeting. I wish I could have been there - I was thinking about you all day! Looking forward to reading anything that may be posted on the webpage. And yes.. Vickie.. once again your video tugged at my heart!

My ds14 is similar to your son in that he has IgG deficiencies to 10/14 s. pneumoniae serotypes. He has also developed IgA deficiency in the last year. We are doing HD IVIG (1.5g) every 8 weeks with Dr. B. It works well. He had a very bad exacerbation with his first IVIG about 8 months ago - I think this was because he was 13 years old and had PANDAS most of his life due to chronic, unrelenting sinusitis. Since the first IVIG, he has shown improvement with each IVIG. He has not had a single sinus infection since the first IVIG, so I know it is doing something to keep him healthy. Now that we are no longer dealing with tics and constant OCD, we are able to do cognitive behavioral therapy and nutritional interventions to help him develop good behaviors and keep him healthy. If I had anything to do over I would have started IVIG sooner. I do not know how long he will be receiving IVIG. I am going to do it for at least 1 year and then the we will decide if we can start cutting back. We are very fortunate because insurance has covered this. I had to change insurance plans - (which meant waiting 8 months for open enrollment) but it was worth it. We could not afford this otherwise.

I believe 1.5 or 2.0 grams per kilo are generally used for PANDAS, but I think most (if not everyone) infuses over 2 days at this rate. My son gets 1.5 grams per kilo and he is an adult-sized person. It takes about 6 hours per day - any faster and he gets a migraine.

We do not go to Dr. K so I can't say first-hand what he orders, but I understand it is 1.5-2g per kilogram. Some of the other PANDAS docs use the same rate. I believe the current IVIG study is 2 grams of IVIG per kilogram of the child's weight.

You can try contacting Dr. Michael Jenike at http://www.mclean.harvard.edu/about/bios/detail.php?username=mjenike He wrote this article http://www.ocfoundation.org/default.aspx?id=2279&terms=pandas , is very compassionate, and may know of someone who can see you - even if he cannot.

Sounds to me like the only "failure" was a LACK of antibiotics becuse that was when she was reinfected! I agree with others - high dose antibiotics for a while to try to get her back to remission. Then you may want to ask about prophyactic antibiotics when she is doing better to keep her that way. I think most kids on the forum are on low-dose antibiotics between exacerbations to try to reduce/prevent exacerbations.

Please keep us posted as to how this works for you. Dr. M put my ds14 on ritalin - only 2.5 mg 3x per day. I believe he was on a stronger dose when he was 4 and we had him on it for a bit! No tics, no anxiety, no side effects and he does say it helps in class. He notices when he forgets to take it. I keep wondering, though, if we could be doing more as homework and executive function (ex: organization ) are a major problem still. I am considering increasing dose or changing meds... maybe in a couple of months if he is still medically stable. Hate to change meds and then have him get sick in the winter - then we won't know what caused what!

We had severe worsening of symptoms that slowly resolved. If you do not see improvement, send me a PM and I can share our experiences. Hopefully yours is a mild-moderate "turning back of pages". Our doctor hypothesized this is due to the "good" antibodies complexing with the "auto antibodies" in the brain. These complexes cannot be removed quickly by the body, so they deposit in tissue - including the brain, and we see an increase of symptoms until they are carried away. I don't know if this is exactly what happened (it was probably one of the pieces).... but this picture did help me cope.

LIKE Thanks for sharing!

Rogers Memorial does have a good reputation and I considered it for my son last summer. I wish I would have known about it when my son was very sick last Spring. When I called I was told that most stays are (I believe) about 4-6 weeks and also that the child had to attend voluntarily. I was also told there was a 2 month wait at that time. My son improved and I no longer considered it. If you do end up using this facility, I would very much appreciate it if you could ether post about your experience or send me a pm. I would like to know more about it in case we ever need it in the future.

He will likely sit down and talk with you about your son's history - including infections, lab work, allergies and such. If your's son's history is legthy, you may want to write it down for yourself so you don't forget anything. If you can bring copies of previous labwork or allergy results it would be helpful. He will probably examine your son and order more blood work to look for infections and to evaluate the immune system. Good luck!

This is the "helminthic" therapy that PANDAS 16 and others have used. I believe it is quite pricey, but there may be some clinical trials going on now for which some children may qualify. If you search "whipworm" in this forum you will get some threads that talk about it.

Welcome to the forum. It sounds like you have been traveling a long road to get here. I am wondering if you have a PANDAS doctor that you are working with at all. You mention that you have to stay in NY State. I've heard good things about Dr. Eric Hollander, though I do not know if he provides IVIG. It sounds like you are pretty set on IVIG and I am going to assume that you have already tried other methods or you know that your son has immune deficiency. Dr. Hollander's address is: PANDAS Center 901 Fifth Avenue New York, NY 10024 212-873-4051 ericholl@optonline.net Academic Affiliation: Albert Einstein College of Medicine and Montefiore Medical Center

