kimballot

Karen - I listened to you. I heard. You are in my prayers. I'd like to tell you not to worry and it doesn't matter, but I don't think that will help. I've learned to say as little as possible to as few people as possible. I don't know if that is right, but that is how I deal with it. I have a few teachers and social workers we've met along the way whom I can trust and who rejoice in remissions with me. I have a little story that you may find interesting. I was just cleaning out a bedroom and found a notebook from when my son was in summer camp at 7 years old. It was a little communication notebook between myself and the counselors. It is interesting, because the first few notes are all written very nicely, with smiley faces and exclamation marks from the counselors. Then we have a day that says "We made a stop at a water fountain for a drink and he refused to leave for over 10 minutes". The next day says he had a meltdown at the end of the day. The next day he was not listening... It looks like I had him home for 2 weeks and then he went back to camp... UGH! I have a note from me that his tooth was loose and ready to fall out... Then 2 days of detailed notes from the counselors starting on July 28, about all the bad behavior all day long, refusing to throw his garbage, spraying kids in the face at swim time, running away, etc. Then a note from me saying it may be a sinus infection I called the doctor. Then the last note from the camp on July 30 painfully detailing every hour of camp and how he did not listen, did do what they said, spit at the counselors.. etc...etc. That night I received a phone call telling me he could not return to camp (it was not the first time nor the last time he was asked to leave such an activity). After reviewing this little notebook today, I sat down and pulled up my excel file that I now keep of all my son's symptoms and medications etc. to fill in the details about his behavior that summer. In July of that year I plugged in "lots of trouble at camp. Ramped up mid July, major problems July 28-30". Then I scrolled over to the treatment column, which is already filled in. Sure enough... it says " off antibiotics 6/1- 7/29!" I think that was the longest he ever was off ABX. Sounds like I should have made that phone call to the ENT a couple of weeks earlier and sounds like I should have known to keep him home once things started ramping up. I sure wish I had this forum back then! I'll have you know that 4 years later my son actually went to sleep away camp for a week (he has now gone 2 years in a row) without ANY behavioral problems. In fact, he won the award for "most polite" one year! Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes. I have learned that many of the mothers who would not let their children play with my son when he was younger now call me for advice as their children have presented with challenges along the way. I wish you well on this journey.

I just logged in and it says 23. I think it must have been an error

Glad you have a pediatrician who is in your corner! I do worry about the whole Munchausen's idea. When my son was younger I wondered if I had it without realizing it- Since I kept parading him from one doctor to another saying "he has sinus infections all the time and his behavior is completely unmanageable when he is not on the strongest of antibiotics - is there a relationship?". I later decided that even if I wanted to I could not make the sinus infections that kept showing up on CT scans, and now I know I cannot create changes we are seeing in bloodwork. I think it IS SO important that we all document all we can. Document behavior, notes from teachers, comments from coaches... the whole thing no matter how painful it is. You never know when a piece of information will be important in the future. And, Peg, if anyone ever questions your parenting, send them my way. I'll have a talk with them! I have never met you but I certainly have a healthy respect for all you do!

MMWG - you bring up some interesting questions. My son has NEVER EVER had a positive throat culture, but he has had PANDAS since invancy. He also never had an elevated ASO titer, but does have elevated DNASE B titeres. When you say that your son no longer has strep, are you just referring to the throat culture? That could easily test negative but your son could still have the strep antibodies in his blood and / or a strep infection in some other part of his body. Are you getting blood tests for your son (ASO and DNASE B ), or are you relying on the throat culture? Also, regarding ongoing recovery and safe alternatives, I agree with the omega 3 posts, and I am sure the other natural suggestions are also good (we are actually seeing a doc this week for some supplements for my son). Don't forget, too, that many folks use ibuprofen when kids are having an exacerbation due to the anti inflammatory effects.

Wow! so much to learn... so glad to have folks who can ask the right questions and folks who can explain it!

Buster - Thanks for sharing... You've capture the thoughts and fears well, along with the medical aspect!

Have you considered a consult with Dr. B? He is an immunologist, so he may some other ideas.

I am wondering how old your son is. My son is 13 and still has the little skate board obsession, sleeps with 2 fans and an air purifier blowing on him - even in the winter, and still calls me in at night when he is having an exacerbation (he would do it every night if I let him). When my son was 10 1/2 he had a horrible exacerbation and ended up in the ER. At the time we were told that it was not PANDAS because his ASO titers were not elevated (never even checked DNASE B and now we know it was probably mycoplasma at the time). Anyway, he was obsessing horribly about grades, then he found out about the facts of life and was very upset with that whole idea (He is no longer upset - now age appropriate curiosity). He was thinking about hurting himself. It was a mess. We saw a psychologist and did CBT and that did help a bit... plus I think he just got better physically and that helped too. The point of my story is that a couple of weeks ago I was relaying this information to a new doctor with my son in the room. My son DID NOT EVEN REMEMBER it being so bad. He remembered going to the psychologist and he laughed about thinking sex was icky. Today is a new day. Today you make changes and move forward. You cannot change the past and you do not have to. It is amazing how resilient our children are. In the end, our kids will be grateful that they had GREAT moms who did not give up and they will also be grateful that they had HUMAN moms who were not perfect - that way they will not have to be perfect as parents either. BTW - I agree with Meg's mom - I have also done counseling for myself and found it very helpful. I am realizing that I may need to do some more soon as I have been seriously neglecting this with my son's most recent exacerbation.

