tpotter

Guess what? I was on my way into work a little bit later, and they did another game. I figured...what the heck? Believe it or not...I actually got through AGAIN!!! I never, never, never can get through! This time, it was a riddle about a band or an artist, and gave 3 clues of 3 songs by that group/singer. Since I was in my car, my blue tooth took over (which is fine,) except that it cuts off the radio, and in order to get through, I started calling after they read the clue the first time. So, I didn't have any idea what clues they gave. Of course...my auditory processing (especially with a riddle.) This time, though, I decided that I'd just take a wild guess (I heard them say that it was an artist.) So, I named an artist (as opposed to a band.) They thought my answer was funny, and said that they couldn't figure out how I got it. I told them that I didn't know either. I arrived at my first job in the greatest mood...but I wouldn't have minded the concert tickets. And...you're right. If I ever get through again, and I have to name a song, I'll mention: "Under Pressure." (Oh...believe it or not, my DH was actually NOT listening to the radio this morning.

I was trying to convince my DS15 to sit up and take his pills this a.m. (6:05 am.) It dragged into 6:15 (I had to get ready for work). Suddenly a game we listen to comes on the radio (Question from ######...it's a question about how a certain percentage of people do something, and always has a crazy answer). We always listen and throw in our answers as everyone's answering. The prize for today was Peter Gabriel tickets, and I would have loved that (we listen to the classic rock station.) Well, they read the question the first time, and even though I have slow auditory processing (I have to convert it in my mind to a visual), and went ahead a dialed. OMG...the phone started RINGING! Now, I'm becoming panicked, because I'm not even sure what they asked, and I know I don't have the answer, and of course, there's NO way I could really have just gotten through! Then they answer: "What's Your Name?" "Have you won anything in the past 2 weeks?" "WHAT'S YOUR ANSWER!" That's when I started really panicking. I'm saying to my son: "I'm on...what's the answer." He didn't know what I was talking about, because I hadn't told him that I'd even called. When he finally figured out what I'd said, and why, he throws out an answer (I didn't even know what it was, because it was some adolescent thing.) The guy said he needed an answer now. My tongue started moving, I was stammering, then he put me on hold. I ran to my DH, and yelled..."OMG...I'm no the radio...what's the answer?" Of course, he was still 1/2 asleep, and didn't even know the question. Then guy comes back on, and asks again (I think I had probably been the first caller.) I finally had to say, "I don't know." Luckily, it wasn't the answer my DS15 gave me, although it would have been fun to have been on the radio even giving that answer.

I was trying to convince my DS15 to sit up and take his pills this a.m. (6:05 am.) It dragged into 6:15 (I had to get ready for work). Suddenly a game we listen to comes on the radio (Question from ######...it's a question about how a certain percentage of people do something, and always has a crazy answer). We always listen and throw in our answers as everyone's answering. The prize for today was Peter Gabriel tickets, and I would have loved that (we listen to the classic rock station.) Well, they read the question the first time, and even though I have slow auditory processing (I have to convert it in my mind to a visual), and went ahead a dialed. OMG...the phone started RINGING! Now, I'm becoming panicked, because I'm not even sure what they asked, and I know I don't have the answer, and of course, there's NO way I could really have just gotten through! Then they answer: "What's Your Name?" "Have you won anything in the past 2 weeks?" "WHAT'S YOUR ANSWER!" That's when I started really panicking. I'm saying to my son: "I'm on...what's the answer." He didn't know what I was talking about, because I hadn't told him that I'd even called. When he finally figured out what I'd said, and why, he throws out an answer (I didn't even know what it was, because it was some adolescent thing.) The guy said he needed an answer now. My tongue started moving, I was stammering, then he put me on hold. I ran to my DH, and yelled..."OMG...I'm no the radio...what's the answer?" Of course, he was still 1/2 asleep, and didn't even know the question. They guy comes back on, and asks again (I think I had probably been the first caller.) I finally had to say, "I don't know." Luckily, it wasn't the answer my DS15 gave me, although it would have been fun to have been on the radio even giving that answer.

YAY!!!

