tpotter

Oh...one more thing. these kids can be very good at computers. My 18 yo has managed to "break through" almost every parental control that we've tried (including a physical timer that "locks out" the person when time has run out.) He also manages to break through the security measures at school, but I understand that a lot of kids do that, and it's almost like a game to them! Unfortunately, we have had computer addictions of the years. He says that this last IVIG has helped, though, and it looks like it may have. Good luck.

An addiction specialist spoke at my son's school last week, and he specifically mentioned facebook. BTW, there are other computer addictions, too. Beware.

What a great thread!

Yes, both are on the board.

Wow...I'm glad they found the strep. Maybe I should have my guy tested for that, because he's having a bunch of symptoms (while on augm XR and plaquenil.) Good luck. I'm glad they found it. But, I'm not sure what's meant by if they are carriers then the strep wouldn't be causing the symptoms. And, what about that butterfly rash?

Yes...go back on abx, since they worked, and don't get off them anytime soon. Even if it's a co-infection, abx is usually at the heart of the treatment. Have your pediatrician contact one of the PANDAS specialists (Dr. K, Dr.L, Dr. B.) for suggested protocol. Some doctors are treating this like Rheum. Fever, and the protocol for ARF is giving abx until early adulthood (late teens/early 20's.) Personally, I agree (even though I hate the thought of being on abx that long.) My boys have been on them now for several years (along with other treatment.)

We went through what you are describing for many years (I even had my arm broken, and in order to avoid the questions form the hospital, I told them I was "messing around" with my son, and described the exact position I was in....luckily he's older, and "messing around" would be more appropriate.) Furniture and everything would go flying, and we had to escape the house several times. Dr. K. told us to give him 5-HTP, and we have played around with quantity...we give him 300 mg prior to bed, and we give my other son who has mood issues, too, 400 mg before bed. I think it's helping with sleep, but the reason he said to do it was because PANDAS depletes the body of tryptophan when stressed. That was particularly interesting to us, because we had stumbled previously upon using PEANUTS/PEANUT BUTTER to stop the rages. My son hates the stuff, but we were trying to find something high in protein and fat (fat goes straight to the brain), and he didn't like meat. When my DH went into a rage, getting him to eat 1 T of peanutbutter or a small handful of peanuts stopped it within minutes!!! The hard part was getting him to eat it, because he didn't like it, but I would threaten him with taking away something really meaningful to him (like allowance), and luckily, it always worked. I had to wait for a break in the rage, and sometimes left pb&J sandwiches outside the bedroom. Luckily, several years of treatment (abx and now IVIG) have really helped, but he does start to rage when he's getting sick. Antiseizure meds also helped to slow down the change in mood, so we would have a few more seconds of notice that it was changing, and it also has helped him to become aware of when he's about to go off the "deep end." He runs to his room. As in your case, this rarely happened outside of the home, and was primarily directed at me, but I think that's because I was the primary person to discipline. It's terrifying. Is your DD on abx or any other meds? Oh, and personally, I do NOT recommend psycotropic meds, but again, that's my personal opinion, and based on personal experience with my other son (and based on Dr. Murphy's article.) But, again, I think our biggest success was always carrying peanuts with us, and getting a small handful into his mouth really fast. I would love to know if this works for anyone else. (btw...peanuts are full of tryptophan and fat, and I highly suspect that may be why they work so well.)

Also, try 5-HTP. Dr. K. told us to do that, and one of my kids uses 4 at night, and the other 3. You have to play with the dosages. Also, one of my guys also sometimes drinks a cup of warm milk (which is still seratonin like 5-HTP is. It helps him a lot. The question is...what's keeping her up? Is it racing thoughts, OCD, or what? I know that when mine or in flareup mode, sleep is much harder, but the above do help. Oh...I just also thought about using epsom salt baths before bed. It might help, too.

