911RN

Has she had cardiology work up?? Echocardiogram to check heart valves and what not. If not, with complaints of chest pain and being tired etc- she definitely needs one. Complaints of chest pain in child so young is most unusual.With BUN and Creat being elevated- I would insist on Nephrology work up. RF requires coordination of many specialists in child so young to prevent potential, serious, life long complications. Videotape behavior so docs can see what you are going through. Multiple short snippets of tantrums, meltdowns, confessing behavior- anything that gives multiple different neuro psych symptoms that need to be put together for whole picture of what you are dealing with. My thoughts are with you- this is a medical illness with neuropsych symptoms- docs need to treat the medical disease to get to the neuropsych issues. I don't know what the naturopathic MD's do in Canada?? While, they may be able to give some good supplemental advice- I would not entirely abandon conventional medicine, at this point. Sounds as if you need larger medical center with greater specialties and more knowledge of SC/ARF than your rural area is able to provide??? Have they considered course of IV antibiotics- that may be one option to arrest this in its tracks?

Sounds very reasonable to me. Sounds like you are doing all the right things! My sister's son was diagnosed ADD, ODD years ago as a young child. He is actually brilliant- very high IQ. Was never "treated" appropriately under the care of my sister while growing up nor as an adult (IMO). Only thing he was ever prescribed that he took was ADD meds like Ritalin. Has never had therapy or counseling. He did take antidepressants for short time which he said was helpful (attended college during that time and did well but later quit).He did not stay on them due to no money, no insurance, poor life decisions etc. No meds like Respiradol etc. Sad to say he never reached his IQ potential- quit HS, got his GED, got a girl pregnant at 17, had 2 kids ,divorced and is in jail currently for DUI and addiction to huffing computer cleaner. He is in his mid 20's now. SAD, SAD, SAD! He is a SMART man/child that is lost. You are doing the right thing to bring your family and child out of crisis. Prayers, hugs and good wishes being sent your way that this is an effective strategy for everyone going forward!!

My son has significant history of tics- vocal and motor. Never noticed any increase in tics after starting. As I said- has been on it about 6 months or so. Maybe a little longer- give or take a couple months. Actually, had an all time low for ticcing from mid Jan to April then we (as everyone else it seems:) saw rise with beginning of April- allergies etc, I suppose.

I give my DS12 100 mg daily. My husband also takes it. He takes 200 mg daily. I didn't notice any "reaction" but I think he is less fatigued and has a bit more stamina. This is a kid that complains of being tired all the time despite 8-10 hours of sleep at night. Seems to have more energy. He has been on it about 6 months. Don't expect to see results right away---it takes a few weeks to a month to see any difference. My husband was my control- they went on it at the same time. My husband states he feels better taking it.Same effect- more energy. My reason for putting both my husband and my son on it was for different reasons. My husband is a on cholesterol lowering agent and high BP medicine.Cardiologists recommend it for their patients because cholesterol lowering agents can cause one to be lower in CoQ10. It's good for the heart:) Our bodies make this, we do not get it from our foods. CoQ10 production is inhibited by certain medications---my son is on antiseizure medication and low does Prozac and CoQ10 production is lowered from these drugs, as well. I don't think it is one of those medications where you "see" a whole lot in way of behaviors or changes in child's abilities--- think they may just feel better and the benefits that may entail to their entire functioning--- it that makes any sense?!

If wearing pants- not shorts- you can tape pants to socks to prevent. Duct tape works. Sounds crazy but it is effective. Not too attractive- you nor kids will win any trail fashion awards:) Most important- check your heads/hair carefully daily and warm parts of body where tics like to travel and hang out. Arm pits, groin etc. Happy tick free travels!

For what it is worth- most normal,"healthy" children and people that eat a normal diet would seldom be magnesium deficient. Unless you know mag level is low by proof via lab testing- I would refrain from supplementing. Usually see low levels in alcoholics, severe resp conditions, renal failure, chronic illness states etc. Would be unusual to have low mag in most kids.

From my experience, if really diagnosed with Rheumatic fever- he should see a pediatric cardiologist and have an Echo (like ultrasound) of the heart at the very minimum. RF effects the heart valves and they would see this on Echo....good luck! Infectious Disease doc would be good idea also.

