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Everything posted by mdmom

  1. I would recommend talking to your doctor about knocking out the infection(s) before you jump into a costly procedure like plasmapheresis. It's imperative to lighten the load on the immune system if you are going to try to regulate it with something like IVIG. And plasmapheresis may provide temporary relief from symptoms, but it will not address infections permanently.
  2. Thanks, everyone. I really appreciate all of the input and ideas. I really would be lost without this forum.
  3. This is from a mass e-mail that I receive from lymedisease.org If anyone tried to do this, as I did this morning, you will likely have found out that newspapers like a local angle. My features editor told me she couldn't print anything that didn't involve someone in the county. So, we need to come up with kids Dr. Jones has treated and see if their parents are willing to have them be part of our feature. This is what will get our story told. If you have a child Dr. Jones has helped and are successful at getting your paper to run our story, your efforts might save another child's li
  4. SurfMom, My thought exactly - I knew what I was getting into, and we certainly have been methodical and patient with each step of treatment, but I guess I still have that hope in the back of my head that my son will just wake up one morning and not have to worry or wonder about how is brain is functioning. Thank you - so glad I'm not in this foxhole alone.
  5. Thanks, philamom. Your kind words really help. I am not 100% sure he wasn't exposed. His chances of exposure are limited, though. He does not go to school and we aren't even taking him to church once a week like usual b/c of the risk of exposure. It probably doesn't help that we started a parasite protocol last week.
  6. DS15 had first HD-IVIG 3 weeks ago. He is slowly going downhill and I realize that there could be a turning-back-the-pages thing happening, but it's really hard to watch this. He was not in an exacerbation when he had the infusion. In fact, he has not had a significant exacerbation for a very long time, since we have worked at knocking down infections for over 2 years. He is very sad and annoyed that his brain isn't firing correctly - he cannot comprehend math concepts, his writing is deteriorating, he seems depressed and he is very irritable. I knew going into this (as did he) that thing
  7. smarty... thanks for sharing this. I will be there. I live north of you in Harford County, so it's short drive for me.
  8. DS15 (PANS dx) also has a CVID dx. IGG levels hover around 600. Normal for his age would be no lower than 946. He qualified for insurance coverage for IVIG with his low levels, so we just started IVIG every 4 weeks. Doing high dose right now, but wondering if we will eventually drop to a maintenance dose to address immune deficiency only, as the high dose obviously would help with both the autoimmune issue and the immune deficiency, but high dose may be too much long-term. Not sure if the IGG levels will stabilize or if he will always need IVIG, like most people with a primary immune defic
  9. Sorry to keep going around the block on this, but that IGG level is probably an active infection that's been around awhile. I think most here would agree.
  10. Be careful of calling your insurance company with that diagnosis code and do not give them any other information. Call first and ask for the Medical and Behavioral Health Policy Manual. They should be able to send you a copy or at the very least, send you a copy of just their IVIG policy. Do not give any other information, as they will record your conversation and take notes on why you called in. If they ask why you want it, just tell them it's your right to have a copy. Let your doctor handle the rest of the communication with the insurance company unless you have to appeal after a denia
  11. rowingmom... itching in the evenings makes me think parasites. Maybe the GSE is stirring up a parasitic infection?
  12. DS15 is 6'2" and 130 lbs and has taken 1 gm at breakfast and 1 gm at dinner. He now takes a maintenance dose of 1 gm at breakfast. DD13 is 5'5" and 160 lbs. and takes 1 gm twice daily. They have both also taken IV acyclovir (equivalent to oral Valtrex) for many months (alternating between oral and IV throughout the week) with no problems.
