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mdmom

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Posts posted by mdmom

  1. Sorry you are having to fight so hard...I completely understand. I had to fight most of last year to get my insurance company to approve IVIG for my son (who has a valid immune deficiency).

     

    Just wanted to point out that for us, it doesn't matter that the doc ordering the IVIG is out of network. Our LLMD (who is out-of-network) orders IVIG and an in-network infusion company sends a nurse to our home to administer the IVIG.

     

    Can you get the doc to order it for home infusion?

  2. Have you looked for other infections? What are her total IGG/IGM levels? I trusted our LLMD when she dx my son 2.5 yrs ago with multiple infections based on clinical symptoms only. It was only after 2 years of treatment for infections and 4 IVIG treatments that he tested positive for the infections that he was being treated for all along. His immune system was not mounting a response to infections and therefore all tests had been negative (most infection panels that docs order are antibody-based and docs assume one's immune system is making antibodies when infection is present).

     

    My son was on IV nutrition (TPN) for awhile too since he wouldn't eat for fear of vomiting and he was having real GI pain and GERD. Our LLMD feels that some of the infections (tick-borne) have settled in his GI tract.

  3. I would like to add that some children with PANDAS/PANS also have immune deficiencies and therefore, they do not produce enough antibodies to properly fight infection. My DS16 also has a primary immune deficiency. In our search to find help for my son (who was 13 and a chronic case by then), we ended up at a Lyme-literate-medical-doctor (LLMD) who clinically diagnosed my son with multiple infections (some tick-borne). He was negative on all the infection panels except for strep and mycoplasma. But I trusted our doc and she aggressively treated him for Lyme, Babesia, Bartonella, Mycoplasma, Strep, Candida, viruses. Finally, after 2 years of aggressive treatment with antibiotics, antifungals, antivirals, my son started receiving monthly high-dose IVIG (HD-IVIG). After 4 treatments, the doctor tested for infections again (he had been tested multiple times and always came up mostly negative), and he tested positive for all of the above infections. We had waited a sufficient amount of time between IVIG treatments so that the donor IG did not skew his test results. The IVIG helped his immune system actively fight infection. Antibiotics only do part of the work in fighting infection; one's immune system is supposed to do the rest of the work.

     

    Whether you are dealing with Lyme and co-infections or not. LLMDs are very good at diagnosing and treating weird infections that may not be showing up on blood work.

     

    I've been around this forum quite awhile. My son is a chronic case, so don't be discouraged by those of us that have been treating for years. He was symptomatic during his toddler years and wasn't diagnosed until age 13. The fact that you are seeking help so early in the game for your son is wonderful.

     

    One thing that many agree on is that you must address underlying infections if you want to see lasting, healing results. IVIG is not a quick-fix for all - and it's costly, especially considering that most insurance carriers will not pay for IVIG for a PANDAS/PANS diagnosis.

     

    My advice: slow and steady wins the race. Like others who have posted on this topic, we have addressed many, many layers of issues including the following:

    diet - we are 100% gluten/dairy free and as much organic as possible, low sugar diet

    gut health - we use high doses of probiotics (it's estimated that 70%+ of your immune system is in the gut)

    methylation

    inflammation - we use circumin (and ibuprofen when there's a flare)

    hydration - drink lots of good-quality water

    hidden infections in sinuses - we use antifungal and antibiotic nasal sprays

    infections - long-term antibiotics

    yeast - antifungals to keep yeast at bay

    immune support - low-dose naltrexone

    chiropractic adjustments

     

    Best of luck to you. This forum will be a source of comfort and good information.

     

     

     

     

  4. It used to be the rule on this forum that doctors' full names should not be posted. Instead, we usually refer to docs by their initials and their location - like "Dr. G in North Carolina." Most likely most of us that have been around this forum for awhile will know who you are talking about.

     

    I have seen many recent posts with doctor's full names being listed - especially in the topic title.

