Megs_Mom

So glad you made it through today - will be thinking of you tomorrow! You always make me smile, even when you are telling about an awful event. I laughed at the idea of tossing an obsessive object into the car to get her to go. You are the best mom.

So Meg is in "remission" at this point - she has had 2 minor exacerbations about 5 days ahead of a cold, that calm right down once we go to full strength abx, motrin & some ERP so that she did not sprial out of control. I still worry a lot about what the next steps might be, and what the true cause is for Meg, but overall, I am also feeling much better. So I know that is a sign that Meg is well. I find myself reading things, and it's not always about PANDAS, talking to friends & not bringing it up (well, more than once an hour ). For those of you on a different side of the journey, I hope the same for you, and want you to know that there was a time that we really thought our beautiful brave child was destined to a life of full time care. There was a time that I could not imagine her future without breaking down into tears. I don't take it for granted - every day is a blessing, and when the minor exacerbations start, I still panic. But overall, we are good. Despite how well she is doing, she has retained the "baby talk" that was one of the hallmarks of the bad times. Honestly, unless I am looking for it, it is such a part of our life, that I don't even notice it. But it drives dh crazy, and he bugs her about it a lot, thinking it was on purpose. Frankly, I could care less - we got through so much more, and I guess I am just tired of the doctor/psychologist/OT weekly route. Anyway, I started paying attention so that I could end the issue between them, and decided to take her back to OT for a speech evaluation & to learn some tools to help her break what I perceived as an unconcious "habit". Well, I learned at OT that she cannot hear the difference, and uses her tongue in a wrong way, making the "s" sounds actually make a noise like "th" (she sticks her tongue in between her teeth instead of on the roof of her mouth). So Rabbits becomes "rabittth". She can do it right if taught or if really thinking, but the rest of the time, all her "s" sounds are "slushy". The OT advised us that this is not a habit & she can teach her tools, but that it will likely take a few months to get to the point when she can recognize the difference and start to self correct. She suggested that we not call it baby talk anymore, but refer to it as the "slushy s". I will tell you that she did not have this issue until she was around 6 and a half - sometime around the time that PANDAS came in. I was thinking that maybe the "baby talk" that many of us refer to as a hallmark of PANDAS, is actually a change in the way that their tongues work, causing issues with the s or r sounds. Is this the same kind of speech issue that others have challenges with as well? Maybe the basil ganglia is in charge of the tongue movements?

I'd like to know why so many of you are cheatin' with my man?!? Love him & we are now well into this. He is supportive of her and of the search, but has NO interest in learning it himself unless it is an emergency, and then he will step up. Love the joke!

I'm so glad they called you back! We lost our first ped in this same situation, except she was going on vacation the next day, my kid couldn't leave the house or get out of bed & she would not call back!!!! And they were mean to me at the front when I was in the midst of that first awareness that something horribly wrong has happened to my 6 year old, and I was either crying or yelling.... Oh, this just brought that back! Anyway... I always forget to use Advil or Motrin for a day or two when we have an exacerbation. I start to freak a little bit when it arrives so suddenly. So if you are looking for a very short term tool, you might want to consider Children's Advil or Motrin. It does help her - hope it might work for you. We use the normal dosing schedule, and it does wear off after 4-6 hours, but it gives a lot of relief. Best - Susan

We found this to be quite true for our daughter. ERP therapy has been helpful in eliminating virtually all OCD outside of exacerbation. And when we have a flare (omg, we have had 2 now ), it really helps us to get through a couple of mildly difficult days while we ramp up the abx. She is only 8 and the fear feels very real when it comes. We usually have to get through one or two meltdowns or panics - then we talk about each one, and do some ERP and it seems to help her be calm & to keep it from escalating quickly.

