kimballot

Wilma I am SO, SO happy for you!! Please check with the docs if you are seeing regression. They may need to rotate antibiotics. Best wishes!!

I think encephalitis is a better choice of words and is more specific than endephalopathy. Encephalopathy just means that something is wrong in the brain. Cerebral palsy is an encephalopathy. A brain tumor is an encephalopathy. Encephalitis (inflammation in the brain) is a more specific form of an encephalopathy. Regarding the timing of the code - can UHC give you information about what was covered back in the Spring?

I can't find contact information for his mom. That is a great idea keeping track of it all. It is too bizarre and maybe it would help the doctors get a clearer picture of what is going on. Thanks I am sending you a PM

My son and daughter both get very emotional while loading on prednisone. My son gets very itchy too. I would call the doc that ordered the meds to check, but the pediatrician told me this is normal and, in our case, encouraged us to push through if we could. On the advice of the doctor, we gave ibuprofen and benadryl and it helped. Ask your referring doc for advice. In our case it lasted the first few days of loading and then the reactions decreased greatly... by the end my son was asking for a prednisone pill and was sad when they ended because they helped so much.

Satara - if you've not done so already, keep a chart of his behavior, his illnesses, and his meds. You can do a simple rating chart for behavior - pick a few that tend to be problemmatic (ex: sleeps alone at night; gets stuck on particular thought; Has tics; Goes to the bathroom frequently). Each night, rate it as something like 1= Normal (no problem) 1=problems only I would notice 3= problems we could live with 4= problems anyone would notice and we could not live with.... this will help you to make sense of things. The family in BC got treatment. http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20110809/bc_pandas_therapy_110809/20110809?hub=BritishColumbiaHome Contact his Mom for help.

Satara - I want to echo the others who have suggested consults with a PANDAS expert. Get your medical records and all of your kids medical records (from birth if possible) to have on hand. Once a child has PANDAS, ANY infection or inflammation can trigger an exacerbation - including: Strep throat, Upper Respiratory Infection (URI), Virus, influenza, walking pneumonia (mycoplasma), sinusitis, impetigo, lyme diseasen - even allergies. A real clue is if you see a pattern of behaviors improving with antibiotics. You said you all had a nasty cold/ pneumonia last fall - have you all been tested for mycoplasma? Did you do a short (10 day or so) course of antibiotics? Do any of you still have a dry cough that seems almost asthma-like? You could still have mycoplasma lurking in the family and the boys could be reacting to that. You are going to have to work hard and be strong to get a proper evaluation for your children. best wishes

Has your daughter been checked by an immunologist for immune deficiencies? Children with immune deficiencies may not mount ASOs because they do not make enough antibodies to show up on the test. I would assume that any PANDAS doc would have run an immune status panel with total IgG, IgA, IgM, and subtypes. If not, find an immunologist (who is knowledgable about PANDAS if you can get to one) and have a full immune workup.

I think there are a few things to consider with tonsillectomy. 1. You don't want to do it if it is not necessary. That is - a tonsillectomy should not be a knee-jerk reaction to PANDAS as it will not cure PANDAS. 2. You don't want to avoid a tonsillectomy if it is necessary. My son is one of many children on this forum who achieved long-term (several year) remission after removal of tonsils that were found to be quite full of hidden crypts and bacteria upon removal. 3. You should ask the doctor about "sterilizing" the tonsils by using strong antibiotics before, during, and after surgery. Some folks even do oral ABX before, IV ABX during, and oral ABX long-term after. I think this is why my son did so well with tonsillectomy while some others did not - he had several weeks of strong oral ABX before, during and after. 4. Tonsillectomy will NOT prevent strep throat (although it may decrease the frequency if the tonsils are harboring strep). 5. Tonsillectomy will NOT cure PANDAS/PITAND. Once a child has PANDAS/PITAND s/he can have an autoimmune response with ANY infection. So... those sinus infections and viral infections can still trigger symptoms... and any underlying lyme will still be there to stir things up. Overall- we are very happy that my son had the tonsilletomy. At that time, his tonsils were the source of his infection and he was having a major exacerbation. He spent the next few years recovering and was at about 95% recovered when he developed a sinus cyst and ongoing sinus infection that threw him into another major exacerbation and his immune system went haywire - we are trying to fix that now with IVIG. Best wishes on your decision -

