February 2017

So. Wow.  A lot has happened since I last wrote in here almost a year ago. 

Bella is now over a year old - still very naughty but so, so, so good with Kaiden.  He does not like it when she's in her kennel and now mostly uses appropriate dog toys to play with her.  He also tattles on her when she has something she's not supposed to have, which to me is hilarious! Sometimes I watch those two play together and just shake my head in both amusement and exasperation. 

Milestones.  Kaiden is working on emotions - they are emerging within him and we capitalizing on this to work with his speech device and more comprehension.  Last year the work with the speech device was mostly labeling objects and this year, we're actively working on communication with others.  Kaiden is on his 4th new private speech therapist - HealthReach has a high turnover rate and speech therapists don't seem to ever stay long. He's really responding well to our newest one, so hoping he stays. But, soon enough we'll be moving and have to find all new therapists.

The farm. Nick has been working so hard on the clean-up and it is almost ready for building.  We're in process of revising house plans now.  Still planning to break ground this spring.

At the last writing, we had just tried resveratrol with Kaiden.  I can't really say it didn't go well . . . while it didn't bring cognitive benefits and it did cause some major overnight bedwetting for the kid who never wets his bed - it came with an insight.  Last year, and then this year, I've noticed certain fruits worked against being toilet trained.  The resveratrol put things into perspective.  It's high in phenols. I knew Kaiden was sensitive to something that had twice before caused an ugly groin rash and that somehow GABA reversed it.  Well, here we are: a phenol sensitivity.

I wrote this out a few nights ago and put it on my FB page just for a place to put it.  I spent hours researching phenols, histamine, and GABA and put it all together into what makes sense to me.  I'm not entirely sure it's correct, but it's my current line of thought:

Okay, so I think I have this down. Sort of. There’s this enzyme called Phenol Sulfur Transferase (PST) that converts sulfur to sulfate and breaks down phenols. It is responsible for the PST sulfation pathway, which is a detoxification pathway. If a person’s PST is ineffective (not working properly) it does not sufficiently break down phenols. This creates a buildup of phenols. Now, if you also have a phenol sensitivity, when you have a buildup of phenols you get a buildup of histamine. High histamine levels are responsible for what we think of as allergic reactions: Kaiden’s groin rash & his constantly runny nose. High phenol levels are also responsible for skin conditions (Kaiden's groin rash) and bedwetting, among other reactions. A person can also have a histamine intolerance.

The things to reduce phenol & histamine buildup:
1. avoid foods high in phenols & salicylates (a subset of phenols). There are thousands of different phenols. Phenols include antioxidants like resveratrol (found in higher concentrations in red grapes and dark colored berries) among others. Raw honey, raw apple cider vinegar, oregano oil, colloidal silver (made using Chenopodium murale leaf extract) are all high in antioxidant phenolic compounds. Kaiden has a sinus infection as a result of a cold and his constantly runny nose – can’t treat the sinus infection with my usual holistic methods because all of my usual methods are high in phenolic compounds, which are causing the groin rash and bedwetting because his phenol/histamine levels are already too high.
2. Take an enzyme supplement to help break down phenols – Kaiden takes two of these enzymes – VitalZymes Complete and No-Fenol. With the super high phenol/histamine levels, these are not enough to break down new phenols coming in via food and do not break down the backlog of phenols.
3. Supply the body with more sulfate. More sulfates enhances the detoxification process by increasing the amount of toxins going out. You can give oral supplements, but the gut doesn’t absorb sulfate ions very well, so it’s more effective to bypass the gut and apply to the skin instead. Can use Epsom salts (magnesium sulfate) by way of dissolving some in water – either via a bath or applied to the skin as a spray or mixed into lotion.

I have found that certain phenols (not all) cause more problems than others. And they don’t all give him the same reaction. Resveratrol causes bedwetting, but does not cause a groin rash, as we have witnessed since pottytraining at age 6 1/2. I don’t know which phenolic compound(s) causes the groin rash from everything else. Something of note – not all fruits cause a groin rash or bedwetting – even some that are high in phenols. Some fruits cause a rash only, and some cause bedwetting only. And some fruits that are high in phenols cause no negative reaction at all.

