thereishope

In regards to chemo, that greatly compromises your immune system. I don't know how long it takes for the immune system to "heal itself" after chemo is completed. When a child gets vaccine like chicken pox, it is specifically said that a child should not be living in the same house as an immune compromised individual (like one receiving chemo), but I can't remember the time frame. Maybe 6 months? That is soley a guess. Like others have said it is hard to know what else can make certian numbers rise. This is still in a research phase. She can try calling/emailing Cunningham's office and perhaps they can explain things better. When she sent in the kids' samples, did she supply them with a health history of the kids? She can do hings liek take the kdis in for strep tests to make sure they are in the clear. I would alos think it would be beneficial to either see a PANDAS expert in person or via the phone. Both Latimer and Dr K will be speaking at the Autism One conference in May. For that reason, I would pick one of them to seak to. Perhaps they have more info than what we are aware of. What I would be curious is the start a thread for people with a diagnsois of autism and PANDAS to list their symptoms and test results and compare yoursleves as a subgroup. That may provide insight as well.

For the record, I have not seen any of them. This is the comparison as I've seen it on this fourm.Please anyone correct any misinformation... Dr K is in Chicago. He gives a 5 day steroid burst. Does IVIG. Takes some insurances? Returns emails in a timely manner. Dr L is in MD. She may give a month long steroid. Does IVIG and PEX. Office visit not covered by insurance but because IVIG and PEX are done at the hospital, some have gotten that covered. However, for some, she has been hard to contact for questions. Dr T is in NJ. I really don't know much about him but I like the fact that he seems open to discussions. He has even posted on this forum. I think that says a lot about his character. I believe he gives a 5 day steroid burst. I think he does IVIG.

I think some doctors (Dr K, D L, Dr T, and more) are willing to give a diagnosis of PANDAS based on only one known strep triggered exacerbation because they have seen enough kids to know what it looks like. Especially when it is closely connected with strep and improvement after abx. They are comfortable with their diagnosis. I don't really have a problem with that. My son received his diagnosis after the first exacerbation. It was pretty cut and dry. Normal child. Then not normal child. Wait he has strep! Abx started. Saw improvement. Unfortunately we went on to fulfill the more than one time rule and had 3 strep triggered excaerbations.

Do you know what you are going to do? Can you somehow find the funds yourself?

I wonder what Swedo plans to do with the PANDAS stories PANDAS Network will eventually compile for her to review, per her request? In this study, I don't know how they will ensure if the child diagnosis of PANDAS is correct. I would think they meet with the child and parent before they begin to go over their health history. I think I read early on when my son was sick that technically a diagnosis of PANDAS could not be given unless the child experienced strep triggered exacerbations more than once. That is why it may still be considered rare. They have to wait for kids to get sick more than once and have it all documented before getting the official diagnosis. But, again, I don't know what the study requirements for PANDAS is.

Unfortunately, I think sometimes it really ends up being a power kick for some doctors.

Yeah, I'm the geek now. I just admitted that I watch my computer defrag itself. It is addicting to watch, though:)

If it means anything, my son did not do high dose Augmentin, but I did notice through his recovery he would be improving then I would see a setback wthat would last a few days. Then the odd thing was he would eventually "snap out" of the setback and not only be back to where he was pre-setback but even slightly better. I compared it to watching a computer defrag itself. If you've ever watched a computer defrag itself, it reorganizes info to make it work better and faster. During the process so much gets shifted around and to the human eye it doesn't make sense what's going on. It takes a long time to completely defrag a computer, butin the end it's works better and faster. I can see the brain being similar.

Blue Cross Blue Shield for another IVIG? Did you appeal it on your own or with a lawyer?

No, I don't know anything about an Augmentin study. Perhaps I will email them back and ask. I am ready to go head on with Cinci Children's. If they got their act together, it would change how pediatricians in the area view "treating" PANDAS. But everyone, even w/in the hospital itself, refers to Gilbert. To them, he's god. One thing to do is I want to put together a packet, perhaps similar to a media packet. It includes things such as Buster's suggested NIMH revision, FAQ sheet, etc. I want to send this to local docs. It's a way of informing without being too aggressive to the point they become defensive.I also want to start the process of contacting local media outlets again.I live in Cincinnati so I contacted the Enquirer a long time ago along with the local, free family magazine, but never heard back. With all the publicity, I need to contact them again.

Take a deep breath and see what the culture is and take it from there. If they don't call you, call them to verify the result. Did the rapid come back negative? How did these people get their medical degrees?

