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Posts posted by MDL

  1. For a long time we thought that our daughter had one of the rare cases of PANS without OCD until we figured out that her OCD just didn't look like the typical manifestations of OCD.  Sometimes she would get stuck on something and not be able to let it go or she would be very negative about everything.  She was actually having obsessive thoughts that fit an OCD pattern, but there usually were no particular compulsions that went with the obsessive thoughts.  Later we also realized that there were obsessive thoughts underlying some of her behaviors and she just never articulated those thoughts.  No one knew what was going on in her mind except her. Now that she's a bit older we have lots of conversations about what constitutes a normal worry and what is an obsessive thought and we have a window into her mind that has helped us to help her. I think it's also has been a relief to her.

    For a long time I read list after list of OCD symptoms in kids and nothing seemed to fit.  I don't know if this is common for PANS/PANDAS kids, but her OCD didn't fit anything I read.

    She's doing much better now, but has some lingering symptoms that come and go, and it's only been more recently that we've seen some more straightforward OCD symptoms.

  2. Anyone have a suggestion of a high quality but not expensive B12/folate supplement for MTHFR.  My daughter has been taking the Xymogen one (1000 mcg of Folate and 2500 mcg of B12), but it has almost doubled in price (and we were recently told to increase from 1 tab/day to 2 tabs/day), so I'm trying to see if there is another good option besides Xymogen.  

    Of our supplements, it's still not the most expensive, but they all add up...

  3. Has anyone worked with Dr. Bock in Red Hook, NY?  We have a 7 year old with PANS and possibly Lyme (explosion of symptoms in June, gradually improving with antibiotics but in past few weeks alarmingly worse) and a 5 year old who developed some behavioral issues that we think may be candida/yeast overgrowth (she had been on low dose antibiotics daily for two years for a medical issue that is now resolved and we recently noticed a surge of irritability and tantrums after reducing the strength of a probiotic that she had been taking for about three months).

    We looked into seeing Dr. Bock for both kids and have already scheduled an appointment for one of them.  The paperwork just arrived in the mail- all I can say is wow... While we expected the very expensive first visit ($1000-$1500 seems to be standard with PANS/Lyme doctors), we were a bit shocked by the costs for follow up visits and basically everything else one could possibly charge for (phone calls, every minute that an office visit runs over time, medical records/letters of medical necessity- all at very, very high rates, beyond anything we have seen with any other specialist that works outside of insurance).  So we are just wondering if anyone has had success with Dr. Bock to help us feel that it's worth the extreme financial burden we will be signing up for. He does seem to have the kind of comprehensive approach that makes so much sense.  And we like the idea for our daughter with PANS of doing lots of testing from the start to figure out all the many layers that might be at play (vitamin deficiencies, gut issues, non-bacterial infections, etc.) , rather than discovering one after another by looking for more things after each treatment fails. Like many families, we are just feeling desperate...

    Feel free to PM with anything you would prefer to share privately.

  4. I am hoping our LLMD will be covered under out of network benefits. I am submitting the claim form to insurance and I noticed that the office used one diagnosis code that is for lyme and one for encephalitis.  Since her positive lyme test was 5 months ago might the insurance refuse to pay even at out of network level if they deem that there is no long-term treatment needed for lyme?  Just wondering if I should ask the office to take the lyme diagnosis off the claim form and stick with encephalitis/pans. 

  5. A friend sent us the link for this treatment center in Cohasset, MA.  We already have a PANS/Lyme MD, but we were looking for a psychologist with PANS/Lyme experience to get some suggestions for helping our 7 year old daughter with symptoms and possibly get some recommendations for alternative therapies/ways to boost her immune system (the center's treatment team offers things like accupuncture, yoga, breathwork). The director is Elena Monarch, a neuropsychologist, and our appointment would be with her.  We weren't planning to see Dr. Bock per se, but I'm always open to seeing another MD for a second opinion on treatment given that we are not seeing a rapid recovery with antibiotics (symptoms began 5 months ago, although I now suspect that over the previous three years there was a pattern of mild post-infection symptoms).  Feel free to PM me if you have any experiences with this center or these doctors that would be best shared privately.

    We would also love recommendations for any other treatment providers (psychologists, nutritionists, etc.) with PANS/Lyme specialization in the CT area.

  6. My 7 y/o daughter was diagnosed with Lyme two and a half weeks ago (Western Blot, symptoms primarily neurological).  We have seen improvement with antibiotics, but symptoms have been up and down and are still present.  We are reaching the end of the three weeks of Amoxicilin prescribed by her pediatrician and we want to find an LLMD in Connecticut (MA or NJ could be ok too) who will help us with a more thorough treatment than the IDSA guidelines (including evaluation for co-infections). If you have a recommendation but don't want to name the doctor publicly, please message me. We currently have an appointment for a couple weeks from now in the Infectious Diseases dept. of Boston Children's Hopsital, but we suspect they will adhere to IDSA rather than considering additional Lyme treatment.

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