I think yeast is such a horrible, hidden problem for our kids. My son was on ABX the first 7 years of life due to sinusitis and we never even thought about yeast or probiotics (we also did not know he had PANDAS at the time). That was a mistake. He ended up with fungal sinus infections because the fungus took over the lining of his sinuses. (not to mention the red, itchy bottom that we kept thinking was pinworms even though we never actually saw worms). At age 7 he had a tonsillectomy and was able to come off antibiotics, and we dealt with a yeast mess. He was on diflucan for a while and we had to do lots of yeast diet stuff. After that, I always insisted on diflucan with every course of antibiotics. He started on long-term antibiotics last year and we did diflucan until June, 2011 when we changed him to doxy and minocylcine and we were afraid the diflucan would be too much for his liver (though his enzymes seemed fine). Lately, he has been really craving carbs and has had some meltdowns -especially when he hasn't eaten in a while. Just last night I was starting to think about diflucan again and now I read your post. I am wondering if other folks could recommend tests for yeast overgrowth. I know there is some type of spit test folks do but I am wondering if there is some way to test stool or if there is a blood test. Thanks for posting this!

mrgu- Welcome to the forum. It sounds like you have been through quite a bit in the past few weeks. PANDAS/PITAND exacerbations are triggered by some type of infection or inflammation (it does not always have to be strep). These infections or inflammation allow antibodies to cross into the brain and interfere with the functioning of the basal ganglia of the brain. The first thing to try is antibiotics, but if/when these do not bring quick relief then you need to move on. I think I speak for many of us on this forum when I say that we needed to find a doctor who truly specialized in PANDAS before our children received proper treatment. The pinned threads at the top of the PANDAS forum contain information on doctors in various areas, or you could give an idea of the area in which you life (if you are comfortable doing that) and folks can send you a private message about their experiences with doctors in that area. It is important to get a good assessment of your child's immune system an check for strep (ASO and Dnase , mycoplasma, and lyme, and also get a good immune status panel including the 14 s. pneumonia titers, and IgG and IgA levels with sub classes. This assessment can help you know if you are fighting something other than strep- and what antibiotic might work best. There are other medications and supplements that can be tried beyond antibiotics, so don't give up! Poke around on this forum and you will learn a great deal. The people on this forum have been a lifeline for me! Best wishes -

Baylor- Take a deep breath and relax for a minute because you are in the right place. I am sorry you are going through this. I don't know if your son has PANDAS but you certainly have every reason to suspect he does and you have the right to have him thoroughly evaluated by someone who is knowledgable in the disorder. The pinned threads at the top of the forum can be a great help when you are beginning on the PANDAS journey- and this includes some information on doctors who have been helpful. We have several members in the Philadelphia area and hopefully they will either respond to this thread or send you a PM. When you receive a private message you will notice a number in the upper right corner near your username. You click on the arrow near your username to access your messages. We generally do not talk about doctors by name in the public part of the forum, but folks will PM you with personal information about different docs. The antibiotic your son was on that smelled bad could have been clindamycin (cleosin). It smells really horrid in the liquid form. Best wishes to you as you navigate this path. We are all in this together.

yes - it is confusing. I was able to get the full text article and it looks like kids with PANDAS had more frequent separation anxiety with their initial episode, but this did not turn into long-standing separation anxiety disorder.... but kids with OCD were more likely to have a separation anxiety disorder that evolved over time. Here is what the discussion said about this in the article: Symptoms of separation anxiety, inattention, mood swings, and oppositional defiant behavior were also significantly more common during their initial episode of neuropsychiatric illness in the children with PANDAS compared with children with non-PANDAS OCD. A significantly higher percentage of children in the non- PANDAS group (33%) met criteria for separation anxiety disorder compared with the PANDAS group (5%). However, significantly more children with PANDAS (74%) compared with non-PANDAS (39%) had separation anxiety as an associated symptom during their sentinel episode of neuropsychiatric illness. As PANDAS children had only a 5% rate of separation anxiety disorder, the finding that 74% showed separation anxiety during their initial episode of illness demonstrates a dramatic change in this symptom dimension during the onset of PANDAS. Separation anxiety and oppositional behaviors were described by Swedo et al. (1998) in their description of 50 children with PANDAS. Similarly, the sudden onset of severe, age-inappropriate separation anxiety was present in 42% (5 of 12) of PANDAS children in another study (Murphy and Pichichero 2002). Case studies also report sudden- onset separation anxiety, mood instability, and inattention in chil- dren with PANDAS (Perlmutter et al. 1998; Elia et al. 2005; Mabrouk and Eapen 2009).

