JAG10

Hi- we also did a spect scan with Amen clinic in VA. We stayed with that psych for two years trying every med under the sun slowly getting worse and worse. I remember that psych assuring me we weren't missing anything. 6 months later we got a second opinion at CHOP where pandas was suggested in a whisper. That was a turning point for us. Interestingly, Dr. K thought the SPECT scans were very interesting and asked for a copy. But you are correct, most docs shake their heads like you've been swindled. We haven't done the 23 and Me but at least it isn't as expense as spect scans.

Oh, and Laura- I mentioned I was going to try one of the 750mg and did so last night. I slept until 10:30 this morning!!!! Yeah, won't be doing that again!

No specific brand, just GABA only and not a combo. I should also mention that after those 3 days where she was exhibiting reciprocal cognitive skills, she started getting bad headaches as well. Always helps when there are physical signs to gauge too. I cut back to 750mg twice daily and the headaches were less intense, but still present. 500mg was where the headaches were no longer present and the math is roaring back. So interesting, isn't it? When I met with my 3 SLP colleagues for in-service last week, one had read Brain on Fire. I let her speak. She was pondering how many of our students could be impacted medically with cognitive symptoms. She said we really need a medical practioner in the schools to get at some of these underlying issues. I chimed in. One of our other colleagues has a nephew who has significant autism. We went to the PSU autism conference together this summer, 3 days sharing a hotel room, so she knows me better. She said after our time together, she asked her sister if her son was better with a fever and the sister said absolutely! They have a deep well of resources but never knew about or considered biomed before....they are now. Can you imagine if there was a Dr. O in every school district as part of the IEP team?????

We've cut the GABA dose more than half: 500mg in the morning and 500 in the evening. This may be the sweet spot as her math scores have risen back up to 44 as of today. Now I've got a bottle of 750's to get rid of, so I'm trying them in the evening.

She said 2000mg of GABA and didn't specify when to take it. I'm giving her 1500mg in the morning and 750mg in the evening, which I realize is 2250, so maybe it is too much, idk. I'll let you know what she says.

Nancy, I really appreciate your willingness to stick around and share all the valuable information you have accumulated over the years. I often find myself searching your old posts. I especially value the one where you took the time to go through all the scripts and supps your son has tried and have been successful. This update warms my heart. Jill

Interesting GABA anecdote: We just added GABA for the first time last week. NeuroScience test indicated low GABA, high glutamate. NAC did nothing good or bad for dd13. After 6 days, we noticed an interesting phenomena; she was more verbal, more robust vocabulary, more aware and alert (dh and I looked at each other both observing she was "managing" family business rather than being managed! She also noticed I gave her two compliments on being a great sister and that I had never done that before-which isn't true, but perception is reality.) Oh, and she took me to the cleaners in Quiet Storm surf shop- I've never seen her put together outfits like that or tolerate, let alone request to go shopping like that. She is usually completely intimidated by trendy teen stores and begs to leave. Here comes the interesting part...she has been practicing for her high school entrance exams (HSPT), two sections a day, one verbal, one math/analytical. These are timed, standardized tests she's been doing everyday since returning from camp, so the variables are consistent...except for dd13 after day 6 on GABA. Her verbal raw score increased from mid-20's to a high of 39; but her math went from raw score 48-50 range down to 33, then 31. This has happened Friday, Sat and today. Of note, I observed a similar phenomena when she was in 3rd grade and we tried Strattera for the first time. She was conversational and social like I had never seen before, but completely stumped by 3+0. For the past two years, she's been scoring in the 93-97%ile in math and quantitative standardized assessments, so this is really off her mark. I'm hoping I just need to give it time to "level out"???

There is a methodical reason why that I don't know, but many of our kids should not take Tylenol. It comes up when ppl talk about vaccines and damage that Tylenol makes worse. I just avoid it altogether and stick with ibuprofen.

I agree with you. It's not realistic at all to me.

I agree with Peglem. Fingers crossed!

Thanks Laura! I was reading some on Lasko's website.....don't you wonder what she DOES eat??? That's a daunting list, I must say.

How long before taking Ashwagandha did either of you notice any difference? Waiting a month without seeing any difference will not be easy for me. Patience is not one of my virtues

Anybody try this? Dr O recommended trying this for glutamate stabilizer, mild connectivity issues. She suggested trying one month, then if no change try GABA for one month, then if no change AdreCor, then 5-HTP. We had tried 5-HTP before and results very similar to SSRI; great immediately then turned south after a week or so. These suggestions are in ascending potency order with ashwagandha being lowest.

These are all on the list of recommendations from neuroscience. We tried the PharmaNac and I didn't notice a big difference. It was hard to get her to drink it, so I stopped. We will see if taking it in neuroscience's pill form combos for longer yeilds different results. We've never tried GABA or some of the other recommendations. We see O'Hara tomorrow for both girls' check-up and I'll let you know what she has to say!

Laura, You are a gift as a friend made through the mess of PANS. Yet our children benefitted from very different treatment paths. My girl had 9 IVIGs with success; one was enough for you to decline more for your son, thank you very much. You can read, research and desect methylation, co-infections, and DNA markers in circles around the rest of us and I'm like.....please just tell me what to do! You've successfully used ERP/CBT and discovered many helpful books for parents and kids. I loved Enhansa for my girls, you discovered it was a bad mix for your kids. The recovery paths are nowhere near the same, some symptoms have been and we've learned similar symptoms really don't amount to much in determining underlying cause. What has been a consistant bond is the support as moms fighting to find solutions and new avenues to explore until our kids are completely well. And this support and sharing of information has been the foundation of these forums. Because we know the medical community has miserably let us down and those on the outside hastily judge in ignorance. There is no single factor that puts you in or out of our club; this is our double edged sword. Behavioral symptoms resulting from some infection or immune dysfunction is pretty broad, I'd say. I used to get so upset at the insistence of "sudden onset". It was ridiculous to get lost in that sauce. Step-by-step getting our kids or self closer to neurotypical is what works. Ruling things in or out, trial n error. And not losing your mind or hope or sanity or spirit as a parent in the process. You helped me learn and relearn that over these years, Laura.