How does GABA play into this? There isn’t a lot of research about GABA and histamine, but what research there is, shows they work together. One of the things GABA does is acts against histamine/histamenergic neurons and inhibits an anaphylactic reaction (overreaction from histamine). Somehow, and I couldn’t find research showing how, but somehow GABA pushes out/lowers histamine levels. Twice before, GABA has been proven to rid Kaiden of the groin rash. Each time, we get a couple of rash-free years before it either slowly creeps back, or in this most recent case, Kaiden got an overdose of phenols (thanks to a new supplement (GlutaClear) containing broccoli extract), which drove his phenol & histamine levels up, resulting first in the rash and then later, bedwetting.

Kaiden is an under-methylator where phenols are concerned. Methylation starts a reaction (a huge variety of normal reaction in the body) and losing/low methylation can stop those reactions, and do things like deactivate enzymes. As I understand it, if your methylation is low, and you are phenol sensitive, your PST enzyme is deactivated resulting in a buildup of phenols, which results in a buildup of histamine, which results in negative/”allergic” reactions.

One thing I do not understand is when too much No-Fenol is given, it also causes bedwetting. High levels of resveratrol cause middle of the night bedwetting - huge soakers. Lower levels, but still too high, of resveratrol causes middle of the day minimal leakage from both front and back. Too much No-Fenol causes early morning minimal leakage upon waking, but does not cause middle of the night soakers. Different probiotics also cause bowel control issues. Ones that are dairy-derived cause daytime minimal leakage, whereas Soil Based Probiotics eliminate daytime leakage.

As a side note, Kaiden also appears to be an over-methylator where B vitamins (both methylated and non-methylated B vitamins) are concerned, which is not related to the phenol/histamine issue. For the most part he does not tolerate being supplemented with B vitamins. Both types of B vitamins (methylated & non-methylated) result in constant screeching and increased other verbal stims. However, Kaiden does need methylfolate (the methylated version of folic acid, vitamin B9) in order to complete a methylation cycle which prevents his primary lymphedema from flaring up. Iodine also plays a role in keeping his lymphedema at bay. Both methylfolate and iodine must be given - not just one or the other, as we have experienced.
Some sources:
http://www.enzymestuff.com/
http://www.enzymestuff.com/methylation.htm
http://www.enzymestuff.com/epsomsalts.htm
http://www.enzymestuff.com/nofenolfile.htm
http://www.sleepreviewmag.com/2015/08/gaba-may-act-chemical-brake-preventing-histamine-wakefulness-intense/
http://www.hypersomniafoundation.org/gaba-and-histamine-work-together-to-control-wakefulness/

It's really too bad the GlutaClear was too high in phenols for Kaiden because it was doing wonderful things for his cognition and general behavior.  I hated to take him off of it, but the rash got ugly-bad very quickly.  Since I'd seen that particular rash twice before, I knew it was the same thing.  Then I started digging into it more - hence the above paragraphs.

Right now we are in the midst of treating (once again) with high doses of GABA to clear out the backlog of phenols/histamine - however it works.  All I know is, it works for Kaiden.  I hesitated for a few months to do the high dose of GABA because it usually comes with negative behavioral side effects - angry, frustrated, violent, sleepless.  I wanted to see if we could get the levels down just by severely reducing his intake of high-phenol foods. Then we tried the No-Fenol which helps to break down incoming phenols (via food); it wasn't enough.

On Saturday, I gave him about 1/4 - 1/3 of a capsule of GABA.  It took 4 hours to see the behavioral effects.  He was super hyperactive, but happy.  Constantly on the move, very physically sensory seeking, wanted lots of roughhousing. That night I dissolved some Epsom salts (magnesium sulfate) into water, mixed it with lotion (of course, the stuff I make) and applied it to his skin.  He slept like a rock!  I'd read somewhere (from another parent, I think) that the effects of giving mag sulfate this way last about 8 - 9 hours, so in the morning he got another lotion-applied dose, then given another dose of GABA.  In 4 hours, I saw an uptick in activity, but it was much less hyper than the previous day.  Win!  Some days he's more aggressive than others, but doing this is a necessary evil to get his levels back to normal. And so we continue, until the rash is completely gone and then a few days beyond that.  Then we'll start testing out high-phenol foods again.


