airial95

I'm going to give a personal caution in the other direction. It may make me unpopular for the moment, but so be it, I'd hate for anyone to repeat my mistakes. For over 10 years I dismissed most of my joint pain as either the result of years of abuse as a dancer and competitive college cheerleader, or looked for causes "other" than something I didn't want to face or deal with. The pain I was experiencing on a daily basis was all in joints that I had previously injured over the years of dance/cheerleading - so it made sense to some extent. And it always seemed to get worse when I was sick, so infection related also made sense to me. When my hands finally got into the mix, I finally looked for help. But wouldn't accept the initial dx that my primary care (who was also my mother's doc) and my rheumy gave me of ankylosing spondylitis (a genetic disease similar to arthritis but also serverly impacts the hips and spine - eventually causing permanent bone fusion of the spine if untreated). I spent over a year looking for other potential causes and cures (infection, natural remedies, etc...) Finally, a genetic test to confirm the HLA B-27 gene and scans showing I already had irreversible bone fusion in my upper and lower spine convinced me to drop the search and begin treatment for my AS. The reason I always got worse when I was sick is the nature of the disease - the more you are inactive, the more damage is done and pain you experience - when I would be sick and spend days in bed, it always got worse. Even after I "accepted" the dx, I pushed off any real treatment for another 9 months becuase I was still nursing my son and wanted to try other less harsh treatments first. It wasn't until I was shown the difference in my 6 month scans over that time (and saw additional fusion) and I submitted myself to the same indepth research I had spent on PANDAS on AS did I realize that there is no turning back this disease - only slowing it down. Refusing treatment that will help delay it's progress really was not a good idea. In the 4 years since I started treatment, I have significantly halted the progression of the bone fusion. I still have significant joint pain daily, but my yearly scans show very little progression of fusion - for now. My story has 2 cautions - First: If I'd known and understood my family genetic history (mom's side carries the gene - she has uvitis (another rare arthritis caused by the gene) and both my uncle and grandmother had AS, I would've gotten treatment much sooner, and wouldn't have ignored my body's warning signs like I did. (Onset for AS is between 17-35, mine began around 23.) That history can be the key to alot of our medical mysteries - unfortunately for most of us, our parents generation doesn't believe in sharing that information. Second: The time I spent in denial and searching for other causes and treatments has caused irreversible damage to my hips and spine already. The damage to my knees is also severe - 3 different rheumies have all told me that they have rerely - if ever - seen damage that severe in someone my age who hasn't played professional sports of some kind. I'm looking at early hip and knee replacements (possibly even before 50), and eventually, likely a wheelchair. Not how I imagined my retirement. Am I telling anyone NOT to look for alternative causes outside of arthritis for their joint pain - obviously not. AS is NOT traditional arthritis, and had I accepted a dx of RA early on, I would be worse off than I am now. You still have to question and make sure the dx makes sense. But I am saying that there may have to come a time when you have to accpet something you'd rather not. I didn't like the prognosis of AS, and I watched what it did to my uncle - he was a stooped over hunchback from the bone fusion by the time he was in his mid-50's. Sticking my head in the sand for as long as I did wasted away many years of me not feeling my best - and has taken away many more to come as my body will fail more quikcly because of my own stubborness.

We have seen many of the same things - but our son is only 5, and hasn't even cracked 40 lbs yet (refuses to eat most of the time), so the physical stuff is a bit easier. He does well on abx, but then he gets strep again and we're back at the beginning. After 2+ years, we finally added an ADHD medication, low dose Vyvanse. We had some of the same issues - when trying to get him to do anything (meds, take a bath, get dressed) he wouldn't necessarily rage, but he would do a million other things or run around like a maniac making everyday simple tasks take longer and longer. We added the vyvanse in December - right before break so we could be home to observe the differences first hand. It really has helped us. While for a while after starting it, there was still anxiety about doing everyday tasks - it was less distracted and we could focus on the anxiety itself and help him work through it. It worked wonders. We are headed for our first IVIG with Dr. B the first week in April. We are hoping that we can take him off of it after that. He did reach 100% after T&A a year and a half ago, but relapsed quickly with another strep ifection 6 weeks later. I fought the urge for any psych meds for a long time. The one we chose is a low dose, and does not need to be weened off or "ramped up" before seeing results. The first day was scarry, he was almost manic - talking a mile a minute, but within 36 hours of starting to take it - there was a remarkable difference.

Bored at work this afternoon - I also decided to search for other publicized cases regarding BCH - and found this: It seems BCH's MO is to have uniformed guards play thug for them

I think some kids post on there through their parents account too. Like I said, mine are way too young for that - but if you do a search on Facebook, I'm sure you'll come across it. It's a closed group - so you have to ask to be included, and then the adminstators will vet you to make sure you really are a PANDAS kid/parent and not some creeper.

