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mdmom

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Everything posted by mdmom

  1. I posted this on the Lyme board, but there's not much activity there these days.... DD13 was making good progress on IV treatment for co-infections and took a sudden turn for the worst 18 days ago. Her most severe and debilitating symptom is an unrelenting frontal headache. Nothing touches the headache - we've tried various OTC pain meds, Rx muscle relaxants, massage, chiropractic, epsom salt baths, Vitamin C/Magnesium/B Vitamin infusion. Spoke with LLMD today and had a lightbulb moment.... The headache started after she visited a friend's house who just had their old bathroom comp
  2. DD13 was making good progress on IV treatment for co-infections and took a sudden turn for the worst 18 days ago. Her most severe and debilitating symptom is an unrelenting frontal headache. Nothing touches the headache - we've tried various OTC pain meds, Rx muscle relaxants, massage, chiropractic, epsom salt baths, Vitamin C/Magnesium/B Vitamin infusion. Spoke with LLMD today and had a lightbulb moment.... The headache started after she visited a friend's house who just had their old bathroom completely remodeled. My daughter reported that the old bathroom was covered in mold. I'
  3. For those of us who are wary of vaccines....are we surprised by this?? http://health.yahoo.net/news/s/nm/insight-evidence-grows-for-narcolepsy-link-to-gsk-swine-flu-shot
  4. LLMD prescribed IV Avelox for Bart. DD had a bad reaction to oral Rifampin 1 year ago when we tried to go after Bartonella, so IV Rifampin is out. Anyone have experience with this antibiotic?
  5. It's too early to tell. He just had IVIG on Thurs and Fri and will get it every 4 weeks. So time will tell...
  6. Putting together.... Read your inbox - I sent you a personal message.
  7. DS just had his first HD IVIG (finally - only had to wait 27 months for this) and doc did not use steroids or benadryl to manage side effects. Instead, doc did pre-hydration with IV Vitamin C and Magnesium and we dosed ibuprofen every 6 hours. And he is drinking loads of water. No nausea or headache. We are so happy to be moving forward with his treatment.
  8. Best of luck to you today. Dr. T is a real warrior for kids like ours. I hope you will get your questions answered. Not sure of your son's history, but have you ever seen an LLMD? Not suggesting he has Lyme, however, many LLMDs are very good at diagnosing strange infections that other docs don't think to look for. Also, they tend to diagnose based on the clinical picture and use test results only as further proof of a suspected infection. Sounds like you've done it all at this point, so forgive me if I'm speaking out of turn. Hang in there....and know there are others out there
  9. I cannot answer your questions specifically about Coventry, as I have BCBS. However, here are a few things to consider: 1) Find out exactly what diagnosis your doctor will use for the pre-authorization. Is it for Lyme or another infection (strep, Babesia, Bartonella, etc)? Doc only needs to use one dx code. 2) I recommend that you avoid calling the insurance company yourself and mentioning Lyme or PANDAS - they will note this on your file. 3) Find out if your policy has a Lyme rider. If not, there should be less of a problem getting coverage for Lyme treatments. With my
  10. Does your child also have an immune deficiency diagnosis? Most insurance companies will cover IVIG for this, and some children with PANDAS/PANS also have a primary immune deficiency. Have you read your medical policy for IVIG? Here is a link to one I found on-line for BCBS of IL: http://medicalpolicy.hcsc.net/medicalpolicy/home?corpEntCd=IL1&path=/templatedata/medpolicies/POLICY/data/RX/RX504.003_2011-03-15&ctype=POLICY&cat=Prescription#hlink This specifically excludes IVIG for PANDAS, as many insurance companies do. I just fought my insurance co (BCBS of MN) fo
  11. 1. How long were you there? 3 weeks 2. Where did you stay? Rented a house near the beach and got to do fun things each day. 3. Are you with your child during therapies? part of the time, but he is 15 and dr. felt like he was mature enough to be on his own mostly 4. Is it a full day (9am to 5pm)? mostly 1 hour/day 5. Was there therapy over the weekend? no just homework 6. How did your child feel about the process? very positive - got another piece of my son back 7. Did you meet with Dr. Storch? Dr. Murphy? Dr. Storch did intake interview on Day 1; Dr. R did the therapy and I seriously wis
  12. We use a coconut oil-derived supplement called Lauricidin for it's anti-viral properties. What effect are you looking for from the coconut oil?
