tpotter

Just for clarification, Nicklemama is talking about Therapeutic Listening, which is a different (but similar in methodology) program to The Listening Program, and Tomatis is also different (but considerably different in the way it is done.) As I mentioned in my response previously, there are different programs that address the same issue. Therapeutic Listening does give you one CD at a time, and rents them out, while the Listening Program has you buy the whole kit, and it's yours. There are reasons for this, but I'm not going to go into that here, because I'm only giving this information for clarification only. Both are legitimate and good programs (yes, I'm trained in one, but that's only because it doesn't make sense financially for me to train in both...both programs work.) Both of these programs are done at home with OT (or trained therapist supervision.) Tomatis (again for clarification) is much more intense than the other two above. It is done over, I believe, a 2 week period (sorry if I'm getting the time period off for you Tomatis trained therapists.). You also have to bring your child into the clinic (there are a few throughout the world, but I don't know where). Testing is done on the child (adults, too), and the program is custom made for the person's specific problems. From what I have been told, it also works on people who have psychiatric disorders. As you can imagine, it is far more expensive, but much more customized. Not all people need the customization (that's why the other programs work, as well.) Some people, though, may need the highly customized Tomatis treatment. All the programs are based on the work of Tomatis. Again, though, it is important to find someone who is trained to supervise.

I'm a pediatric OT in practice for 27 years, and am trained in The Listening Program. I don't recommend that it be used by everyone, because it doesn't work on everyone. Typically, I work with the children for awhile, and do an assortment of other sensory intervention before using TLP, because it is expensive, and with sensory integrative disorder all the different sensitivities pile up on each other anyway. That being said, I have seen it do some amazing things for kids. Kids who were not talking suddenly were talking (the only change having been starting TLP). I've seen other hyper/hypo sensitivities change, because of using TLP. But, again, we also don't usually try to do more than one thing at a time when doing the program (at least at the beginning.) The Listening Program tends to work great with Autistic kids, but does not work with kids who have psychiatric disorders. I tend to see it help with language, hyper/hyposensitivies, and attention to task. There is only one child I have prescribed it for that it did not help (one of my own children), but he also did not have Autistic-like symptoms, and was not diagnosed with Autism (when I was first trained, I tried it on both my own children...they've always been my guinea pigs :-) He did have PANDAS, and lots of neuropsych symptoms. It did, though, work extremely well on my other son. He was diagnosed with Asperger's Syndrome, and unbeknownst to me, also had PANDAS. It is important to see a trained therapist (trained in using whichever program you choose...there are other programs besides The Listening Program.) I do agree, though, that if you can get it on the internet, you could save a lot of money. The only drawback I could see, though, is that you have no idea if the CD may be scratched, the earphones don't work quite right, etc. The reason I bring that up, is that one of my clients was using a used program. It started out great, but all of a sudden he started having massive behavioral problems. His mother found out one day, by chance, that the cd was doing some funky stuff that it wasn't supposed to. But, overall, I have seen some great results with the kids I have prescribed it for. Keep in mind that nothing we are doing as PANDAS parents works exactly the same on every child. That's why, if you are considering using TLP or some other program, you really should get a good evaluation by a trained therapist.

I also live in the Philly area. There's, unfortunately no one in this area. I would suggest Dr. L,, though. She's in MD (approximately 2 1/2 - 3 hours from here. She does not push IVIG or PEX, but, being a neurologist can definitely rule in or out PANDAS, and knows how to treat it (and not always with IVIG or PEX). PM me if you need her information. She told me the other day that she is taking new patients again.

Funny you should bring this up. I was just asking Sheila, yesterday how to post on more than one forum (Lyme and PANDAS) about making sure you do this on a regular basis. DS15 and I have both started testing high on liver enzymes (started about 5 months ago when we added in abx for Lyme, in addition to PANDAS abx.) Ped. neurologist expressed major concern about it last week for DS 15, and I made appointment with his gastro (he had already had problems with pancreatitis from doxy.) In the meantime, we rechecked his numbers and they had dramatically risen...scared me completely, and the pediatrician called the gastro to get him in sooner. Just got home fromm gastro, and he thinks it's the abx (btw...azithro can definitely cause liver problems as can doxy, and others he's been on.) Now he's on nothing! So...what do I do WHEN he gets sick (he's already sick...I don't think the oral abx have been helping much lately, anyway.) We've got consults in to all the docts (neuro, immuno, gastro.) So, the bottomline is...don't wait for the yellow eyes to start (not to scare you, but that happened to a friend of mine many ears ago, and it was too late.) Keep testing regularly. Don't assume that it can't affect your child (many of these can also affect the kidneys and more.)

