peglem

Oh, don't feel like a dork, you have time to make a plan. Do you want imaging? MRI, EEG? these are tests a neuro is likely to order if they feel they need more information, and I think they're probably not a bad idea when kids have neurological symptoms, just to make sure the tics are really tics, and not something else that only looks like one. If your PCP doesn't want to send you to an allergist, just tell the neuro (have you identified any potential triggers?) that you suspect your son may have reactions to certain foods/chemicals (tell your observations) and ask if they think it would be a good idea to have allergy testing done. (you, the lowly patient asking for their lordly advice) I'm just saying, this is an opportunity to get what you wanted in the first place from your PCP. Also, ask the neuro to send you a copy of his/her report, otherwise it will just go to your son's doctor. Just follow a format of: This is what I see happening, here's what I'd like you to check. If you think its PANDAS, you might want to bring info (abstracts of studies) and any medical history that would support that (dx'x strep infections, titers ). If there are any therapies you want for your son (CBT?), ask the neuro what they think about those as well...The worst thing that can happen is they say no and you'll be no worse off than you are now. One last thought- sometimes neuros specialize (my daughter's specializes in headaches). I'm not sure what your son's chief complaint is, but, if you go to the Denver CH site, you can probably get profiles on the doctors, and may find one that has a special interest or emphasis that you think may be of benefit.

My only advice is to go with requests for what you want to have done. I used to go to doctors and describe symptoms and wait for them to figure out what to do...no more. When I go to drs I know what I want them to do and tell them what I want. If they disagree with what I want, then I ask for an explanation...because if they are right, I want to understand why. I think you have a good chance of getting the ped. neurologist to recommend allergy testing. (personally, I'll bet they,ll wish it had been done before hand) Just tell them you'd like to rule out allergies as a cause. The ped neurologist will send a report to the referring physician- and you are likely to get something recommended by a specialist. If my child's ped wants me to see a specialist that I didn't request, I find out what he wants from the specialist before I go. I really hate when I see a specialists and they asks why I'm there and I'm not even sure. (and that's usually the first thing they ask.) As far as whether to go local or the Children's hospital... I don't know. Some services I've gotten from the Children's hospital here have been fine, some have been so pathetic that I went back to my PCP and got referred elsewhere. If Denver's Children's Hsp. has some kind of a program where the specialists will work together to do a full workup, I'd go for that. Some Children's hospitals have a child study team approach. Its a shame that we really have no way of knowing how good a doctor is until we have to deal with them.

Oh, no, swallowing pills is huge, huge, huge ! Often its the difference between treatment or not. Before my daughter could swallow pills, it was absolutely horrible trying to get any supplements or even medication into her. Congratulations!!

I have always heard that things get worse before they get better when getting rid of yeast because as the yeast die they release toxins. I don't know how long it takes to turn around for the better.

They may find some high titers- but, they won't be able to tell from how long ago the strep infection was. Titers may be normal, but that may be that they've already gone down if the infection was that long ago. Many times (and this is true for my child) the strep does not cause any symptoms that one would recognize as strep, as most only look for an immune response (fever, swollen tonsils) and not the behavioral response. For a PANDAS dx, you'd basically need to check for strep every times she has episodes of increased tics- its the temporal association between strep and behavioral exacerbations that indicates PANDAS. An actual autoimmune marker was never found. The autoimmune part of the PANDAS acronym is theoretical. I think in my daughter's case, it may be toxins produced by the bacteria themselves that are responsible for the behaviors. One other thing- (this is my theory only) it seems that frequently PANDAS kids have high titers for a long time, and that's where its more likely(I think) to be an actual autoimmune problem, because the body continues making antibodies, even when the bacteria are gone, due to the fact that the immune system is sensing the antigens on the basal ganglia cells as though they were strep bacteria. My daughter seldom had high titers- only once, and they were not highly elevated. (even though we were positive that she'd had many strep infections, testing positive on the throat culture from the doctor's office.) I don't care about the actual PANDAS dx anymore- she gets better on antibiotics, so as long as we can treat whatever it is appropriately, they can call it whatever they want.

https://www.neurorelief.com/index.php?optio...9&Itemid=74 and specifically https://www.neurorelief.com/index.php?optio...2&Itemid=46 Thanks

How in the world do they test for neurotransmitters?

