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mdmom

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Posts posted by mdmom

  1. Everyone in my family has been taking this for 2.5 years. I cannot tell if it helps, as it works to regulate the immune system and we are still working through infections.

     

    One thing that I find intriguing is that for 20 years I was ANA+ with no specific dx, although I was worked up for Lupus but did not meet the criteria. After 2.5 years of treating Lyme & Co and yeast with meds and supps, I am no longer ANA+. Not sure if the LDN had anything to do with this, but our doc is adamant about us all taking it.

  2. My DS16 has been on abx for over 3 years now - 2 of which he has been on daily IV abx. For him, the benefits outweigh the risks. Long-term abx are not unheard of. It's standard practice of care to prescribe long-term abx for rheumatic fever, which is strep-induced. Often children with RF are on abx until adulthood.

     

    We also address immune function and gut health with high doses of probiotics, diet (organic, or at the very least, non-GMO, gluten/dairy free, low sugar) and liver support among other things.

  3. A few things to keep in mind....

     

    1) Unfortunately, many of us here travel far and pay out of pocket to see doctors that are willing to treat our children with PANDAS/PANS. The most important thing is to get help now.

    2) Strep is only one of many triggers of PANDAS/PANS. Work with your doctor to look for other triggers - viruses, tick-borne diseases, mold, etc.

    3) Make sure your son's doctor checks immune function - some children with PANDAS/PANS have underlying immune deficiencies.

    4) If you pursue IVIG, do not call your insurance company and tell them that your child has PANDAS. Most insurance companies do not cover IVIG for the diagnosis of PANDAS - in fact, some companies specifically list this as an excluded diagnosis in their policies. Some docs have had success in getting it covered under an post-infectious encephalitis dx, some use immune deficiency codes.

  4. I highly encourage you to rule out Lyme & co-infections. Many of us here have sought help from a Lyme literate medical doctor (LLMD). These types of docs tend to be very skilled at finding hidden infections and diagnosing on clinical presentation rather than relying solely on lab results.

     

    High eosinophils and low WBC is suggestive of a parasitic infection. My son has been battling Babesia duncani (called WA-1 on lab reports) and his lab results always show elevated EOS, low WBC.

  5. Thanks for all of the encouragement. The appt went really well. The hematologist was very progressive - she accepts PANDAS and Lyme & Co and long-term abx use. She said that there are studies showing long-term abx use is actually safe for some people and that in my son's case the benefits outweigh the risks. She did feel like the meds could be affecting his bone marrow, especially the anti-parasitics, which she said can cause the nucleated RBCs to leak into the blood.

     

    She will be following him monthly since his neutrophil and platelet counts are always very low. She said I am to contact her directly if his fever goes above 100.4 because of his neutropenia - she is basically treating him like a cancer patient since he is at high risk for infection - specifically a central IV line infection. (Cross my fingers, he has had a central line for 2 years and no infections).

     

    She may do a bone marrow aspiration at some point to check the marrow, but said it is not warranted just yet.

     

    I was shocked that a specialist could be so helpful and understanding. I have hit so many brick walls with specialists and have had to defend my son's treatment when a doc hasn't understood PANDAS or Lyme.

     

    Slowly I am building a team of docs that understand my son and are willing to help - we have a supportive family doc, a very smart LLMD, a chiropractor, an integrative dentist that does ART, and now a hematologist.

  6. IV abx can still affect the gut, but not nearly as much as orals

     

    My children both have been on IV abx almost 2 years, as they have chronic Lyme & Co. It is by far one of the best decisions made for them. My son has a Hickman catheter in his chest.. My daughter has a port-a-cath. Our insurance has paid for this. The doctor switched to IV after 9 months of failed oral treatment.

  7. These showed up on my DS16's anemia profile that was done 1.5 weeks ago. Yesterday family doc was concerned and gave us the name of a hematologist. Hematologist wants to see us tomorrow - I am worried. I have never had an appointment scheduled so quickly with a specialist.

     

    LLMD says these cells have shown up in a handful of other patients who have Babesia. Let's hope that's the case for my son.

     

    Anyone else have experience with this?

  8. My DS16 gets HD-IVIG monthly at 1.7g/kg. The IVIG dose used in the Yale/NIMH study is 2.0g/kg. (grams of medicine per kilogram of body weight). He has done well with this dose. It is managing both his PANS and immune deficiency.

     

    Our integrative doctor does not prescribe steroids or Benadryl, which is unusual. Instead the doc orders IV pre-hydration (1 hour before IVIG) with 400mg Magnesium Sulfate/25g Vitamin C and we dose ibuprofen 600mg BID before, during and for 2 days after IVIG. He has done very well with this protocol with no side effects.

  9. If you are seeing an immunologist well-versed in PANDAS/PANS, disregard the following advice.

     

    Be prepared for the doctor to push-back when you bring up the possibility of PANDAS/PANS. Many doctors that don't understand it will just dismiss it. Be strong. Trust your instincts. If the doctor is not willing to partner with you, find another doctor that will.

     

    In the event that the doctor seems at least interested in the dx, take copies of these articles with you:

     

    http://www.ocfoundation.org/PANDAS/

     

    http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf

     

    Educate the doctor and remind him/her that the research is coming right from the National Institute of Mental Health (NIMH).