     

    We owe it to our treating docs to use more discretion. Many docs treating Lyme and PANDAS are taking risks to treat patients with protocols outside of standard practices of treatment. Some docs have even lost their licenses for taking such risks.

     

    Please be mindful of this when you are inquiring about a particular practitioner.

  5. My DS15 never has a normal WBC. LLMD thinks it's a combination of things: overload of infections, autoimmunity (PANS) and Babesia, which suppresses WBC production. His levels usually hover around 2.0. Family doc is urging us to see a hematologist but I know the hematologist will blame long-term antibiotic use.

     

    Last week his WBC dipped to 1.1 with a neutrophil count of 200. Yikes!

     

    Has anyone else experienced this with their child? Our LLMD expects this issue to resolve once he combats Babesia.

  6. My DD13 has a wicked case of some strain of Bartonella that we haven't figured out and she is the reason I was planning on going.

     

    However, she went to visit her grandparents home in PA (4 hours away) and went into a Bart flare as soon as she got there. I had to go retrieve her and bring her home since her gparents aren't understanding or comforting.

     

    I was bummed, as I was hoping to gain more insight about this awful disease. Our LLMD heard him speak and said he is awesome. Our doc also knows some of his story...

     

    Dr. B is convinced that his own father died of Bart (on the Eastern shore of MD) and this spawned his work (he's a veterinarian) on human strains of Bartonella and his subsequent development of Galaxy labs, which tests for all strains of Bart that infect humans. LabCorp and Quest only test for 2 strains - Bartonella Henselae and Bartonella Quintana.

  7. My DH had an imbedded tick a few weeks ago - I freaked out since I know first hand how much damage those little buggers can do.

     

    We left the tick attached and I sent him off to Patient First - an urgent care clinic.

     

    The clinic not only had the proper tick-removal tool, but they also gave my husband a prophylactic 30-day rx for doxycycline. I was impressed, to say the least.

     

    You might refer your friend to an urgent care clinic.

     

    According to our LLMD, the choice drug for a new tick bite is 2 Tindamax followed by 1 week of 1 Tindamax daily.

  8. I'd like to offer that one of the best things we have done for my son (and yes, it seems drastic) was put a central catheter in him.

     

    When we started IV abx in Jan 2012, doc ordered a Hickman (central IV line in his chest) to be inserted.

     

    He has refused to eat (fear of vomiting) and we were able to give him TPN through thte line instead of sticking a feeding tube in him.

     

    He gets monthly IVIG through the line.

     

    He gets daily IV abx.

     

    He gets weekly blood draws - blood is drawn directly from catheter.

     

    We give him hydration (Lactated Ringers) when he feels "funky," and it perks him up - doc says it flushes out the "die off."

     

    Does he need to get over his fear of needles? Absolutely. And we are headed to Rothman (again) in August to work on this.

     

    But the central line has been a Godsend in terms of treatment that he might have otherwise refused.

  9. This is the doctor who is a veterinarian by trade who has done the most research on Bartonella strains.

     

    WEDNESDAY, July 17th, 7:00 p.m.
    Bartonella - An Emerging Disease
    Speaker: Dr. Edward Breitschwerdt, D.V.M.
    Where: Kennett Friends Meetinghouse, 250 N. Union Street (Rt. 82), Kennett Square, PA

    If you live anywhere in the area, make sure you make it to this meeting - it will be well worth it. Dr. Breitschwerdt has been studying Bartonella (a common tick-borne disease) for over 20 years and has written hundreds of papers. This is an organism that we all need to understand. Dr. Breitschwerdt calls it a plague in our society, because of its prevalence. When you read the studies, it's amazing how many healthy people have it. They stay healthy until something compromises their immune system, and all the while, they may be spreading it to other people. Free to the public. Go to lymepa.org for more information.