Also - I don't remember who said it - but preparing a financial plan is helpful. When my son was dx 3 years ago - it was a major point of contention between my hubby and I. I couldn't understand why he didn't seem interested in all the research/information I was finding and sharing with him. Only to find out (months later - with the help of marriage counseling!!) that he had been arranging our finances to be able to pay for what ever medical costs may head our way without it bankrupting us. Turns out we were both engaged in our own ways. He figured I had the medical side covered so he'd find some other way to be useful. But I would also continue to look for providers who take your insurance - Dr. B does take most insurance. If you can get good quality help without breaking the bank - it's better for everyone involved.

I would suggest calling Dr. B immediately. Since you're relatively local, tell them you'd like to get on the cancellation list, and call periodically to see if there are any, and you may be able to get in sooner. When we made our initial appointment - it was about a 2 month wait, but they called me 2x in that timeframe to see if we wanted a cancellation. Since we were flying up from FL - we couldn't make that happen. But you could. He is an immunologist and PANDAS specialist. Since you also have immune issues that you're dealing with - he may be a good choice. I agree that keeping a log is HUGE!! Especially as you're trying new treatments and supplements. Also, try not to try to many new things at once. It makes it more difficult to see what is having postive/negative effects. Many of us have found relief for our children using Motrin - it's our wonder drug. There is a FB group for kids/teens with PANDAS - it's a private group that the parents have to request for the kids to join so it's moderated and strangers can't get access. I don't have the specifics as my kids are too young for FB - but someone else may be able to point you in the right direction if she's interested.

My daughter lost 4 teeth in 3 weeks in November and we had a rough time of it. We had her in weekly for strep tests b/c we were sure she had to have strep - it wasn't until the 3rd tooth fell out that I remembered what many others here have reported. When I asked our doc if it was a possibility - he said absolutely. There's lots of bacteria in the mouth (including strep) and when a tooth falls out/break through it can get into the bloodstream and cause a reaction. He gave us a couple of weeks of abx to help us through the last loose one falling out. She started having a rough time over the weekend and the first thing I did was check her teeth!! (Poor thing - all 4 of her front teeth (2 top/2 bottom) fell out and no sign of the new ones!)

Our vet never bothered testing. She said it was expensive and not very reliable. Instead, she offered to treat as if they had strep. The rx she wrote was even one of the free ones we can get at our local pharmacy - so it didn't cost us anything since we were already there for the dogs annuals. She offered to re-treat at any time we thought necessary too. We're going for our first IVIG in a month and I'm thinking of having the dogs (and whole family) on preventitive abx just in case at that time.

Where? What show? I've tried to contact our media locally many times with no luck.

I should add that my PANDAS daughter only does 30 days of abx at a time, with no weaning and no issues when taken off. When she flares/gets strep, it's simply a 30 day course and she's usually back on track after 2 weeks on the abx. If only they all could be that easy.

Our experiences have been similar to Nancy's - except our backslide always happened around day 5. We were able to get him off successfully once - but it lasted only 5 weeks before he tested positive for strep again. Just recently - we did a 10 day no abx stint when he finished his cipro - this time he stayed stable, but still was only at about 70% so Dr. B put him back on a combo b/c some of his blood labs came back showing that would be needed. We're currently waiting to schedule our first IVIG...

There is a study on IVIG through the NIMH - I don't have the information, might be in the pinned threads section at the top of the forum - but it's worth seeing if your child will qualify - they cover all expenses. I know they only need a few more children.

Some folks have reported a worsening of symptoms post T&A - that was not the case for us. When we did T&A in November of 2011, it was the first time in close to 2 years my son was 100% symptom free. No tics, no OCD, nothing. He even gained 7 lbs in 6 weeks because he was eating regularly for the first time in years. It was wonderful. Unfortunately - 6 weeks or so post op he tested + for strep again, and we started over. His flares have not been as difficult since the T&A, and his recurrance of strep has decreased (but it's still more often than rest of the world!) Some suggestions - INSIST on pre and post op abx, as well as IV abx during the surgery. Many folks who reported issues post op did not have all of these precautions. INSIST on having the tonsils cultured - it may help give you a clue as to what is going on. Don't be in a rush to quit post-op abx if things are going well. That was our mistake. He was 100% so we all thought we could maybe take him off the abx - he got strep within days! We had such success with it for our sever PANDAS son - that 3 weeks later we had our mild PANDAS daughter's removed. She too has gotten strep again since (only 2x, compared to 5 the previous year!) but her symptoms have always been a walk in the park compared to my sons. Eventhough it didn't solve all of our issues - I would absolutely do it again in a heart beat.