My first thought would be either 1) the supplement lodged in his throat and didn't actually make it to his stomach or 2) his stomach acid is almost nonexistant.

I've checked...1000mcg=1mg. You'd need 1000 500mcg tablets to = 500mg. 500mg does seem excessive, though. The RDA is @ 2.4 mcg/day. (for an adult) There is, however, no known B12 toxicity. Your body should simply excrete the excess.

there are 1000micrograms in a milligram.

Its my understanding that PANDAS is just a temporal relationship between strep exposure/infections and symptom exacerbations. The reason for checking titers is just to determine if there has been a recent strep infection when the labs come up negative. My daughter has only once had high ASO titers, but never way high (just slightly out of range). But, she's had lots of positive step tests. Her symptoms are immediate (almost) with exsposure to strep and it never seems to go away. Before she was on actual prophilactic antibiotics, she'd do a course of antibiotics and 3-4 days later she'd start with the "streppy" behaviors, test positive, and then get another course of antibiotics. This went on for @ 18 months until we decided to do a tonsillectomy. After that no strep tests were done for awhile, because her throat needed to heal and we thought that would take care of it. The behaviors came back @ a month after the tonsillectomy (maybe sooner, but we thought she was just healing), and continually increased...got really, really bad and finally, she was tested again @ 3months post surgery...and I cried when she was positive again. Now that she's on prophilactic zithromax, (5days on, 7 days off), the streppy behaviors come back around the 5th day off and go away within about 2 hours of her first zith dose. Without antibiotics, it never goes away. But, back before we knew she had this problem with strep, her problems were always worse in the fall and spring....and I think exposure at school is the reason why.

Not chlorine related, but the sunlight sparkling off the water can cause some real problems for my daughter who is a bit photophobic. She does better with the pool in the evening.

Except for the very last entry at the bottom, Wikipedia reports some very positive results of its use. http://en.wikipedia.org/wiki/Saccharomyces_boulardii

My daughter is on both antibiotics and antifungals. We were discussing her situation on another board and I was referred to Jacqueline McCandless' book. She recommends using the S. boulardii, as it is a friendly yeast that is killed by antifungals. I believe it helps get rid of candida, but I'm certain something was said about its efficacy in fighting clostridia (a bad gut bug). So, its really a good yeast with a probiotic effect. I get mine from Kirkman's, as I have never found it available at stores locally.

In my case I didn't bring a report. My daughter had been on zith in the past and her doctor believed me when I told him that we saw the most improvement on zith. He was hesitant. We tried penVK and while she was on that she got a sinus infection (with a feint positive rapid strep result-the culture came up negative). We saw a different practitioner w/in the same practice for that, since it was a same day appt. That doctor said to stop the penVK and gave us a script for omnicef, which did help, but caused tumm aches...We saw her regular pediatrician @ 3 days later and he said we could quit the omnicef because "three days of that should have killed anything she had anyway". That was when I asked him about zith, not because of info from online, just because I had seen that it was what worked best. But, if omnicef is working for you and not causing side effects...if it ain't broke, don't fix it! If you're curious as to whether zith might work better, ask the doctor for a one month trial, citing the anti inflammatory properties (anybody who prescribes antibiotics should be familiar with that).

Allie does 250mg/day of zith for 5 days, then takes 7 days off...then repeat, repeat, repeat. We run a liver panel @ every 3 months just to make sure there's no harm being done there. She was on daily penVK for @ 3 months before we switched her to zith. Zith had always worked well for her in the past, she just wasn't on it prophilacticly before. The only problem with this schedule (the 5/7 day thing) is that her behavioral stuff starts coming back on @ day 4 off and by day 7 off she's not doing very well at all. Her doctor was actually glad to hear that, because it indicates that the zith is being cleared completely before she goes back on it. She used to be on weekly diflucan, for yeast, but we've recently switched to 3x/day of nystatin, which seems to be working better. And since we've added the bethanechol, haven't really seen any behavioral outbursts until day 7 off zith. So, right now here's what she's on, in addition to the zith schedule: 3x/day nystatin, 3x/day bethanechol, 2x/day lamictal (for seizures). It took us (her doctor and I ) a long time to come up with this combo which, finally seems to be working well for her. My baby was awfully miserable for an awfully long time while we tried to figure it all out. Oh, yeah, every couple of days I give her S. Boulardii, to put back the good yeast that is killed off by the nystatin, and of course she gets a daily probiotic.

