peglem

Why was the appointment made? I've gone to specialists just because I was referred by PCP and I don't think they'll do too much unless you have a specific problem you'd like them to address. Neurologists specialize in the functioning of the nervous system ( a little bit with structure, but you'd mostly want a neurosurgeon for that). The first thing they'll ask you is the reason for the visit. If there is something you'd like them to do- a test or something- make sure you tell them what and why you think the test is needed. Forget those tests run only by special labs...they won't do them (although if you do them independently you may get lucky with a practitioner being interested in the results.). Allergy testing/strep testing are out of the realm of neurology. They should investigate the source of any irregular movements (though many just prononce dx). Abnormal behaviors will probably be referred for psychiatry. Geez, I've lost my point here...oh, yeah, try to remember why the appointment was originally made (these appointments often take so long to materialize that you're not even dealing with the same issues anymore that you were referred for). Try to look at it like this: the neurologist is being paid to use his/her expertise to help your child. So, don't think about what the doctor will expect- decide what you expect the doc to do for your child. Do give history (w/ any observed strep connection) and if you don't know what kind of testing you'd like done (you're not expected to know what tools the doctor has) ask if its possible to test for..... Good luck with the appointment- sometimes it turns out to be just the right person to help. The other thing I always do is pray for guidance, that I'll have the right words to get the help my child needs. Sometimes this is amazing how I'll have stuff almost rehearsed for the appointment, but instead something much better comes out of my mouth and I don't even know where it came from (I'm assuming above), but it works!

I'm curious. What evidence is there that the kids will grow out of it? (ie..dare I hope?) Has it really been studied long enough to know? And what about all the missed growth and learning problems that happened during it? That's got to have a long term effect, if nothing else, just having to take extra time to catch up.

They don't really do the same thing. Nystantin kills the yeast but does not repopulate the gut with "gut buddies." Probiotics supply the gut with bacteria that are supposed to be beneficial for intestinal health. (some may kill yeast as well) The problem with maintaining balanced gut flora is that nobody is terribly sure how much of which organisms constitutes a healthy balance. Think of the gut as an ecosystem. Not enough predators is just as bad as too many.

I don't know enough about the 5HTP to comment on that, but would start the 2 meds separately so you can tell the effects of each. I think that is a reasonable regimen for the zith, but I would be sure to treat for yeast at the same time- if your child has biofilm growth and the zith works to penetrate that, you're going to get more than just one microorganism out of the film, frequently yeast is involved there too. my daughter has time in between zith dosages. What I do is nystatin 3x/day always. Also though, when she is on the antibiotic, I give s.boulardii at bedtime (fights bad yeast and clostridia). During her off zith days, I give her Kirkman's Yeast Free at bedtime. So far it seems to be working fairly well.

For my daughter, the only sign I saw of a strep infection was the behaviors (OCD and raging). So, it was kinda simultaneous. But, I think she had undetected strep for years causing problems that were dismissed because of her autism dx (makes me wonder how much the PANDAS actually contributed to the autism). Before she was put on proph. Abx, we went through about 2 years of her getting swabbed +, course of Abx, behaviors returning 3-5 days after finishing Abx, & repeat ad nauseum. I'd get your son (and maybe your daughter, too) swabbed again 5-7 days after finishing the Abx- just to make sure he's really cleared.

Most schools have a policy that milk must be served to the children unless they have a note from the doctor. They don't have to drink it, but they have to take it. I don't know where this comes from, but I suspect dairy counsel lobbyists had something to do with it. On the other hand, if you do have a doctor's note, they had better make sure they follow it.

If you're going to mix them in a drink, couldn't you just make sure the whole capsule is mixed in well and just give 1/2 the drink at dosing time? The next time you could give the other 1/2.

Well, here's where you can order the Home Strep Test Kit: http://www.medicaldisposables.us/home.php?cat=6 My daughter teasted positive nearly everytime she wasn't on antibiotics- as soon as I saw behaviors start. So I wonder if you could test your child at home at regular intervals and keep a log or something. If it comes positive get it comfirmed at the docs so they have the same info.

Don't look for regular strep symptoms before getting him checked. When the PANDAS stuff starts- that's when you want to have the strep test done, because you want to establish a correlation between the behaviors and the strep. You can order rapid strep tests for home use, if you want to check him yourself at home first. I can try to locate the website for those tests if you're interested.

