911RN

I read some research on this. Very interesting.My son suffers mostly vocal tics--did it help mainly with motor tics or vocals also?

Good to know about the flushing not being caused by this product. The horrible taste would be something to overcome, I suppose.

Interesting, high dose niacin can cause side effects of flushing, hot feelings. Has she suffered from this or complained about this? Taking 1 regular aspirin 1/2 hour before can lessen side effect- what we do for adults. But, since it is a child and aspirin is not recommended for them, I was just wondering how she was tolerating it.

Yes, it needs to be part of order, unfortunately. And, yes it is less painful, for sure!! How could they expect you to give IM injection without needle or syringe--jeez. Or, any dilutant to mix medicine. It doesn't magically go out of vial into muscle.

Did they use Lidocaine to mix it or not? Glad he tolerated it well. It is not pain free but tolerable.

Impetigo can be caused by Staph OR Strep bacteria. So, not surprising it could be a pre-cursor to PANDAS.

We mix Ceftiaxone with Lidocaine in ER to make it less painful. With or without Lidocaine- it is NOT nearly as bad as Bicillin. My children have had 3 days of Ceftiriaxone IM in past and they both did fairly well- no major issues with pain at injection sites. It hurts at time of injection but not crazy, long lasting pain.If using Lido- patients report very little pain at all. Bicillin is thick like syrup, we have to use larger needle just to get medicine to go from syringe through needle into muscle. Plus, the thickness of medicine in the muscle makes it more painful. Ceftiraxone is not thick like Bicillin. Usually better tolerated.

Seizures cannot be seen on MRI. That would have to be done with EEG which is an unusually cheap test in today's medicine. I am not aware that tics are "mini seizures"?? We have had MRI done--nothing significant showed up. It has been reviewed by 4 Neuros and only one picked up that he had "cerebellar verman atrophy with folia looking somewhat generous in the vermis and nowhere else in the brain." Current Neuro states that may be true... but, even if so, nothing we can do about it. So, even mild abnormality on MRI may not be useful if there is no treatment. MRI's are most useful, in my opinion, just to rule out that there is not a big, bad, horrible something going on in the brain causing symptoms. More useful to just prove normal brain anatomy than to actually help in treatment.

Sinus infections can/should be treated for up to 6 weeks with Augmentin. Zithromax is not usually drug of choice although some antibiotic is better than none, I suppose. I would take to ENT- PANDAS friendly or not. They are usually more aggressive with treatments for sinusitus than Peds. Does he still have tonsil and adenoids? My non Pandas son had overgrowth of adenoidal tisue from recurrent sinus infections/ allergies and he was so much better when removed. They left his tonsils. Steriod nasal sprays were also helpful for symptoms during sinus infections. If not treated for 6 weeks- he probably has never cleared original infection. Low level sinusitus keeps coming back?

I always been taught that tics go away with sleep. I would be concerned that this is not a tic?? Any thoughts from other tic experts?

Yes, this sounds very OCD.Many times children can suppress very while at school and then it all comes pouring out once in the safety of their home. Obsession is the words she is obsessing over that she hears or worries about in her brain. OCD is NOT rational. The compulsive part is the need to say, do or "whatever" it is she is doing about the words--confessing etc. The compulsion relieves the obsession-- that's where the anxiety relief comes in. Or perhaps, "fears" that you are speaking to. It doesn't make sense to them or to others but it is the cycle of OCD. The obsessions themselves are not the problem in behavior per se, it is the compulsions (their reaction to the obession to relieve the stress and anxiety to whatever it is) that usually cause the problems, The compulsive behaviors are usally the "oddity" of OCD. Again, it is not rational. Hope that makes sense! It is unfortunate that your Peds would not order high dose Azithromycin until you can get to PANDAS specialist. That might make a big difference. Or, have you tried routine Motrin 2-3 times a day? This is so sudden onset following Strep, right? I don't know how they could not call it anything else but PANDAS. Hope you get naswers and treatment next week.

What is laser light therapy? Who performed it for your child?

WOW! Good for you for getting your daughter back. Tough road. You have great advise. Thanks!

Yeah, looks interesting! Hhhhmmm, is right.

Interesting, thanks. The LAST hold out for my DS14 is vocal tics, few motors ---actually compulsive vocal tics according to Neuro. I may check into this. Maybe it will work as well for his vocals as it did for your Ds motors. We don't have any gut issues althiugh his diet sucks. OCD in diet prevents me from doing much about this and I'm not fighting the 14 year old on diet right now. Not without some major therapy to help.