  10. My son was suicidal at age 9, 4 years before he was properly diagnosed with PANDAS/PANS and multiple infections.

     

    My mother's instinct told me to keep him safe, check in with the family doctor and seek out therapy. We chose not to take him to an ER because I knew it would cause him trauma.

     

    We also reduced his stress and removed sharp objects from his reach.

     

    We found out that the suicidal ideation (again, not knowing it was PANS-related) was most-likely OCD related. It was an obsessive thought that he might kill himself. He even had a plan. It was scary and confusing time for our family.

     

    I agree with others here that an ER will not get you the help you need. In fact, it could cause more damage and most likely her medical needs will not be addressed in that setting. PANDAS kids are medically complicated but in traditional medical settings are treated often only as psych cases.

     

    Try dosing ibuprofen (the max dose) around the clock, every 6 hours to get your daughter through this flare.

     

    Hang in there -

  11. Bill's son and my DS15 have almost identical histories. My DS15 went undiagnosed for 9 years as well and by the time he was properly diagnosed with PANDAS (or PANS), 4 doctors considered him a tough, chronic case and told us he would definitely need IVIG.

     

    Rather than jump to IVIG since we would have had to pay 100% for it, we found an LLMD who uncovered infections the other docs were not willing to look for: Lyme, Babesia, Bartonella, EBV, Strep, Mycoplasma, yeast. We started with 8 months of oral antibiotics, antifungals, antivirals with some success. Eventually moved to IV abx, antifungals and have continued IV for 18 months now.

     

    Just 6 months ago (and 18 months into treatment) we were able to get insurance to pay for IVIG. DS15 gets IVIG every 4 weeks. Seems like a lot, but it's also addressing an immune deficiency.

     

    Since starting IVIG, the gains have been small and his progress is bumpy with a 2-steps-forward-1-step-back pattern.

     

    IVIG is not a magic bullet. I do think it is an important part of my son's healing, but it's not the only thing that is helping.

     

    My son has been homebound for 2.5 years, but I believe it has been important to give his immune system a break by not exposing him to constant infections at school.

     

    We see an integrative doc who also addresses methylation (MTHFR mutations), detox (lots of supplements), immune modulation (low-dose naltrexone), sinus issues (rotates antibiotic/antifungal nasal sprays), and gut health (gluten/dairy free, organic diet, high doses of probiotics). We also have done ERP therapy (intensive 3 week program at Rothman) and will return to Rothman for 2 more weeks this summer.

     

    And when times get tough, we resort to ibuprofen.

     

    I think many on here would agree that you have to hit PANS and infections from many angles. But it requires a lot of patience, time and money. It sounds like you are on a good path with your LLMD. Stay the course and give the treatment some time.

  12. My son gets HD-IVIG every 4 weeks - we use Gammaked, which is identical to Gamunex. Octagam is stabilized with sugar, some other brands are not. Here is a good chart comparing each brand:

     

    http://www.bdipharma.com/Comparison%20Chart%202013/Intravenous_Immune_Globulin.pdf

     

    Lots of people post that their children have side effects from IVIG. My son has never had nausea, vomiting or headaches with his monthly IVIG treatments. Our doc also does not use steroids.

     

    Instead, our doc pre-hydrates before each infusion with 400mg Mag Sulfate/25g Vitamin C. We also dose 600mg Ibuprofen every 6 hours.

  13. My DS15 has follows very rigid rules of social behavior and it's mostly based in his OCD.

     

    When we went to Rothman last winter for ERP therapy, his therapist actually had him practice breaking social rules by cursing and even telling little white lies. He did this to demonstrate to my son that nothing bad would happen when he broke minor social rules. My son was sure that God would strike him dead or something else horrible if he broke a rule (e.g. No foul language, no lying).

     

    He still struggles with grey areas and he holds everyone around him to the same standards he holds himself.

     

    I don't know what this looks like in the real world, as he is too physically ill to attend school currently and interacts with only a few peers.

