peglem

And, Dr. A will order the Cunningham test for you. But, I have yet to hear if insurance has covered this test for anybody.

We've been on clarithromycin (biaxin) since January. Recheck titers just before each neuro appt. (every 8-10 weeks). Titers are coming down, but not sure I want to try stopping it.

Its been wonderful for my daughter, bringing her Myco titers down. She has been on it since January (or February?) and no psychosis here. Just make sure to use a good probiotic.

Okay, I had to look up Lipoma and I don't know if its connected. Not sure when the next "in person" meeting is- I think they are trying to get Dr. A to come and give a presentation. I'm PMing you here on this board the info to join the FB group- we have 79 members, so lots of support and help here.

So, isn't CamKII involved in the whole ATP/ADP -signal transduction/cAMP thing? Or am I connecting the wrong dots?

Thank you. I won't pretend to understand all that- I'll have to study up on those links. Hmmm, she sleeps really lousy on her methotrexate night...

Allie is on a weekly dose of methotrexate since February. In April we discovered that she is compound heterozygous for MTHFR mutation. Methotrexate suppresses the immune system by blocking folic acid receptors. So I was concerned about using the methtrexate in light of the MTHFR results. The rheumy said she has other patients with that mutation who do okay with methotrexate and since it seemed to be helping my daughter, who is on a very low dose, she thought it would be okay to continue. I give the methotrexate at bedtime on Saturday night and load her up with Deplin (methofolate rx) Sunday morning. She is wonderfully calm and cooperative all day Sunday and most of Monday. Its an amazing difference! Not just a little better- really, really great. We haven't done 23andme yet. So what do you think might be going on here? Would just like people to throw out ideas for me to chew on....It seems strange to me that blocking folic acid would be so helpful when her ability to process it is what is causing her problems in the 1st place.

Hi fellow zonie! Dr. Alarcio will probably test for lyme but only the standard CDC testing (whatever you can get done through labcorp or sonora). We do have an Arizona support group for PANDAS/PANS and a private facebook group as well. Let me know if you'd like to join us. Also, @ getting labs back from Dr. Alarcio- I always have her copy results to my daughter's PCP (good, PANS savvy guy, who is also getting up to date on the MTHFR issue), and then its easy for me to get results from him. PCH is supposed to work on the communication problem- but, right now it is very difficult sometimes to get in touch with Dr.A's office.

Can you get somebody to run IgG subclasses? If your child has been sick a lot- I would think IgG levels should be high as he makes antibodies to fight infection.

Sending prayers.

We ended up just checking for strep whenever behavioral symptoms began to flare...+ everytime. We also checked when she was doing relatively well and got neg. results. We don't even check for strep anymore though- just treat when behaviors flare.

Lets see if this link works: http://www.azcentral.com/video/2431476326001

I so agree! And thank you for sharing what is still probably a painful memory for you. Who diagnosed Grant as a sociopath? He did not blow anybody up. I haven't even seen anything that says he's assaulted anybody. He had an obsession w/ columbine and bombs, even built some bombs. But everybody is treating him as though he carried out an attack.

Just one- my daughter's uncle.

Just because I disagree with you doesn't mean there is a problem with my logic(or the logic of many people on this board). Media attention CAN result in public outcry. Public outcry can influence politicians- with medical care/insurance coverage being increasingly influenced by government, public outcry could make a difference. Public outcry influences corporations, who are increasingly involved in funding studies. Mentally ill people are already stigmatized by society (crippling OCD is a mental illness, regardless of the cause). I hear you trying to protect your child and I can appreciate that you've fought hard for her. Grant's mother wants to fight for him, too, and this may be a way for her to save him. And my viewpoint is colored by my experiences with my daughter-stigma is not even on the worry radar.

Well, I suck at figuring out the politics! But, like it or not- this case has already been linked to PANDAS in the media. So how do we as a community deal with that? We can howl-"No, not PANDAS! How dare you misrepresent us!" Which I do find completely understandable. Or maybe we could try to use this to drive the point home that this disorder needs to be taken seriously-that the consequences of not treating (or worse, in this case MIStreating) are dire. Whenever these incidences of mentally ill youngsters gone wildly homicidal occur there is TONS of frenzy over "How did this happen and what can we do to prevent future incidences?" We need more gun laws....we need more psych evals.... Maybe we finally get the chance to examine the medical causes behind the mental disorders and highlight the futility of excessive use of psychiatric medication.

Yeah-what she said!

My daughter does not have a dandelion fear that I know of, but she has just come up w/ a strategy for approaching things she fears: she films them. It seems to make the experience less real and more like watching a video.

Thanks! Very good article!

Whew! Got a call back this afternoon. They are ordering from TEVA for her and it should be in tomorrow!

I've been ticked off about this all day. The pharmacies have got to know about this company's fraudulent practices, and if they don't they should- its their business. So, they should NOT be doing business with them and passing on bad drugs to their customers. That makes them just as guilty as far as I'm concerned!

So, called my local CVS Pharmacist @ changing the manufacturer on the minocycline. He said all they had was Ranbaxy-that's what they get sent when they order it. So, after many trials of different phone #'s and phone menus from the CVS website, finally managed to reach a customer service rep who promised to contact the regional pharm. representative to see if they can "special order" it. They will call me back w/in the next few days to let me know. What I don't understand (and probably do not want to know, really) is why any pharmacy continues to sell ranbaxy products. Google Ranbaxy fraud- it has to be common knowledge in the industry that their products are untrustworthy! They must be selling them REALLY cheap.

Benedril is dyphenhydramine and it is also sold OTC as a sleep aid. Same med, different label. Oh no, my kiddo goes berserk on it, too. I think if you're a person who already has low histamine its not a good idea to take antihistamine. Ours can't take the reflux meds that are antihistamine either.

Benedril is dyphenhydramine and it is also sold OTC as a sleep aid. Same med, different label.

Agree w/ Beesknees, but would also do a rapid strep test and or culture.