Well, an EEG cannot really tell if your child is having seizures or not, except for during the time she is hooked up to the machine. Sometimes seizure activity is so deep in the brain that the surface electrodes don't pick it up. We did an 8 day 24/7 VEEG , and my daughter never had one of the episodes that we thought were seizures and showed no seizure activity, although the EEG (according to her neurologist) was consistent with someone who does have seizures. It contained alot of unusual spikes and waves, but nothing that followed a seizure pattern. I liked that the neuro said, "I don't treat EEG's I treat the patient." We treated for seizures with lamictal, and very gradually increased dosage until we were no longer seeing those episodes (that probably were seizures). The eeg is just a tool that can confirm a seizure, if it occurs during the eeg, but it can not rule out seizures. Its usefulness is limited. My advice would be if your daughter is doing well on the dose of meds she is taking now-stay at that dosage. If she is still having little seizures that nobody notices and don't seem to interfere with her functioning...well, you might pick those up on an eeg, but, especially if you are uncomfortable increasing meds, you don't neccesarily have to treat them. Find a neuro that you are comfortable with, who answers your questions. As far as the PANDAS testing, are you talking about titer checks? I hope somebody will correct me if I'm wrong, but I believe high titers only indicate that there has been a recent strep infection. The only real test for PANDAS is to establish a temporal relationship between strep infections and behavioral exacerbations (tic, ocd, raging). Susan Swedo, herself, acknowledges that they were never able to prove the autoimmune component of PANDAS. They never found an immune or autoimmune marker in the disorder. The question I had, after reading your previous posts, is if the movements you thought were tics were actually seizures? Or does she have both tics and seizures? Or are they able to answer that question? My guess would be that if an antiseizure med resolved the tics, then perhaps they were seizure activity? Did they do a video eeg? That way they can correlate what is happening physically with the brain activity. I'm not surprised that people did not recognize seizures in your child, most people think of seizure only in the "grand mal" sense and don't realize that sometimes, just spacing out can be a seizure. One more question- Have they done, or are they planning to do an MRI? I just think this is important to see if there is anything structurally in the brain that could account for the seizures.

Interesting. My daughter does not tic (I think), we see improvements in OCD behaviors and mood w/in a few hours of zithro dosing.

We were on omnicef for 21 days once...it hurt Allie's tummy. Please be very careful. Zith builds up in your tissues and has the ability to damage your liver, which is why so many docs are hesitant to use it prophilactically.

Thanks for sharing this! I would sure like to see them investigate (in these same test subjects) changes in other body systems as well. The immune system, for instance. I think there is a problem, though, with comparing vaccinated vs. nonvaccinated children in the USA though. I think there are too many life-style variables between the vaccinated and unvaccinated populations. You might get some interesting correlations, but w/o controlling for all the other variables, it won't prove causation.

I get mine from Kirkman's labs.

I don't know what exactly is in the Candida Clear, but an often overlooked issue with yeast killers is that they also kill off the good yeast. (just like antibiotics don't discrimminate good from bad bacteria) So, IMHO, its okay to use the yeast killer-just about everybody who has had much in the way of antibiotics probably has some yeast issues. But, a few hours after administering the yeast killer- give S-boulardii, a "good" yeast that helps keep clostridia and c-difficile in check.

My daughter was doing the jaw popping thing too- don't know if it was a tic or just congested ears. She was prescribed nasonex for it also, and though she didn't start eye blinking...she began banging her head more severely(actually crashing her knee into her face, which may also be a tic) and both eye sockets bruised all the way around. The doctor and pharmacist said the Nasonex could not have caused this...but its never happened before or after. I'm never using it again.

I just wanted to add that my daughter becomes hypersensitive to clothing, sound and light when she is yeasty...something to think about.

I would absolutely tell the doctor about it-both the amoxicillan and the nasonex. And yes there is a difference in how antibiotics work. They are classified according to their "modus operandi" (how they eliminate bacteria) and according to which bugs they are most effective against.