First off, take him to urgent care or call and switch peds tomorrow! A new ped can see a new patient for a ill child visit w/o vaccine records. Now, if you take him to urgent care that if the rapid comes back neg, the culture results are sent to the ped's office. That's how ours did it. The only way to get my culture results was by calling the ped's office. Just be prepared if that's how yours works. Bt, then you can get the results through the nurse and never talk to the dr. Kids most definitely get strep w/o symptoms. It's actually common for PANDAS kids. Maybe this was what you needed to get in gear to find a new doctor. I had a defining moment that I finally yelled "That's enough! I need a new doctor!". I found a new one that day.

Gilbert and my family have split ways. I truly try to keep negative things to myself, but he is confused and needs to figure out what he stands for and embrace it. The second my son had a huge setback due to allergies(which was only a couple weeks after a + strep test), Gilbert sent us on our way to the psychiatrist. I was then able to prove the direct connection but he didn't want to hear it. "Call me if he gets chorea" was the last thing he emailed me. I've tried to make nice, but he just stopped returned attempts to contact. So, no I do not think he will ever be on board unless a true revelation and urge of independence comes his way. Like I've said before, we don't know what goes on behind closed doors. Now that I stand here over a year since my original meeting with him and full of much more knowledge than I thought possible, perhaps some day I wil revisit him. whether it be through email, phone, etc. Let him know how my son is doing and just get rid of all the baggage I've built up over the last months towards him. But I'm always polite. Afterall, maybe, just maybe he will turn away from the darkside:) No, my son is not part of this study. He is dong very well, even with a current sinus infection. No PANDAS symptoms right now! He wouldn't even qualify if I was interested:) It's just amazing.

I think it's important to remember that everyone is in different situations. If you are someone who cannot find a doctor to prescribe a prophylactic antibiotics (and there are those out there with that problem), you cannot travel to the handful of doctors that do help PANDAS kids ( but you live close to or in FL), you do not have the funds for out of network docs, have a high deductible you honestly cannot afford to reach, or not have the funds to pay for a doctor that does not accept insurance, if you are at your wit's end....it is may be something to look into. If you are in that boat, it doesn't mean you don't love your child, it doesn't mean you are uneducated, it does not mean you're priorities are messed up. For the record, my son is not participating in this study, but I don't want to judge those who choose to partake. Afterall, we will learn and eventually, hopefully benefit from this research. So, granted if you choose to inquire, I would make sure your child is strep free, ask loads of questions and hopefully be brave enough to even post here and ask for help thinking of questions. For some the 50% chance of getting the antibiotic is worth looking into.

I recently contacted Dr Murphy's office about her PANDAS/Cefdinir study. I heard they were in need of participants and I offered to post the study info in case anyone is interested in taking part. Dr Murphy is located in Florida. This is important to know since some in-office visits are required. I only know what I am posting. If you are interested, please contact Jeannette M. Reid. Her contact info appears at the bottom. So, I am cut and pasting the response as to not omit any information... "The study investigates the use of antibiotic therapy in reducing symptoms presumed to be due to PANDAS. Children must be aged 4-13 years, with dramatic onset of OCD; anxiety; and/or tic disorders within the last 2 years. Children must be off other antibiotics for 1-2 weeks before starting the study. As well, a failed ‘correct’ trial of an antibiotic in the past is an exclusion criterion. (A correct trial is one at the right dose, and lasting at least 14 days.) The study will require 6 study visits (approximately every 3 weeks), which should each take 2-3 hours – as well as two follow-up phone interviews 1x/month. In the study, children will be randomly assigned to either an antibiotic (cefdinir) or placebo (an inert sugar pill)…so, each child will have a 50/50 chance of being on the antibiotic. Only one person involved with the study will know each child’s group, though the family would be informed at the end. While each child will, ideally, be able to complete the study, if there is no improvement by visit 3, Dr. Murphy will discuss pulling out for a different course of treatment. The study is free of charge – but out-of-study treatment would not be. Thanks!" Jeannette M. Reid Social/Behavioral Researcher Department of PediatricsUniversity of South Florida e-mail: jreid@health.usf.edu office phone: 727-767-5583 Mailing address: 800 6th Street South 4th Floor North, Box 7523 St. Petersburg, FL 33701 Rothman Center phone: 727-767-8230 Rothman Center fax: 727-767-7786 http://health.usf.edu/medicine/pediatrics/...ndex.htm "

Thank you for posting. I'm so happy to hear your son is well.

