tpotter

I'm PMing you

Oh...one more thing. Dr. L uses Augmentin XR 1000 mg BID. I would mention it to your doctor. Augmentin XR worked so much better on my kids than straight Augmentin, and we also used the higher dose (I think it's the Saving Sammy dose.) We don't currently use it, because we're using so many other meds for Lyme, MycoP, etc, but I just thought I'd mention that.

I so totally feel for you. We've been through very similar stuff, but were able to control the rages without calling EMT (barely several times, and for some reason when I would start to cry, the attack would stop long enough for him to run to his room. I'm SO glad your pediatrician is actively involved. That is fantastic that he is calling Dr. B. and Dr. L (although he might not hear back from Dr. L, but at least he's trying.) Dr. B. will call back. Here's another suggestion in the meantime. Dr. K. suggested that we use 5-HTP, and we still use it religiously. When I try to decrease the amount I give each of my boys, they get worse. 5-HTP is tryptophan, which is a precursor to seratonin. We give my 17 yo (oh lord...he'll be 18 on Thursday!) 4 each night, and my 15 yo gets 3 (I can't remember what happened when I gave him 4.) But, it also helps them sleep. Alternatively, I've suggested this before, and I'm still waiting to hear back from parents who tried it (PM me with results, because I'm really curious if it works for you guys, too.) Peanut butter is full of tryptophan, and I have found tremendous success with 1 - 2 T of peanut butter or 1 small handful (enough to fit in his mouth) of peanuts as he's going into a rage. My 15 yo HATES peanuts, so there's no way this is placebo for him. When he's already in a rage, I have to wait until he calms down...even for a few seconds, and I threaten to take away something important if he doesn't take it immediately. I swear, he's back to normal within 3-5 minutes. If he's not 100%, I give him a 2nd "dose." After my 15 yo got PEX last year, he was able to discern between his rages and extreme anger (the latter he can control.) He can now tell us when he's going into a rage, and runs to his room. He said it is a huge adrenaline rush, which is what I totally suspected (especially since he is able to lift both my husband and me off the floor simultaneously, and remember nothing about it.) But, there's also probably one more thing you have to check out. These could be seizures, too. Fronto-temporal lobe seizures can cause this kind of behavior. My son was found to have abnormal brain waves repeatedly, but the behaviors never showed up during the abnormal brain waves. PANDAS affects the frontal lobe of the brain, so there's some suspicion that these may not be true seizures, but never-the-less, seizure meds have helped decrease (even slightly was better than nothing) the intensity of the rages.) At least now he's aware of when he's having one, where as before the seizure meds, he sometime didn't remember. So, even if Dr. L can't see you, you probably should have an eeg done (I would recommend possibly in the hospital for a few days, because of the risk involved, and you also want to make sure you catch the events.) Good luck, and I will very much pray for you.

Yikes...Bicillin every 4 days? My son was herxing like crazy for 2 weeks after the 1 bicillin injection! He's on bicillin injection every MONTH for (I think) 3 months...maybe 4. Plus, Azith for PANDAS and MycoP, and he's supposed to have started flaggyl 1 week on/1 week off 2 weeks ago, but was begging me to let his body rest. I'll start the flaggyl over vacation (after we return from vacation.) He's also on diflucan for yeast, and takes sacchromyces boullardi and probiotics, plus takes bentonite clay (when I remember to give it in time). Oh...I almost forgot...we're also doing IVIG every 8 weeks (had #1 so far.) Sounds like they are treating your son maybe too aggressively? Mine ended up with pancreatitis when doxy was added in. Be careful. Personally, I'd rather slow things down a bit than throw it all at once (we're also treating all 4 of us in the family, so I don't think we couldhandle it any more aggressively. Good luck.

I noticed you mentioned that her meds were decreased. Maybe she has an infection. Dr. K told us in the past to increase meds if symptoms returned. And, I agreed with possibly trying the ibuprofin that Vickie suggested. Also, if you're in VA, what about Dr. L? There's also an immunologist in Charlotte that I've heard mentioned. Good luck.

I'll weigh in, too. We were in the same boat. We had fought long and hard for the IVIG (HD), after a really horrendous year (my kids have been sick 7 years (my 15 yo), and at least 16 years (for my 18 yo...we've managed to date it back at least that far.) Both have had PEX (last year,) and my 15 yo also had IVIG 2 months before the PEX. While we were fighting for the IVIG this year, I was going out of my mind unable to get anything to move forward (not just the IVIG, but other things, too.) So, I decided to do the one thing I had control over...make an appointment with the LLMD on the "off chance" that maybe we had Lyme. Well...we do have it...everyone in my family. My 15 yo tests completely negative (except for IgG band 41 on the WB...even his CD57 is well above 100!) But, he is herxing worse than all of us combined, and the doctor thought that marks on his arms might be cat scratch marks of Bartonella. But, we got the approval very shortly after starting Lyme tx, and I wasn't going to ignore that. I firmly believe that my boys' problems are autoimmune, and their CD3 is through the roof (32 and 84...yes...84!!!) both had low titers for strep pneumonia, as well. So, we took the chance. It's been incredible...the change in behavior for both, but especially my 18 yo. The 15 yo was doing great, but is really, really struggling. I'm not convinced, though that it was the IVIG. In fact, he had a pancreatitis attack a few days after the IVIG, but the ER doc, and the GI doc who we just saw all agree it's probably one of 2 abx and/or one of 2 seizure meds. We pulled him off the doxy (with the LLMD's approval,) and are changing course. But, I'm glad we've done the IVIG, and we will do it again. We're scheduled in January. Again, that's just my opinion. Remember, every child is different, and in the end, you have trust your own gut.