Other News:
In August I filed a complaint against our school district for the cuts they made to Extended School Year (ESY) services. The district's then-director of Special Services (who has since moved on to another district) claimed the district "used to offer the Cadillac of programs" and that they were "just getting back to state minimums".  Problem was, they cut FAR back from not only their program, but also the state minimums!  They claimed students had to show academic regression in order to qualify for ESY.  Their other needs didn't matter.  As I found out later, IEP's were being marked "No" for ESY instead of "Inadequate Information" during the school year (Kaiden's included!), so students were automatically denied ESY services.  Because their IEP's said No. (Kaiden's was marked No in January and I didn't catch it.) And not only that - since so many students were (wrongly) denied services the district also cut all therapy services normally provided with ESY, citing "low need".

There were a lot of angry parents (and upset staff, knowing they couldn't help the children over the summer) but no one did anything about it beyond complain to each other. In August, after chatting with a friend about the situation, I called PACER out of curiosity and asked if the school district could make these cuts, and if I or my child had any rights in the matter.  PACER sent me a copy of the MN statute on ESY (https://www.revisor.mn.gov/rules/?id=3525.0755) and encouraged me to file a complaint against the district with the Minnesota Department of Education (MDE).  And so I did.  And I tried hard to get other parents to do so as well, but found that while most of them were upset, most did not want to get involved!  Some feared retaliation from the district, or didn't feel they had the time to file a complaint, or just didn't want to be bothered with it.   FYI, you have 1 year from the date of the "incident" to file a complaint.

Somebody asked me, "How does the district get away with this?" My answer was, "Out of all of the parents in this district that have special needs children affected by these cuts, NOBODY came forward. And in truth, I sat back too, waiting for somebody else to come forward and do something."

I later found out there are 400 students with special needs in our district who were affected by these cuts.  That's FOUR HUNDRED students with parents who did not come forward, for their own reasons.  Except me.

Did you know that filing a complaint is very easy? Seriously all you do is fill out your contact info, write a tiny blurb about the situation you feel is wrong, and then a tiny blurb saying how you'd like it resolved.  And then sign and mail two copies - one to your district, one to your Department of Education.  Yes, it really is that simple.

From there, MDE received my letter of complaint and contacted me a few times to get further information.  They handled the investigation.  I sat back and waited; my part was done, except MDE did ask me to try to get at least one other parent to come forward and talk about the same complaint (not file the same complaint - just talk!) so they could investigate the complaint as systemic rather than individual.  Thankfully someone did.

In November, MDE found the district to have committed 4 violations in relation to ESY and set a course of action to correct the issue.  MDE determined the root cause of the problem to be a new PowerPoint training aid with erroneous information.  This training aid was used to train staff on how students qualify for ESY; and as you might have guessed, this training aid wrongly cited only academic regression as the qualifier, disregarding all the other ways students can qualify according to the MN statute.  The school district has since filed an appeal, upset with both the way MDE handled the investigation and also the outcome of the investigation.  The whole matter has now been turned over to the Minnesota Attorney General, who will make the final ruling.  And so I wait some more.  In the meantime though, the district must comply with the corrective course of action set by MDE.  This means Kaiden had a new IEP meeting and we talked at length about him attending ESY and making damn sure that "Yes" box was checked. I also demanded (as was my right) for Kaiden to receive all of the services he missed out on, not attending ESY, and was able to choose the timeframe in which he received those extra services (which he is now getting).

It's funny; some community members assumed I was angry with the teachers, paras, and therapists over this ESY issue, which couldn't be further from the truth. They are the ones who want only to help students, and they can't do that if they are given incorrect information.  They want to see students succeed. So far I've managed to get one article in the local paper; working on another and also a couple of local news interviews.  My goal is to empower parents - when you feel your child isn't getting the education they deserve, you absolutely CAN do something about it.