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Everything posted by 911RN

  1. I read some research on this. Very interesting.My son suffers mostly vocal tics--did it help mainly with motor tics or vocals also?
  2. Good to know about the flushing not being caused by this product. The horrible taste would be something to overcome, I suppose.
  3. 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.
  4. 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.
  5. Did they use Lidocaine to mix it or not? Glad he tolerated it well. It is not pain free but tolerable.
  6. Impetigo can be caused by Staph OR Strep bacteria. So, not surprising it could be a pre-cursor to PANDAS.
  7. 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 th
  8. 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
  9. 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-
  10. 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?
  11. 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 themselve
  12. What is laser light therapy? Who performed it for your child?
  13. WOW! Good for you for getting your daughter back. Tough road. You have great advise. Thanks!
  14. Yeah, looks interesting! Hhhhmmm, is right.
  15. 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.
  16. 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 t
  17. Endocrinologist would handle bad adrenals. This is worth investigating.
  18. 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.
  19. My son started with vocal tics after viral croup at age 3.5 yo. He does not have dx of TS.
  20. 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 su
  21. 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
  22. 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 fo
  23. 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.
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