Ditto to LLM. I only ended up going down the Lyme path, because we were struggling to get treatment for DS's from the PANDAS docs she already had (mostly due to fighting insurance to pay.) The one thing I could control was going ahead and getting tested for Lyme, as several people on the forum had started to warn about. Well, lo and behold, DH came back 100% positive on the Quest WB (and that certainly matched his symptoms of terrible non-responsive RA that came on suddenly.) Everyone else came back "almost positive" except my 15 yo son who only had one band positive (I now know there are many reasons for that.) I had also been battling Mycopl. pneum for several years (unknown until that time), which can be a co-infection of Lyme. I went ahead and got the appt with a LLMD, and we all started tx. We finally got approval for IVIG, so I started that, too, figuring that they also have PANDAS, and we need to treat the immunol. part. I'm not at all sorry we have done this, because I think it has taken the edge off things, and I have seen excellent results. BUT, our LLMD kept saying he was certain my DS15 had at least Bartonella (a co-infection of Lyme), because of his unique stretch marks, but they weren' responding to anything. Fast forward to about 1 month ago. DS15 started having terrible symptoms related to too many oral abx (follow my posts from about 1 month ago on Lyme.) I fought for, and then got him started on IV abx. The stretch marks have significantly faded, AND erlichiosis actually came back positive on Igenex (we finally did it). Another forum member told me that his symptoms of elevateed liver enzymes, enlarged spleen and low WBC are symptoms of babeosis (another co-infection). Sure enough, when I looked it up, those specific symptoms are listed (very unique symptoms.) I spoke with the LLMD, and he totally agreed (we're continuing the IV abx, but treating for all the above.) I don't know if it was originally Lyme, strep that was triggered by an already weak immune system (both my kids have had repeated bouts over the years with strep, and my DS15 started with his symtpoms immediately following a sinus infection in the ethmoid sinuses or what triggered what. There's no question in my mind now, though, that we are dealing with Lyme in addition to PANDAS. I also know that I had strep constantly as a child, and I remember pulling a tick off my head when I was about 15 that was fully engorged, and had been there for at least 2 weeks. What started what, I don't know. I do know it doesn't matter. I think it's all related, and I would highly recommend testing for Lyme, and keep in mind that many times Lyme does NOT show up positive (even on Igenex), but that you have to look at the symptoms, and find a good LLMD who really knows all this stuff. If the child has bartonella, it can cause other co-infections to come back negative until the bartonella is treated. BTW, another forum member suggested I test for C-difficil, H-pylori and several other things, and my dS18 just came back positive for c-difficil. I would urge the newbies to get on this very fast, and look at everything, and be open to everything. As an immunological disorder, these kids are open to getting everything. It's harder to get it all under control as they are older, as it all starts snowballing on itself.

Find another doctor. We changed 3 times until we finally found someone who was open. Then, about 3 weeks ago, we partially changed again (we'll keep the one for regular stuff, because he's closer to our house, but anything PANDAS/Lyme related, we are using a DAN doctor who just happens to be a family practice physician, because the closer one is just not comfortable treating PANDAS/Lyme I told the doctor in the ER 2 weeks ago, who insisted my DS did not have strep, because his rapid strep was negative, that there are plenty of other places in the body where strep can be hiding (like virutally everywhere)...not just the throat, and that the rapid strep ONLY tests the throat. She didn't know what to respond (I got my titers.) You have to be very very persistent, or change doctors.

WOW! That's great. Ours paid, but only because it was ID, and I still had to show how it was affecting them. Even then, we had to go to a 3rd appeal, and then I caught them doing something they shouldn't have been doing (in the denial)...I can't and won't go into detail, and they finally paid (they also knew I had consulted with an atty, who was thrilled that we might be able to go for "multimillion dollar" lawsuit, because of what they had done. I am thrilled for you. If it was a mistake, don't say anything more...just let it go.

Thank you for sharing this. I'm passing it on.

Why did it have to be reported to the State Health Department?

Right on the mark about Babesia. That's what's so great about this forum...we all give each other the pieces of the puzzle. So, LLMD asked if the dr doing the IV abx could continue IV abx for 1 more month...decrease clindo to 1X/day (higher dose), and then 3X/week do Azith (he was going back and forth on which to do, because of the possibility of babesia, bartonella, and the elevated numbers for erlichiosis...finally decided on azith.) He decided on this time period, because I mentioned that my DS had some things scheduled for the summer, and the current schedule would preclude him from doing some of them. Our DAN dr. (who is prescribing the stuff), said "no problem", so it will be started. What we know: MycoP (IgG) is elevated, but coming down slowly ASO elevated, but coming down. Erlich on Igenex was 20 (means that it might be active, might not be, but he has the symptoms.) stretch marks are fading (they were probably bartonella) spleen does not appear enlarged anymore WBC back to normal liver enzymes dropped dramatically. We know this is autoimmune, because ANA was way high. CamK came back (2 years ago) in PANDAS range. This tells us that there is both strep and lyme/co-infections going on + other stuff (like MycoP, and who knows what else.) But, IV abx, so far (and my fingers are crossed will continue), seems to be the "magic bullet" for now, and then we'll see what we want to do after that. For now, we are happily seeing improvement, and I no longer feel that we need to get PEX (I was positive that he needed it, because it had worked so well last time.) When he went in for his followup to the gastro, he was very pleased, and said that he didn't think we needed to come back, since this was obviously infection related (he's probably right), and our followup with the DAN doctor , noted that my DS looked so much better to him (had his color back, more energy, etc.) I'll keep you all updated.

