911RN

MY DS11 (120 lbs) has been on Prozac 20 mg since June and has tolerated it well. Happier, more engaged, less OCD. Teeth grinding at night has been the only notable side effect. I think it is trial and learn process. Works- great. If not- can always stop. What works for one may not work for another and even your own child may do great on one particualr SSRI and not another??!! I just urge folks to give it long enough to know if it is really effective- 6 weeks or more if not having severe side effects. And,don't give up if Lexapro is "not the one." May need to try another SSRI. We tried 4 different stimulants when we were trying to target ADD sxs- all a no-go but we tried. Docs have never forced us to revisit that issue with stims:)! We have not tried Lexapro. Our doc started with Prozac and thus far, it has been a keeper. Good luck with trial.

One tip I have picked up that seems to work is not to take things away- (electronics etc) but to "add something" they find distasteful as a disciplinary method for negative behaviors. Extra chore, clean car, reading for 30 min, dishes etc- whatever IT is that you know the child does not particularly LIKE to do. This is a great tool for getting kids to straighten up and put some limits on their own behavior or else they get things "added"- not taken away as punishment. Just a thought:)

Hilarious! Thanks- I needed that!!!

IgA Nephropathy can cause RBC's in the urine.

Did they give evidence as to why on either count???

Hmmmm. For what it is worth, we've had two psychs now tell us that with our DS14, stimulant ADHD/ADD meds are not an option. They've both said that stimulants cause the OCD to intensify. We tried Intuniv -- a non-stimulant ADHD med -- for a while. But after a while, we really couldn't see any impact by it, and the truth is that when DS's OCD behaviors are under control, his ability to focus is pretty good. It seems to be the OCD that distracts him. Please keep posting, though. I'll be interested to hear how it goes with the Concerta, Prozac, etc. It would definitely not be the first time one of our docs was "wrong" when it came to figuring out what meds work and what meds don't when it comes to our PANDAS kid! FWIW, my DS11 cannot tolerate stimulants either- we tried 4. All a no go within 10 days. Concerta was the first we started with and the worst. Not able to sleep, OCD worsened, picked all the skin off his feet, jacked up! It was sad because early on it did help his attn and focusing and helped him in school but by Day 10- it was awful. It was no different with every stim after that....good in the beginning. Awful by day 10- all for little different reasons but basically all intolerable effects.He was not on a SSRI at the time of stimulant trials,as he is now, so I don't know if effects would be any different now??? We, too, tried Intuniv for a year then stopped it. Effects waned after about 5 months. Going higher only made him more tired. I soooo wished my son would have had good effects with stims. Med options are few and not that great if they don't tolerate them. Especially, for trying to target the lack of focusing, inattentiveness, distractability. My son is more ADD, not ADHD. Hyperness is not an issue. Good Luck with Concerta/Prozac! Hope it does the trick for him:)

You can ask for titers to be drawn for tetanus, diptheria and pertussis. If your child shows immunity on titers then you can ask to be exempt and you have lab work to prove it OR if they are low in just one- you can get separate vaccine for just the one that they may need instead of the combo vaccine. HTH!

Do you supplement with Vit C as suggested by much of the literature/research in a 1:3 ratio? I've read that if one take 500 mg NAC should take 1500 mg Vit C? I'm not a big fan of high dose Vit C for other reasons- strong family history for my son of kidney stones on both sides (mine and Dad's)-Vit C can contribute to stone forming. My son is 11.5 and weighs 120 lbs. Thanks!

Dizziness symptoms sounds like Vertigo. BTW, I've never known hyperglycemia to cause dizziness?? Not sure what would cause PANDAS docs to think dizziness was indicative of that? Blurry vision, maybe with very high sugars but dizinness? Not one of the more common symptoms- thirst, frequent urination, weight loss, blurry vision etc are more common with hyerglycemia.

Thanks, that is helpful....now, I'm torn whether to start NAC first of Taurine??? What dosage to you use and how much does your child weigh?? He is on low dose Prozac and I was reading on another thread one must be careful with too much NAC with SSRI.Same with Inositol and SSRI's. Lamictal and Prozac are his only Rx meds. OTC- Multivitamin, B6, Vit D and CoQ10. That's it. The tics are driving me craaazy and I know they bother him at times. It has to be difficult at school for the other children. Occuring during speech makes it hard for him to communicate and socially he is challenged, anyway, so...it makes him reluctant to talk and speak (further isolating him socially). I just feel like I need to try something to see if he and everyone else can get some relief from the tics!! Thanks!

