tpotter

Good luck. She will probably have them back to you in about 2 weeks. We just redid one of my kids blood work, and it's elevated again (certainly explains the symptoms, and helps rule out some of the other dx that were being considered.) As odd as it sounds to people who don't have children who are so difficult to dx, it feels really good to have a positive result, because then you finally know what you're dealing with, and can finally figure out what to do about it.

This also explains why peanuts probably work...they are extremely high in tryptophan, which is the precursor to seratonin, and full of fat, which goes straight to the brain. I stumbled on this several years ago, when I was trying to find something high in fat and protein, and gave my son peanut butter. It stopped the rages almost instantly, and has continued to do so. He hates peanuts, so this is certainly not a placebo effect. Drs. (except Dr. K, who agreed with me) have let me know they think it's insane, but it certainly makes sense. If your child is not allergic to peanuts, try a small handful of peanuts or 1-2 T of peanutbutter the net time s/he is raging. I'd love to know how it works for you, and then I might just write something up (and maybe find someone interested in actually researching this properly!) Trudy

Actually, being an Occupational Therapist who specializes in Sensory Integrative Disorder, I can definitely speak to this question. Yes, DIS does cause functional limitations, and makes it very difficult for the child (and/or adult) to self regulate. Think of the child who is constantly out of his/her seat in school, moving around, putting his/her hands over ears, can't stand certain textures, certain foods (and/or types of foods,) etc. It makes it very difficult to focus and attend to task. These people tend to set up rituals to deal with their sensory problems (could look like OCD), and so they learn, in time to use these rituals to be able to function. Yes, we all have our issues, but where it becomes difficult to function, is where we call it Sensory Integrative Disorder. Find a good Pediatric Occupational Therapist who specializes is treating Sensory Integrative Disorder. Some therapists are certified, but it honestly does not matter if they are certified, IF they have a lot of experience (personally, I rather have one who has years of experience, and really understands what s/he is doing and seeing, rather than someone with just a very few years of experience, and just got his/her certification (that's my personal opinion, having done this for over 15 years!) Anyway, ask around, and be willing to ask lots of questions. Ask what kind of evaluations they do (there are standardized evaluations + you want someone who can also evaluate functionally...know what they are seeing, and be able to explain it to you so you understand). They should be able to set up a good "sensory diet" for you to do at home (really a cool term for a sensory program tailored to your child's individual sensory needs, and constantly reassessed, and changed as the child's needs change (and the child's sensory needs will change as they improve.) It is a VERY effective treatment when done right. My DS with PANDAS and my DS with PANDAS and Asperger's both have Sensory Integrative Disorder, and we are constantly doing what we can to help them. Keep in mind that when they get sick, the Sensory System does have it's own flare ups. Sensory Integrative tx does not CURE the problem...just makes it manageable, and helps the person function. Actually, though, when the child is started as an infant, the brain can be rewired, and many of the symptom do go away! Good luck. Trudy

Yes. handwriting and math skills can frequently suffer from PANDAS. Both of my kids have that problem, particularly during flare up. We know when things are getting bad again, because one of my kids who has always been brilliant in math, suddenly can't do the easy stuff (10 + 8). My other one, gets bad in math, and his normally really nice handwriting gets bad.

Yes. My son has had a CT scan, MRI and 6 separate eeg's (so many eeg's, because he does actually have some problems in the fronto-temporal lobes, and is also being treated for seizures.) One of the other two showed somethings questionable, but neither showed the basal ganglia (if it's not done by someone who really knows what they're doing, it doesn't tend to show the basal ganglia.) That being said, a PET scan, I have been told does show the basal ganglia much better. What doctor are you using? Have you considered getting Dr. Cunningham's test done? There is a fee, but we felt it was VERY well worth it, because it confirmed the diagnosis for one of my boys (he really had pretty classic symptoms, but wasn't being diagnosed or treated properly up to that point), and the other one, it REALLY confirmed the dx (he has very different symptoms, and looks bipolar.) We treated him with abx, and literally overnight the really bad depressive symptoms he was having went away (he has since had PEX.) If there is any question in your mind that something else might be going on, then do consider asking your ped. neurologist about doing a CT, MRI or PET scan...just to rule other stuff out. I am grateful that we did the CT and MRI, because it ruled out that something else was possibly going on. Good luck.

Both of my boys responded immediately to abx (the one with the worst ODD, and who was putting his fist through walls, and even suicidal) responded overnight. But, keep in mind that every child is different, and in the end, we did steroid bursts, and then ended up having to do PEX (on both). But, they both were sick for years. I definitely agree with going the steroid burst next. Good luck.

I have 2 kids with PANDAS. I was only allowed to vote once, and they are different kids.

