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HT's Mom

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Everything posted by HT's Mom

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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?
  8. 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.
  9. 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!
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. I would absolutely unequivocally go for IVIG. You are lucky to have a believing supportive PED. If there is anything I regret in our long journey is not knowing to do IVIG way way back. Years later, after two IVIG's and tonsils out for safe measure, my kid is back. I agree that abx are a bandaid and that whatever mechanism IVIG resets it is necessary at some point. It can't hurt! (assuming lyme is not an issue - I know others have had problems after IVIG when lyme is present.) But if you can swing it, do it.
  16. We are having my son's out on June 21. He is 17 and in a good place after years of battle, so I'm nervous to mess with things. But I just want to get them out as a protective measure for his future. Two IVIG's, a year of Augmentin, all with major gains, but still not himself. Now doing very well - His most recent gains were after a course of clindomycin for elevated mycoplasma titers, prescribed by dr. T. The ENT doesn't see a reason to do it, but is ok with it based on our story and the papers I took him.
  17. Welcome to the forum. Your question is a very good one, as it sounds like you have done your research and are asking the logical questions, which I too have asked the PANDAS doctors we have worked with. I know there are much better informed parents on the forum than me who will chime in soon, but just to get you started, you can look at the information on the "Helpful Threads" post at the top of the forum, and under that, "Frequently Asked Questions." There is information about antibiotic treatment, and about intercellular strep that will help answer your question. The PANDAs doctors I have talked with say it is not known completely why prophylactic antibiotic works, but it is believed it is protective of the brain and preventative against future infection and even against infection hiding in cells that can be released as cells die off. Hope that helps. Can you tell us about your child's situation?
  18. I'll just repeat what the others have said - don't panic, although it is easy to! We have all been where you are now, but there is definite hope and you don't have to wait until August. Get in the study if possible. If for some reason he doesn't qualify, and your local doctor won't prescribe longer antibiotics some of the other PANDAS docs will do a phone consult with you and get you started on the right course of treatment until you see Dr. L. Where are you located? Sounds like northern VA, I'm in charlottesville, so if you are anywhere near, I'm happy to help. Hang in there - your son sounds exactly like mine and so many others at a similar age, and mine is now a happy healthy 90% ok 17 yr old.
  19. Hi VA MOM, I would love to talk and help you get oriented to all this - it sounds like you know a lot already but it always helps to talk with other parents who have been through the PANDAS history, had most of the treatments and success. Please let me know if you would like to talk/meet. I live right in C'ville, near town. My kids are at WAHS. Email me or call me 434=249=7396. Randi

  20. Hi VA Mom! I'm in Charlottesville! Let's talk - I will PM you. I have a PANDAS son, now 17, doing well, long history to share. I can help you with some info. UVA knows virtually nothing, unfortunately. Your case sounds like a definite PANDAS case to me, as it does to other members as you can see.
  21. Wow, LLM, this was timely. Our son just had a positive myco p, and the local doctor wants to use the standard five day z-pack. Dr. T says that's not enough and will get back to us on which antibitotic he wants to use and for how long. This article discusses the need to rotate abx, just like you say they do for lyme. Question for you, though, about probiotics. The article, like many, mention just Lactobacillus acidophillus. Is this enough? What's the deal with this versus floramore or others with 14-50 billion microorganisms, etc. I'm so confused standing in whole foods trying to figure out what to buy. I'm also curious if you know more about the diagnosis of myco p. The article says the standard bloodwork isn't necessarily reliable. Do you know if the other more intensive blood serology they mention is available or doable by standard labs, etc? Thanks.
  22. We ran the usual blood tests last week. Strep tests all negative, showing low titers, but mycoplasma came back at 2.83, twice what it was several months ago. DS17 is on 500 Augmentin daily. Our local doctor wants to call in a regular 5 day Z-pack of zithromax. Is this enough? Do we do it at the same time as the Augmentin, or switch? Is there a better antibiotic for myco p? Any advice is appreciated! Thanks.
  23. "In fact, I would argue, it is the dedicated drs who actually want to practice medicine the way it should, that go for this idea but the way the system is set up now, it's like a production line, Drs don't have the time to go indepth with patients at a typical Dr visit. The extra money is the money you would pay if you went to an alternative Dr as they do hour long visits, really get to know the patient etc. " My brother-in-law is a family doctor who is just about to go into one of these programs. He is exactly as Kiera describes, a very dedicated doctor who craves thorough and deep relationships with his patients but is forced by the current insurance situation into ten minute appointments and 80 hours a week to keep up with all the paperwork, etc. In his case, he will be the doctor in his group offering the service, and the patients who do not chose to go with him can stay in the group with other doctors. He debated for a long time, as he is guilt ridden about charging more for what he would want to (and used to) do as a matter of course, and telling patients that he has had for twenty years they can't see him anymore if they don't join. But the current situation is killing him, and he really wants to be an on-call doctor who can help a patient at any time with anything. When specialists are needed, he will have the time to communicate and coordinate with the specialist on behalf of the patient. I actually wish I could use him as our local doctor (we do live in the same town), but ds refuses to see a family member for what he sees as embarrassing pandas stuff.
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