I have had great success with inositol with my non-pandas son (although not sure he is a non-pandas...will see what Dr. B thinks). He has tics, OCD, ADHD, and anxiety. He is on prozac but never had great success till I added the inositol. His anxiety and OCD are rarely a problem any longer, and I know it was the inositol. He is 12 and a real light weight, about 74 lbs. I started with 1 500mg and worked up to 2 500mg in morning and 2 at night, with only positive results. My guy is sensative to meds b/c of his tics, but never had a prob with inositol...its been the best thing for him. Good luck! Interesting, I didn't think you could take Inositol along with a SSRI?? I used it a couple years ago for tic suppression when my son was 9...about 75 lbs at the time (I think-don't quote me on that:0) He took 400 mg twice a day and tolerated it fine...it worked to suppress tics, IMO. I gave it in combo tab that contained choline as I had read you should not take one without the other. Complementary supplements sorta like NAC with Vit C but I have seen folks on forums give Inositol without Choline and do fine. I have never been able to refind that research I read so it must not be a pressing issue.

We did high dose Azithro for 90 days in the Spring but no long term antibiotics. Tics did improve greatly but can't say they disappeared entirely. Not the cartoon vocal complex tic OCD stuff. I could not "prove" PANDAS once Cunningham lab closed research study. His specimen sits untested in OK lab. No Strep since then. Although he had ear infection on 9/14 that I susupect was also Strep. Never complained of ear infection or pain. Just sore throat- since ear was infected- docs were going to treat anyway. Never tested for Strep. Mini exacerbation on 9/14- came out of it. Now, seems to be ticcing up again. Likely due to just bumping up Lamictal?? I am thinking of starting with Taurine then adding NAC. See what happens?? I have some Azithro stock piled but he's had no signs of being sick...I try to save them to add on few weeks of treatment to what doc prescribes when he does get sick Thanks for replies everyone!

My DS11 suffers mainly from vocal tics- simple odd noises and some complex vocal tics according to Neuro. Complex vocal tics can mimic echolalia in the form of copying cartoon phrases repetitively. May have somewhat of a OCD component to complex, vocal tics. "Being stuck on a phrase." We tried weaning Lamictal thinking some of it was coming from AED (which, is research proven- higher dose Lamictal- increased tics), however, he has failed Lamictal wean. He is on low dose Prozac 20 mg which has helped the OCD tremendously. He has an underlying abnormal, nocturnal EEG, although, no history of seizures... so AED is ordered for that. As we tried to wean Lamictal lower- had noticeable cognitive loss. Brain fog, disengaged, reluctance to talk, poor school performance, irritability etc. Indicative of return of abnormal EEG. Although, tics did lessen! Cognitive status has improved with bumping back up. However, with the bump comes the vocal tics....unforunate, fine balancing act. Not willing to compromise cognitive functioning for tic suppression. So.....my question is to the masses that have explored the supplement world for vocal tic suppression What ONE supplement have you tried or continue to use that has proved useful in diminishing vocal tics? These seem to bother him, at times. It is intermittent- waxes and wanes. Worse at times, better at times. But, always present in some form. Often, come in the middle of speech so it makes it difficult for him to communicate coherently. I usually only add one supplement at a time so I know what is causing what (and we don't take that many) so I am looking for that one,that reaches concensus from the group, that may be helpful to start with....or, maybe my thinking is wrong on this and I need a combo of things? Or, does nothing really work and I am barking up a bare tree His tics have really become "the" big issue in the last year. Neuro states they should diminish with puberty but they seem to be hanging with him....if tics are going to diminish- he seems to wanting to go out with a bang!!! Supposedly,tics peak about age 8-10. Yet, his have seemed to worsen from 10-11. All, in conjunction, with suspicion of PANDAS??? Neuro says he is NOT TS. Dr Weil recommends the following: Taurine...which, we have never tried. Vit B 6- which he takes 50 mg daily. Mag- Taurate- never have tried. Quinine- never tried. Epsom salts- have tried a few times in past- did not apprciate much difference. Idebenone- ?- never tried or heard much about on this site. Sure I have looked it up in the past since I have it written in "my book" but have forgoten whatever I read. SAMe- have never tried. Any thoughts on these or have a different supplement you have found that works well for vocal tics??? Interested in any feedback. TIA!

This looks to be experimental? Available for those doing research and testing for effects of med? I'm not seeing where this is a drug that is manfucatured and available by prescription. Maybe I'm wrong?? Has a lot of numbers asssociated with it- usually means it is a research drug. Didn't see any big drug company producing it for the lay public if I google it. Did see some references in Europe- maybe it is avialable there but not here? I couldn't find FDA approval for this? Just did a cursory search- you may have looked longer, deeper and more. Not sure...but don't think it is a drug yet????

Yes, I've heard of it. Has never been mentioned for my child but we don't have any of those issues- enlarged spleen, liver etc. Genetic testing is definitive for this. Not sure how long I would go down a winding road of tests to prove or disprove if simple genetic blood test can tell you for certain. Just a thought. Hopefully, hematologist will order testing, have answers or refer you to Geneticist.