     

    Smartyjones - not sure what advice to give you. But I will say that if there's OCD involved, you do have a more difficult job of teaching right from wrong but acknowledging that not everything in life is black and white. When you figure it out, please tell me :D

     

  14. We have been tackling infections with DS15 for 26 months now. The last 18 months, he has been on daily IV meds for Lyme, Mycoplasma, Strep, Babesia, Bartonella.

     

    The last 6 months, we had hoped that we had infections knocked down enough (but hard to tell b/c he has an immune deficiency) that we thought he was ready for IVIG to do the rest of the clean-up of residual PANS symptoms. And it just so happened that the insurance company finally agreed to pay for IVIG at this time.

     

    He has had 6 HD-IVIG since January. He has had no change in his symptoms.

     

    So now we must consider other issues holding him back: mold, heavy metals.

     

    We are going to leave our home b/c we believe mold is a big issue.

     

    But the infections remain and I believe the IVIG will not help until we can better manage the infections.

     

    IVIG experiences are different for everyone. But from what I've read from other members on this forum, it has made the most sense to knock down infection loads before pursuing IVIG. What that means for each child is very different because of genetic issues, methylation issues, environmental toxins (in our case mold), heavy metal burdens, age of child, etc.

     

    I do not know of any case studies supporting this. Most of us here rely on evidence-based medicine, which is what most LLMDs rely on as well.

  15. My DS15 was diagnosed age 13 with PANDAS. 6 months later after seeing 4 PANDAS specialists, and not being able to find the help we needed because he was so chronic and had gone undiagnosed for so long, we ended up at an LLMD who found multiple infections.

     

    My son's medical issues have now become, sadly enough, my hobby. I research, read anything I can get my hands on, participate in this forum, attend conferences, etc. I have the knowledge that mental illness and in our case, autism (Asperger's) has a huge medical component.

     

    Using my gathered knowledge, I look at people with mental illness, developmental issues, etc. through a different lens than I did before my son was diagnosed.

     

    But I have to tell you that before I even learned about PANDAS, I probably wasn't ready to hear the information.

     

    I have close friends who have children with similar issues to my son's. I want them to listen to me. I want to help their children. But they are not ready to hear what I have to say, or they would be searching for more answers already.

     

    My point is this: Everyone is at a different place in their life's journey. People must be ready to want answers in order to get answers.

  16. Thanks everyone.

     

    mama2alex - PMd you.

     

    tpotter - would you be willing to share your ART practitioner's info with me? We live 1.5 hours from your area so we could travel there. We have a good one here who studied under Klinghardt, but I cannot afford him and he doesn't just charge for ART - he's an integrative dentist who puts everyone on TMJ therapy first b/c he says he have to correct TMJ in order to do ART. I believe this is true, but I cannot do everything at once.

     

    Also have an appt with a PANDAS-friendly ENT for possible tonsillectomy for DS15. We cannot irridicate his strep - he must be reinfecting himself.

  17. LLMD admitted today that I have 2 of the sickest and slowest-progressing kids that she's ever seen. Lyme, Bartonella, Babesia, EBV, Mycoplasma, Strep.

     

    They both have central IV lines and we've been treating with IV meds for 18 months.

     

    Son also gets HD-IVIG once a month.

     

    Tons of supplements and ILADS protocols are being used. Yes, we have addressed methylation too.

     

    Daughter is mold susceptible according to HLA testing.

     

    Tested C4a in both children and both were normal.

     

    LLMD put calls into 2 of the well-known LLMDs to ask advice.

     

    I'm thinking it has to be mold that is slowing their progress. I don't want to test my home b/c I don't want to have to disclose a problem when I sell the house. We also have no money to remediate if we found mold.

     

    Any ideas?

     

    Would any of the MOLD gurus out there be willing to talk to me via phone?

     

    I am ready to walk away from my house and I'm scared and sad.

     

    Thanks.

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