  13. I used Trazadone once for my non-PANS/PANDAS daughter who has sleeping issues as symptoms of Lyme, Bartonella, Babesia. I, like you, was concerned that it is indicated for depression. I thought our doc was secretly trying to tell me something about my daughter.... I begrugingly tried it once - with my daughter's permission since I always tell her it's her choice of what she puts in her body (remember, she's my non-PANS/PANDAS child, so I can reason with her like this). It made her feel like she was going crazy. She kept telling me, "Something is wrong with my brain." Not sure if she f
  14. Our doc would interpret the high IGG Mycoplasma as an active infection that's been around awhile and the body is clearly still fighting it. Most docs will just brush off these results, but many on this forum have found that Mycoplasma is a piece of their child's PANS/PANDAS puzzle.
  15. I agree with Deedee...it would probably benefit your son to find an LLMD. LLMDs are very good at dealing with all sorts of infections. I wish I could tell you otherwise, but healing from PANS/PANDAS is a long road. We started treating our son at age 13 in Nov 2010. He did not start showing much progress until about 1 year later after treating infections aggressively. I have to keep reminding myself that he did not get sick overnight or from one thing, so he will not get well overnight. We have treated (despite mostly negative test results) for Lyme, Babesia, Bartonella, Mycoplasma
  16. DS15 had his first HD-IVIG 12 days ago and my husband and I have been waiting to see some effects, good or bad. Today was the first day he seems "off." Things I haven't seen in at least a year (since we've knocked down infections) are coming back: old compulsions(without the obsessive thoughts), sensory issues, agitation, trouble with math problems. Classic PANDAS/PANS symptoms. I guess it sounds weird, but I am glad things are getting stirred up and I know that often kids will experience a "turning back the pages or peeling the onion" effect after steroids or IVIG. My question
  17. Yes, I have worked with the IDF and found it to be a good resource. When I was fighting my insurance company last fall for IVIG (for CVID), they had one of their consulting docs look at our case. However, he basically said that PANDAS/PANS is not a proven disorder, so this was disappointing to hear. Perhaps the IDF could use some educating by parents dealing with PANDAS/PANS. The IDF is in my backyard here in the Baltimore area.
  18. Flumist did my son in as well, which is why I am so passionate about making sure people in my life at least educate themselves about vaccines.
  19. I know Mercola is controversial in the mainstream medical community, but this article is worth reading. http://articles.mercola.com/sites/articles/archive/2013/01/29/genetically-engineered-flu-vaccine.aspx?e_cid=20130129_DNL_art_1&utm_source=dnl&utm_medium=email&utm_campaign=20130129 I was particularly struck by this part of the article: Vaccine Damaged Child Awarded $1 Million A lot of people still believe vaccines are safe, not realizing that children are being permanently harmed each and every day by mandated childhood vaccinations. Sadly, once that happens,
  20. My son has been on Valtrex for about 14 months. He has made huge gains on it. I've said this many times before, so forgive me for repeating myself - but he calls it the "magic blue pill." He himself could notice a difference in how he felt emotionally and physically after 1 month on it. He took (2) 1gm pills/day for 1 year and we recently dropped to a maintenance dose of 1 pill/day. My DD13, DH and I have all taken it long-term with no noticeable side effects.
  21. My son is still doing well after his IVIG pre-infusion with this hydration. He had no side-effects from IVIG. Also, my daughter had a similar cocktail last week at dr.'s office - 25 g Vitamin C + 400 mg mag sulfate + a bunch of B vitamins. She is no worse or better at the moment, so no herx with her either. I was more concerned about giving mag sulfate, as many years ago I watched a friend with pre-term labor become delerious on it, but our home health nurse said that 400 mg of mag sulfate is a low dose compared to what they would give in hospitals for things like pre-term labor. Ou
  22. Thank you for this. My daughter just got finished singing the "why me, why now," song and we both were crying. We watched this together just now....it was a good way to finish a hard day.
  23. mama2alex... Thanks for sharing your experience. The info is most helpful. laure - so glad to hear things are improving for your daughter - I know it's been a long road for your family.
  24. I sent you a personal message. Check your inbox.
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