No, I give it in the mornings----no night time issues. He is a good sleeper. Time change has thrown him for a loop- still an hour off but no activation issues with Prozac for us. I would like see a little better OCD control. Sees neurology in April. May ask to increase to 30 mg which he was not opposed to on last visit for DS weight, age and symptoms.

Where do you purchase this? On-line? Through a naturopath? Also, I'm a little reluctant on the mushroom component because of mold allergies. Do you contend with anything like that, or have any feedback about using a product with that component when mold allergies are present? Thanks! I purchase this at my local family owned nutrition store that I have used for many years. There is a very learned herbalist/nutritionist there who helps me (he has done much research into transdermal magnesium as an autism treatment). I also have my "bible" for nutritional healing called the "Prescription for Nutritional Healing, 5th ed". Very heavy book. Two DS have been tested for mold allergies and are good. We use other mushroom products, like Cordyceps, for vitality, sports endurance, etc with no negative side effects. Also, adhering to a homeopathic point of view - ingesting a potential allergen that you react to as an inhalent may actually reduce reaction. In your case, I would talk to an herbalist, naturopath, or even accupuncturist familiar with the Chinese Meds. On another note for the BBB - this is a very interesting article about glutamatic acid, glutamine, and GABA's effect on the brain and well-being. Brings it all together nicely I think. http://www.naturalstresscare.org/GABA.aspx Interesting string of posts---I just did alot of research on astragalus, mushrooms, garlic etc to boost immune function on Dr Weil's site this past weekend. He has some good info also, good dosage recommendations. Some products also. I will have to look for the Kyolic brand. We have GNC and locally owned nutrition store. Thanks!

My son is on 20 mg daily, 11 years old, 120 lbs. Neuro is not opposed to going to 30 mg in child this size and age. Has helped with OCD.Has been on it since June 2011. No bad effects to my knowlegde. Seems to tolerate it fine. HTH!

I would be looking for allergen for tic activation- dust mites, mold in heat vents, dust, something in his room etc. That is most unusual to tic more at night- particularly once he has gone to sleep then awakens to tic for 3-4 hours.

Have you ever tried Bicillin injections vs. oral medication to see if that eradicates the Strep?? That is often suggested in folks that get recurrent. Just a thought. Seems like you have good team of docs on board. Hopefully, they will get to the bottom of it.

London, Nanacy beat me to the punch...however, I agree, there is great research and evidence to support there is strong correlation between Strep and development of narcolepsy. I have an entire file folder of related research. My son went through similar symptoms last Spring. You should be able to Pubmed topic and get supporting evidence. Nancy has linked you to several- I probably have many of those she listed. I'm not sure Ritalin would be the greatest choice to treat symptoms of Narcolepsy. If PANDAS- will likely make your child very ticcish and/or increase OCD behavior?? I, too, would push for longer course of antibiotics and see what happens. My son took 90 days of Azithromycin and was much improved although sleep studies were inconclusive for narcolepsy. Take some of this research back to Neuro to plead your case. Good luck! A constantly tired, irritable child is not normal and difficult to deal with- I know- have been there! Good luck!

My son has done this for 7 years- docs were always flummmoxed and never had a really good term for it. Some said it was a form echolalia but since he was not autistic they always just kind of scratched their heads not knowing what to call it. He was not echoing what others said nor having stream of consciousness ideas of what he was thinking so it did not really "fit" echolalia in the classic terms.7 years and 3 Neurologist later....my latest Neuro has dubbed it a complex vocal tic AND I think he is right!! Miracles never cease. Get a smart one evey now and then. My son has improved this behavior GREATLY on Prozac 20 mg daily since June 2011. It used to drive me absolutely CRAAAAZY. He is now about a 2/10 on a scale of 10/10 of where he has been in the past. Let me tell ya- silence is golden without hearing him muttering and talking to himself all the time when he was on computer or watching TV. Prozac and Lamictal are the only Rx meds he takes.

Great info...thanks for sharing. I'll keep all this in mind. I'm going to schedule appt with Peds and see where to go from here.Batonella, lyme titers etc.