Wow. You are really right (I just looked up Babesia.) In fact, it sounds like my other son and me, too. I have a followup telephone consult with LLMD this afternoon, and I just wrote that into my notes. Thanks for mentioning it.

I'm so glad your DS is getting better. Did you ever have his ASO repeated? If so, what were the numbers?

I agree with Lyme Mom. It is an ordeal, but one I knew was necessary at this point. I have a followup with his DAN doctor today (the one who prescribed it), his gastro (also today), and a telephone consult with his LLMD tomorrow. The big question is "what next"? BTW. on a slightly different note...I stopped taking abx last month, because my liver enzymes were also going up over a 4 month period. As soon as I did, I started getting thumb pain, numbness and tingling in my hands when asleep, again. I'll mention it to the LLMD tomorrow (I bet he's going to put me back on something,) but does anyone know what that's about? It's really bothersome, and sometimes my fingers are so swollen, I can't get my rings on. I tested negative on the WB (Quest), but LLMD thinks I have, at least Lyme, and I had mycoplasma pneum for probably 3 years, before it was probably diagnosed (only thing that would help was azith.)

I now use Priceline for my hotel stays up there (seeing Dr. B.) and also almost anywhere. I have gotten as low as $55.00/night for a 3 1/2 star hotel in downtown Stamford!!! I always bid for a room. Just keep in mind that you are allowed 1 bid per person per day for a specific option. That means if you have 2 adults going (as the person who's name is on the reservation has to be actually staying at the hotel), and you start by bidding on a 3 1/2 star hotel in a certain area (say Norwalk, for instance), you have 2 tries per day for that (because of the 2 people.) Then, if you don't get the amount you want, you can go back and bid again on a different area or a different start level (say 3 stars.) That just bought you a total of 4 possible bids per day for a 3 1/2 star, 3 star, one location, or another location. Typically, if they don't accept your bid, they may come back with an alternate bid (they might come back saying, that they can't do it for that price, but they think they can get it for $80, for instance.) You have to decide if you want to take the higher amount, or rebid. You can always bid again the next day, so I typically start about 1 week early. Oh, here's another thing. I don't know how many of you are going to be there, but a "typical" room for Priceline is considered for 2 people (up to 4 can stay there,but you need to be aware of this.) After getting the hotel room (you don't get to choose which hotel, just the star level and the location), you call the hotel directly, and ask for what you want in the room (2 doubles, 1 king, a rollaway, refrig, etc.) But, there are hotels in the area (including the Doubletree) that cannot give you a rollaway in a double room...only a king room. Once you've got your room, if you decide you like what you got, you can add on as many days as you booked to either the beginning of the end of the trip, but you cannot add rooms (you would have to rebid, and possibly get a different hotel for just the new bid. It's really very easy, and there's only been one time I haven't gotten my bid, but I was offered an additional amount. Keep in mind, that once you have accepted the bid (without knowing which hotel), your credit card willl be charged, and there is no getting out of the reservation. So, be sure that you are definitely going.

It was this book that gave me my "A-ha" moment. PANDAS had been suggested to me about a year earlier for my DS, and I had also attended a workshop where someone was discussing PANDAS. But, when our holistic chiropractor suggested this book (without telling me specifically why), and I got to the part ab out PANDAS (the girl who was having rages,) I knew that's what I was dealing with. And, we are also one of the families who keeps one family member at arm's distance (actually a little further) because of total lack of understanding (you wouldn't believe what she accused me of!) Good luck, and do what you know is right.

I think the ordeal is a big reason. TPOTTER's son is 15 which probably helps. My son is 13 and could probably handle it now but not so sure when his OCD was a little worse and he was not as mature. Add in smaller veins, risk of infection... I think the above was the response I got from my doctor when I asked. I agree...in part. My DS was 13 when he got it at CHOP. If he had gone in there at 7 with possible ARF, I'm sure they would still have given him IV abx, because he needed the intensity of the medication. The bottom line is, if the oral abx is not working, and like my DS...actually making things worse (pancreatitis, enlarged spleen, increasing liver enzymes), then it may be time to fight for IV. Afterall, IVIG and PEX are not the "safest" things in the world. But, if the child doesn't need IV abx, then I wouldn't suggest it (my DS18 does not appear to need it...he's tolerating oral abx well, and it seems to be working most of the time, along with IVIG.)