Her myco-p is in check.

That was helpful for me, although a little over my head. Nancy knows a lot about this balance too i believe. I know Dr. O will address this. She's been taking zinc. The testing came with physician recommendations: Week 1 (4-8 capsules) 1) Calm G- NAC, CoQ, l-theanine. 2) Kavinace- taurine, 4-amino-3-phenlybutyric acid Week 2 add for total of (6-14 capsules) 1) AdreCor- rhodiola rosea extract, N-acetyltyrosine, L-methionine, Vit B and C Optional (2-4 more capsules) Avipaxin- Huperzine A, alpha- GPC, acetyl-L-carnitine HCL Any input on her cortisol too low in the morning and a little too high in the evening? So it should start high and slope ending low; her hill isn't steep enough on the graph. And DHEA is too high.

So awesome to hear the great news! How can having significant pandas not impact your confidence? And with separation anxiety as a hallmark symptom, I thought it was very important she prove to herself that within her is self-reliance and perseverance. My daughter has some girl (drama) anxiety as well. Her closest friends are males. This camp is all girls and I chose it on purpose. While I think the girl anxiety is well founded and has served as a protective mechanism for when things were bad, she cannot and should not completely avoid female friendship. She needed to be in an environment where she was "forced" to give girl friendship more of a chance than she was at school. She's an 8th grader now. Most of her peers will be going to single sex Catholic high schools. It's a decision we will have to make together, but I wanted her to give an all girl environment an honest try to give her more perspective as we make this important decision. So many, many benefits to this summer adventure. Right out from under the chicken's butt- I LOVE THAT!!!!!

I have a couple topics up about elevated titers and annual early Aug strep, but have to share good news that has me floating on a cloud..... My dd13 is at sleep away camp for the first time for 3 weeks, which is a miracle,I never could have imagined a few short years ago. For those of you who don't know the sleep away camp drill, no cell phones, only letters and my darling is not a fan of the written word. I did get a letter from her counselor that pointed out she is their model camper for tick protection which made me lol. These camps have photographers that post hundreds of pictures daily and that is your view into their world. Besides the posed cabin/group shots, my girl has been scarce! I've been writing her daily to try new things... Today I was elated to see pictures of my girl on a ZIPLINE!!!!! There were pictures of her climbing this tree that seemed to go up to the clouds, one with a big smile and green paint on her face from color day looking down over the platform and zoooooommmminnnnng down the ZIPLINE!! I'm so proud of her!!! I can only imagine the anxiety she had to overcome; she's very cautious, hates rollercoasters. God bless her soul! YAY!

What did the ART indicate and what did you do differently that you hadn't done before? There were other infections also, correct? Thanks tpot

That's good to know about the Vit C. Hers actually measured 0.0. We have all been tested. She shares a bedroom with her sister, who is mild pandas. Little sister's titers fall to well within the normal range, but dd13 do not. Both girls have had their T & A removed. Plus the bacterial markers were all stellar. Her titers will rise with infection. Her baseline is elevated, but it's not "normal". I will report back next week if Dr. O relates the higher titers with the wonky neurotransmitter levels.

My girl is 13, not sure how her experience will relate to an adult. Once she was in a decent place re:symptoms, she did not regress with subsequent IVIG. She still reacts to strep, but it lasts fewer and fewer days with abx increase or prednisone. If I were you, I would mentally prepare myself (whatever that means to you) for things getting worse in some way. Perhaps it won't be behaviorally, but you get nauseated. I will say this from my girl's experience: little reaction equated to little improvement but once you are in a good place, improvement is more difficult to appreciate. When things are bad, then they get worse, then they get much better...it's easier to observe.

Did you have any discrepancy between the two tests? Her serotonin was minuscule on the OAT, but within range on the neurotransmitter test. NAC and coQ10 were recommended on the neurotransmitter test but in range on the OAT. I guess Dr. O will make sense of it all.

All that showed up on Quest labs was elevated ASO and anti-DNase B, but.... Neurotransmitter testing via the neuro adrenal basic panel: GABA- low Glutamate- high Norepinephrine-low Cortisol should start high and end low by evening. Her graph wasn't steep enough in that she started too low and ended a little high. DHEA high too OAT: Yeast all looked great except arabinose was a little high Only things out of range were neuro transmitters confirming above testing and her Vitamin C was low. Her Dopamine to VMA (norepinephrine/epinephrine) ratio was high because her VMA was too low. And her quinolinic/5-HIAA ratio was way high; no idea what this is.... So low Vitamin C (not supplementing currently) and some mucked up neurotransmitters don't tell me much. Her Malabsorption and Bacterial Markers were all perfect, so I'm guessing that points away from any hidden infection. Any thoughts on this info? We see Dr. O on 8/13

I've never had a doctor tell me that her elevated titers were normal. They were always a cause for measured concern. They have been as high as over the tilt measure and as low as the upper limit. I'll let you know what Dr. O says in two weeks. I would imagine they are of some concern or she wouldn't have tested them three times this year.