This comes from www.sciencedaily.com. Go to site and type in "surgery for OCD" to see full articles. These are just the short synopsis I cut and paste. There are many new treatments for refractory OCD since that and your bladder seems to be the main focus of your issues. Perhaps, you cannot do much for the ME but there are treatments for the OCD. I would suggest adrenals be looked at be checked as well. There are medication treatments for POTS--this alone, should not leave you wheelchair bound. Unless, it is the ME leading to this. Early results indicate potential for focused ultrasound to treat OCD Date: December 10, 2014 Source: Focused Ultrasound Foundation Summary: The potential of focused ultrasound to treat certain patients with obsessive-compulsive disorder (OCD) has been supported by new research. "There is a need for non-invasive treatment options for patients with OCD that cannot be managed through medication," says the lead investigator. "Using focused ultrasound, we were able to reduce the symptoms for these patients and help them get some of their life back without the risks or complications of the more invasive surgical approaches that are currently available." Evidence supports deep brain stimulation for obsessive-compulsive disorder Date: September 22, 2014 Source: Wolters Kluwer Health: Lippincott Williams and Wilkins Summary: Available research evidence supports the use of deep brain stimulation (DBS) for patients with obsessive-compulsive disorder (OCD) who don't respond to other treatments, concludes a review. Despite the limited evidence base, DBS therapy for OCD has been approved by the Food and Drug Administration under a humanitarian device exemption. Deep brain stimulation for obsessive-compulsive disorder releases dopamine in brain Date: April 30, 2014 Source: Elsevier Summary: Some have characterized dopamine as the elixir of pleasure because so many rewarding stimuli - food, drugs, sex, exercise - trigger its release in the brain. However, more than a decade of research indicates that when drug use becomes compulsive, the related dopamine release becomes deficient in the striatum, a brain region that is involved in reward and behavioral control. New research suggests that dopamine release is increased in obsessive-compulsive disorder and may be normalized by the therapeutic application of deep brain stimulation. Identifying brain variations to predict patient response to surgery for OCDDate: December 23, 2014 Source: The JAMA Network Journals Summary: Identifying brain variations may help physicians predict which patients will respond to a neurosurgical procedure to treat obsessive-compulsive disorder that does not respond to medication or cognitive-behavioral therapies, according to a report.

Endocrinologist would handle bad adrenals. This is worth investigating.

I would say this is more CAPD- central auditory processing disorder.Has nothing to do with hearing and everything to do with the brain and how it processes information it hears.

My son started with vocal tics after viral croup at age 3.5 yo. He does not have dx of TS.

I would recommend CoQ10 if your child is not already taking it...leading cardiologists recommend it for patients with heart failure which is similar condition to hypertropic cardiomyopathy. It helps with the fatigue and improves endurance, exercise tolerance. Buy a quality Coq10 for better absorption. It's not cheap but not cost prohibitive either. My son had very poor endurance and fatique, tired easily from minimal exertion. He takes SSRI now which is known to deplete CoQ10- however, he was like this before ever taking SSRI's. His energy level and endurance improved greatly with daily supplementation of CoQ10. As for if the CamkIi can be inherited---that would be a question for Swedo, I suppose? IDK.

I believe that in conditions such as PANS or any other chronic illness/state that it is OK to take a break. Sometimes it is just necesary to take a breather from the hustle and bustle and take stock in where you are, what have you achieved and where you are going. An evaluation period of sorts. I believe you answered your own question...cut back to every other week. Go from there...if better, then stay at that. You say therapy has been useful but you all sound tired. This journey a marathon not a sprint. It is OK to slow down and walk... not run for awhile. My DS14 has had "issues" since age 4. 10 years is a long time. I go through periods of doing nothing and then periods of doing alot. He has to be ripe for certain situations and the things we do. Sometimes just a tincture of time is the right thing that progresses us to the next level.

Thanks for the feedback.

Thanks, Mayzoo. That is encouraging!!

Hi All, So, I am going t take the plunge and try Hemp/CBD my DS14 over the holidays. I am targeting OCD and simple/complext compulsive tics. Looking for an update from those that have tried this with their kiddos. How long have you been using? What have been the effects- POSITIVE OR NEGATIVE? Has it had a sustained effect or worn out over time? Has it been effective for OCD/ Tics? I talked to Neuro about it...he did not object but he doubted it would work or have sustaining effect. He is of the opinion that one needs the THC psychoactive efffects (as what is in Marinol in synthetic form) for improvement in OCD. I told him folks on forum were seeing good results- I hope that is still true! He gave me his blessing to give it a whirl. I am interested in the paste someone mentioned- which company offered that? My DS14 is 174 lbs--how much would he need to start? How do you know how to titrate up? Is there a limit? Lots of questions! Sorry, I'm just looking for some feedback from the longer time users before I purchase. Thanks, in advance 911RN

My son became very angry on NAC, we abandoned it and he returned to his sweet self. I made a direct relationship to the medication. Anger is not something we had issues with before or since stopping it. Only a short trial but not a beneficial result.