Sending you a PM

If I were you I would wait until just before the next IVIG to do any testing. Also, you might want to see a lyme doctor in the interim. I took my son to an LLMD after his second IVIG because he had a bad exacerbation with the first IVIG and had a couple of indeterminate bands. The LLMD made some recommendations for changes in medication that helped my son to do better (for us -just taking him off singulair helped immensely, though it has nothing to do with lyme, but the lyme doctor was pediatrician and she recommended the change). Then the LLMD put my son on a 3-week antibiotic challenge to break up potential lyme cysts, and then we retested just before the next IVIG. It was a long process an my son's second round of testing had fewer indeterminate bands- so we are not thinking there is true lyme ther. BUT - what we did find was that my son did very well on the lyme antibiotics (doxycycline and flagyl). He had more energy and fewer meltdowns. We kept him on lyme antibiotics for the next 6 weeks (changed to minicyclne and tindamax). We just switched him back to augmentin and I am noticing some backsliding. I am planning to call the pediatrician tomorrow to change him back to the other antibiotics. I don't think my son has lyme, but I do think he has some type of infection that has not gone away. I think the medications the lyme doctor recommended are helping. As long as he has to be on antibiotics for PANDAS, he may as well be on ones that help him! All of these visits and tests are very expensive so you have to determine what you can afford. If you can swing it, though, I would recommend a visit with an LLMD.

Pandas 16 - If my son can have your attitude and determination as an adult, I will consider myself to have been rewarded as a parent. YOU are the outcome we all strive for. Someday - all children with PANDAS will have the opportunity to have early intervention and positive outcomes. It CAN happen. Thank you.

It is both true and sad that right now the kids with PANDAS who are getting treated are the kids with parents who are able to navigate the system financially, mentally, and physically to learn about treatments and get their child to the appropriate health care provider. Right now we do not have protocols for mainstream docs to follow - even if they DID identify PANDAS. We are all individual cases. It is great that we are researching IVIG and researching antibodies and glutamate and all the other things we are discovering. But at the same time, hunderds of children with PANDAS are being treated each day - mainly on a trial and error basis. We cannot move beyond this without gathering information about what we all are doing. We need a major medical center/ university/ government agency (perhaps?) to track our children's symptoms, exposures, and treatments to help to develop some basic protocols for PANDAS. We need the treating doctors to share information so that we can learn about evaluation and treatment and so that we can train the pediatricians and psychiatrists in the trenches.

What is the name of this product? Id like to share with our school for future use. Thanks! It is a "livescribe smart pen" They are available from a variety of stores, and there are different versions (older and newer versions, some with more or less storage, etc). The livescribe website is here http://www.livescribe.com/en-us/smartpen/ NOTE: I do NOT work for livescribe or have any financial interest in this... and my son has not used this yet - I just think it could help lots of our older kids. (just want to be sure we are clear on that)

