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T_Anna

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Posts posted by T_Anna

  1. Ds16 recently added Bartonella treatment to the PANS tx and the immune support.

     

    His appetite has been on the decline since May when we started Mepron and Azith and Sida'Acuta and Hawthorne. This weekend we will add Rifampin (should have started last week, but DS16 is scared of a herx).

     

    Any ideas?

     

    Thanks as always,

    T.Anna

  2. We were switched from Mepron + Azith to Rifampin + Azith at our last KKMD appointment.

     

    DS16 is doing much better so we are a bit afraid to start and deal with another herx.

     

    Has anyone tittered up on Rifampin? How did you do this...once a day...every other day?

     

    It seems to be the go to abx for Bartonella which is what we are trying to treat,

     

    Thanks as always,

    T.Anna

  3. DS16 is still suffering from a lot of OCD, not as much as before but still too much.

     

    If we can successfully treat the Bartonella, will that help with the OCD?

     

    I know that I should know that the answer is yes, but 100% seems so far away most of the time.

     

    CBT has not made any progress with the bathroom rituals, he just wont believe in it.

     

    I know we are so much better than we were, but I cannot be content with a kid who cannot do things he wants to do because OCD wont allow it.

     

     

    Thanks in advance,

    T.Anna

     

  4. Missmom, we had done MANY things. Bit two days before his breakthrough he had started CBD Hemp oil (from Bluebird-botanicals.com). I gave him 25 drops in a capsule twice a day with all his other meds and supplements. It was after the fifth dose. We still have a way to go, but this was huge. He showered, washed his hair, the next day wanted it cut, etc. We had tried since February 2013: 8 HD IVIGs, PEX, many abx, anti virals, supplements, steroids and CellCept.

     

    We are now also fighting Bartonella/Lyme.

     

    He still has a long road ahead, but at least he can leave the house, etc. A few weeks ago we tried lowering the anti viral and that was bad.

     

    Good idea Qannie, I will give him a choice if this or that.

     

    Thank you PowPow. DS16 said he has terrible memories associated with the stuff and is afraid of all those memories coming back with the clothing or bed.

     

    T.anna

  5. DS16, had a break through on April 2, when he decided he wasn't going to be sick anymore/listen to OCD anymore, etc.

     

    That night he didn't sleep on the couch (he was on the couch since January 2013) and slept on his sister's trundle bed. She kicked him out after 4 nights and he took out an air mattress and slept in the room he shares with his brother, on the floor near his brother's bed,

     

    Both boys (PANDAS16, notso pandas13), decided they wanted to clean their room. It is cluttered with a ton of DS16s things, and his hoarding clothing, books, toys.

     

    DS16 will not wear any clothing that he wore when he was sick and I have purchased new clothing for him (that's easy).

     

    My question:

     

    Should I just buy a new bed/mattress/bedding for him?

     

    Wait for him to figure out what to do (it seems like too big a decision for him)?

     

    We are totally in debt, but after all the money we spend on meds/professionals I figure an ikea bed/bedding would be under $400 and may just push him to get off the floor. The air mattress is in terrible shape and annoying to his brother who now only has 6" on personal space (it's a big room).

     

    Thoughts??

     

    TIA,

    T.Anna

     

     

  6. We tested our other two kids since I suspected that my DS13 was maybe pandas lite. He may have had a sniffing tic, was a bit ADHD, lethargic and was always catching strep. So we ran his numbers, his strep titers were well over 1000 and his Coxsackie was higher than PANS son. We treated with Azith and Valtrex and then switched to Clindamycin/Refampin and CBD Oil. He is doing GREAT now. On 4 sports teams, responsible for homework, falls asleep on his own (had separation anxiety), etcetera.

     

    Regarding OCD and psychology. We made that mistake, thinking it was run of the mill OCD. My mom's family is German and they're all a bit OCD. We worked that angle until it was almost too late.

     

    My advice: FIRST RULE OUT ILLNESS!

     

    It's not the accepted/popular route, but if it is illness you can save your child a lot if pain. My son was homebound for a year and 4 months. We could have helped him earlier IF we knew this was an illness. His system became so broken.

     

    Look up the history if ulcers. For years everyone believed it was stress and diet. No one believed it was bacteria. It's ok to be the pioneer and disagree with the "studies". Our kids don't have time to wait for this to be accepted.

     

    T.anna

  7. I know I cannot ask this, but...

    How long before you saw results?

     

    We only added Azith and Mepron a day apart. All the rest were added over time. And now I know that the herx was the Sida Acuta, but he seems over it now.

     

    We're on everything but the l-arginine and houttaniya.

     

     

    Thanks as always,

    T.Anna

  8. DS16 had a big breakthrough on CBD oil. But now his main complaint is that he has trouble making decisions. It's part OCD, but I think also part brain fog.

     

    Any suggestions?

    Should I try Namenda on him?

     

    He really wants to get to summer school that starts June 19, but I'm not sure he can yet.

     

    Any advice?

     

    We just added two abx this weekend for the Bartonella, and I was hoping that would help. Not yet, anyway.

     

    T.Anna

  9. Thanks Ktdommer. I was told that levaquin is not given to anyone under 18. DS16 is currently on a ton of other meds from our PANS journey: Augmentin, Valtrex, minocycline, nystatin, FLAGYL, synthroid, Reservatrol (Japanese knotweed), OLE, thyroid Support, Meriva, Reishe, Sida Acuta and Hawthorne (and the newly added Azith and Mepron).

     

    Did refampin help you?

     

    T.Anna

  10. Good idea. We have an integrative neurologist, but I'm at the point where I think he may need refampin or IV abx and she's not so proactive with that stuff. Dr.T is amazing, but I really want someone who can give me a clear plan for the Bart specifically and Dr. Cameron was mentioned at our last appointment. The Bart hasn't shown up on any tests, but DS16 sprouted the rash a few months ago, so I'm hoping that the fact that the rash popped out is a blessing.

     

    So very complicated.

     

    T.Anna

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