T_Anna

NancyD, I read that ppl with high dopamine don't do well with CBD oil. T.anns

Wow! That is almost as many as DS16 : / Maybe we can supplement our income by finding which of those suppresses appetite. My guess: Sida'Acuta or hawthorne. We can market it as a fancy cocktail. T.Anna

Called the NP at the LLMD. She said that soemtes happens, such a shame because he's so skinny already : / Has anyone found a supplement or script that helps?? T.Anna

RowingMom, what was the treatment that you also used? Thanks, T.Anna

Thanks Everyone! We will prob start this Saturday. I will call the NP at the LLMD and ask her about doing one a day for a while. T.Anna

Any thoughts about trying LDN? DS16 has been doing well on Namenda and LDN after his big breakthrough on CBD Hemp Oil. T.Anna

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

So happy for you. Do you think the lack of appetite was Bartonella? Ds16 is doing better and started summer school, but he hardly eats. He's 5'7" and weighs hardly 100 lbs dripping wet. We took minocycline for months, but did not get this turnaround. We will try rifampin next. Thanks, T.Anna

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

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

We have done well with Nystatin. Diflucan can cause hair loss, although we used that for a while too. T.Anna

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

Powpow, so you would buy all new stuff and just make the decision for him? When I ask him, he gets anxious about making a decision, but when I show him something he'll say he doesn't like it. T.Anna

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

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

Haven't heard back yet from Integrative, but does it come in pills or also a tincture? TIA, T.Anna

Thanks rowing mom, I'll ask the integrative neurologist who overseas the supplements. T.Anna

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

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

HopeNY. As far as I know only Bartonella. And possibly Lyme.

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

Went to see Dr.Cameron. He prescribed Azithromycin and Mepron (liquid). Hopefully, this will help. T.anna

HopeNy, DS16 also hasn't tested positive, but he has those marks on his torso and back. He also has low WBC as well as psych issues, foot pain and sore throat. We are going tomorrow, it would be nice to get some answers...pricey though. T.Anna

So happy for you! We are hoping to get over the hump soon too. T.Anna

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