Really excellent! I totally agree with sending it to the ones below...and I also think you should send it to Kurlan.

Hey bubbsmom...can I PLEASE take this to our Due Process hearing tomorrow??? It's already our 5th day of Due Process, stretched out since December 3, and I need a good laugh to share with our lawyer (who's fees are now up to over $25K (we hired her 2 years ago), not to mention the private school we had to put him in when he went into crisis 1 1/2 years ago, because our school district wouldn't honor the 504 plan we brought from NY with us! He ended up hospitalized for 4 days at CHOP in Philly, where, incidentally the ped. neurologist told us PANDAS was "voodoo.") In fact, we even had a nice little visit from Child and Youth last October (1 week to the day after we filed our Due Process claim), because "someone" decided to report me for Munchaussen's (we'd been warned they were going to do something like that, so we were completely prepared, and a quick call to Dr. L by Child and Youth took care of that one.) I really feel for you. Good luck.

Dr. Latimer has said several times that once they have PANDAS, any illness (viral, cold, flu, etc.) can trigger it. I still up the abx, as Dr. K. had said to do, because I don't want to find out it was actually bacterial! Where do you want to go...we went on a cruise the last 2 years, and it was wonderful. In fact the last one was 1 week ( go the day) after my 13 year old finished PEX (we had to beg the dr. to get it done, so we didn't have to cancel the cruise!) We want to go on another cruise this year...actually considering it. Anyway, maybe we should have a PANDAS cruise...wouldn't that be a boatload of fun (pun intended?)

Could be, and I would definitely ask for a cardiac consult and/or rheumatologist (we did both). Doesn't hurt to make certain. But, keep in mind, too that some of our kids have Sydenham's Chorea (including mine), and it is with the dx of PANDAS (see Madeleine Cunningham's work.) We did r/o ARF, though, before determining that it was "just" PANDAS.

Michele I'm not sure why you got over to the PANDAS side of the forum, but maybe it's a good thing (or did you cross post it?) Anyway, my son, who is now diagnosed with PANDAS, was doing inappropriate sexual touching (grabbing my breast, touching my husband's and my other son's privates, etc.) when he first got sick. We took him to the Ped. Neurologist, and after I kept pushing, he was finally had an eeg (has had several since.) Turned out he had fronto-temporal lobe seizure activity (they actually never "proved" that the behaviors were associated, but there was definitely a lot of seizure activity. Frontal lobe controls mood, and temporal lobe is impulse control and sexual activity. When he was put on anti-seizure meds, it definitely helped! Fast forward a few years. Problems continued, and even got WAY worse. Tics, OCD, impulse control, etc. (but the sexual stuff, thank goodness stayed improved, and he's still on anti-seizure meds, specifically Lamictal, which also helps with mood stabilization...we know for sure it's helping, because we did a challenge once by taking him off...all the symptoms worsened.) We finally found a doctor to dx him (but didn't completely tx him, and so we had to switch.) He has now had a round of IVIG and PEX, and I have to tell you, it made a world of difference (he's also still being treated for seizures, as well, though.) IF the problem is PANDAS, our neurologist has found that psych meds do NOT work on tics, OCD, etc (although many parents have found that ERP and CBT do definitely help. did your son's problems come on suddenly (even if not, that doesn't rule it out.) Was there any infection prior (such as strep, ear, nose, etc? There are a lot more things to look for. If you haven't already, check out that PANDAS forum, and see what you think. I would also definitely suggest you speak with your Ped. neurologist about the possibility of seizure activity, particularly in the temporal lobe. If he balks, tell him what I said about my son. Our neurologist at the time also balked, but the reality was, that after pushing, there really was extensive seizure activity, and it definitely improved with anti-seizure meds. Good luck. And, let me know what you find out. TP

he was getting sick. Unfortunately, he's now having most of his symptoms (luckily not AS badly as last year before his IVIG, and then PEX, but still bad enough) most of the time. He's falling a lot...mostly at night...gets suddenly too weak to stand, and sometimes also accompanied by the shocks. He is scheduled for PEX, but we just have to wait until it's his turn. Yes...the symptoms in our kids are just so hard to watch. But, it's coming from the brain, so there's going to be lots of different symptoms. And, the worst part is not just watching our children suffer, but trying to get to the bottom of it in the first place, and having people (especially doctors) think we're just making it all up, or exaggerating! Luckily, I have finally found good doctors (took more than 5 years, but, at least we're past that part.)

