nomoz

Vickie, I answered your poll, but to be more specific - my daughter was treated with two rounds of Zithro in January, and her symptoms (both physical and PANDAS symptoms) did NOT subside. Though pneumonia went into high normal range, her mycoplasm IGG's were still at "5" mid February. We did one more round of Zithro, and it just didn't seem to work. She was still feeling under the weather. Missed ALOT of school in Jan - Feb. Once we started Biaxin, we saw both physical and PANDAS symptoms drastically improve within 7 days. Thx. Noelle

Can't Lyme be a facilitator for Chrohn's? I know it can certainly cause problems in the gut.

One more thing on this Sorry guys! I was just wondering about the duration of the bite- My daugther's been bitten two times, that I noticed, by a tick. Both times she was hiking, and both times, they were removed within an 8- 12 hour period, as soon as they were noticed! I was told by the ped that 48 hours on is when to take it seriously. But just seeing a tick on my daughter makes me take it seriously! Any ideas if even short term presence can cause infection????

There may be a genetic predisposition to this stuff - you are so right. BUT, it makes you wonder, why so much PANDAS and Autism now? I still question vaccinations - and I'm always shussed by pediatritions on that one. I think there are several components that must be present.. Obviously, the doctor you spoke of must be extremely closed minded, and won't be in history books as a pioneer of anything except ignorance! BTW, both my father and my brother died of leukemia - my father's was actually a drug-induced reaction (he had high blood pressure, took Atenenol, and developed Aplastic Anemia, which morphed into Leukemia). When I developed HBP and told docs. about my father (and this is noted in his records), some of them looked at me as if I were crazy! One even went so far as to prescribe Atenenol to me! Sometimes, you just have to follow your gut instincts and find doctors who will "listen" - they are out there, and, thankfully, we have Dr. T here... Couldn't ask for better!! Don't know if anyone's posted this link yet, but, how interesting - mycoplasm is a common co-infection of Lyme, and strep is mentioned in the first few paragraphs. Definitely think Dr. T is right about co-infections causing symptoms. Wonder if PANDAS were treated as if it "were" Lyme's disease - what would happen then? (This is my first time posting link here - hope I did it right!! ) Lyme Disease: Causes, Testing and Treatment http://www.ra-infection-connection.com/fre...ticles/Lyme.htm Ó 2005 Karl Poehlmann and Katherine Poehlmann, Ph.D.

There may be a genetic predisposition to this stuff - you are so right. BUT, it makes you wonder, why so much PANDAS and Autism now? I still question vaccinations - and I'm always shussed by pediatritions on that one. I think there are several components that must be present.. Obviously, the doctor you spoke of must be extremely closed minded, and won't be in history books as a pioneer of anything except ignorance! BTW, both my father and my brother died of leukemia - my father's was actually a drug-induced reaction (he had high blood pressure, took Atenenol, and developed Aplastic Anemia, which morphed into Leukemia). When I developed HBP and told docs. about my father (and this is noted in his records), some of them looked at me as if I were crazy! One even went so far as to prescribe Atenenol to me! Sometimes, you just have to follow your gut instincts and find doctors who will "listen" - they are out there, and, thankfully, we have Dr. T here... Couldn't ask for better!!

Thank you, and I hope so, too! Angela, what dose of Biaxin are you using? Just curious. My daughter is on 500mg daily. BTW, she's still awake tonite, back from my sister's (she stayed behind when I left -she was crying and not wanting to be around me - I am often her trigger) and she is really really good right now, eating some chicken soup... I know you all know where I'm coming from - setbacks just kill you inside, because you really want to believe in what you're doing for your child. I do have to say, I think you are right - her body is trying to recover, and maybe the surges are just part of that process. I hope and pray for all the kids going through this, and for their families. I think this forum is a powerful one - a place where we can actually get answers, and more importantly - hope - from one another. Thank you! Noelle