We have looked into and considered additional environmental testing on our home (my hubby is an environmental engineer). One thing to consider and remember - if you have any of these tests done, depending on your state/local laws, any and ALL results must be disclosed when you go to sell your home. Same is true if you have chineese drywall repairs, etc... It can significantly affect the value of your home and your ability to sell down the road. I'm not saying that our children's health isn't worth that downside - it's just something to consider.

I agree that you need to get treatment ASAP - and a PANDAS specialist is important. However, a few suggestions: - If you have a local doc that is willing to treat/consider/learn about PANDAS - hang on to them. Having a local resource in addition to the experts is invaluable when flares pop up or illness occurs. Most of the experts will willingly work with your local doc, and it's a good way to continue to educate the medical community about this condition. You never know - they might be able to help another kid in the future because of what they learn with your child. - When looking for a specialist - one thing to consider is that they all have varying backgrounds (pediatrics, neurology, immunology, psychiatry, etc...) so that may be a consideration into who you choose. Our first PANDAS expert was chosen because she was 1) local, 2) accepted our insurance, and 3) used a conservative (abx primarily) approach - which considering our son was 2 at the time - was important to us. Ultimately, after 2+ years, we started seeing another specialist - an immunologist - because our problem was recurring infection - so that was the logical choice for us. - I would suggest focusing on "immediate" treatment vs. aggressive treatment. My son was able to get to 80-90% normal with abx alone (when not re-infected with strep). This gave us pause for many years before attempting anything more aggressive. at 80-90% he was fully functional, with no tics, and very manageable minor residual OCD that was helped with therapy. Weighing the risks of more aggressive treatment vs. the benefits is critical. (For the record- we are now going to be doing our first IVIG in the coming weeks) Some kids recover 100% with just abx, so it's worth a try before going more agressive in my opinion. If you can get your local doc to give you a 30 day trail of abx (I suggest azith or augmentin) while you research other possibilities - that would also help. My son saw noticable improvement after 7 days on abx, and drastic improvement after 10-14 days. He was by no means "cured" at that point - but the improvement was drastic - and he had no known infection at that time, and it had been 8 months since the infection that we suspect triggered his PANDAS. So proof of current infection isn't always necessary. - Try giving your son ibuprofen to see if that helps symptoms. A majority of kids with PANDAS will see some improvement with ibuprofen because it helps reduce the brain inflammation. Its a miracle drug for our son - its worth a try. - If you haven't already, keep a detalied log/journal daily of your son's symptoms. We used a numerical scale that we put into an excel spreadsheet that we graphed to track progress (if you PM me your email address, I'd be more than willing to share it with you.) The number scale helped us be more objective, and the graphs helped us track improvement, trends. Using this - we were able to see when treatments were working, as well as what symptoms tended to "spike" drastically at the onset of a new infection. (For example - when my son wets the bed - even if there are NO other symptoms happening - we're off to the ped for a throat culture. 9 times out of 10 it will be positive. We learned that from our log. Being quick to treat new infections has helped us minimize the severity of flares.) The log can also help doctors that are on the fence about PANDAS. Our local neurologist had heard of PANDAS, and did believe it exists, had even treated a couple of cases. However - he was under the erroneous belief that without elevated strep titers you could not have PANDAS. My son has NEVER had an elevated titer - even with 30+ strep infections. Our log convinced our neuro that there was no possibility that we were deailing with anything else BUT PANDAS when he saw the strong correlation between the spike in symptoms and positive cultures. I know it can be overwhelming, and there is a lot of good advice on these boards and other places. But the best thing you can do is trust your gut. You know your child better than anyone. You know your family situation/resources better than anyone.

Also - I don't know when you're heading down - but the Tampa Bay Rays are having a fan fest at the Trop on Saturday - it's also within walking distance of the Rothman. The new Dali mueseum is also not far from there in downtown and is beautiful.

I'm local - so if you have any questions or need anything - feel free to PM me. I'll be travelling Mon-Tues, but will be around the rest of the week. Sandra

Our ENT also told us that the "standard" procedure now for T&A is no abx at all. However, ours then proceded to tell us that we needed to do at least 7 days post-op and IV abx during the procedure for the PANDAS itself. Both of my kids were already on abx pre-op for ongoing flares/infections - so that was a non-issue for us. But I echo everything everyone says here - if you can't get the ENT to agree - DON'T DO IT!! It's crucial for these kids. Is there another ENT in your area you can consult? Ped to write the pre/post rx?