Dr. B is Dr. Bouboulis in Connecticut and he is an immunologist. He takes many insurance plans but you would have to see if you have coverage. Someone just posted about another immunologist in California (found this from Norcalmom on this thread http://www.latitudes.org/forums/index.php?showtopic=15137)... It said - Dr. Sean McGhee - pedieatric immunologist. You will need a referral to see him, from your pediatrician or from another doctor. Make appointment through Stanford (Lucielle Packard Children's Hospital). I'd try him first. he can do testing and evaluate. I don't know if he perscribes antibiotics or not. My son is on them, but we get those from another doc. Dr McGhee did IVIG for our son last year. You will want to make sure your insurance will cover it - Stanford must be most expensive place ot get IVIG if you don't have insurance I think the other two PANDAS docs you have already consulted with are excellent PANDAS docs - and normally I do not recommend a specific doc, but it really sounds like your son could benefit from an immunologist who understands PANDAS. I also agree with LLM - re: supporting the immune system - first get your infections under control and then continue to learn how to support your child's health.

I agree with dcMom's advice - but I want to add in to be sure to give your child probiotics (acidophilus/ bifidus combination and saccharomyces boulardii) every day - at least 2 hours after antibiotics - to keep the gut in balance as far as yeast/ bacteria goes. Also, consider using ibuprofen if your child is able to take it - when syptoms spike. It is antiinflammatory and can help to get through tough times. Don't use it all the time or for extended times, though, as it can be problemmatic for the liver if overused.

My son is 14 and has had PANDAS symptoms since toddlerhood. Like your son, he lived on antibiotics - usually for sinusits - for his first 7 years of life. In our case, he was able to come off antibiotics and had reduction of PANDAS symptoms at age 7 after tonsillectomy. PANDAS symptoms returned with subsequent infections and, most recently, with sinus cyst and then again following his first IVIG. He gets IVIG every 8 weeks now, is on a combination of antibiotics used for kids with lyme, and he is doing well and has not had a sinus infection in 8 months. I don't know where you live or what your finances and insurance are like, but in your case I would recommend Dr. B. Someone did that for me and it made all the difference because he is an immunologist and really understands kids with chronic infection, allergies, and sinusitis. Your son is young and you have that on your side. His PANDAS will not be cured, but you can manage it. Please PM me if I can help you in any way.

So happy to hear you are moving forward. Here's hoping for health in the winter months — for your family and all of our families! Best Wishes!

Sorry - I've been away from the forum all day and could not respond sooner. Pandas 16 -as always - I so appreciate your thoughts and concerns. I am sure that Peglem has spent many hours researching and trying to understand her daughter's condition - as we all have- and I think she was clear that her idea was just that - her thoughts at this time. I spoke of the possibility of some long-term changes - not due to an autoimmune attack like we see in rhematic fever - but due to inflammation in the basal ganglia possibly pinching off some small blood vessels and resulting in a loss of some neurons. My son will soon have an MRI and I started looking into some of the literature on this. I recently read an old PANDAS article by JAY N. GIEDD M.D. , , JUDITH L. RAPOPORT M.D., HENRIETTA L. LEONARD M.D., DANIEL RICHTER B.S., SUSAN E. SWEDO M.D., , entitled: Case Study: Acute Basal Ganglia Enlargement and Obsessive-Compulsive Symptoms in an Adolescent Boy found in Journal of the American Academy of Child & Adolescent Psychiatry; Volume 35, Issue 7, July 1996, Pages 913-915 You may be familiar with this one as you were likely receiving PANDAS treatment right around this time. It is only a single case study, but it is interesting because they looked at volumetric changes of the basal ganglia before, during, and after plasmapheresis in this boy who was in exacerbation. The basal ganglia clearly was inflamed at the beginning, but then had a dramatic decrease in volume immediately after plasmapherisis, but from what I am reading - I don't think it shrunk back down to what would be considered "average" for a child that age - even after 6 months - indicating some long-term changes. Also, the authors speculated that inflammation could reduce bloodflow and result in a loss of volume of some brain structures (this is just their educated opinion here - not fact)... as noted below: The increased size of basal ganglia structures was most pronounced early in the course of illness when the patient had a throat culture that was positive for GABHS. Less dramatic changes were observed during subsequent exacerbations, which occurred in the con- text of negative throat cultures. It is hypothesized that the early volumetric changes might represent inflamma- tory changes and either that later exacerbations were not GABHS-related or that different neurophysiological processes were involved in later exacerbations. Since GABHS status was not documented at the onset of the OCD it is not clear whether the autoimmune mechanisms are related solely to exacerbation of the illness or to the original etiopathogenesis of the disease. Another consideration in interpreting these findings is the vulnerability of the basal ganglia to vascular effects. Blood supply is provided only by end arteries (rami striati) o f the anterior and medial cerebral arteries, with no reserve provided by collateral circulation. Edema from the inflammatory reaction of the cross- reacting antibodies might cause an initial increase in the size of the structure, with prolonged edema leading to compression of the rami striati and eventual necrosis. Thus, the longer-term effect of prolonged or repeated episodes of inflammation may actually be a decrease in structure size. I know this is only one case but I found it interesting. I am hoping that Dr. Chugani will publish his results soon - does anyone know if he has anything published yet? We have so much to learn. Regarding the article I just cited - I could not find the full text on line, but I was able to obtain a PDF of it. If anyone wants it - just PM your email address and I will send it.