I recently tried taurine for my son for about 2 weeks and it made his tics MUCH WORSE. I stopped it.Just FYI.

WOW!!!! Thanks for all the replies. Seems like everyone is doing something a little different- no standard protocol. I am not highly suspicious for LYME- no symptoms. Although, I understand that bartonella is seldom a stand alone infection and one must consider it to be a co infection. I think I may just ask Peds for titer testing for both and see what happens. I'm thinking that since the only symptom he seems to have is rash- he may respond well to conventional therapy- 1 to 2 antibiotic cocktail for reasonable amount of time? Thanks for ALL!

Hello Lyme Mamas and Dads, I wrote once before thinking my neurotypical son may have been exposed to Bartonella, in last year, based on waxing and waning stretch mark- like rashes on his arms, chest and groin over the last year. I have watched it long enough- comes and goes, fades and returns very ropey and dark. I think he has it. Planning to take him to Peds----they can do titers or whatever they want to do or just treat him with round of antibiotics. He is asymptomatic as far as I can tell of other symptoms- just the rash that seem to be following a tick borne illness cycling. Upon researching- seems like Levaquin is the drug of choice for treatment not Doxy as I had surmised. Questions: What are Lyme forum folks being treated with for Bartonella??? I have read a month or two of antibiotics may be necessary? Does this sound right? As I have said- NT, no issues, good student, good grades, no other issues other than rash---stretch marks? He is not overweight. He is my outdoorsy kid and he/I have pulled more ticks off him over the years than I care to mention. Thanks, in advance, for any replies.

thenmama, I absolutely agree with whatt you are saying. Through the course of my son's 7 year "illness" of LKS, CAPD and suspected PANDAS---I have had the opportunity to go to many clinicians and 3 "researchers." One researcher in Philly, one at LSU and one quasit researcher/clinician at Chapel Hill. There are totally different mindsets between the clinicians treating patients in the office and the researchers doing what they do to publish or perish. Politics are definitely part of the big picture with the researchers. Our latest Neurologist who is not a complete naysayer on PANDAS states that my son's case is "interesting" in reference to cycling of tics and OCD that occurs after Strep infection, however, he plainly states he is not a researcher, the jury is still out and he is not sure what the correct path for treatment is- even if a child is true PANDAS. As a clinician, he lacks any concensus view on how these kids should be treated for resolution of symptoms since there is no standard of care. I AGREE with him on this. He does agree that these kids should be treated longer with antibiotics after infection. He does agree there is some neuroinflammation involved and not opposed to short burst of steroids if needed (we have not needed). He stops short of long term antibiotics as his 'experience' in the office with multiple children has shown him that the effects wane over time with no appreciable benefit. I also agreed with him on this note as this is what we saw with my son- 90 days of antibiotics- he improved and then effects waned. Went back to sorta similar, improved baseline that he went to without antibiotics in between Strep infections. the clssic sawtooth pattern. When we were unable to have Cunnningham testing completed then I decided to stop antibiotics. That was last Spring. He did encounter Strep in Fall- tics and OCD returned. Kept him on a month or so of antibiotics then stopped. He improved back to baseline by January and that's where we sit right now. He is likely the best he has been in years- right now- I'm dreading another bout of Strep- but I have antibiotics on hand if needed. Anyway, your post was coherent and I agreed with your sentiments. Clinicians and researchers are different animals....both have seen my son and had something useful to add to the picture. But, I have found trying to combine the two opinions for treatment decisions can be problematic. Hope you are feeling better soon!

____________________________ Dr. M. said that he and Dr. McVige have seen some young people whose families thought they had CD (Conversion Disorder), but who actually had a real tic disorder, but, that he didn't put these patients into the same category as the Le Roy girls. I wonder why not??? I believe he thinks the Le Roy girls have a false tic disorder. . Sincerely, Carol http://cantbreathesuspectvcd.com That is exactly what he is saying....the very essence of Conversion Disorder. Neurologic Psychogenic Illness---fake tics----not a "real tic" that is caused by physiological synaptic issues, neurotransmittor issues rather tics being caused by their own mind. From stress. Both he and McVige alluded to this fact, in that, the girls'symptoms are not consistent with their training in neurology due to tics crossing midline, doing more when being watched, hearing others etc. Although, they said it was "unconscious" they were still indicating that it was within their power to stop if they could get to root cause of their stressors. Just like Hysterical Blindness- not really Blind although one perceives and behaves as blind. Have to be convinced they are not and wala- can "see" again. That's exactly waht I got out of it- yes, a more or less "fake" tic disorder. Like pseudo seizures which are not real seizures either.

