peglem

Well, I'm wondering if they are connected to Dr. Reddy- as I have had scripts filled from them. But, What chafes my hide is that the pharmacies should be well aware of these issues and watching the FDA reports, but continue to do business w/ these companies!

If her IgG is that low, she already demonstrates immune deficiency, so why the pneumovax? Its generally done to investigate Specific Antibody Deficiency (SAD) to encapsulated bacteria, which can be a qualifier for IVIG. But, if she is already showing generalized immune deficiency...

Yes, that's like my daughter, but it wasn't always that way-she got sick a lot when she was younger and showed real symptoms. We are also using a low dose of methotrexate once a week to keep flares in check.

We do HD IVIG every 3 weeks (for 3 years now!)- it helps to keep her from getting sick=more stable. She still does have flares, but less often/less severe and the next round of IVIG pulls her out of it. We've recently been treating her for MTHFR mutations, which has really helped and I'm hoping to eventually get her off IVIG.

I pm'd you.

I'm not really understanding the vaxing of those w/ weak/deficient/suppressed immune system. Doesn't the vax need the immune response (antibody production) to be protective? The vax by itself isn't protection?

He probably will give you more abx if you report some improvement while on and deterioration while off. But, if you could get the 30 days straight, that would be even better.

We've had a good experience w/ minocycline, once we switched manufacture from Ranbaxy to another generic. ( see: http://www.latitudes.org/forums/index.php?showtopic=20603&hl=ranbaxy ) The only thing I noticed was that when I gave it in the evening, she would wet the bed, resolved when I switched to dosing earlier in the day.

I think trend is more important. Treat this as a baseline and remeasure in a month or 2. Rising titer should be treated, because it indicates the immune system is increasing effeorts to fight and invader.

Agree. I know of a wonderful, perfectly functioning grown woman who has the exact same MTHFR mutation as my daughter. Okay, she does have celiac disease.... Anyway, was discussing w/ pediatrician and he thinks the timing of fortifying foods/flour w/ synthetic folic acid (including baby formulas) and the dramatic increase in autism is more than just a coincidence. And I think, in my daughter's case- hindsight tells me that I was B12 deficient during pregnancy (docs dismissed my concern over symptoms). Had so much trouble getting her to finally eat solids- she was borderline malnutritious...frequently ill. Yeah, lots of environmental contributions...

That's pretty typical for nonPANS neurologists. If you let us know what area you are in, somebody should be able to direct you to physicians that will help with treatment. Nice that you already have the neuro work-up, anyway!

I'm not sure why you're asking this- I mean are you wanting to know if you need a neurologist or what you should demand of one? PANS causes neurological symptoms, but those symptoms are not neccesarily specific to PANS. So, for starters, I think a neurologist should rule out/in other things that might be causing those symptoms. Then there's the whole treating symptoms (live w/ it) vs finding and eliminating the root cause. Ideally, the doctor would do both-improve patient comfort, while seeking a cure. PANS involves so many medical specialties- immunology, neurology, psychiatry, infectious disease, and possibly lyme literacy- Most of us look for somebody who is willing and able to treat, regardless of the specialty. I think, however, regardless of who you find to treat, it is important to rule out other causes for the neuro symptoms-

Also, its possible that the bacteria cleared out some bacteria(strep) and made way for a competitor that amox doesn't treat. It may be worth switching to another abx.

I cannot stress how much of a difference it has made in her. All these years, as she's getting older, the one thing standing in the way of her having any quality of life as an adult has been the fight or flight rages. I was earnestly fearful that we'd end up being one of those autism/mom horror stories (you know, the ones where child kills parent or parent commits homicide/suicide) because I just could not see how she could ever even be in a day program or, God forbid, a group home w/o some ultra sedating, lay-in-bed-drooling medication. Cognitive delays and motor skills are all things you can work around, but injuring yourself and/or caregivers will eventually result in police intervention and psych wards. Then, of course, there's just how miserable it is to be the person who is self injuring and hurting others. So, getting just this one thing under control is huge and absolutely life changing!!!

We're doing both methylation and abx, and just finished a 7 day course of anti-viral. Since adding the methylation treatment, my daughter's moods and behaviors have drastically improved....really amazing!

Cool! Thanks.

http://www.advanced-allergy.com/ Hmmm, link didn't work, Cut-n-paste:

Well, just my opinion- you need to do whatever it takes for you to get some sleep or you're going to end up no good to anyone. If you feel like you must work on this right now- I'd just pick one of those 3 goals to focus on. While it may automatically resolve w/ healing, if it doesn't, he will at least be in a better place to work on it. I have not found (and the professionals haven't either) any motivator that is stonger than the anxiety when my child is in a flare. When he is in a place where he is able to work on it, I think it is important for him to feel like he has the power to overcome the problem, with your collaboration- he needs to get in touch with his internal motivators. Have you tried using an "amulet"? Sometimes our kids get magic thoughts and its possible to use this- some toy or blanket or outfit that will "keep him safe". Then you'd have to work on weaning him off of it later- and you run the risk of him generalizing it to other, innappropriate environments. Just a few ideas....

I'd slow it down at least.

Yup!!

Hi Melanie! I have no idea about all of that. I just want tyo say "Hi" and nice to hear from you again!

goofy- manic laughter and hyper (er).

We used propranolol for about a year for migraine prevention and, I guess, calming. But I think reducing the headaches was the real reason for the calmerness (I made that word up, but I think it works). Anyway, as we implemented Methylfolate/methylcobalimine/P5P form of B6- I forgot to dose the propranolol a few times and discovered she no longer needs it and it was causing some distress. It definitely helped at the time we started it.

Okay, so we know Ranbaxy has been guilty of fraudulant drugs, They got caught... How in the world are we supposed to know which other Pharm companies are doing the same thing and not getting caught? MIL has a generic rx that was filled w/ a different manufacturer than she had before and it is not working as well as what she used to get and she may be getting some SEs from it as well. Then I start thinking about how, in the past...a particular abx (rifampin) did wonderful things for us the 1st time we used it, but seemed ineffective when tried later. Did my daughter's response change or was it a different company and she wasn't actually getting the medication at all? How many times have we heard of people being distraught because their child isn't responding to abx? To say its just Ranbaxy, I think is naive. Other companies have to compete w/ Ranbaxy and others who are cutting corners to make things cheaper. And apparently, things are not well policed by the FDA. So how are we to know if it is the treatment that is ineffective or medication is sham?

Usually they test IgG and IgM titers (antibodies) for each virus. High IgM means the infection is current. High IgG can either mean recent past infection or chronic infection. Some labs just report high or low, while others give specific numbers and a normal reference range.