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HT's Mom

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About HT's Mom

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  • Birthday 10/06/1964

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    Virginia

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  1. can I PM you?

  2. Has your son been tested for lyme? My understanding is that where pandas patients have had bad reactions to IVIG it is very often because there was undiagnosed lyme. LLM had this experience with her child. You can pm her or look for her posts about this.
  3. My 18 yr old DS has been prescribed 180 days of paquenil by Dr. L. It is normally used for autoimmune diseases like Lupus and rheumatoid arthritis. She seems to think it is anti inflammatory, and has added it to his 1000 2x/day Augmentin. She has also added 28 days of Rifampin. Any experience with Paquenil appreciated.
  4. Amazing but sadly not surprising that they would "rule out" Pandas and not run any additional tests. If she has not been on ANY antibiotics at all she needs immediate full testing to pin down the correct antibiotics to try but there is little or no harm on starting her on a course of Augmentin or zith while waiting for results. They may not want to do it because she tested negative for strep but insist - so many of our kids do also but abx help anyway. Meanwhile, you can also contact Dr. T to get a phone consult within a week or so - he will prescribe all necessary tests. and abx.
  5. I actually don't know if the waiver will be enough - we are just submitting the forms to the colleges now. We'll see! I'll let you know.
  6. Hi, my sons are going to college in the fall. One is going in Virginia where the meningitis vaccine is required, and the other to NC where a TB test is required. Dr. T is writing waivers for both. We are opting out of all "optional" vaccinations.
  7. Yes, Yes, Yes. If you don't have a lyme situation (per LLM's experience), do IVIG. I wish I'd known to do it way back when pandas started for our ds, now 17. IVIG #1 brought him way back, did #2 six months later because there was still some anxiety/intrusive thoughts (tics were minimal by then). Today he is 90%. Both times were dramatic improvements. The procedure itself is no big deal to be worried about - other than expense of course. Like many, ds did have severe vomiting afterward, but this stopped within 24 hours. All in all, I would highly recommend after all you have tried.
  8. I know that there have been many posts about the flu mist having possibly kicking off pandas flares, in fact I think we had that happen three years ago. I have avoided it and the shots since then, but this year's flu looks rampant and scary. Does anyone know whether the shot is ok, and why the difference?
  9. I recommend you contact one of the PANDAS specialists doctors right away. Wwe have used dr k and dr t. Dr. t will write you lab scripts for bloodwork to check for many possible infections, immune system health, etc, and can then recommend and prescribe appropriate abx. Right now it sounds like you are randomly using augmentin and zith, which may or may not be right for your specific son's issue. Not that it's easy to pin down the perfect abx, but guidance would help you try the most appropriate things. IVIG is important to consider closely as well since you are 2 + years in. I believe the younger the better - we treated our ds at age 16. I wish we had known and done it at 11 when things were first so bad for him.
  10. Hi there, Been there, done that too with my now 17 yr old. Battling since age 4-5, didn't diagnose until 11. All good from 11-15 after treatment with penicillin /augmentin. Then Bam. OCD/ tics back again. It sounds like you are on top of things and all advice given here I would reiterate. I would only add to be VERY open to IVIG treatment early as opposed to waiting and treating solely with abx. Dr. T and dr m will discuss this possibility with you, and your natural inclination might be to wait to see if abx work. But at her age there is reason to do this sooner than later. It's the one thing I regret not knowing earlier to do for ds, it changed everything. Dr k believes its an eventual necessity for most, especially older kids. Good luck!
  11. Go anyway. He is recognizing pitands (see his website webpediatrics.com) and some kids don't necessarily " react" around strep. Your sons pandas symptoms may have started with strep, or something else. Have you had his bloodwork done to check titers? In any case since dr k is so close I would consult with him. He treated my son.
  12. Hi - did you contact the NIH to see if your child qualifies for the study? It may be too late if you ahve done steroids and other thigns, but it is worth checking. They need participants,and another child I sent to teh study is back to himself after treatment there.
  13. so, Your son was 15 - and did IVIG helped him ?sometimes I'm worried that we have 'discovered' ivig treatment too late..my son is 12, allready in puberty and before IVIG he was having severe vocal and motor tics for 4 years.. Same here - my son had sever vocal and motor tics at various times over his life, the worst at age 11, which we treated successfully with antibiotics. But at 15 or so it cam back, different but definitely Pandas. IVIG definitely helped immediately - but not completely and he did backslide some. Did the second one six months later, again much better, not 100%. Today, he tics a bit but nothing debilitating. He'll be on prophylactic abx for a long time, and we test once in a while to see if anything new is on the radar. Did it help your son? I wish I'd known to do it back when he was little.
  14. I have twin 17 yr olds, one of whom has had Pandas from a young age. Last spring just before school ended my boys' guidance counselor called me to ask me about Pandas because her own 8 yr old son had all of a sudden woken up with a severe OCD fear of opening his mouth. He had barely eaten or spoken for weeks. He had also tested positive for strep. He was the perfect candidate for the NIH study from what I could tell, so I encouraged her to contact them. She took her son up in June for testing, and they entered him in the study. After the first round of treatment (she didn't know if it was placebo or IVIG) he did not improve at all over the summer. In August they went up for round 2 and learned he had indeed been given the placebo, and this time he was treated with true immunoglobulin. I am so pleased to tell you all that this little boy is now "95% me, 5% pandas" in his own words! The couselor knew our Pandas story, and recently met with my son to tell him about hers. She told my teen that without him she would never have known how to help her child, and it was so fantastic for him to hear this and know his story had touched someone else who wasn't going to suffer for years without knowing what was wrong. My understanding is that this child was the last one to enter the study - they still need five more.
  15. My son had two IVIG's with Dr. K. Definately worth it, even though we hoped it would just be one. My son was 15 and 16, and had had Pandas for years, so I do think that younger ones have a better chance of just doing one. I agree with LLM that Dr. K doesn't necessarily look wider at all the other factors and possible infections that cause pandas symptoms, but at least he is treating. I think afterward parents often need to consult further with other docs - we ended up consulting with Dr. T and treating mycoplasma specifically, whereas Dr. k was just dealing with strep. But do the IVIG regardless.
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