Yes, it made my father extremely violent, and the doctor pulled him off, after I figured out that it was probably the Seroquel he had just been given in the hospital that was causing it (I have suspected for several years that my father may have had PANDAS all these years, but now he's being treated for Parkinson's) Read Dr. Tanya Murphy's article about SSRI's in PANDAS kids (can made them worse), and even though Seroquel is not an SSRI, I have personally seen where other psychotropic meds made my DS massively violent (he swung a metal pipe at my head in a split second while on Adderol.)

Our vet is phenomenal, and seems to know and accept way more than most human doctors about PANDAS. He's the one who suggested that we treat the dog, when he heard what my kids have (the dog was a rescue.) He also told us about the "killed" vaccine for bordetella, which the dog is required to have in order to board him. The first time we got a regular bordetella, and our younger son got sick from it. The next time, our vet told us that there is a killed version. It's not common to give it, but it's written in big print in his records that our dog has to have the killed version.

Hi...she is mentioned in the helpful docs thread. She has a reputation of being very conservative with treatment (including antibiotics). Overall, CHOP is bad news for PANDAS kids. Dr. Elia seems to be a believer, but b/c she is so conservative with treatment, those on this forum (that I know of) have not found her to be helpful. Yes, we've seen her (I'll PM if you want.) She definitely is a believer, but CHOP is NOT a believer (when my DS was hospitalized for 4 days with SC and what looked like Rheum Fever, the neurologist told me that PANDAS does not exist, and that it is "voodoo.") So, you can see what Dr. Elia is up against. When you mention PANDAS in neurology at CHOP, they tell you it's psychiatric, and call behavioral health. I believe that Dr. Elia is both conservative, and has her hands tied, and some people just won't buck the system. Personally, I believe that if you really believe in something strongly enough, you rock the boat, and be prepared to jump ship (private practice?) But, then again...some people are made for private practice, and others believe they can maybe change the system from within. Maybe, she's one of those, and who knows...maybe she is trying to change it from within. At any rate, she does treat the occasional few, and she does use PEX in those cases (but I believe she may still be using a different protocol than what Dr. L uses.) When she met with us ( 2 years ago), she was talking about putting in a port, and doing it 2 times per week for 2 hours a day for about 3 consecutive weeks. That may have changed, but my son was not accepted for tx anyway (I believe because he had been sick too long.) So, that's what we know. We try not to deal with CHOP anymore. It was too traumatic.

Touche! I just said the same thing to my DH!

Have you had a full amount of immune testing done, and evaluated by an immunologist who really knows what to look for (who understands PANDAS/) Many of the kids on this forum have been found to have either primary immune deficiency or specific immune deficiency, and both are frequently covered by insurance. The only thing is that you want to make certain that the word PANDAS has never been mentioned in your paperwork, because the insurance companies will fight you if it has (not that you can't win, but you will certainly have a fight on your hands.) Keep in mind that many immunologists (particularly allergist/immunologists) do not understand the true impact of specific immune deficiency, and as such, they minimize it. That's why you need someone who knows what it all means.

Have you tested you and your husband? Turns out that I was the "canary", as I had mycoP pneum, and had given it to everyone else. I would suggest that you test everyone in the house for strep and mycoP pneum.

Very, very interesting. As one with gluten intolerance (I never tested positive to celiac, but I can't tolerate gluten), the blocking of IL 15 sounds wonderful. BUT, ONE MORE VACCINE????? Maybe part of the problem is that we turn off the immune system in this country by over-vaccinating, and then when something comes along for the immune system to fight...we can't fight it. Oops. Here I go again on my soapbox.

I didn't know you had narcolepsy. Did you, by any chance, have a flu vaccine...EVER? The reason I'm asking is that I saw the news last night, and they said that some teenagers are getting narcolepsy from the flu vaccine!!!! Then, they went on to say that "it still helps more people than it hurts!" Can you believe that?

I don't think that Dr. L. denies the presence of Lyme in these kids. We talked about it last time I was there, and I did not get the sense she questioned it. She asked who we were seeing?

Very interesting. I went in for a chest xray (to rule out pneumonia,) and they found a mild myocarditis! I'll have to mention it to our LLMD. BTW...I didn't test 100% positive for Lyme (on the WB), but was diagnosed clinically by the LLMD. Everything is appearing more and more like he was right (I'm currently on 2 abx...1 for Mycop, which was my first diagnosed symptom.)