The Cunningham test is still in the "research" phases, but she has an open trial, and it is definitely becoming quite well accepted by many of us PANDAS folks. For my family, it made the final differentiation between bipolar and PANDAS (we also ruled out bipolar by trying meds that didn't work,) but the doctor finally accepted PANDAS and treated it as such, because of the Cunningham test results. I am very glad I did it, and spent the money, because now we are as certain as we needed to be to go in the PANDAS direction, and are getting him the help he needs. The test costs $400, but it is a donation (to the OU Foundation,) so it is tax deductible, and the end cost is considerably less. Personally, I'm very glad we did it...it cleared up any doubts in ours and our doctor's minds. Good luck, and keep in mind that you might have had PANDAS, and that's the cause of your tics.

Our never did the prevnar, given the fact that we've had too many really serious reactions to vaccines, and our immunol. said not to do it. I would highly suggest that you get your insurance company's policies on IVIG approval, and read it very carefully. Ask your dr. what the actual diagnosis is, and see if it's listed. Then, make sure that you address all issues that they say to address. The fact that you revaccinated, and still failed, will probably result in an easier time getting IVIG. Good luck, and keep us informed.

You are so welcome. That's exactly how I felt when I found this forum, and found that all the symptoms that I had been keeping a log on, and telling doctors about (most thought I was crazy, myself) were being seen in so many kids.

I will definitely let everyone know. I think that's the best part of this forum. We are all figuring it out together, because no one really knows for sure what will or won't work (including the doctors.) So, we all have to take the information that's out there, and decide for ourselves what is the best option for our own children.

I agree. And, we are constantly disagreeing on this subject. I think he likes to try to make life "easy" by just believing what he is told, but after everything he keeps seeing with our own kids, it surprises me that he is still sticking to his stand on "vaccines don't cause autism" (although I think he does believe that our kids certainly had a reaction to them...my DS 17 actually broke out in hives from the MMR vaccine when he was 18 months!) Most recently, I mentioned to him about my feelings that vaccines are definitely contributing to autism, and many of the symptoms I'm seeing in my practice, and used one example where a child was bouncing off the walls. He said he had just attended an Autism workshop at work,and someone from the Autism evaluation/tx center at a local (well respected) facility in the area was speaking. Apparently, she refuted that vaccines can cause or contribute to it. I blurted out: "That's XX!" The discussion ended

WOW! I treat 2 children who I have seen, personally, go off the deep end following flu vaccination (I was at a quarterly meeting the other day, and another therapist commented: "do you remember what he was like after the Flu vaccine?" So, others were seeing it, too. I was busy handing out websites for everyone to see what PANDAS/PITANDS is all about. Then, 2 weeks ago, a mom of another child on my caseload called to tell me she wouldn't be in that day, because she was having the flu vaccine. I was VERY concrerned, because this child is actually diagosed with PANDAS-like symptoms (that's what her pediatrician came up with, but at least she got abx. I have to be very careful about what I suggest to parents, A few days later, the entire family ended up in the ER with upper respiratory symptoms, and the one child was hospitalized for several days. When Mom called me, I suggested that she start keeping track of increased symptoms and anything that has just happened: vaccines, illness, etc. At that point, I told her about my own children who had become extremely ill from the flu vaccine, and several others, and that we had been told by our docs not to do any more vaccines (granted, my kids have already had their "basic" vaccines...they're older...so the damage is done...one is on the spectrum.) I told her that others have had trouble with the flu vaccine, too, and suggested that she read up on several things, including checking out this website to make her own decisions, and to have a better idea of what to talk to her doc about. This is so frustrating. I keep having this same discussion with my DH...he keeps insisting that the vaccines don't cause it. I'll give him this article. [

We did both. We had just started Lyme tx that month, and insurance approved IVIG after a long and bitter fight. Dr. B. felt that IVIG could help the Lyme, and we also asked the LLMD. He said it wouldn't "hurt". Personally, I believe that my boys have both PANDAS and Lyme, and given the fact that there is a documented immune deficiency, we really have to treat both. Could it be better to treat the Lyme first...I don't know, but insurance probably wouldn't have waited that long, anyway. Honestly, I do believe the IVIG is important to do, because it helps the immune system fight off new infection, as well as the LD, and anything else our poor kids have. I haven't seen any negative from doing both. We will be going in for our 8 week 2nd IVIG in January, and Lyme tx is continuing.