I bolded the ones that I generally feel are important to rule in or out. Also, has she had an igenex Lyme panel done? You can order the kit from the website, and then have it run & overnight it yourself (kind of like Cunningham's). Thyroid Profile, T4, T3 uptake, Free Throxine Index Tyhroid antibodies, Thyroid peroxiadas TPO ab, Thyroglobulin antibody CBC with Diff (this has a long list of sub groups, but this order should automatically include all, such as WBC, RBC, Absolute Gran, Lymph, etc) Sed Rate Immunoglobulins, Quantitative (IgG, IgA, IgM) Ceruloplasmin RA Factor Anti Nuclear Antibody (ANA) Reflex ANA Titer & Pattern Cold Agglutinins Diptheria Antibody, IgG Cryoglobulin Evaluation IgGsubclass 1, 2, 3, 4 Influenza A Virus Ab, IgG Influenda B Virus Ab, IgG Strep Pneumoniae Serotyples, IgG (14 subtypes) Tetanus Toxin Ab, IgG

No Razzball is not on the Pepsi page - they want you to support Synergy. They are just a group of guys that are supporting Synergy, but they use the name Razzball, so that everyone will know that a small group of people can make a big difference! I agree - Synergy is very focused & we should follow their lead!

Yep, razz ball is a fantasy baseball group who is voting For synergy, and for their supporting causes. Now that is cool! Page down on the link and you'll see the post about it.

Hi and welcome. I'm sorry to hear about your son. There are a lot of great parents here, so I'm sure you'll get quite a few responses. We use liquid azith, and ended up switching pharmacys. The original one gave us 10 days at a time, so I was running back all the time, they co-pay was crazy & at least once a month, I'd get denied. The new pharmacy called the doc office & changed something on the prescription, and they give me the entire month to mix myself. No further denials except one month when she had surgery & we had to buy the azith for that out of pocket - we could have used a different abx, but wanted to stay on the azith. Our daughter sounds nearly exact to your son. Severe contamination fears - she was not so worried about touching a "weenie" (thank God!!!), but poisonous plants touched the car, touched her leg, touched her hand, touched her face, her hair - she could end up in a frantic circle of everything being contaminated in a matter of seconds. She also had pretty extreme fears about "sugar" making her sick - and pretty quickly, everything got classified as a sugar, so the eating thing was pretty intense. She started spitting "germs" about a month into her 3rd PANDAS episode - and she spit about every 4-10 seconds. It was not a tic - she had a thought behind it - she was spitting germs. It did however, become very habit based, and was a very hard habit to break once we got the PANDAS better under control. She did it in about 3 weeks, with the help of our ERP therapist. She also had panic attacks and developed agoraphobia. Pretty much all of this is OCD, and it really helped our family to cope, to understand what OCD is and what was happening in her brain. Here is a list of books that you may want to read: http://www.latitudes.org/forums/index.php?...ic=6616&hl= The book referenced above is a workbook for kids (and parents) called "What to do when your brain gets stuck" - it is available on Amazon & is really wonderful. Our daughter, 8, is doing very well overall. Thus far, we have been able to acheive remission using azith and ERP therapy. She does still have flares - she is very rarely sick, but this winter, did get 2 colds, each of which were preceeded by about a week by a PANDAS flare up. Each time, I panicked, and was sure we were headed to IVIG, but once I remembered the tools, she goes back to a good place within about 2 days - we give Advil short-term, have her azith dose changed, and use ERP again. We are just in the midst of her second flare, and it was the most intense of the 2 in terms of sudden onset. In many ways, our daughter was also "functional" at school, but she was in severe fear all the time. It was not ok to let her just try to function like that - she definitely needed help. After reading your post, I would just suggest that you follow your instincts - don't accept anxiety for your son, so long as you have tools left to explore for your child. He deserves it!

Hey Smarty - wish I didn't know exactly how you feel, but I do. It's so hard when you want so badly to have a partner in this fight, and then you find that they are not 100% there with you. We are somewhat resigned to needing a team, and not expecting 100% from any one particular person or discipline. Wish it were not this way - but YOU are the 100%. You have to take what you need from each person, and combine it with others, and decide in the best way possible, what to reject. Now to have Lyme as well?!? You are doing a wonderful job of figuring out each step for your son. Try not to let the setbacks get you down. You're doing great - we'll be your partner in the battle!

Oh, that's sweet, thank you. I'm not sure that I'll ever have the energy that you guys are putting behind this - it's SO complicated! I think I may be too old. I need a teenager in my life (never thought I'd say THAT!) We have enough fundraising done for this summer's training, so we are ok for a little while. You'll get it - we are all rooting for you! And it's such fun to watch your strategy sessions!