  13. I'm not sure I agree with the strep stuck in the basal ganglia theory either. My DS15 had an intestinal virus on Christmas Day and quickly slipped into some of his old ways - withdrawn, irritable, more OCD, unfocused, forgetful, much less personality. This lasted for over 2 weeks and he finally woke up yesterday his "old self." (Which technically for him, is really his "new" self since we have been treating infections - not just strep - for almost 2 years and he has been symptomatic since at least age 4) When DS15 first got the PANDAS/PANS diagnosis, his ASO titers were high and after 8
  14. I suspect some of the PANDAS docs we all see are staying below the radar simply because they would come under scrutiny for treating our kids. Let's not forget that many insurance companies still aren't on board with PANDAS (I just fought this fight for 8 months with mine) and docs need to get paid for their services. So "rocking the boat," by coming out in the open puts us all at risk for losing our treating docs. Sucks, really. But I'm hopeful that the attitudes will change, as one at a time, our kids get better.
  15. In our house, Mom was 27 when DS15 was born; Dad was 30. I think this topic came up a few months back and the most common thing people reported was autoimmune disease among family members. In our case, I have had autoimmune symptoms for 1/2 of my life and was diagnosed with Hashimoto's Thyroiditis 3 years ago.
  16. Something to keep in mind is that it takes a functional immune system to make antibodies to pathogens. Most tests for infections are antibody-based. My son rarely has anything positive in his labs for infections. We found out last year that he has a primary immune deficiency. It might be a good idea to look at her immune function and running the IGG, IGA, IGM and IGG subclass tests might give you some clues. My son seems to initially fight infections, but doesn't fully clear them. So he is a walking petri dish of low-grade infections. He has responded to aggressive treatment with
  17. Excellent program. Just got home a few weeks ago after 3 weeks there with DS15 who has suffered with OCD and anxiety for most of his life. They use the same exposure model for OCD and specific anxieties. I learned a few things myself and just might get over my fear of flying using their techniques I HIGHLY recommend the program and specifically a certain doc, of which I will PM you the name.
  18. Bumping up hoping for more responses. Thx.
  19. Jtsmom - What dose of High dose IVIG is your son getting? And why do you have to do the SCIg too? you can PM me if you'd like. Thanks in advance.
  20. We are preparing for DS15 to get his first IVIG treatment after the holidays. Doc has ordered 2mg/kg (PANDAS dose). He also has a primary immune deficiency. I believe doc wants to do high dose every 4 weeks. Is this too frequent? Mind you, docs speculate that he has had PANDAS since age 4 and was only diagnosed at age 13. Aggressive treatment for infections began 20 months ago, so we seem to have those pretty well under control (he's been on IV abx, IV antifungals for 10 months). He is not currently in a PANDAS flare. Thoughts?
  21. After an 8-month fight, we finally got pre-authorization without the vaccination challenge required in our policy. My son is so happy - he is hoping he will be able to go back to school by the fall since his immune deficiency will be treated. Early Christmas present indeed. Thanks to all of you who have sent me advice, offered support and listened to me whine. Thank goodness for this forum!
  22. Just got this through my personal email. This reporter will be pitching his story idea tomorrow to the staff. Please send emails to him if you have a story you would be willing to share. No names will be used. Specifically, there is interest in stories where children and families were treated poorly by medical institutions with regards to PANDAS/PANS. At the very least, please email the reporter to tell him how important it is to spread the word about PANDAS/PANS. The reporter is Pat Walters pwalters@wnyc.org His phone is (646) 829-4585
  23. Looking for a therapist that is well-versed in ERP in Baltimore or D.C. area. We will finish up with therapy at USF next week and will definitely need support when we get home. Please PM me any recommendations. Thanks.
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