There is a stick with a bent 90 degree needle. Called a huber needle. Looks like a "buttterfly" needle often used to draw blood but bent 90 degrees so it can be flush with skin once it is put in. Hold it by little plastic wings and push it straight through skin into the rubber port beneath skin. The huber needle can be left in for up to 7 days if having continuous daily infusions and it is dressed/covered with a transparent dressing similar to what is put over IV or PICC. It is a minor stick, small needle. In our chemo unit- the nurses spray site with a freeze spray and the patients say they don't even feel it. If having long term therapy- over 3 weeks- I would opt for port over a PICC line for my child. More invasive initially but less risk for infection in the long run. Ports can stay in for years. Can use ports to obtain blood etc.There will be a visible round "lump" under the skin- about the size of a nickel if single lumen. Double that if double lumen. Double lumen sort of looks like a "8" turned sideways under the skin. Kids tend to have little fat in their chests so expect it to be visible- just to let you know, in case, your child is self conscious about appearance with shirt off etc. Ports can stick up a bit even though it is implanted under the skin. Everyone's port looks a little different...location, how it seats in skin, much depends on surgeon..all similar but no two exactly alike. Some are poked up higher than others. Some are buried more. Some are obvious, some you have to palpate and look for. Just depends on the person/surgeon. I had one women who had hers in a breast! I've used them for 20 years with patients. HTH! Link for some photos- can see ones that are just present under skin- see lump. These not "accessed" with huber needle- then you will see some dressed with gauze/transparent dressing. These are accessed with huber needle. https://www.google.com/search?q=photos+of+mediports&hl=en&rlz=1T4ACAW_en___US360&prmd=imvns&tbm=isch&tbo=u&source=univ&sa=X&ei=rkzQTqXKNoKEtgfEhq26DQ&ved=0CCsQsAQ&biw=1366&bih=617

There is a stick with a bent 90 degree needle. Called a huber needle. Looks like a "buttterfly" needle often used to draw blood but bent 90 degrees so it can be flush with skin once it is put in. Hold it by little plastic wings and push it straight through skin into the rubber port beneath skin. The huber needle can be left in for up to 7 days if having continuous daily infusions and it is dressed/covered with a transparent dressing similar to what is put over IV or PICC. It is a minor stick, small needle. In our chemo unit- the nurses spray site with a freeze spray and the patients say they don't even feel it. If having long term therapy- over 3 weeks- I would opt for port over a PICC line for my child. More invasive initially but less risk for infection in the long run. Ports can stay in for years. Can use ports to obtain blood etc.There will be a visible round "lump" under the skin- about the size of a nickel if single lumen. Double that if double lumen. Double lumen sort of looks like a "8" turned sideways under the skin. Kids tend to have little fat in their chests so expect it to be visible- just to let you know, in case, your child is self conscious about appearance with shirt off etc. Ports can stick up a bit even though it is implanted under the skin. Everyone's port looks a little different...location, how it seats in skin, much depends on surgeon..all similar but no two exactly alike. Some are poked up higher than others. Some are buried more. Some are obvious, some you have to palpate and look for. Just depends on the person/surgeon. I had one women who had hers in a breast! I've used them for 20 years with patients. HTH!

Hello, I was able to view them...in the first video it appears as if he is having some facial tics with his mouth. He is doing purposeful movemments with the container in his hands so that would rule out seizure. Lying down in second one...seems like he is doing some scooting which may be sorta chorea like of he was standing. Hard to tell with him lying down?? I have seen choreic movements in patients sitting and standing and they look much different. Chorea tends to be more spasmodic and gross motor uncontrolled. His appear more purposeful and controlled- if that makes sense?? Like a complex motor tic. Still manipulating container well. Under his feet/legs etc. Chorea is almost wild in movements and uncontollable. I've seen folks knock things over or hit limbs unintentionally. He looks like he is in pain to me?? Does he improve if you treat for pain with Motrin or Tylenol? I would suggest sharing video with Peds to get to Neurologist ASAP. Or, if you already have Neuro- share and get their opinon. I'm sorry- I don't know his history or circumstances. I think you have reason for concern- whether it's pain, complex tics or something more sinister I can't say from the brief videos. Keep us posted on what you find out.

Dr Schulman states on her videos that she is happy to consult with other Peds about PANDAS and her experiences with treatments in her office.