I'm sorry you're going through this. I have a few questions....When you went to the GI doc, did they do a stool sample for strep? Did mom and dad go and get swabbed recently? Have you tired Ibuprofen to see if it makes a difference? Is the chorea sudden onset? If not, when did you first notice it? Do you give her probiotics? Along with the Ibuprofen, you could start giving her some Omega 3's to see if that helps with the OCD.Myabe cut out milk for the time being as well.

I am a strong advocate of following your mommy instinct. As you read through posts on this forum, you will see that many parents , in hindsight, realize or wonder if their child actually exhibited PANDAS prior to the explosive, sudden onset exacerbation that caused the red flags to go up. That perhaps their child's real first PANDAS manifestation was just excessive sepationanxiety, emotional liability, frequent urination, etc. If you wonder it, follow your gut and search out an answer. Perhaps IF she does have PANDAS you will catch it early and you won't have such a rough road ahead of you. Perhaps subsequent,much worse exacerbations can be avoided.

My son never had tics. Here's thread you'd might like to read. A lot of people responded whether their child had tics, OCD, or both. http://www.latitudes.org/forums/index.php?...ic=5220&hl=

I pulled up that t and a thread and poll if you are interested... http://www.latitudes.org/forums/index.php?...ic=5488&hl=

I'm a little confused. maybe it's too early to be reading this. Peg, what did removing tonsils do? Did it worsen it?What was her status prior to surgery. I know you said at that point you were aware you were dealing with PANDAS, right? For others who are new, t and a surgery will not cause PANDAS. Perhaps in some it may lay a foundation in some way that it may resurface but choosig surgery does not actually cause all this to begin. Also, my son did have strep a month after surgery, but he also eventually recovered from that exacerbation. He has been strep free since march 09 now. That is after getting strep 3 times w/ 6 months along with follow up negatives in between to make sure it was gone. I don't know if surgery, for him, aided in him not strep a again so far this year. I just know I'm happy he hasn't had strep for 9 months. So, like I said previously, if it something you are considering, stop and look at where your child is in recovery. 1.I would suggest they are recovered from their last exacerbation. One that helps with how they deal with the experience and if they have another one following, it will be on a healed brain and body that is ready to fight an infection in the event a setback were to occur. 2.Have IV antibiotics during surgery. 3.Long term,stronger antibiotics following surgery. 4.Try to so surgery during the summer while school is out and it is not strep season. 5.Maybe, for a time, keep up with regular doses of Ibuprofen post surgery to limit any inflammation that may occur. 6.Hm, I wonder if adding a swab at the 2 week post surgery period would be beneficial too. I'm not promoting t and a or saying it is a mistake. I just want to share what I learned form it. There a few things that I would do differently that I did not do on that list. A couple months ago I did a survety on here on setbacks following t and a. If you'd like me to pull it up, I will.

As for the appt, my then 5 year old was the same. 4 nurses and his dad to get a throat swab. All I can say is to be honest with your son and know there will be a fight. Trust between parent and child is important during this. Don't lie. I am so sorry that is my "advice" but sometimes it's going to be that way. We did usually go for ice cream or something afterwards. But the great news. Now that my son is doing well, he "allows" them to swab his throat without kicking, screaming, ect. He even opens his mouth. Granted, he'd rather not have it done, but wow, what a difference. He's 6 now.

I don't want to scare the mom, but even if it is OCD related, it may be acted upon. look at hair pulling, picking, BDD to the extent of dramatic cosmetic surgery, etc. Those are OCD spectrum disorders and they are acted upon. I agree, do tell the mom to take her for a strep test. There's nothing to lose by doing it, but a lot to gain if it comes back +.

Well, what I learned from our experience is to wait until your child is healed from their last PANDAS exacerbation, if possible. The question is why some kids end up having strep and an exacerbation shortly after surgery. One person gave a great theory that it is the anesthia that opens up the BBB. This makes sense when yo ualso take into account those having exacerbations following getting laughing gas at the dentist. Another person thinks kids may be getting exposed during surgery. So, you would want to request IV antibiotics during surgey and good antibiotics post surgery. Not the regular 3 days post. I would alos include waiting until summer, again if possible.That way if something happens and an exacerbation occurs, so don't have school issues to deal with for a few months.

How old is the child? With cutting, I would think the child is experiencing a lot of anxiety and the cutting is the way to release it. The person also think they are getting control back by mutilating their body. I agree with all others, that it needs to be professionally addressed. Even it ended up being PANDAS related, you don't want the child to have permanent physical scars of the ordeal/disorder. Actually, I wonder if cutting is an OCD spectrum disorder?