I was wondering the same thing?????

I felt the same way after seeing them on Dr Drew last night....they need to find this forum C'mon folks- try a trial of antibiotics. What have you got to lose?? It's an antibiotic- it's not crack or a never tested experimental drug! Yes, I'm sure the environmental toxic angle should be explored for the entire health of the whole community (posion spill, fracking, toxic plume, yada, yada) BUT I don't think this is what is causing these symptoms. If this does not look like SC, PANS etc- I don't know what does. I'm sure EB will get to the bottom of the toxic spill/environmental stuff. But, these girls need help, NOW! See my rant on the voting poll post!

Quoted from the article, bolding is mine----"Trifiletti said he was recommending a regime of antibiotics and anti-inflammatory agents, and Mechtler said the prescriptions will work for the patients, if they believe in Trifiletti. He compared the treatment to a placebo and a religious ceremony. Since conversion disorder is a psychogenic illness, if the patients are hyped into believing a treatment will work, it will work. And if that's the outcome, that's a good thing, said Mechtler. "At the end of the day, all I want is to see the patients get better," Mechtler said" THIS GUY IS GOOOOOD. He is covering his butt at all angles. UNbelievable!! So, if they get well with Dr T's treatmentt it is still CD, not PANDAS. Because that is how CD works---if you believe you will get well with a treatment- you will. Not because it was the RIGHT diagnosis with correct treatment. What a convenient diagnosis for him (CD)- think a treatment will work- you will get better- poof! He is RIGHT regardless of what the cause. How tidy and convenient. So.....why has he been unable to convince the girls to get better with HIS treatments. Oh, and what exactly is that treatment???? For those of you old enough to appreciate the ole' Saturday Night Live Dana carvey "Church Lady" segments- I can imagine myself doing an entire segment on this How conveeenient!!! You are right no mattter what.... so you say, Dr M....hhhmmm, how convenient! Furthermore, I have never liked Dr Drew. He treated Dr T very condescendingly on program last night. While, I appreciate his willingness to air this debate to get to the bottom of it "to help these girls"----it is all about ratings!! He can act all concerned but when there is an opposing view from CD- he cuts them off. Many of these girls were pretty, popular, active, cheerleaders, soccer players etc in their latter days of High school- what teenage girl is going to want to turn into a freak with ticcing and verbal outbursts if not beyond their control from a real medical source. Defies pure logic. C'mon people- give halfway intelligent folks a break. These docs' house of cards is falling. IF some of these girls get well with antibiotics and antiinflammatories- they will still claim CD but they will be shown for the arrogant, narrow minded pri2ks that they are!!! I have worked with these types for 25 years as a nurse and taken my son to these types (but not for long)...they are not gonna change. Can only be revealed for what they truly are with this type of event. Why doesn't Dr M give them some sugar pills and convince them it is going to make them well if he is going on the placebo theory. He has had since October to do so- hhhmmm? Again, more Church Lady Enought of my rant- have followed all the forum coverage on this topic. Rarely weigh in- had to get this off my chest. HOW CONVENIENT!!!!

I'd give her more time. If she showing signs of improving in several areas AND particularly if the tics are not bothering HER.Tics can often be more bothersome to other people around them than to the person that is experiencing them. From my son's history and perspective. His vocal tics have always driven me far more crazy than they bothered him. Sometimes adding new meds to mix can muddy picture on child that is improving "on their own." Just my opinion...

Simple blood test- most any lab can do it. Get positive or negative result. We used to do rapid tests in the Internist office. Had a kit just like a pregnancy test.Drew a tube of blood, spun off the serum and placed in rapid test kit. Get positive or negative within no time.