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.