My daughter, 7, has been on Biaxin for just two weeks, and has had really really remarkable progress. She's being treated currently for mycoplasm.. Just last nite I spoke of her here, with fear and hope in hand. Because you never know, from one day to the next with these children. When she woke up today, she had "the look" - the red circles under her eyes, and I kind of felt it early on - not going to be a good day. And it wasn't. On a scale from one to ten of improvement, she measured in at about 3 today. She went shopping with my Mother-in-Law and myself for a dress for her Communion, and flipped out about hating God and how she's NEVER going to receive it. "God is just a big fat idiot" her familiar line returned along with one really loud "JESUS CHRIST" - along with this she acted really really hyper - not really paying much attention or interest unless she really wanted to - and settled down, finally, on our ride home. Tonite, while at a visit with my sister, she started up again, really screaming at me and her cousin. Sigh. I'm just so frustrated. I'm not looking for a miracle here - I know to expect good and bad days. But it was sooo good. And today was all too familiar on the bad side of things. I swear, though, that "look" speaks volumes. That is their body saying "Help. I'm just not right." I wish I knew how to. Thanks, everyone. Noelle

Nomoz, Yay! So glad to hear you are seeing improvement too. Angela Thanks, and so glad you are seeing the same. We had a setback today, and I'm kind of down. But, I understand I should be looking for a sawtooth effect here - waxing and waning kind of recovery. Up until today, things were really really remarkable. Today, unfortunately, the old patterns of behavior took hold while I had her out shopping. "I'm NOT going to First Holy Communion. Do NOT buy me a dress.. I HATE GOD!!" right in the middle of Macy's... Believe me, at this point, I really don't even care what other people think.. but I hate that feeling of old wounds being ripped right open. Just when you think you are on the road to recovery, BAM, you are reminded that this is a fierce and fiery illness, not submitting easily. Sigh. I remain hopeful, just had to vent.... thx Noelle

I agree to that, Colleen. Also, it is so true - this forum allows for accelerated research and provides a learning lab for doctor and parent (and patient). I've just joined recently, and have learned a vast amount. Hope it accelerates finding the wonder drug that stops the whole process from compromising the immune system, too!

My daughter is on 500 mg daily for two weeks - no headache or stomache upset. Sounds like you are doing all you can to keep him comfortable, if these are, in fact, side effects from this drug. If he's doing better overall, though, that sounds really hopeful. Did he test for micoplasm? Just curious if that is why you are trying Biaxin. That was our reason.. And it's working.

My daughter has been on Biaxin for almost two weeks (for Micoplasm - her IGG's were crazy high at 5) and is doing remarkably well. When I see her belly laugh, ahhh.. to me, that is bliss. And she is doing that very often. It's remarkable. She'll be tested again over the next few days to see where IGG's are, among other things, and I'll keep you posted!

How many children, if not all, are exposed to strep, or are even carriers, early on in their development? It's the distinction between those who develop PANDAS symptoms versus those who do not that is baffling, and I'm certain at the heart of understanding the illness better. I believe there is a link here with Autism, but so much is still a mystery about the causal factor in both illnesses. There absolutely has to be an environmental trigger, perhaps coupled with a genetic predisposition (but I don't buy that, necessarily,since how could genetics have erupted into an epidemic?). Something we are doing every day is screwing up our immune systems, and we are passing it on to our kids. What is it? Radioactivity? Plastic? Immunizations? Overprescribed anti-depressant/other meds in parents? What IS it? Once not only the trigger is revealed, but the "cause" for the trigger to act is revealed, therein lies the answer, I think..

Brilliant! And how many of these kids suffer from "belly aches" right before an exacerbation? Most, if not almost all.. Thank God for doctors like you!

Also.. just to add.. and I'm sure you know this, but a skin rash is a possible side-effect of Zith..

Have you seen any docs. in the PANDAS circle? Dr K or Dr T? If your daughter's autistic behavior decreases with antibiotics, her diagnosis lies somewhere in this spectrum, it seems clear. Meanwhile, if your fears are a drug-induced Lupus, can you switch antbx? Also, though it sounds crazy... you wonder if all these illnesses, when treated fiercely, just kind of come to a head somewhere.. hence the fatigue, and Lupus-like symptoms. Is it a necessary evil to improvement? I'm not a doc, just a mom - my daughter has definitely had ups and downs in her recent remission of symptoms.. Hope you find the answers you seek and good luck to you and your family.

My daughter never responded well to amox, and had strep infections while taking it. Her strep was present in her throat cultures, as her tonsils (taken out last year) were chronically infected. But Clyndamycin and Rifampin are two drugs my ped. prescribed, not long term, just to get rid of strep pre-tonsillectomy - and they worked well. Good luck!