My current HMO has no out of network provisions. However, they do have an out of area variance that our primary MD can request. This allows treatment in another city if there is no one in our region who is able to treat the condition. We are seeing Dr. B. My son has immune deficiencies and elevated C3Ds. I am concerned because there are certainly pediatric immunologists in my city who can treat immune deficiency, but none with PANDAS experience. Since PANDAS is not an official diagnosis, I am going to ask the pediatrician to submit a variance stating that my son has immune deficiencies, an autoimmune disorder, and the DSM IV classification 293.84 Anxiety Disorder Due to a General Medical Condition. The idea being that there are no local immunologists who treat immune disorders that are resulting in an anxiety disorder. I am wondering if anyone else has encountered anything like this and if you could offer some ideas. Thanks!

Check with the doc that prescribed the zithro to see if you can do diflucan too. It is a systemic antifungal and really helps to keep the yeast at bay. The probiotics are also excellent, but for my son they are not quite enough and they do not go throughout his whole system. My son gets fungal sinus infections if we don't do diflucan with antibiotics.

Speaking of "refresh everything"... YOU are refreshing. It is so great to read your posts and how you just keep moving forward. Good job with the valium... why risk not getting her there? I am so hoping that this helps to get Allie back to a good place for you. Please keep us posted!

It is good that you are on top of things and know what to do. The earlier you get a diagnosis and help the better. Hang in there!

Thanks, SF mom - I can only hope that we will one day see full remission. My son has been dealing with this since he was an infant and he is 13, so I just keep thinking that there has to be some permanent neurlogical problems that we will see when we are all done. But perhaps we will not. Perhaps you are correct. If my son gets to a point of full recovery without residual neurological deficits you will be hearing me screaming shouts of joy. You are right. I need to keep pushing and not assume that we will have something less than optima in the endl. We are still learning... And - Buster - sorry to have hijacked this thread. Hopefully you will still get comments about the article!

lboll, As I recall, your son is in an exacerbation now. I know the blood needs to stay cold and needs to get to Kathy within 48 hours of the draw. Is it possible to ship it and have it there within 48 hours? It may also be possible to draw blood now and freeze it, then bring it back with you to the states when you come. I would contact cunningham folks and ask about this. It would be a shame to miss this opportunity to test his blood during an exacerbation.

Good luck! Send Kathy an email tomorrow to make sure she got it! Try to find something to keep yourself occupied over the next couple of weeks while you wait!

Nevergiveup (love your name) UGH -- I had something brilliant posted here but I did not hit the right button and I lost it!! I think I said... You are right that PANDAS is an underlying immune problem. However, it really is a neuroimmunological problem. Neurologists (like DR. T) get it. We need pediatricians to recognize the disorder and screen for it, immunologists to do thorough immune and allergy evaluations and treatments, and neurologists to treat the immediate and residual neurological problems that may not go away after the exacerbation (like attention problems or persistent OCD). All 3 have a role and need to understand the disorder. I can understand the American Academy of Pediatrics statement that kids should not be routinely put on long term antibiotics for Tics or OCD and they should not be routinely given IVIG for tics and OCD. However, they should be SYSTEMATICALLY evaluated for PANDAS, and the strep or other infections should be treated, and the immune system should be treated as well if it is warranted. Some day we will have such a system in place. Someday pediatricians, immunologists, and neurologists will all know what PANDAS is and know what to do when a kid walks through their door with sudden onset of OCD or tics. We will have a standard protocol. That is what we need to work toward.