CF is not bacterial... it's childhood lung condition/disease that causes an accumulation of sticky, thick mucous in the lungs. These kids are very prone to recurrent pneumonia. That's what I think the picture was trying to illustrate- chronic, bacterial pneumonia in a CF patient. How the biofilm plays a role in recurrence and bacterial resistance to antibiotics. Not that CF is bacterial in origin like LD etc.

http://www.sciencedaily.com/releases/2011/11/111117163703.htm

To join the Sunshine chorus, this is our LLMDs view as well. It seems unlikely that you can totally eradicate lyme once it has lived in you for a long time. They've done autopsies of animals they infected, treated, that showed no signs of ongoing infection, blood work looked like lyme was gone, and a year later were able to grwo spirochetes in a culture of brain tissue or spinal fluid from these animals. So our goal is to get it low enough that it's not the organism that's calling the shots. But to do that, it does seem that a "war" mentality is needed. Because the spirochette can assume a cyst form, an L-form, live in a biofilm, and doesn't replicate for 3-4 weeks, it can be a long haul to reduce the load even if your goal is just a truce. On top of that, as lyme alters the body more to its liking, it does seem to shut down the body's detox system and lead to a build up of metals and makes a nice home for viruses and such. So to answer your question, I think most LLMDs have come to the conclusion that co-existence is probably the most likely outcome, but getting there is still no easy or simple task. Much depends on how long you've been untreated, what you're sick with (beyond spirochetes), the environmental insults you've been exposed to and your genetic ability to run an efficient ship (specifically methylation, transulfuration and Krebs pathways). Not something you want to hear as you start out. Not everyone will have the same struggles. But the possible outcomes seem as varied as the individuals who walk this path. We are not fighting a Lyme's battle....however, I agree with the sentiments expressed. Lyme's they are finding and it is expressed in some of the reserch- can be equated with Syphillis and TB, in some sense, in that, the organism has the ability to wall itself off and present problmes down the road if not eradicated as much as possible. Syphillis is similar- reason you have primary, secondary and teritiary syphillis. Folks don't treat it completely and it essentially ends up destroying their brains. TB, if not treated completely ends up destroying the lungs. Lyme's ends up causing long term neurological effects. I saw a gentleman in late stages of untreated Lyme and it was the saddest thing I could ever see. He was in his late 40's early 50's and presented with a Parkinson's type gait, tremors, weak as a kitten etc. It was awful...he was receiving IV medications routinely, however, it was felt that that would only stop the progression of the illness and help to stall it in it's tracks. It was not thought that he would recover what was lost. Present neurological damage would persist.Just not get any worse with treatment. FWIW- LD being under detected,undiagnosed and under treated is hitting the ER docs....this has been a big topic of discussion this year. I have seen higher incidence of testing for lyme titers, many positives (even on Western blot) and higher suspicion for LD amongst all the docs. AND, I am not in a Lyme prone area like the Northeast! Although, I think Lyme is everywhere, now. Hopefully, with greater awareness- folks will get diagnosed and treated appropriately sooner.

We used a similar tactic and it stopped (when he was in 3rd grade also). First, teacher wrote down every time one day that he wanted to go to the bathroom to let him "see" how often he was wanting to go to the bathroom. Talked to him about normal frequency of others, peers etc.Ours was a #1 thing not a #2 thing so no paper was involved (thankfully) for a boy:)Teacher then limited it to once per hour then every 2-3 hours and it seemed to work. He did not do this at home- or he just went on his own and I was not aware of it?? I was not even aware it was really a problem at school until like a routine IEP meeting and they discussed it with me and what they had done to fix it! I then had some problems on car trips (during an exacerbation) wanting to stop to urinate too frequently. I had a 24 hour urine container and told him if he had to go - he could go in that- while in the car- just pee in the bucket-he never had an ounce to give so he stopped asking to go. He had intermittent problems in 4th grade and they did same plan and it stopped.My DS11 started on Prozac this summer and we have not had this issue again either. Behavior managmement plans can be effective for some of this OCD behavior. Hope that helps!

Naltrexone is not a narcotic, but an opiate receptor antagonist(blocker). It binds to opiate receptors in the body and blocks them. If someone takes a narcotic overdose, then the remedy is naltrexone (it displaces the narcotic from the receptor and binds to receptor). I honestly don't know how it works for hyperactivity, but it is supposed to have some immune modulating properties as well. Hope this helps. Exactly as Susie said:) You can google "off label use for Naltrexone" or Low Dose Naltrexone (LDN) and see all sorts of conditions that are being treated with LDN- MS, Fibromyalgia, Crohn's etc. Hope it works well- keep us posted on results!

I never considered a "legal age" question but that is something to consider?? After having discussed it with Neuro and receiving his blessing, his statements he had used it with children in the 1990's- I just assumed if it was prescribed by MD it would be OK and legal?? I understand what you are saying about nicotine- I touched on some of the stigmas surrounding use of this in previous posts. Nicotine is technically classified as a stimulant. Although, all these drugs, on some level, could be called "poison" in my view. Wish we did not have even consider any of these for a child, last of all, my own.