     

     

     

  10. Thanks for the input everyone.

     

    I guess I am hoping that after all this time, what I am seeing is not a herx. DD14 is really on her way to getting back to normal - she is back to school after a 20-month absence, getting good grades, making friends (remember she is non-PANS and my neurotypical kid). But I am wondering how will I be able to tell when she is ready to end Lyme & Co tx. Our LLMD says that she needs to be symptom free on IV for 6 weeks and then switch back to orals and remain symptom-free for 3 months before pulling all meds. DD is far from symptom free and I think that perhaps some of her symptoms will be permanent, so when do you start counting the symptom-free days if some of her symptoms seem permanent? So perplexing to me.....

  11. I should know this by now since we are 2.5 yrs into aggressive lyme & co treatment.

     

    We are pulsing 'Tindamax BID this week and my daughter is angry - it's not awful, but more than I've seen in a long time. She used to have Bartonella rage. (she is my non-PANS child).

     

    She seems to be nearing the end of her IV treatment for Lyme & Co (she's been on IV for 19 months) and her symptoms are mild at this point.

     

    Do you think the Tindamax anger could be a herx this late in the game? Or have others noticed this as a side effect of Tindamax?

     

     

  12. Hrosenkrantz...

    My DS16 has had 10 months of HD-IVIG, but this is only part of the aggressive tx we have done. He has been treated and continues to be treated for viruses, Lyme & Co, strep, methylation issues. we have also addressed diet (4 yrs of gluten/casein free), organic foods, gut health with probiotics and other GI support supplements. IVIG is helping, but it has not been a cure-all.

  13. I've been on this forum a long time and many here have reported that their children with PANDAS/PANS have sensory processing issues. My DS16 was treated for sensory issues for many years by an OT before he was properly dx with PANDAS/PANS. I even made a 10 lb. lap pad for him to use while he was sitting and he would move around the house in something called a "body sock." Sounds weird, but his brain was obviously so scrambled and not processing input correctly that he needed extra sensory input to override the confusion in his brain. After 2.5 years of aggressive tx and 10 monthly HD-IVIG, his sensory issues are hardly noticeable. I imagine over time with continued tx, your son's sensory issues will level out.

  14. First of all, let me assure you - you are already on the right track by posting on this forum and connecting with other parents. So good for you and your son for linking his behaviors with the FluMist and considering his earlier symptoms as a possible link to behaviors.

     

    My son had the FluMist at age 9 and it caused his worst PANDAS/PANS exacerbation. We did not make the connection until he was first diagnosed with PANDAS/PANS at age 13.

     

    There is absolutely a connection with your son's obsessive behaviors and the vaccine. There have been multiple papers written on the topic of vaccines and onset or exacerbation of autoimmune disorders. Google "Shoenfeld Vaccines Autoimmune" and will find abstracts that support this.

     

    My son has a similar background. Constipation since 8 months, diagnosed with SPD at age 8, low muscle tone, etc. Your son's gut issues are a red flag for immune dysfunction. Doctors estimate that approx. 70% of the immune system is in the gut, so gut health is so important and many on this forum have reported gut dysfunction with their children.

     

    If your pediatrician is willing to education himself/herself, here is a good article about PANDAS/PANS: http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf

     

    Here is another article from the OCD Foundation that is useful: http://www.ocfoundation.org/PANDAS/

     

    If your pediatrician isn't open to the idea of PANDAS/PANS, find another doctor that can help. Sorry to be so direct, but many of us here went from doctor to doctor to doctor searching for answers. There is no time to waste since your son could be helped by early intervention since he is so young.

     

    Best of luck to you.

     

  15. I am re-posting this from last week's thread on the same topic....

     

    Tylenol (acetaminophen) depletes glutathione. Glutathione is the body's most important antioxidant. It has a critical role in protecting cells from oxidative stress and maintaining the immune system.

     

    Here is a good article on glutathione: http://www.huffingto...f_b_530494.html

     

    High doses of acetaminophen or long term use depletes glutathione, which is made by our liver. This is the primary reason for this widely used over-the-counter drug's well-talked about liver toxicity. When someone overdoses on Tylenol, NAC will be administered to clear out the liver. NAC (N-Acetyl-L-Cysteine) is a precursor to glutathione.

     

    In my ignorance many years ago, I often gave Tylenol post-vaccinations to both of my children. Glutathione escorts mercury out of the body. Some vaccinations at the time my children were young contained mercury. By giving them Tylenol, I was unknowingly putting them at risk for mercury toxicity. They both have heavy metal loads to this day.

     

    We only use Ibuprofen and completely avoid the use of Tylenol.

  16. Tylenol (acetaminophen) depletes glutathione. Glutathione is the body's most important antioxidant. It has a critical role in protecting cells from oxidative stress and maintaining the immune system.

     

    Here is a good article on glutathione: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

     

    High doses of acetaminophen or long term use depletes glutathione, which is made by our liver. This is the primary reason for this widely used over-the-counter drug's well-talked about liver toxicity. When someone overdoses on Tylenol, NAC will be administered to clear out the liver. NAC (N-Acetyl-L-Cysteine) is a precursor to glutathione.

     

    In my ignorance many years ago, I often gave Tylenol post-vaccinations to both of my children. Glutathione escorts mercury out of the body. Some vaccinations at the time my children were young contained mercury. By giving them Tylenol, I was unknowingly putting them at risk for mercury toxicity. They both have heavy metal loads to this day.

     

    We only use Ibuprofen and completely avoid the use of Tylenol.

     

     

     

     

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