The very best thing would be to get a positive culture associated with symptom exacerbation. The best you can get with titers is "probably had a recent infection" Low titers do not mean there has not been an infection, and this is where most docs get it wrong. Titers can not rule out, they can only confirm. My daughter had many, many positive cultures but never high titers (and this is where I think they should be asking Why? instead of dismissing it as carrier status). The real problem is that when the culture comes back neg. and the titers are low, the docs have nothing to indicate a course of treatment. Treating for strep under those circumstances would call their professional judgement into question. Even if they believe their is something wrong and the treatment would help, they need to have evidence to justify treatment.

What I'm wondering is why you're having such a tough time getting a doctor to try zith. Have you asked them point blank why they do not want to use it? For us, we spent about 2 years trying everything under the sun to clear the strep. The doc was hesitant to use zith prophilacticly...because it builds up in the liver (and other tissues). We do a liver check every 6 months. But, bottom line, Zith was the thing that worked the best, so that's what we went with. BUT, my daughter is only on it 5 days, then 7 days off to let it clear out of her liver, then 5 days on again. At first days 5,6, and7 off of it were pretty bad behaviorally. Now, after almost a year, we see a bit of an increase on day 7 off, but its getting better. Can Dr. K tell you any physicians in your area that he has worked with before? I think it helped that I'd already had a good long term relationship with my daughter's pediatrician- trying to get a new physician to understand and accept the history would be difficult. It also helped that her doc saw her ragey behavior 1st hand so understood the very real need to do something, even if it is a bit outside the normal course of treatment.

Same thing with us. Benedryl just made her more hyper and anxious - couldn't sleep at all - when the psychiatrists originally tried trazadone - didn't work & the higher the dose, the worse it got. But when we occasionally gave a motrin, she seemed to fall asleep easier. Of course, you wouldn't want to do that on a nightly basis. We just gave a 200 mg. tablet. Pat We used to give benedril for sleep (don't judge me, you don't know how desperate we were to get this kid to sleep!) and it did make her sleepy, but it caused huge meltdown prior to sleep. Took me awhile to connect the dots, but I found out that benedril is anticholinergic, so it blocks her body's ability to calm. We used melatonin successfully for a long time, but she began to get some reaction...I don't really remember (I'm getting senile- it wasn't that long ago) maybe morning headaches or waking in the night. I decided to just try going without the melatonin to see if it would improve and it did. But when the melatonin was working well, she'd fall asleep about 1/2 hour after I gave it to her. I do give her valerian root now which works very well most nights. She usually needs ibuprophen at least once a day.

My daughter is 14 now. I noticed speech delays in infancy- never really babbled normally. She is still considered nonverbal as verbally words are sporadic. I have searched the net high and low for information on apraxia of speech. Lots of definitions, very little solutions. Wish I had some great advice for you. I hope your speech therapist has more success than ours did.

Bethanecol is a prescription drug that mimics acetylcholine (a neurotransmitter) in the body. Acetylcholine is the nerve to muscle neurotransmitter (and a lot of other things too). Here is a link to Dr. Megson's paper on it, which I used to get the pediatrician to give it a try: http://www.megson.com/readings/MedicalHypothesis.pdf Also this has some info on dosage and is an easier read: http://216.248.205.207/research/McGinnis1/..._mcginnis1.html I dont know if yeast can cause speech issues...it seems to be capable of disrupting multiple body systems, so it wouldn't surprise me one bit.

I don't have any experience with Dr. K but wanted to comment on finding a local doc who is likely to cooperate. I have had the best luck with DO's. (doctor of osteopathy) I have no idea why this seems to make them different than other docs, just know that they tend to be listeners and willing to try things that are not neccesarily standard protocol. I was miserable with typical pediatricians trying to treat my very atypical daughter as though she were completely normal. I know you understand how sick of it all I was. Then an insurance change brought me to a new doctor (a DO) who was asking why and willing to help me figure things out. We also have been through numerous psychiatrists and neurologists...until I found the good ones who are DOs. I'm thinking this is not a coincidence and whenever I need a referral to a specialist, I always ask that they try to find one that is a DO, as well. Just wanted to share that- finding an effective, responsive doctor can be such ###### with a lot of wasted time and hope.

Of course I don't know for sure at all, but, my daughter tested positive on the rapid whenever she was not on antibiotics: I think reinfecting herself from biofilms. She never had high titers. But, i'm thinking with biofilms, the "cloaking device" hides them from the immune system so you probably won't see high titers as a result of that. I think there are very few docs who even know what to do with the titer results. Even if it comes back high...they don't even know if it indicates current infection (they'd say no in the face of a neg culture) or how long ago an infection occured. BUT....ASO and antidNase are antibodies to byproducts (or is it antigens? info overload here) of strepA. not the strep itself. So, I suppose if those products are being transported out of the biofilm you could get an immune response to them anyway. So the answer to your question is....heck, I don't know!

my daughter did have positive throat cultures, but never had high titers. Her strep always came back between antibiotics, with the only symptoms being behavioral.

