ds14 Home after hospitalization and 2 yrs. away in RTC - Need help for

[tj21]

Hi - new here! After at least four years of an unbearable situation, including a psych. hospitalization and 2 years away, our ds14 finally moved back home in March, when we started PANS treatment. Better late than never. We are continuing to stabilize him and on the whole things are improving under the care of our PANS MD/NP in N.CA. We are treating integratively and weaning ds14 off of many of some of his psychopharms.

However, we have had four acute flares that look like manic episodes alternating between euphoria and aggression. To the point where our Crisis Team has had to come and we were deciding whether to call 911 and request a 5150. UGH.

We continue to work on what is causing the flares but in the meantime, the episodes are so acute that we need to safely sedate him at home (I know, terrible), which is essentially what the psych hospital will do, and worse.

1) Any experience with meds to quell an episode in the moment? Benadryl or Atarax used to work, so I'm assuming he has high histamine. Ativan or any benzos cause a paradoxical reaction.

2) Anyone done Cytochrome P450 testing through YourScrip in Seattle, WA?

Thanks so much.

[sf_mom]

I've heard good things about YouScript. Our LLMD uses it but we have not done it.

 

A couple things I was thinking when I read your post.

 

I would document timing of episodes on calendar to see if you can pick up on pattern. It will help to determine die off cycle.

 

You may be on regular anti-inflammatories but daily Enhansa and Maxi Flavone has helped our family tremendously. We used both for at least a year or longer and now only use Enhansa daily.

 

I am also wondering if you have checked him for Magnesium deficiency. IV Magnesium might help 'CALM' him but not sure if your Dr. provides vitamin/mineral IVs or is close enough to get them on a regular basis. A good way to test for Magnesium deficiencies is SpectraCell as it looks for inner cell utilization of the vitamin/mineral and is not blood serum levels. Other possibility would be to give him CALM in the evenings before bed... at least 2,000 m.g. CALM is not as effective as IV but might still help.

Edited June 5, 2014 by sf_mom

[Mayzoo]

Most my kiddos behaviours are related to inflammation caused by an out of whack immune system related to her heavy viral load. Until her immune system is repaired (working on this) we use Cannibidiol oil, omega 3's, and bio-enhanced curcumin (AKA Enhansa) daily and Japanese knotweed and motrin as needed. All these are anti-inflammatories, and we also use Melissa Lemon Balm daily as a calming agent.

[Mayzoo]

Oh, when my kiddo acts manic, it usually means yeast is becoming an issue. Treating it usually resolves the mania within 36 or so hours. Have you had his gut tested for good/bad bacteria and yeast levels (OAT or other such test)?

 

We have very little to no aggression, so I cannot chime in much there, but others here can.

[tj21]

Oops, I didn't realize my subject heading was so long and got cut off.

 

Anyway, thanks all, am making a list of questions/issues for our next consult w/PANS NP and actually for 3 years Cannibidiol oil has been on that list! I saw some discussion either here or on the TS forum, or both.

 

Yes, treating for specific yeast overgrowth (tested), and I have been tracking ds14 behavior/tics/episodes and meds for years - OCD-mom , which finally was helpful with the PANS NP and will be once we have the Cytochrome P450 back. I am pretty sure last flare/acute episode was in part from seasonal allergies (high IgE). Waiting for more extensive food/protein cross-reactivity tests to come back. Will have to check Magnesium, but NP put him on Mag.Citrate 800mg (constipation).

 

Also, ds14 has other complex underlying dev.disabilities, which makes this even more of a puzzle. And I appreciate learning something new each time I reach out.

[sf_mom]

When an individual has a hyper immune response that looks like multiple food allergies especially gluten and/or antibodies for Celiac's they should be tested for mold. Antibodies for gluten and mold cross react with each other. MOLD/YEAST/FUNGUS are the essentially the same beast.

 

The way you test an individual for mold would be the Shoemaker Panel and Real Time Labs Mycotoxin Urine Test.

 

Your DS Yeast issue and allergies makes me think mold issue.

[LNN]

Instead of just testing Cyp450, look into 23andMe testing. In addition to mold, yeast, nutritional deficiencies, you might be amazed that the role that methylation plays in neurotransmitter balance. 23andMe, for $99, tests 990,000 genetic "mutations" called snps (snips). If you have issues with certain snps, it can affect how well or how poorly you make neurotransmitters. My daughter has a defect on a gene known as MTHFR that, when not treated, made her bipolar. Treating it has helped her be emotionally stable for almost 2 yrs now. This is her story http://www.easytolovebut.com/?p=2782

 

My PANS son has different genetic issues, which caused him to rage and be very rigid/controlling in his thinking. Giving him different supplements helps mellow him and lets him stay more even keeled. So knowing what makes your son "tick" can be very helpful. It also helps you determine if he's likely to benefit from SSRIs or should avoid MAO-I's and gives you the data you need to determine CYP450 mutations as well as many other detox pathways.

 

Search this forum (search box is in the upper right corner) on "23andMe" or "methylation". If you decide to do the testing, you'll see instructions posted under the pinned "helpful threads" at the top of the Pandas forum page.

 

In my kids, mold, strep, lyme, pyrolurria and methylation have all played a role. There's much to study but also lots of hope. Best of luck!

[tj21]

Waiting for Mold test results to come back, among other allergens. I wish there was a giant PANDAS (haha) database for all this tracking, we have so much data to try to organize and think about. Exhausted!

 

Do you all think a reaction/flare would look this severe (raging/euphoria and alternating) to where we need another 5150? ds14 was also around friends' dog and we know he's allergic. But 3 yrs. ago when near their dog, had no raging or trigger even though I'm sure he has had a PANS dx since well before that.

 

Included will be MTHFR and 5HTT (we did previously) and SLC6A4. I did read some of the methylation threads; there's just soooo much to catch up on! Wow.

 

And new on the 23andMe site, though our PANS MD could probably interpret for us: We no longer offer our health-related genetic reports to new customers to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.

 

Just did urine Neurotransmitter test (d1, d2, serotonin, epinephrine, and more) thru Pharmasan, waiting on results.

 

Thanks!

[LNN]

 

And new on the 23andMe site, though our PANS MD could probably interpret for us: We no longer offer our health-related genetic reports to new customers to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.

 

 

This doesn't mean 23andMe no longer provides test results. They do. But 23andMe used to provide "health reports" that said things like "you're 1.6 times more likely to develop heart disease" etc and the FDA challenged them to provide evidence of where they were coming up with their 1/6x odds. Other sites would report on the same mutation and say "you have a 1.2x greater risk" or "you have a 1.8x greater risk" and people started getting confused. So when 23andMe couldn't provide data to make the FDA happy, they had to stop giving "health reports" but these reports were pretty useless anyway. They didn't offer ideas of what you could do about your risk, so it just created anxiety or a false sense of security if you had a low risk.

 

But they still provide the raw data, which is really what you want. Best $99 we spent in this whole journey.

[tj21]

@LLM , got it. Our PANS NP was also recommending 23andMe, will add that to my list for Monday's call. Thanks again.