I have to agree with EA Mom. I totally agree with the genetics, but I really have to question the ethnicity. We are jewish, but I have met a lot of kids who I suspect as having PANDAS, and most are not Jewish or Irish. But, the main thing is that she is treating, and knows what she is doing!

Higher doses of melatonin give my DSs nightmares. Be careful not to go too high.

Very interesting about the Singulair. My DS18 and I both take it, also. I do know that it could cause something like restless leg syndrome (not necessarily RLS, but something like it.) I wouldn't be surprised if it could cause more in some kids. Good luck with him. Hopefully things get way better.

Push for honors. She can do that homebound if necessary. You definitely need to challenge her.

I think it's certainly a very real possibility to we should be targeting the gut. We see a holistic chiropractor (he's absolutely amazing...uses applied kinesiology, but truly knows his science, and just "gets it." ) He's really targeting the gut in all of us. Personally, though, I don't think it's any one thing. We have found that what worked best for us was PEX, but IVIG has also helped. Personally, if we could get PEX followed by IVIG + fixing the gut + if necessary IV abx (which worked better for my younger son when he was hospitalized...got rid of 100% of the symptoms...they all came back, though), I think that would really help.

LLM has very good advice for you. We are one of the families with very long term illness, and our children are older. Because of that, we decided that we really didn't have any time left to play the wait and see game. We did get PEX last year for both boys, and it was a wonderful, almost 6 month reprieve. We could not get another PEX, and were offered IVIG. It took us 8 months to get the IVIG in place, and wouldn't you know...we found out about Lyme and possible bartonella just when we got the approval for IVIG. I thought for one day only, and decided that since this is also an autoimmune disorder, both my boys do test positive for a specific ID, that as long as they were also getting treated for LD, I would go ahead with the IVIG. But, remember, we are dealing with very long term illness (at least 8 years for one, and at least 12 years for the other...possibly 18 years for that one), they are 15 and 18 years old. I truly haven't regretted it, although I will still say that for US, PEX worked better, but that it definitely should have been followed by at least one IVIG. We are still also continuing on the LD treatment. And, we do have mycoP (all 4 of us.) But, IVIG has definitely helped a lot, and I have it documented and videotaped. So, my suggestion? Do what you feel in your heart is really the right decision (use that "Mother's intuition"). There is no right or wrong answer. I have followed my gut, and so far do not feel that I have been wrong.

Insurance is paying 100%, but we had to fight to get it (we went through several appeals, and finally won...it wasn't easy.) There's no way we could have afforded it otherwise, as my DSs are 160 and 200 lbs (at 1.5 g/kg) that's about $15 - $18 K EACH! But, that's why we fought insurance. Try not to have the term "PANDAS" in the records if at all possible. Some insurance companies will pay for PANDAS, but most don't. If this is an immune deficiency, then code it as such. If it post-infectious encephalopathy or encephalitis, the code it as such (the doctor has to be able to justify this, though.) Doctors who know what they are doing should be able to code it right the first time (that also may be a reason to stick, for now, with doctors who really understand the importance of finding all the reasons possible that will get through insurance. Good luck.

Yep...my vet knows way more about Lyme, autoimmune disorders, and even asked if he should give the dog a shot of penicillin for possible strep carrier when I first told him about PANDAS (I didn't even need to explain it...he just already knew.) BTW, he gave the dog the shot! Also, keep in mind that there is a killed version of the bordetella vaccine for dogs (those of you boarding probably have to have the vaccine given.) Our vet told us about that, too, when I expressed concern about the live one.

