SuzanneR got a reaction from wisdom_seeker in Follow up blood work
Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis.
SuzanneR got a reaction from MountainMom in Supplements causing flare or something else?
There are a few things to consider in this situation. First, how much GABA is he getting and when do you give it to him? Is he also on Theanine (it helps produce GABA)? Too much GABA can actually be converted back to glutamate, increasing that fight or flight response. You would see a jumpier, more anxious and fearful child in that case. You can try giving him GABA just once after dinner (and not in the morning). Second, are you doing anything to help him detox and excrete what the antibiotics are killing? If not, he likely needs kidney and liver support to start and perhaps something to help detox the brain. We use a homeopathic called Drainage Tone for brain detox. It really helps. We get it from our chiropractor or our doctor. Finally, when you start killing bacteria with the antibiotics, often yeast is released too (it hides in the cells with the bacteria and viruses). So, look for signs of a yeast flare. Perhaps treat with an anti-fungal like Nystatin or Lauricidin. Makes sure he drinks lots of water, give him epsom salt baths to help with detox, and, if you have access, a dry sauna. Hope some of these suggestions help.
SuzanneR reacted to MomWithOCDSon in Staring spells, zoning out
LIke many of your other symptoms, Hitman, yes, we can relate. And yes, I believe your "zoning out" is PANDAS/PANs related. My son used to do that almost constantly. Like he'd just blank out for a moment, be complete disassociated from where he was, what he was doing, what someone had just said to him, etc.
There are a couple of kids here, at least, for whom anti-seizure medications have been successfully prescribed, even though there's no blatant evidence of actual seizure activity, reason being, some seizures are believed to be related again to glutamate dysregulation, and some of the anit-seizure meds help with that. My DS, for instance, was prescribed lamigotrine (non-generic name being Lamictal), and it was very helpful for him.
Interestingly enough, additionally, his prescribing psych told us that Lamictal was used off-label for both some OCD issues as well as autism spectrum disorders.
Perhaps something like this might be a missing piece of your puzzle? I would pursue glutamate modulation, whether via pharmacological or "natural" routes.
SuzanneR got a reaction from mama4 in Need advice on college readiness
I think both persons that replied had some good ideas. A gap year focusing on health could be a good choice as would keeping him local and taking a few community college classes to get his GPA up.
I'm going to throw out something else, too. His difficulties sound very similar to kids with autism. Now I'm NOT saying he has that but I'm thinking that a school for neurological differences or autism would be very well equipped to teach executive function skills and prepare him for college some of the schools will have what's called transition programs for students who have finished high school. These programs may be able to prepare him for college. Finally, when he's ready, there are colleges with program support for students with learning differences, anxiety, autism. Arizona comes to mind. But, in the end, I say trust your gut and keep him home for a year. Good luck.
SuzanneR reacted to mama4 in Need advice on college readiness
As all the other 12th graders are busy applying to colleges and writing essays about all the wonderful things they have done in high school, we are trying to solve this medical crisis called PANDAS (PANS). We think DS has been dealing with this for years with ADHD and Anxiety and only last spring has had obvious PANS symptoms-severe OCD and tics. He has been on two courses of abx and is now on a probiotic which seems to be helping. Problem is the executive function and ADHD are still very much there. He can do no independent work. None. He has barely made it through HS and has required lots of scaffolding and doesn't even take care of his basic hygiene needs. His GPA is abysmal and SAT are mediocre, but he is a very bright and curious kid-an intellectual and can discuss anything, has a great long term memory, but, again, zero Exec Function skills. He has isolated himself, has no friends and only wants to be online.
Family members are pressuring us to send him off to college. At this point only a local community college would accept him with his record/scores. Even if he does get into a college, it doesn't seem like the right time to send him off. I think because PANS has neuropsychiatric symptoms it is not taken as seriously. They say he needs a change of scenery to become independent. But would you do that to a kid who is battling some physical illness?
Are there schools (in NY or nearby NYC) that can work with a kid who is in a PANDAS flare and know how to deal with it? Maybe a postgraduate boarding school program for special needs? Anyone know of any? I've been told to look for a educational consultant. Can someone recommend one in NYC who gets Pandas?
I know this depends on the kid and where they are in their treatment/recovery, but I would love some advice. Friends who don't know say I am having a problem letting him go. Little do they know that I would love nothing more than to have a kid who could live independently! But even those who know are pressuring us. I worry the stress from heading off to college will trigger the worst kind of flare and he will be sent home defeated. We are going ahead and applying to some local schools. My plan is to apply to these and then if he is miraculously better next fall, allow him to live in a dorm and take classes. Another option would be a gap year, but what kind of gap year program would be able to handle a Pandas kid? Any advice is greatly appreciated.
SuzanneR reacted to MomWithOCDSon in Could I have adult PANDAs?
I'm so sorry for what you're going through; I can imagine how frustrating it is.
Just for the sake of perspective and empathy, I'm pretty sure I had PANDAS as a kid/teenager, but it just wasn't a discernible condition at that time. I NEVER had strep throat in the classic sense; actually, I was rarely sick at all. But my sister had strep CONSTANTLY, and I was, of course, exposed over and over again. And I was a behavioral handful, predominantly due to (I now can look back and see) being highly anxious; I was therefore always melting down, always trying to control every situation so that I would feel less anxious about it, etc. I see now that while my throat wasn't reacting to the strep or the immune response it incited, my brain was.
I did not have a classic case of strep throat until I was well into my 30's and I'd had my son; he brought it home from school and even though HE, like me as a kid, did not respond in a classically symptomatic way, this time, as an adult I did. Horribly sore throat, white spots on my tonsils, incredible swelling that had me spitting my own saliva into a cup because I couldn't bare to swallow it, etc. I was shocked the first time it happened, and a little more prepared the second time. By the third time, I could see it coming a mile off. (Now, if I'd only known what all those strep exposures were doing to my DS at the time . . . but that's another story, sort of).
Long story short, I would go after the antibiotics, and I would go after them hard, as hard as my body could take them. If the azith has horrid side effects for you, there are others that have been successful against strep/PANDAS to try. I have read anecdotal accounts of penicillin failing to work, but I've also read accounts of success with penicillin. But I do think that it may be less effective than some of the other abx that are second or third generations, as compared to pen.
My son and I both responded very well to Augmentin XR, for instance. Is this an option for you? The extended release version puts the drug to work in your body for a longer period per dose, and the clavulanic acid component is thought to have a number of beneficial properties, both medically and mentally. You might look into it.
All the best!