Thanks for the suggestion. I'll ask my DS if he wants to try starting the Flaggyl now. He'll probably say "no", but I'll tell him what you all said. He's not going to have a lot of time over the vacation, because we're going out of town for most of it. We were supposed to go in June, but both boys were in a very bad "state." And, yes, the school is being very supportive. They just asked for a letter from the dr, about not always being able to get homework done, and for absences, and that was no problem to get.

Dr. B's office has a deal with the DoubleTree Hotel in. Call his office and ask. They'll give you the name of the person to contact. It is 1/2 price! The hotel was quite nice. And VERY convenient. Alternatively, you might want to consider a website like Priceline to name your own price. I used it the other day to go to Annapolis, and got an amazingly low price (let's just say it was about 60% less than the "discount" prices on the internet, and we stayed in a very nice hotel. I'd look into both options.

Our LLMD put him on Bicillin, because he got pancreatitis probably from the doxy (which we pulled him off of) 2 weeks ago. The symptoms have stopped. We were told that it should get less each time. I'm still deciding whether or not to put him on the flaggyl this month or just wait until next month, but then he gets another bicillin injection, and then another dose of IVIG (2 months from the first.) He definitely seems to be getting better...much, much better moods overall.

Did he keep telling you how there are "no" really side effects? We use 5-HTP, and up the dose when needed. 5-HTP is tryptophan, which I would think does the same for the seratonin effect. Also, when my DS 15 was going into rages (he actually hasn't needed it since getting IVIG last month), we always gave him a handful or 2 of peanuts (which he HATES, and we had to fight to get him to take it.) It always stopped the rages. Peanuts are full of tryptophan, and fat which goes straight to the brain (my theory.) It has always stopped his rages within minutes! I bought the trazedone, but really, really don't want to give it to him. My DS has been suicidal in the past (I suspect it was PANDAS, because it started with a really bad case of OCD), and we don't need to trigger anything now. But, I also know he's going to get on my case when we go back if we haven't tried it. Do any other docs recommend it?

Our LLMD wants my son to use it, and I am wary. I didn't start him on it last month, and got "talked" to . My understanding is that it's supposed to calm him down, but I was told there aren't any major side effects. My son freqently reacts to medication opposite the normal way (Benedryl makes him hyper.)

I want to add one more thing to what everyone has been saying. My DS (like Worried Dad) also became suicidal (luckily stopped when abx), but we had to end up hospitalizing him for his own safety (it was a nightmare, and I don't think did a thing in the end.) But, some, if not all of the suicidal ideation, may be from OCD. At the time I didn't know it, but now I do. He would say that he "kept feeling like I have to jump out the window." He was actually hospitalized, because he "felt like jumping in front of a train or into traffic." The only thing that kept him from doing it, was that somewhere in the back of his mind, he knew he could die, and didn't want to die. Luckily we had another DS with more classic symptoms, because otherwise we would never have know that our DS (then 15) had PANDAS, and not a "typical" psych disorder. Definitely...take him seriously

If anyone needs a good gastro in the Philly area, you can PM me. He totally understands PANDAS (doesn't treat it, but totally "gets" it,) and even knows Dr. L.

If it's really a memory problem, and you don't think it's OCD, you might want to consult with a ped. neurologist. It might be seizures, and I would want it ruled out if it was my child. One of my kids has seizure activity (although the neurologist isn't certain if it's related to PANDAS or truly seizures,) and I've heard of others on the forum with similar issues. My son would complain of "blackouts", and that may be what's happening to your son. For instance, he would be sitting in class, and the last thing he remembered was that the blackboard was empty. All of a sudden it was full of writing, and he remembered nothing in between.

No. This morning was a good one (yesterday was pretty rough), but he was going on the trip to NYC (they're going to broadway, Rockefeller Center, etc.), and he was pretty pumped up. It will be interesting how wiped he'll be this evening, but the kids don't have to go to school tomorrow. I'm really hoping that things keep improving, but I'm also really scared to give him the flaggyl. Thanks for asking.

Actually, I don't think he herxed the first IVIG...it was more like it just stopped working (never got better, and finally got PEX 2 months later.) He seems ok today, and is going to talk to the director of the school to make sure he and his friends are not put on the same bus with the very sick teacher (the teacher described himself as being "very sick," and my son said that he was sneezing and coughing all over the place.) There's at least one other boy at the school with PANDAS (his mother told me), and my son came home the other day, and said that he really thinks a girl in his class has it (she suddenly started tic-ing.) So, he's afraid he's going to get even sicker, and he's just very frustrated. He's going to tell the director of the school how hard and painful tx is, so he really needs to be "protected." I'm really proud of him for speaking up.[

Absolutely stay on the abx. Dr. L.'s policy is until early adulthood. Many people lower the dose, and then raise it when the child gets sick. My kids couldn't do that, because they would get sick immediately. I am so happy for you that you have answers.