Caution... emotional rambling ahead... sorry Buster, I am afraid this is seriously misunderstood by many who have become familiar with the Kurlan et al (2008) longitudinal study. Somehow, the Kurlan information has been modified to somehow indicate that kids with PANDAS do not exist because there was no difference in kids with and without PANDAS in his study. This is NOT what he found!!! If anyone would actually READ the article (instead of a medical evidence "byte") and be FAMILIAR with the literature, they would see that this work is NOT in contrast to what others have found and it is NOT in contrast to where we are heading with PANDAS (or maybe I am wearing rose-colored glasses). First off - you are right... they tested the kids blood every 12 weeks and then told the primary MD if the kid had strep. They left it up to the primary MD to treat or not treat but they did not record (or at least did not report) the number of kids who received ABX (and chances are the primary MD treated to avoid ARF). Now let's think about this... perhaps they are on to something. Perhaps ALL kids should get a blood test every 3 months for strep and get treated as needed... and then we would NOT see exacerbations related to strep. wouldn't THAT be nice? Second - they also did not control for neuropsych meds, and many of the kids were on them. They don't tell us exactly how many children, because we don't know if kids were on more than one medicine, but they do present a table that looks like this (sorry I cannot insert a table): DRUG *Number of PANDAS ~Number of CONTROLS {alpha}-Agonist *26 ~28 Antipsychotic *11 ~11 SSRI *18 ~26 Stimulant *13 ~12 Atomoxetine *11 ~9 Minor tranquilizer *5 ~8 Mood stabilizer -*4 ~8 Baclofen *2 ~1 Pergolide *2 ~1 Now I really do not understand the point of measuring exacerbations when so many kids in the study are on medications to reduce exacerbations. It seems to me that if they really wanted to know the difference between the PANDAS kids and controls regarding exacerbations, they would have statistically partialled out for the effects of the medications, or separated the groups out and studied the kids without meds separately. The fact that they did not leads me to question the findings. HOWEVER Despite this - they still found a statistically significant greater number of GABHS infections in kids with PANDAS (um.. could it be that kids with PANDAS have an underlying immune problem?? - don't know... they never tested IGG or C3D or any other immune markers). They also found that kids with PANDAS had more exacerbations than kids without - though it was not statstically significant (it was darn close, though and I bet with more kids in the study and / or with removal of the neuropsych drugs it just might be significant). Finally, as the abstract states "Patients who fit published criteria for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections seem to represent a subgroup of those with chronic tic disorders and obsessive-compulsive disorder who may be vulnerable to group A β-hemolytic streptococcus infection as a precipitant of neuropsychiatric symptom exacerbations. Group A β-hemolytic streptococcus infection is not the only or even the most common antecedent event associated with exacerbations for these patients. Additional intensive studies are needed to determine whether there is clinical or scientific evidence to support separating out subgroups of tic disorder and/or obsessive-compulsive disorder patients based on specific symptom precipitants." I FULLY AGREE. I take that to mean that my son, who fits the published criteria for PANDAS, is part of a subgroup of kids with tics and OCD and he is more vulnerable to GABHS infection triggering his symptoms than kids who are not in this subgroup. However, GABHS infection may not be the only infection (or even the most common infection) that triggers this in my son. I believe this is true because we have had very bad exacerbations with mycoplasma. We also had a very bad exacerbation after H1N1. I agree that additional intensive studies are needed to determine whether there is clinical or scientific evidence to support this subgroup... and I'd like to add that these studies will not be helpful if they do not control for treatment. I would also like to see additional intensive studies that test for a variety of infections, not just GABHS. I would like to see a study that measures exacerbations in kids who do not receive neuropsych drugs. I would like to see a study that keeps track of who gets antibiotics and states it and at least makes an attempt to control for this or partial out for this statistically. I would like to see a study that measures underlying immune function, including allergies and autoimmune markers, to get a better picture of "the whole". I would like to see the Cunningham study fully funded and used as a springboard for our kids so we can get away from this silliness of arguing if the exacerbation occured within 4 weeks or 6 weeks or 9 weeks of a GABHS infection. Good golly! The PANDAS kids are sicker and they have more exacerbations. The need to be tested for strep more frequently and treated when they have it. They need to have their immune systems watched and treated as need. Sorry for the rambling...

Coco - I may have missed something in the posts, but I am wondering if your daughter has an IEP or 504 plan in school. Also, has she every had a real live functional behavioral assessment from a fully qualified psychologist.... and has she ever had a positive behavioral support plan? (Please do not tell me they told you that putting her in a room with no chair was positive behavioral support!)

Wait... is your son in my son's class?

Coco - thanks for posting that. I have been wondering about the old mycoplasma and how to address that. My son has an elevated IGG, but not IGM. Very interesting. Thanks for sharing!

Wow! I have so much respect for you. I am frequently feeling all alone and so far from my PANDAS doc (7 hours away). I cannot imagine half a world away. It sounds like you have been down this path many times. You have less than a week left until the doc gets back on Saturday. You know you can hold it together and keep your son safe until that time... and keeping him safe is the main goal until the doc gets back. It sounds like your son will not take any pills for meds. Do you ever use liquid versions (maybe mixed in a milkshake or something like that)? Even just childrens motrin until the doc gets back. Is there a pharmacy that can give you liquid augmentin - the baby version? I am sure you have thought of all this and if you do not want to reply I understand. I am just curious as to what you have tried and how you handle this usually. Is there anyone that you can call in for some respite? Someone from the school you started? Maybe another parent or a teacher? It would be good if you could get a break for a few hours of sleep.

lboll- I am relatively new here so I do not know your history - but I just wanted to wish you well as you work through this and wait for meds. I hope you are working with a good PANDAS doc who can help you find longer-term solutions now that you know the steroids helped! Best wishes -

dut- did you try decreasing the dosage for dd6? My ds can only take 1.5 mg and used to only be able to do .75 without vivid dreams... but it still helps to fall and stay asleep even at the lower dosage.

Hi - you may find this thread regarding melatonin interesting http://www.latitudes.org/forums/index.php?...amp;#entry65502 I had also included a link to a melatonin information website in that thread. Hope that is helpful!

Happy Mothers day to you... and to all of us! Thank you for sharing!