So I actually vote for PANDAS everyday, as does my hubby & everyone I know. We also had an entry into the 50K block, which I have never mentioned here, as it suddenly felt like it would be competitive. We have turned support to just the PANDAS entry, and will re-enter next month. That being said, I do think that a block of $50K groups could be very strong - so long as you really form alliances. We were not NEARLY as organized as Vicki & Kelly (such an awesome job & I know how hard this is!!!) It's a wierd system, but I tend to believe in the alliances, as you are forming them quickly and have done SO well this month. Congrats, and we'll keep the votes coming. I agree with assigning voting blocks for those that want them - feel free to give me an assignment if you wish!

When our daughter, 8, is in an exacerbation, we find that TV or games calm her on the surface, but when she comes back up, she is worse than when she went in. During an exacerbation, I have VERY limited tolerance for any screen time & limit it to 30 minutes a day at a time when ALL other work or challenges are done, and at least 30 minutes before bedtime & followed by a bath and reading time. I don't know what TV does to her brain, but I know it is not good. During an exacerbation, there is often no time for TV. Even off exacerbation, our policy for the week is 30 minutes total screen time after all other work is done, including getting clothes ready for the next day . We are lenient on weekends. I agree that it can feel like an addiction - I get cranky myself when I am disturbed from a good show. We do find that being able to tape a show, or pause a game helps. That I am not "killing" the actual event, just moving it to a more appropriate time or limiting it. We do multiple reminders to break her concentration, and had to live through some tantrums about it. After medical treatment, we moved to a really strict policy of any time spent complaining or tantruming about TV or games is then subtracted from the next days screen time allowance. We do occassionally reward with TV or game coupons, but try to limit her ability to earn additional screen time. I love this posting (despite the very valid issue being discussed) - I usually feel like the "meanest" mom here - you guys are really strict too!!! I agree with Vicki - if the issue were this severe, I would likely take it out of the house for 3 months. Not sure if that is realistic for you, but maybe some sort of clock-in system - and if he uses it without permission, then unplug & take it out for a period of time. My dh was out of town for 2 weeks, and I really loved the fact that the TV was rarely on while he was gone. He leaves it on in one room & goes to the next & turns it on again. I think he may be addicted!

I'm not even close to an expert on this - but the first question I'd suggest you think about - is where do you think the source of inflamation is? Does he have signs of allergies (dry or painful eyes, watering eye, stuffy nose, sneezing, etc) or does he have signs of stomach discomfort (even if you think this is anxiety related, consider that it is not). Then you can decide which anti-histimine to try to reduce the area of inflamation. Have you considered an allergist/immunologist or a gastrointerologist? We use both & they have both been quite helpful in terms of ruling inflamatory issues in or out.

Thanks for the laugh out loud!!!!!! I have a few very SPECIFIC doctors that I can see in my mind when I read this! I may post this one up at my office.

Great article, thank you. It's so odd to realize that the fight we are having now is over 100 years old. A little discouraging, but thank God we have abx now, even if we have to fight to get it.

Happy Mother's Day, all! To one of the most dedicated and determined groups of mom's that I know. If your child is in remission, or if you are just starting the journey - you are an amazing mom. If today is full of joy - or still filled with worry - I hope you will take a moment to know that you are doing your very best for your child, and you deserve great admiration. My prayer for you (and for me!) this year, is for a happy healthy child. You are a hero mom.

Hi - we have an 8 year old, about 52 lbs. She uses 250 every other day at start of month & is great. Right now, her zith goes down to 100 every other day after that, as immune-modulating, and it is "ok", but I think she may need more. That is another post... Anyway, are you confident that this is strep related (strong causal relationship)? If so, then I'd suggest getting started right away. If you think it is lyme or myco related, then you might have a slightly different decision due to the herx timing. We did not have a strong causal relationship to strep, but we see no herx - azith works miracles very quickly for her, thus far - although it was still a slow process at her dose. Prednisone was the fastest result, but we only had a week and the results were temporary. I'd agree with mati's mom however - how severe is your child? If they are suffering, and you have a fairly confident diagnosis of PANDAS, then starting treatment would seem to be a top priority. If he is only mildly effected, then waiting a few weeks may be a fine decision. For our daughter's situation, avoiding an exacerbation at all costs is the parameter that we are working from. Good luck with the decision - nothing is ever simple is it?! Happy Mother's Day, all!