So so sorry! What a horror story. I hope you just get him out of there, and I hope he NEVER goes back! These people are not helping him - sounds like they are making matters worse. Dr. K is really spoken highly of here (on forum), and I think you are in good hands with him. Hoping and praying you get solutions and fast!! Dr. T is another good choice if you need someone else to turn to. He's a very very caring person, along with being highly skilled in this area. God bless you and your family.. I hope you never have to go through this again. Noelle

I am so sorry you are going through this. And you certainly hit the nail on the head... it's the waiting that is almost unbearable. You see doctors, make plans, feel you are getting somewhere, and then, when it all starts spiraling out of control, whose hand do you hold? Maybe, in years to come, crisis intervention will becomes a more educated venue to explore, but, sadly, for now, you have to take matters into your own hands. It sounds like you are doing all you can. I hope and pray for all of you that your son's condition improves. My daughter (7) is also sick frequently, just getting over a bout with micoplasm, and is highly symptomatic around times of illness. Biaxin is (crossing fingers) working well at the moment - best I've seen her in months. And days before she started on it, she scratched holes in both my hands, bit me, kicked me, you name it. So there is, without a doubt, something to be said for antbx. Hope there is an answer for you soon. Good luck! Noelle

My daughter's weren't severe when she had them, but there were maybe 7 on her face, and some on her neck - but they really lasted a long time - over a year, I think! Although I hear these are a common occurrence, I had NEVER heard of them, nor did any of my nieces or nephews ever have them.. It's interesting, don't you think? Good luck with both your girls!!

Hi, My non-Pandas daughter had molluscum. I had no idea it was a sign of a weakened immune system. She was taking a swimming class and I had heard that it spreads like wildfire in those situations. My son, who I believe has PANDAS has never had it. However, I can identify with the urination. We have just gone through the entire battery of tests for his bladder issues. At one point they thought he was having kidney failure, but he wasn't. He goes every 2 minutes- most of the time nothing comes out. Did that ever go away for your daughter? I think molluscum can occur on any child - it's just the ones with weakened immune systems are more prone.. Yes, the frequent urination did go away, though, whenever she is sick, her urge to "pee" and the frustration comes back.. but it doesn't last. I have heard that there could be a localized strep infection causing the pressure, or that there is an over-release of a chemical in the brain (can't remember which one!) causing the sensation to pee. I think it may be a mixture of the two - but it's maddening, isn't it? I hope it goes away for him soon. Is he on any meds currently?

Just wondering if anyone has had a run-in with this virus. My daughter had this as a 1 year old, and, of course, though not uncommon in children, this virus is linked to a weakened immune system. Also, could this have been the base for the start of her illness? Was her immune system compromised even then, and did this illness (virus - no course of antibiotics given) begin to steer her antibodies off course at such a young age? Our "waking moment" didn't come until she was 4, when she wouldn't leave the bathroom for more than 10-15 minutes at a time, and if she wasn't "peeing" it's pretty much all she talked about.. That was when we knew (after testing extensively for bladder problems, etc and finding nothing) that we were dealing with something bigger than our daughter. But she definitely displayed OCD like symptoms as early as 2, and always had night terrors and separation anxiety.. just not huge issues until around age 4. Also, for the record, she did have several strep infections and had her tonsils out last year. So, not to change course at all on the PANDAS theory - just wondering if this may add something. I'd love to know how many other children in this category subsequently had the molluscum virus. Thanks!!

IMO, He's only 2 1/2. with or without pandas, dinner should be a fun time and as long as or short as his attention span can handle. Why make dinner time a time where he gets time outs? Enjoy him all you can. They grow up before you know it and leave whatever stage they were in behind. =) (and I'd say that was even more importatn if his happy times are compromised with PANDAS) Angela I agree so much! We have a 7 year old daughter who tends to be hyper even when she's not being symptomatic, and I let slide whatever I can because when she is happy.. well, that is just a blessing. I mean, if these kids are crossing the street compulsively or trying to hurt themselves or really being brutal, illness or no illness, they have to know that their behavior isn't acceptable - but, during those times, they really don't seem to care, do they? So, when they are cognisant, happy and just being a kid - that is great!! Good luck! Noelle

I was just about to add the same comment. If you had this result with steroids, it may be TS. Try meds that are geared for it (ie Tenex) and monitor results. Good luck!