I have been posting monthly updates on my ds14 who had his first HD IVIG 6 months ago 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=14308&st=0&p=117115&fromsearch=1entry1). He has been receiving HDIVIG about every 8 weeks, and has now had 3 total - fourth one due in a couple of weeks. The big news here is that it looks like he is going to make it into high school, after failing/ missing the second half of eighth grade following the post IVIG exacerbation. He went to summer school - and made it in most days - and did well enough to move on. We have lots of supports in place in the high school and have reduced his load considerably compared to what I would have expected him to take... but he is still taking enough credits to graduate on time if he is able to get to school every day and do his work. We started working with a CBT/ERP therapist as he still has problems with an anxiety/avoidance cycle that makes it difficult for him to complete homework and actually get up and go to school everyday if things are not "just so". The therapist is seeing these more as "habits" now - as opposed to true OCD. This makes sense as I also do not get a feeling that he is having the compulsions I've seen during exacerbations. I really wonder if a child has a lengthy history of OCD and then has something like IVIG take away the OCD.... how do we train the person to think and act in a non-OCD manner?... this is my challenge for the next few months. Anyway - thank you to everyone who has followed our story and offered encouragement. It is so nice to no longer be dealing with the depression and anger we had initially after IVIG... and DS has not had any illness or sinus infection since the IVIG 6 months ago, which is truly amazing for us! If you are wondering - in our case - yes I would do IVIG over again, but I wish we could have done it before puberty hit so he would have time to recover before high school. I do not plan to post every month anymore. Hopefully I will post at the end of the school year that all is well and ds is moving on to his sophomore year of high school. We will see!!

Eljo - I am trying to understand what happened here. Have you seen the PANDAS doc in person yet? Also, if the PANDAS doc is recommending an ENT appointment first, perhaps s/he is suspecting that an ENT issue underlying the exacerbation is likely and perhaps s/he is trying to save you time and money. I am trying to understand when the PANDAS doc asked for the lyme/coinfection test. Did you already do the lyme/coinfection test and you are waiting for the results? Did you already see the PANDAS Doc?

DeDee - I just want to make sure you have taken your son's mycoplasma into consideration. I believe you posted about it in another thread. I know my son really reacted when my daughter and I had mycoplasma. I know you cannot test your dd right now as she just had IVIG, but the PANDAS doc should be able to help you with treatment.

This is the first time I've seen this. It looks like a great study- really shows how our kids are unique! Thanks!

Bronx Mom - I just had my son's IEP meeting this week where the CSE committee spent a great deal of time talking about my son's potential. The chair said something to the effect of "Students who are straght As often are those who have learned to comply, not those who have learned to think or create. Your son will take a different road, no doubt, through high school, but it we are here to guide him and steer him in the right direction and we do not give up". Ok.. I will admit that this was a very optimistic group who was trying to keep me happy after a horrible exacerbation last year... but they really did believe it and, somehow,I was fortunate enough to have 6 educators of varying backgrounds sit around a table and tell me that while they are all learning about PANDAS, they are dedicated to doing the best for my son. This was one moment in his educational history. YES he has had horrible times and horrible teachers, YES he has been rejected by some of the kids, YES I have been marginalized by other parents to some extent... and YES the world is full of horrible, crummy, economic and political situations. You have every right to home school your children and to educate them in the best environment for them. I truly believe homeschooling is the best option for some of our kids. What worries me though (honestly) is the sort of despair I am hearing in your tone. I really think that all of us PANDAS parents are at risk for PTSD, depression, anxiety disorders, and a host of phyisical issues. The recent news of a mother of a child with PANDAS who committed murder-suicide scared the bejebers out of me. I made an appontment with a counselor for myself just to have an objective person listen to me and tell me if I am doing OK... and help me going when the times are rough. You might want to think about doing the same. I think we all could use some help as we navigate this uncharted territory.

Dee Dee - I am so very sorry to hear this. Looking over your post - I would think a few blips of behavior after CBT is to be expected - kids have short returns of behaviors after behavioral approaches, but it sounds like you go through those just fine. Do you have any idea if she is being exposed to something (germ-wise) in school? Have you been in touch with the school nurse to see if there is any strep, mycoplasma, or other infections going around? Even with IVIG she could be reacting. Just throwing this out there in hopes that you find the underlying cause of this regression.

Yes - you have to "train" it to your voice pattern- but if I recall correctly, you could wipe that out and then re-train it for another voice. So - you should be able to train it for your voice and get used to using it... then start over and train it for your child's voice. You just cannot switch back from one person to another on a daily basis. It is probably best to check before purchasing it, though, as my version may be outdated now.