I had persistent cough and asthma that I just couldn't get rid of for 3 years! When symptoms would escalate, the only abx that ever worked was azith (which happens to be one of the two top abx for mycoP.) Even though I went to 2 asthma specialists and a pulmonologist, no one thought to test for mycoP. When my kids went to see Dr. B. he tested the whole family for strep and mycoP. That's how I found out that my IgM and IgG were both very positive for it (I had managed to spread it to everyone else.) If you are even slightly suspicious, ask the dr. to test for it. It's a simple blood test. I'm still trying to get over the symptoms 10 months later, and am seeing a lung specialist at the end of May to make certain that we are getting it all, and that I don't have permanent lung damage from it.

Wilma, I can't send you a PM (your full.) Personally, I think it doesn't hurt to do both. We are getting Lyme tx, but are also doing IVIG, because there's no question that the whole response in my kids is autoimmune.

Dawn, I am really, really praying for you. Keep us informed. And, I agree with the previous post...maybe contact Beth Maloney. She may be able to say something that could help.

Wow. This is fantastic. Now...how long do you think it will be before it's actually really used?

Thanks for the update. I'm sure you realize how lucky you are that you found Dr. B...so knowledgeable and caring. I'll keep my fingers crossed that things don't get too "dicey" with the steroids!

Join the club (a lot of us have had this problem over the years.)

Very interesting. Both my DSs had band 41 positive, and so did I. DS15 had only band 41 positive, DS 18 had 4, and I had 2 IgG and 1 IgM. DH had band 41 IgG and 2 bands on IgM. But, I don't see reference in Dr. T's article about how many people in the general population have band 41 positive on testing. Did I miss that? Did he refer to that somewhere else? I think that would be significant.

Both my DS's are diagnosed with Lyme (one is highly suspect of Bartonella.) We are doing Lyme protocol, and also IVIG (have had 4 since starting IVIG protocol.) IMHO, I believe that it's important to help the immune system fight all infections while treating with abx. That's why we're doing both. Again, this is my personal opinion, and I do believe that both IVIG and abx have helped (although we're not seeing a lot of difference with DS 15 concerning abx for Lyme. But, he does have the bartonella rash. IVIG has definitely helped both boys.

May I suggest that you videotape your dd's episodes to take with you to Dr. L. It helps if she can see what you're talking about. Even if Cunningham tests are negative or on the low side, PANDAS/PITAND is still a clinical dx. Document everything you've said, so that she can also see the correlation between being sick and escalation in symptoms.

Personally, I think it's a good idea, because if you do IVIG without treating co-infections, you can get a massive herx reaction. That's what so many people on both PANDAS and Lyme forums keep talking about when the IVIG they got done didn't work. IMHO, I believe that treating co-infections while treating with IVIG is good, because even though there will be some herxing, you're still helping the immune system get stronger to help fight off the co-infections. BUT, the co-infections have to be getting treated (if there are any.) So, yes...test for them. BTW..Is Dr. Beals treating your dd for Lyme or anything else?

If you can get immune deficiency in the diagnoses, and they will also pay for IVIG, I would HIGHLY recommend that you get PEX followed immediately by IVIG. We have done both, and both of my boys are in agreement that both needed to take place (we did PEX separately from IVIG,) and now have done 4 IVIG's. They got immediate, long term relief from the PEX. The IVIG has not helped them as long (it might in the long run, but PEX did more, and for longer.) Even if there isn't an ID, I would try to push for both. Otherwise, insurance may have to keep paying for the IVIG. I also agree with LLM that you should try to push for IV abx while the picc line is in. My DH (now 15...then 13) got the most complete relief when he was given IV abx for 4 days as an inpatient in the hosptial (they thought he had ARF.

If Kathy isn't able to get them to you, call Andrea in Dr. L's office, and ask if she'll fax you the results.

Emerson, I keep reading that you are having trouble staying awake. Several months ago, I saw a news story about how the flu vaccine appears to be causing narcolepsy in some teenagers. Of course they ended it with saying how we still have to do what's best for the whole (what a totally axxxnine remark!) Anyway, perhaps you have some narcolepsy? Or, have you been tested for sleep apnea or some other sleep disorder?