I know...I absolutely can't believe it's been that long...and what's more, it makes me so sad at times that we are still fighting this terrible thing (although I think I'm finally getting close to the bottom.) In answer to the question about IV abx. There's no question it costs more, but it also requires a PICC line, and that's not the safest thing for everyone Even then, there was no question my DS could not tolerate oral abx, and the first person who REALLY listened to me when I said that was our LLMD (DS had already had pancreatitis from oral abx last November, his liver enzymes have been elevated for the past 4 months, I wasn't seeing great improvement in symtpoms...just seemed to have a constant underlying of illness, and more recently, he went to the ER with enlarged spleen and low WBC, which indicates infection.) LLMD said (before the spleen issue) that maybe we should finally do the Igenex testing, because that could get him the approval needed for IV abx. Lyme came back negative, but he still had those pesky stretch marks. It was a new dr. that I found out about, because I called to warn a friend who's son is in my son's class that my DS probably had strep, and we were having trouble getting rid of it (the other child also has PANDAS.) She told me about the doc about 45 minutes from here (a DAN doc), because our pediatrician (we shared the same one) was so not willing to treat, even though at this point, my DS clearly had elevated ASO's. We had another trip to the ER, where we found out about the spleen, and the next day, I called the other doc. He got us right in, and he was absolutely fantastic. He convinced me to try a dose of clindomycin for a few days orally, and if that didn't work, he would order IV through home care. It was SO EASY!!! (I think I need the Staple's button now...whoops...am I going to get deleted for naming a company :-)? But, I was positive we needed to try IV abx, because I knew that the only time we had had 100% improvement in the past was 2 1/2 years ago when he was admitted to CHOP for what they thought was ARF. He was there for 4 days, and was given IV abx. 100% improvement for about 1 week! PEX came in a close 2nd for us (90%), maybe because it got rid of the toxins, so it might have worked like the IV abx...getting rid of the infection for awhile...just my opinion. But, he was 90% for about 6 months. IVIG has definitely helped, but only for about 3 weeks at a time, but I'm sure that's because he still had all kinds of other infections he has been fighting. That being said, I definitely think that IVIG is needed following whatever other tx is done, because it helps the immune system fight the illnesses. At this point in time, we are CURRENTLY treating 1) strep (elevated ASO and symptomatic) 2) Erlichioses (postive Igenex, and certainly symptomatic) 3) probably Bartonella (stretch marks that are fading with IV abx), and who knows what else. I have to completely thank those of you (and you all know who you are) who kept insisting that we check for Lyme, because I would never have thought to do it...plus initial symtpoms were following a severe sinus infection. My fingers are crossed, because I really hope we can finally knock this thing out (but I know that it might just need constant fighting.) I do highly suggest, though, that if oral abx are not working for your kids, consider trying to to get IV abx. Like I said, though, it is not risk free (then again, nothing we are doing here is risk free...including oral abx), BUT, for the first time in almost 2 years (since the PEX) my son is really, really feeling decent...not 100% yet, but I hope getting there.

Christina, I'm so glad you found this forum, because you will get plenty of opinions, help, etc. from all of us. First of all, thank your lucky stars that you found a dr. who was willing to look a little further, and accepted PANDAS as a dx. Also, that she was willing to tx with abx. Personally, I would probably get an appointment with an immunologist at this point (check the list at the beginning of this forum...it lists drs.) Dr. B. is in CT, which is probably the closest one you are going to find who is seriously PANDAS literate. He will have you run a bunch of tests, primarily to rule out immune deficiency and some other things, as well. You are right in saying that if it happened once, it more than likely will happen again, because this is an autoimmune reaction to strep and/or other infections (such as staph, lyme, etc.) It's not the strep that's making him react, but rather the antibodies in the brain that attack the brain rather than the strep (autoimmune reaction)(there's a study that was put out by Columbia University 2 years ago, where then found that strep antibodies were injected in the brains of mice, and tics and OCD were the result.) After you have done the tests, you still might want to wait and see what happens. Many people on this forum have used alternative treatment, others still only use abx (although in the long run, many have found that abx alone will not deal with the problems.) Others are at the point of using , anti-inflammatories, such as steroids (bursts or tapers) and ibuprofin, or immunomodulators, such as IVIG or plasmaexchange. If this is starting to make your head spin, it is certainly a lot to digest, but you are lucky that there is so much more known about it now than when my kids got sick (one at least 7 years ago, and the other at least 12 years ago...but we didn't know about it then.) In the end, your best friend is going to be spending a lot of time on the internet, reading like mad, corresponding with people like those on this forum, and trying to get to the bottom of everything that is going on, because this is not just one area of specialty, but rather at least 4 (neurology, immunology, psychiatry and infectious disease.)