My opinion is that the autoimmune "attack" is different. In RF (and many other autoimmune diseases) antibodies directly attack and destroy tissue. In PANDAS, the antibodies interact w/ receptors, disrupting function, which can have an effect on learning and the development of brain "pathways". I think my child has permanent problems due to untreated PANDAS during critical periods of development, so some pathways that would have developed, did not. There is no detectable damage to her actual brain tissue, just a lack of neural connections. Yes, Peg - I think you are correct about critical periods. We have so much to learn.

I don't think the autoimmune process itself leads to specific brain damage (as it does with the heart), but I do think there are 2 other processes that may result in long-term changes (notice I did not say damage) 1. the brain has plasticity - meaning that it is able to change function based on experience. If a child experiences OCD compulsions or other unusual thought patterns, it may be difficult to "undo" this process - even after the antibodies have stopped making extra cam Kinase. Difficult does not mean impossible. It means that you would need therapy to "undo" the thinking. 2. The inflammation in the basal ganglia (or other brain structures) could (potentially), if left long enough, put pressure on some of the small blood vessels in the brain, which might cut off oxygen to some cells and result in some cells dying. NOw the good news about this is that the brain does have plasticity, so there is the potential to have other cells take over - but it will take time and a commitment to therapy.

Cab 40 - I feel so bad reading your post. I was where you are a year ago - a local HMO for insurance with no out of network benefits. I had to wait a while but I was fortunate to be able to switch my insurance to one that contracts with a national carrier and that has made all the difference for us. I am sending you a PM with a couple of ideas. There has to be a way to get your child the help he needs...

I don't think "new baseline" and "chronic PANDAS" are the same thing. My son had what I would call "chronic PANDAS" for 2 years straight while he had a hidden infection. During that time he had lots of OCD, executive function problems, brain fog,changes in muscle tone and coordination, joint pain, and urinary frequency, with occasional tics. We found the infection- had surgery to clear it- and slowly (over the course of about 3 months) he showed improvement until we got to what I would call a "new baseline". The "new baseline" consisted of some executive function problems with organization, keeping track of assignments, and deteriorated handwriting. There was no more OCD, no urinary frequency, no joint pain, no brain fog, and no tics. Just frustrating organization and handwriting problems that we addressed with accommodations and therapy to work on it. IMHO, "chronic Pandas" can also refer to the ongoing autoimmune response that can occur even after the infection is gone. In my son's case, he had a prednisone taper shortly before the surgery, so that may have helped to alleviate the autoimmune response. I am also seeing posts on here about not treating kids who have had PANDAS too long. My son had 13 years of PANDAS attacking his brain before we started on the right path. It has been a difficult and complicated journey (much more than what I just posted above) - one that I would not wish on anyone... but he is happy and healthy now. He has no tics, few rituals, and functions in school with the help of some very wonderful teachers to point him in the right direction. He has friends, goes to the skatepark, and is trying to decide what he wants to be when he finishes High School. IVIG has kept him infection -free and as long as this lasts, I think he has a shot at recovering brain function. I do believe that untreated PANDAS can cause long-term changes in the brain. I also believe that education and therapy can allow other parts of the brain to take over and our kids can regain function - even after a "new baseline" if we can stop the autoimmune process and keep them healthy. JMHO.

It is good that you are having an immunologist read it... but recognize that our kids may have immune deficiencies that seem "small" by the numbers, but in reality have a HUGE impact on their function. An immunologist who does not understand PANDAS may not recognize this. Do you have a PANDAS doctor that you work with? Has your child had repeated sinus infections or other respiratory infections? Also - I don't hear a lot on here about low IgM and I will be interested to hear what you learn about that. My son had low IgG and later low IgA.

TPotter - You ROCK! Thanks!

PandasMcNuggets - So sorry you are going through this. I remember when you first came on the forum and you were very determined to get this fixed for your daughter. Clearly, you are leaving no stone unturned and that is what you have to do. I also don't know if your daughter has PANDAS or not, but I could not disagree more with the notion that "the cause doesn't matter - we treat it the same". I was told this for 6 years and I ignored my son's symptoms for the last 2 years straight - only to find he had a cyst eroding his sinus bone and resting on his eye muscle. His only symptoms were PANDAS symptoms - not sinus symptoms. It took a PANDAS doc to look for the cause. I learned that we need to 1. Find and eradicate infection to whatever extent possible 2. Stop any autoimmune responses 3. Support the immune system to prevent further infection 4. Use CBT/ERP, parent training, special education and therapy to manage symptoms 5. Use psychiatric medications to alleviate long-term symptoms. I truly believe that is the order in which we have to attack. I did have a question about one part of your post... when you say: What strep numbers were below zero? Was it ASO / DNASE B or do you man strep pneumoniae? I a just curious because s. pneumonaie would indicate an immune deficiency if low. Keep up the fight and please let us know more about the NAC. My son just saw a new neuropsychiatrist who has had a few kids with PANDAS but not many. He is open to learning more and is doing some additional testing. If I learn anything new I will be sure to post.