]Honestly, when his homework goes in a mess, with spelling errors and unfinished, I hear her in my mind saying he "respects" her and wouldn't do that for her. I think she either assumes I'm not watching him do his homework (which is sure what it looks like sometimes) or just not effective with him. It ticks me off because either way, she obviously doesn't get it. I just don't know if I'm better off just getting through this year or pushing it. I tend to think just get through it since he DOES perform well for her. Sounds an awful lot of what we went through when we arrived in PA with a "working" 504 from NY (he'd been on the 504 plan for 1 year before we moved to PA,) and the teachers, staff, psycchologist, principal, etc. said there was nothing wrong (interestingly, though, the teacher wrote an awful lot of detail in his progress report, that helped us with our 3 year Due Process battle.) But, here's what I would suggest: 1) Do NOT do the homework with him, but definitely save it. When she brings up the fact again that he's an angel for her, and does everything, show everyone the stack of papers. It is NOT your responsibility to catch him up on work that you made very clear could not be done for whatever reason, and the fact that you told her and the team that this was potentially a problem, indicates that the 504 plan needs to be modified to include this issue, too. It is not reasonable to expect him to have to catch up now. 2) Consider asking for an IEP if necessary. They are supervised by Special Education, and is not at the will of the individual school, and at the interpretation of individual teachers. 3) Make sure you save every single piece of paper, correspondence, etc. I would highly suggest you email as much correspondence as possible, because then it is in writing. We know of one boy's family who was burned in Due Process, because the boys grades were changed from F's to A's (and they didn't save his report cards.) On the other hand, we saved everything, and it was a very, very nasty case, BUT....the district finally settled with us in the end, because nothing could slip by. My son is now on an IEP, but it was hard won, and we had to pay for private school for awhile (other families we know homeschooled while they dealt with the problems. 504's are very tricky. They are good when the problems are relatively simple, but PANDAS is such a complicated issue, and the children are constantly changing. Good luck.

My son has Asperger's, but I firmly believe that it was PANDAS along. Now that he's 18, though, there are so many learned behaviors. But, interestingly, I believe that his social skills have improved from about 7 years - about 12 - 14 years old in the past year. He got PEX in September '09, and he started getting IVIG every 8 weeks Nov. '10 and then again 2 weeks ago. So, I do believe tx is helping. BUT...there are still so many learned behaviors.

You are so in my prayers. My son has been almost where your son is, but he wasn't refusing meds. But, I so feel for you. Believe that this nurse was sent to you, because she offered to take that extra step.

I'll pray that the IVIG works for her. Let us know how it goes. Will she be getting it just the one time or is she scheduled to get it more?

Also, if you're not accepted for the study, I think you should see a good immunologist, like Dr. B., who knows what he's looking for. If he finds an immunological deficiency, you may have a much easier time getting insurance to pay. I will keep you in my prayers.

If you child has primary immune deficiency, the the tx is every 21 days. BUT...most of our kids are being treated for either specific immune deficiency (e.g. strep titers are very low,) or for autoimmune deficiency, and that protocol is different. Dr. B's PANDAS protocol is every 8 weeks for several months depending on the child's needs and how s/he responds.

I also found the same info, and it was a very major concern to us. In the end, after getting everyone's feedback, my DH and I decided that we would go ahead and try him, stick with the abx/cocktail approach (he has prescribed some additional supplements, too that we have agreed are necessary...B12, probiotics, D, etc....but mostly based on blood tests.) We like the fact that he is willing to dx clinically in addition to lab work, and we didn't get stuck having to have all the expensive testing done, when it might have been false, anyway. He is very reasonably priced (at least out of the Stevensville office,) and like I said, we just decided we were going to go the abx route only, unless something else made sense to both of us. We have refused to do one or 2 things he suggested, gave our reason, and he wasn't thrilled, but it was ok. So, I would definitely still go.