I completely agree with everything you have said. Dr. Latimer spends a lot of time with you, and is very thorough. I know it's very scary about all the symptoms, and I'm sure we have all been there...just trying to find out WHY our kids are so sick (took us 4 years for a dx, and finally started get the RIGHT tx when it was confirmed by Dr. Latimer. But, all that interim time was spent worrying about the symptoms, and what to do. Right now...just take a deep breath, have a glass of wine (if you can and like it :-), and make up the list like LLM suggested. That written list will keep you focused, and better able to answer the questions that Dr. Latimer asks. Also, if there are any behaviors that sometimes happen, but other times don't, consider taking a video. I did, and pictures speak a 1000 words! Good luck.

My childrens' current pediatrician (we had to change multiple times, because we were getting NO help, even with a formal dx and tx from a ped. neurologist) told me that the reason so many doctors are hesitant to agree that it's PANDAS (especially general pediatricians) is because if they dx it, they have to be able to tx it (or face possible malpractice!) If they don't know anyone who can help the child, and they don't feel they know enough about it, they say nothing.

Just a quick reply, because I need to get to work. Good list of tests. I agree. Also, my son gets the neck and back involvement. He is constantly trying to "crack" his own back (and has figured out how on certain chairs. It makes him feel better for awhile. I have done some craniosacral on him, which has helped, but I didn't realize it would make such a huge difference. Now I know from your findings, and I'll start doing it more when he gets another episode of neck and back tightness and pain. Thanks for your findings!

Thank you. That helps so much. He does have Sydenham's Chorea. He also just told me that he can: "hold in the screams", like when he's at school, but his body definitely moves from the shock. In his case, it feels like he's being stabbed or tasered. I bet it does have something to do with the Sydenham's, though. And, it went away after the PEX last year, but is coming back, because all his symptoms are coming back.

Yes, he takes several. But the "shocks" started before he started on any meds. These were some of his first symptoms, but the doctor thought he was faking it after they couldn't find anything. I have mentioned it to other docs, but no one can figure out what it is. Could it be a neuropathy or something else? Thanks.

Does anyone have any clue what may be causing my DS' "shocks". he has had these for several years, especially when PANDAS symptoms are increasing. He had several eeg's, and although there is definitely seizure activity, the "shocks" did not show up as seizures. My son screams, then falls every time it happens. he has had them all over his body, including his heart (the heart has also been checked.) He has described them as "shocks", "feeling like being tasered", "feeling like he has a knife stuck in him." Thanks.

We had way worse tics (ended up in the ER by ambulance, because he couldn't breathe), for about 2 weeks after. Then, they gradually started easing up, and all symptoms got incredibly better...until now, when they're starting to get worse again. We need to repeat PEX. But, overall, the PEX really did the job. I'm wondering if getting him on IVIG at this point might be an option, since the PEX had to be stopped early? As the doc?

5-HTP is Tryptophan. Dr. K. has recommended it, as well as our holistic chiropractor. Also, try eating foods high in tryptophan. I found, purely by chance, that peanuts worked like magic. this was before I knew what was wrong with my son. I was looking for something high in protein, non-meat (he doesn't like meat), and high in good fat. It stopped the rages, literally in anything from 1 - 5 minutes! He either ate 1 - 2 T. of peanutbutter, or 1 - 2 small handfuls of peanuts. Now, keep in mind, my son HATES peanuts, so I know there's no way it was a placebo effect. And, trust me, the rages can be horrendous! About 2 years later, I found out that it was very high in tryptophan, an excellent source of stabilizing blood sugar, and because it's high in fat, it probably takes the tryptophan to the brain a lot faster than water-soluble sources. This is just my theory. I'd love to know if it works as well for some of you guys.

According to our neurologist, once they have PANDAS, anything can trigger exacerbations (strep, flu, a cold, etc.)

My son was just complaining today that he has been getting some stuttering. What I have observed, though is more dysarthria, and it was pretty bad today (he said he didn't realize he was doing it.) He has also had episodes where he was suddenly unable to speak (this happened last year before he finally got IVIG, then started again about 1 month later, and he had PEX.) The dysarthria is starting up again (as are plenty of other symptoms.) He is "in line" to get PEX again. This disorder is just so horrible...it affects everything, and yet so many docs just refuse to accept that it is anything more than psychological!!! I just want to wring their necks.

We could all use a great laugh. I couldn't stop laughing.

Also, make sure you get your pets checked, particularly if they are in the kennel a lot. Our vet suggested that when he found out about my boy's having PANDAS (he was more concerned, and understood the implications better than any local doctors (we go out of state for tx). Anyway, he suggested we ask the neurologist, which I did, and she called him, and told him to give the dog a big shot of penicillin (we didn't end up checking the dog...just gave him the penicillin.) It actually helped. BTW, the same thing goes for not having live vaccines in other family members or pets. It can be transmitted to the child with PANDAS. There are killed vaccines that can be substituted, even for pets, as we found out, also from our wonderfully caring vet.