I say 20 years because as we know with this condition - it takes 5-7 years for someone to do the research - and then another 15+ for the yahoo's in the medical community to get their heads out of their patoots and acknowledge it!!!

reactive, I've asked both Dr. M and Dr. B about the possible connection of HLA B-27 to PANDAS (since i'm also positive and have AS). Both agreed that there is no correlation - but honestly, I wouldn't be surprised if 20 years from now one was found!

I have often thought about - and somewhat agree with the concept - that we have "sanitized" our way to susceptibility for certain bacteria. Our pediatrician actually told us one benefit to placing our child in day care at a young age as that they will be exposed to a variety of germs that will help build their immune systems. That being said - I also wnder at the timeframes mentioned in the literature you've posted. About this time as well - access to medical care in developed nations improved drastically while in lower socio-economic and rural areas medical care was still not easily accessible. How much does this have to do with the change in stats? If in the city an upper middle class family started running to the family doctor with every sneeze and sniffle - they are more likely to be told it's hay fever, or allergies, etc. Where in a rural setting, they wouldn't even consult a doctor until there was a severity of symptoms that couldn't be ignored. With allergies in particular - I agree that they are far more prevelant today than ever before. But I take my daughter as an example. She's allergic to pennicillin - mildly. She developed a dermititis rash after taking pennicillin for an ear infection that wouldn't clear up on it's own. It did not bother her - didn't itch, no anaphylaxis type reaction - just a spotted rash all over her body. She's now classified as a penicillin allergy. I guarnatee you 40 years ago - my mom wouldn't have even taken me to the doctor for such a rash. She would've waited a couple of days to see what happened - if it went away, she wouldn't have thought twice about it. Our doc even mentioned that she would likely outgrow it in a couple of years (a theory we have yet to test). My question being - is it the change in environment that caused the shift in statistics - or the availability of diagnosis and treatment - or a combination of both??

Got them out for both of my PANDAS kids (5 yo son is severe, 6 yo daughter is very mild). Prior to T&A, my then 4 yo son had over 2 dozen positive strep infections in just about 2 years. Was on full strength abx prior to surgery (cefdinir - which was already failing) and IV abx during surgery - followed by augmentin post-op (watited to switch abx until post op). My son was 100% INSTANTLY. The ENT only ordered 7 days of post-op abx, but our ped and Dr. M extended it to 30 days. It was amazing the difference in my son. At the end of 30 days, we tried to take him down to a proph dose of Augmentin - and one of his tics came back very mildly (hardly noticeable). So we immediately went back to full strength. Unfortunately - at the 6 week mark, he caught strep again, and we saw a full recurrance of symptoms. In the 15 months post-op he's had 4-5 + infections (down from 6-7 per year previously), and his flares are less severe than they were prior. All in all - I would do it again in a heartbeat!!! Tonsils were cultured and negative for strep (although positive for Influenza B - I think) My son's surgery was such a sucess, that at my daughter's ENT follow up 2 weeks later (regular follow up from adnoids/tubes done in that Feb), I asked about it - she had just been dx with PANDAS, and had her 4th strep infection the week before my son went in for surgery. The doc said that while he normally likes to see 6+ infections in a 12 month period before recommending - considering the PANDAS history in both her and my son, he recommended it. One week later - we were back at the surgery center with my daughter. Same abx protocol - but she did all cefdinir (allergic to penecillin). She was 5 at the time. Since surgery - she's had 2 + strep infections, and a couple of mild flares from exposure at school (this fall it was crazy multiple kids with strep in her class EVERY WEEK!! ugh! AND she lost 4 teeth in a 5 week span in the middle of it!) We haven't seen much of a difference in her symptoms - but she's always bounced out of a flare within 7-10 days of a 30 day course of abx, and hasn't needed proph to maintain steady progress. It's a personal decision based on what you feel is best for your child. Some docs recommend it - others don't unless there is a reason to. Dr. M supported our decision with both kids - because of the chronic strep history. Some parents hav efound their kids have had a serious flare from the surgery, others have found it to be the magic puzzle piece. For us - like I said, I would do it again in a heartbeat because it did help - and with our chronic strep history, it was the logical next step.

Yes - it can be on the skin (impetigo - caused by either strep or staph) and nasal cavities in addition to the places already mentioned. My son's initial onset was from an impetigo infection. Strep in the nasal cavities can be cultured - but a good swab is difficult to get. Both of these types of strep have to be treated with abx as well as a topical abx (applied into the nasal cavity for nasal strep). Our ped has us often using muciroprin up the nasal cavities to be safe whenever we see a flare of symptoms.

Don't know the link but its called Radio Pandas by Marcel Cairo- if you can google it

And is the Pandas Resource Network also a well organized non-profit for PANDAS? I believe they also have a medical advisory board in place as well - which I think adds legitimacy beyond a parents group (however - both are needed!!! The more the merrier!)