Hi Melanie - we use an H2 - Prevacid - I was reading this same article that you have quoted below, a few days ago. I posted about whether anyone thinks this might be helping, as we are considering going off of it - I wish I could give you advice on this. I have to say that it certainly has not hurt! We started it at the same time as the abx, so I really can't say with confidence if the good results are the abx, the prevacid, or the combination of both.

I guess it would be a little repetitive for me to say "yes, ERP is a very helpful tool" - with the comment that medical treatment is an essential part of the treatment! Although we did use very intense ERP during undiagnosed & untreated episodes, and it did let us get through the day - but not very happily. I would guess her severity was around a 7 or an 8 out of 10 (so not severe anorexia, for example, but very debilitated, and with OCD hijacking every single part of her day, every day. She was pretty severely agoraphobic as well, and had eating issues in relation to her contamination fears). After medical treatment, the ERP tools that we had practiced so much, suddenly became pretty easy to use to knock out residual stuff. We are huge fans of ERP therapy, and feel that for many kids, especially those that were undiagnosed for a while, or may have have mild underlying OCD that is then reinforced dramatically by PANDAS, that ERP is so critical. Best starter book "What to do if your brain gets stuck" - it's on Amazon. We had a minor episode back in January that felt frightening for about 2 weeks total. But between adding a second abx and focusing on ERP - it was short lived, and was a much bigger deal to me than to her. Who knows if this was a blib, or if the medical & ERP combo really helped keep it short & mild. The only way we can really "test" this is for her to get really sick again, so I don't wish for that! Right now, she is at 100%, other than her natural intense energy level. We have always kept the attitude that we wanted to TREAT the CAUSE, but that we also want to give her tools so that an episode is not so frightening to her. I have no idea what will come her way in life, but am hopeful that she will be able to deal with it. Please do keep in mind that ERP is the therapy - CBT covers a wide range of therapy types. Asking a therapist if they do CBT will not guarantee that they know how to really do ERP. Good luck!

We did also trace exacerbations to ear infections - and recently removed her adnoids, as she seemed to have fluid in her ears & nose all the time. Just trying to remove all inflamatory sources. Thanks for the note - hopefully someone will have thoughts for both of us! Hope he is doing well now. We've made it through April... now for May....

I always read the allergy posts with great interest (Thanks, Suzan, for a great one recently), because my dd's most severe onsets have been in April or May each year. I always felt that there had to be some sort of seasonal component, but have never been able to stalk it down. After blood tests & skin tests, she is allergic to NOTHING. We are in NC, and the pollen starts in March here & runs solid through June or July. Of course, other than ear infections, we see no issues with strep or titers either. May 25th is a dreaded day around here - if we make it through that date this year, I may have to offer up a sacrifice! Anyway, last August, we added two things at once - Azith (for the PANDAS) and Prevacid (for her ulcers). Normally I add only one thing at a time - so we can see what helps, but this was an emergency on both fronts. I never imagined that the Prevacid would have anything to do with the OCD, and have attributed all her improvement to the azith. We are now about to wean her off the Prevacid. But I read in the last topic about how Pepcid is actually an antihistimine. Which was a complete surprise to me, so I googled "prevacid & antihistimine". I found a number of articles that say that Prevacid is an antihistimine as well. And that antihistimines prevent the dialation of blood vessels. So I am wondering if the Prevacid is just healing her gut? Or if they are preventing something from her gut (strep?) from getting up to her brain? Or actually effecting her brain? And if so, what are my next steps? I'm trying so hard not to mess with "success", but we really wanted to wean her off this medication. Anyone found any other studies about what effect this class of drug may actually have on the mechanisms actually involved in PANDAS? Any ideas from those of you that have a medical education? Or am I over-thinking this? Ack!

Isn't it awful! I am so sorry. Our daughter had extreme comtamination fears, and it felt like we were being attacked from all sides. To help her manage through the illness, we had to go the opposite direction in terms of "not fearing" illness - and yet I wanted to slug parents that sent their kids to school sick. It is such an awful disease. We only have the one child, which is normally something that I mourn, but made life much easier during a PANDAS episode. I wish I had some advice for you. It's nearly impossible to put them in a bubble. Hoping that we are nearing the end of the strep season - best of luck with pex.

hope you find some good answers from Dr. B. I am personally a believer that any child with sudden onset OCD should be given antibiotics. It could save a LOT of pain for a lot of children. Good luck!

Great site! Voted and passed it on!