Augmentin may be better at killing strep (I honestly don't know), but it can't kill it if it can't get to it. Zith can penetrate the biofilm defense system, augmentum can't. The interesting thing in the CF studies is that zith is not supposed to be effective against the bacteria that cause CF- and yet it does break up the films thatcause the problem. What I absolutely know for sure, is my child responds amazingly well to zith, but only minimally to other antibiotics.

When you guys say"intracellular" strep, are you talking about biofilms, or is that something different? Anyway, my understanding of the biofilms is that they are like "motherships". The organisms inside are sheilded from the body's defenses and most antibiotics. But, the colony reproduces and sends out microbes into the body. These, I believe are what can be detected with a strep swab. My daughter, for years, tested postive for strep 3 days after finishing a course of antibiotics. Then she'd be given another course...ad nauseum. But, even if the colonies don't "shed" active microbes, they still have waste products (everything poops) that must be removed from the colony, and waste products from yeast, fungi, and bacteria are nearly all neurotoxins. So, even if its only the biofilm and not an actual infection (with an immune response), the nervous system of the colonized person can still be affected.

The research being done on zith's effects on biofilms is in the area of cystic fibrosis, and there have been papers published on its effectiveness in that area- it just hasn't been applied to other areas. I suspect many doctors would simply say that it doesn't apply because your child doesn't have cystic fibrosis, but, If I was trying to convince a doc to try zith, I'd bring the info on biofilms and the studies done on using zith to destroy biofilms in CF.

Bacteria are known to colonize w/ other pathogens (yeast, fungi) in biofilms. A protective film covers the biofilm like a "cloaking device" allowing the pathogens to hide from the body and most antibiotics. Here sre a few articles about biofilms: http://www.medicalnewstoday.com/articles/47091.php http://www.erc.montana.edu/Cbessentials-SW...elude060602.htm What is not mentioned in these articles is that Azithromycin is the only antibiotic, so far, that is known to be able to penetrate the biofilm's defenses and kill the bacteria w/in.

My daughter got much, much worse after her tosilectomy. She was sent home with a 10 day course of antibiotics. When that was finished, the strep came back. But, since her throat was still healing and it was assumed the tonsillectomy took care of the strep, she was not put back on antibiotics for @2 more months. (when they did a swab and discovered it was back) She also , at the time, despite daily probiotics, developed a flaming yeast infection as well. It was the worst she's ever been.

There are many kinds of speech issues, but my daughter's are of the apraxic variety (motor). What has helped just a bit, is the CLO w/ bethanechol. Its pretty difficult to find a doc who will prescribe the bethanechol, but I would think you could get it from a DAN practitioner, who should be familiar with Dr. Megson's work in this area.

My daughter takes 3 nystatin tablets each day. She weighs @ 80 lbs. I don't know if it comes in powder form or not. I would think its a pretty safe med- they give it to infants frequently, for thrush and other yeast infections.

I've been dealing with severe rages for many, many years. The zith really helps with this (but yeah, yeast issues!). It got to the point @ 4 years ago that we seriously considered institutionalizing...it was that bad and my poor kid was so miserable, all the time! We tried a bunch of psych meds- they either did nothing at all or made it worse. The idea was that if we did have to send her elsewhere, I knew they'd drug her. So, I figured at least I would be more careful with the drugs. Once we discovered the strep problem aqnd found that the zith really helped...things have improved, but still, the rages happen a couple of times a week. (B4 they were constant all day occurances) We still do give valium sometimes, which helps, but I find that valerian works pretty well, too. I know, I know, its stinky horrible stuff. I'm lucky, because I can get my daughter to take it. She's also on Lamictal, a seizure med that also is used for a mood stabilizer (this came after a 8 day VEEG). Another thing that helps for us is the vitamin A/bethanechol treatment. Bethanechol mimics acetylcholine in the body, stimulating the parasympathetic nervous system, which is the part of the autonomic nervous system responsible for calming (balancing, modulating) the sympathetic nervous system. The sympathetic nervous system is responsible for the rages (fight or flight). I believe that most times, the OCD is what triggers the rages for my daughter...when she can't "satisfy" a compulsion. Behaviorly, my daughter now understands that I know this happens to her without her wanting it. I "help her be safe" (our magic words) by holding her in a safe place until she can get herself back under control. I have found this website to be helpful in dealing with rages: http://members.tripod.com/LeeLydon/rage.html