DS15 just came back positive on Igenex for Erlichiosis. When I read the symptoms to him from the internet, we both had a "no...duhhh" moment (headache, nausea, muscle pain.) He has had chronic nausea, terrible back pain that even the yoga teacher couldn't get to go away, and excrucitating headaches and it clears with the right kind of abx and also cleared with PEX. Currently getting IV abx (started before we knew Erlichiosis was positive, because he had a very stubborn strep infection (ASO elevated). LLMD also convinced that there's bartonella, even though test results are negative, because 4 sets of stretch marks are fading while on IV abx. Oh...btw...liver enzymes were getting very high (in 100s/200s) while on oral abx. They are now down to 40's/60's since treating with IV abx. I think that may help answer previous question seen (was it on Lyme or PANDAS forum) where someone wanted to know if increasing liver enzymes could be caused by abx. The doctor said that the enzymes may be going down, because we are not giving him abx that are going through the stomach. BTW...also received IVIG the other day, and have extended the 2 weeks of IV abx to 4 weeks of IV abx, since we were seeing so many positive results (I've been keeping a log on it.) Only negative is that I have to keep getting up at 2 a.m. to give him the meds (every 6 hours), and then again at 2:45 to remove it! But, if this is what it takes, then I am more than happy (although terribly exhausted) to keep doing it.

1) Go see a gastroenterologist (I'll email you one here in PA who we use.) 2) Our DS has the exact same symtpoms, only AST and ALT weren't as high (but high enough that Dr. L. was concerned and told us to see the gastro.) 3) Same happened when we stopped all abx, because we were really worried about the rising numbers. 4) DS15 got very, very sick almost immediately. ASO elevated, spleen enlarged, WBC low. We figured the same thing...that abx were just keeping it at bay. 5) Gastro said to use anything except Azith (that's what we had been using.) Yes, there are other abx that are rough on the liver, and with as high as your child's I would definitely see a gastro immediately. 6) Trip to ER. 7) Finally got IV abx...he's supposed to be on for 2 weeks (round the clock...I'm exhausted, because it includes IV at 2 a.m.) But, so far, things seem to be imnproving with symptoms. 8) Rechecked liver enzymes on Thursday. My fingers are crossed, because the IV abx we are using (not azith) is pretty hard on the liver, too.

I wouldn't be at all surprised, because every one of the children I treat with Autism appear to have either significant family hx of autoimmune and/or turn out to be genetic.

In the meantime, I'm moving to Canada... My DS and I were just discussing the fact that he and his brother may end up having to actually move to Canada (we actually were very serious,) because with all their preexisting conditions, they'll never be able to afford insurance, unless they get great jobs with paid insurance!

My DS has liver enzymes suddenly over 100 and 200 (yes, they are that high.) Been to gastro, and being monitored. Currently doing IV abx, because he was positive for increased ASO, plus spleen enlarged (could that be what's causing the rise in liver enzymes?) I need to get the tests repeated this week, but keep forgetting to call the doctor. Thanks for reminding me.

Eileen, Encephalitis should work. I know that your neurologist (same as mine) uses: post-infectious encephalitis as a dx for PEX. Ask her if she'll use it.

From personal experience (with one of my DS's...both have PANDAS), I am beginning to believe that there may still be underlying infection (whether strep, lyme, or something else) if the IVIG isn't getting it. Everytime we tx with HDIVIG (already had 5), he does great, then regresses within 3 weeks.) Then we find out that ASO is still elevated, spleen is mildly enlarged, WBC is low...this al means infection (ASO means strep.) Although we are testing for co-infections, so far, the only thing currently seems to be strep. We are now getting very aggressive with the strep (IV abx). PLUS, we are working on fixing the gut. So, my PERSONAL OPINION (that's all it is), is that you have to find out everything potentially underlying the cause of the PANDAS, and knock it out...then the HDIVIG can do it's job. I certainly hope it's not permanent.