What's Going On?

I think it has been almost 2 years since I posted anything.

We have had major school issues for David.

We have had major behavior issues with David.

We are still in the middle of the craziness and I am on medical leave from work because it has been THAT stressful.

David decided to start getting aggressive at school, refusing to do any academic work and being generally unpleasant all around to peers and teachers.

At the end of February, we did a MarCons nasal swab at his Dr. since we kept seeing green crud even after a round of "regular" antibiotics (with loads of probiotics on board).

We got a huge blood draw done and sent in a 3-day stool sample.

So much fun.

We got some answers.

David did NOT have MarCons, but he did have strep and a weird strain of something fungal in the nose.

We also learned David was clinically deficient in Zinc, Vitamin D (not surprised), Carnetine and B6.

Finally, stool sample revealed that my GFCF carb loving kid had an almost pathogenic level of non-beneficial gut bacteria!

We had a special nose spray created just to get at the crud we lovingly called "Booger Muck".

We also had a profile done to tell us exactly what would work against the gut bacteria and had something compounded for that too.

We love our compounding pharmacy!

Oh, then while we were cleaning and flossing David's teeth, he tried to head-butt me... he had a small hole in a tooth we'd been watching since all dental appointments require sleep. I got him in to the U/W Pediatric Dentistry and he sat for an x-ray.

This confirmed an abscess.

This kid has such a high pain tolerance. He had strep/fungal infection in the nose, gut problems and an abscess tooth...no wonder he was so difficult at school and in general.

I will say this now, never stop looking for ways to help your child(ren) on the spectrum, trust your gut and keep digging for ways to help them thrive and maybe someday (God willing) they will be a functional member of society.

We are still seeing behaviors in David but we are working to get that gut under control by adding in additional dietary items (whole family) to remove those simple carbs.

David gets that tooth taken care of in a few weeks too. The waiting is hard.

Anyone notice lately how hard it is to get BH4? National shortage continues, very hard to get this and keep David on it. We can get a few months supply and then we can't get it anymore.

We are trying to get along without BH4 and it has been hard. We tried Honopure and are currently looking at Phenibut to help with aggression, if that doesn't work we'll try Dopatropic powder.

When treating your child naturally, it takes time to see if things are working or not, waiting is the hardest part, especially when your child is so difficult at school.

Hopefully, I will post more soon!

The miracle of BH4...

As I had mentioned in my previous blog, David was having serious behavior issues at school and a few at home. Throwing chairs, knocking over the coffee table and clearing fellow students desks in a flash of emotion.

His teacher had watched him decline over the last few months and a few weeks before school got out, his behavior just got worse and worse.

We have had David on Methylfolate (5-MTHF) & Folinic Acid for some time now. Along with realizing that David had common allergies to indoor/outdoor triggers... David was really having trouble with his emotional control and thus we'd get outbursts.

We added BH4 (tetrahydroxybioptrin).

Wow. We started a 1 capsule dose (2.5mg) on Friday before school was out, I saw great changes over the weekend.

By Tuesday the teacher said that David was the sweet little boy again that she'd grown so fond of, happy, helpful and silly.

We didn't tell her what we were doing...so that is honest feedback.

I know in my earlier blogs I tried to explain the methylation cycle. I found another helpful link for parents, friends and family trying to understand the basics. It is a word document that you can download.

We are now using 2 capsules (5mg) daily for David.

BH4 is pretty expensive right now. Finding a compounding pharmacy that provides it is rare. I have currently only found it through Ecological Formulas and it must be purchased by your Dr. or a place like Covenant Health Products.

The general manager has taken care of us for years on almost all of David's supplements that we need. We almost always get 15% off and free shipping. I noticed that they carried the Ecological Formulas line, but I couldn't find the BH4...so I called.

They offered to order some BH4 from Ecological Formulas for me and they shipped it free (of course) for less than my Dr would sell it to me (and charge shipping).

***Heads Up*** BH4 need to be refrigerated, so if ordering on a Friday, company won't ship until Monday because it needs to stay cold.

No, I am not an employee of Covenant Health Products and I do not receive commissions for referring folks... word of mouth is the best way to grow a business. These folks have always taken good care of me and I want to share that.

Long time, no see...

Well, not really. I don't see who reads this, but you know what I mean.

A lot of life has happened since November 2012.

Let's see...

In January 2013 we received the wonderful news that the yeast was gone in David's system!

I cried.

It is a lot of work, but it IS worth it.


We have tried to venture into the world of fermented foods. Kombucha, sauerkraut and Bubbie's pickles.


We have really been focusing on the ramp up to Deplin (Methyl-Folate) and Leucovorin (Folinic Acid) for David- it takes quite awhile to get where you need to be.


At the end of February, David has his first "sleeping" dental appointment.

We had a cleaning, x-rays and a few teeth pulled.

He really struggled with the wake up from anesthesia, but generally did pretty good.

We both took a nap after.


We were given a free family vacation in March that cost us our van. That was fun. Gorgeous condo in Ocean Shores, only to have transmission die on the way home in Hoquiam...hours from home.

Almost three weeks later, our dream family vehicle was made possible by a diligent father-in-law who just kept looking after we gave up.

David loves his new truck, he named her "Blue"


David has struggled on and off in school with new responsibilities.  Although, a new love for reading has emerged.

We send him to school in a SPIO shirt, which seems to help...but his behavior was getting worse this last month or so.

Wondering if the yeast was back.

Finally touched base with Dr and she lined up the behaviors to ALLERGIES! We tested foods but no environmental allergies. Duh. He gets green boogers, and "raccoon eyes" and he is irritable.

When he is having trouble dealing with how cruddy he feels, he is easily set off at school, being difficult for his teacher and his schoolmates. Throwing himself on the floor, spitting and hitting the para-ed.

Not good.


I needed some additional natural treatments in my arsenal for David.

In March, I was told of ARC of Snohomish County offering a grant for autism help and resources.

We started Craniosacral Therapy at the end of March for David, weekly after we see his OT (so he's worn out a bit). He immediately took to the therapist and really enjoys his sessions.
He lays on his back and watches his iPad while he gets various adjustments according to what his body needs.

The therapist said he could really benefit from daily treatments and I should look into taking a course on how to do some basic Craniosacral techniques.

I checked with ARC and it was a valid request for me to ask for the fee for the class to be paid for so I could learn how I could better help David (plus the rest of my family and friends).

Two weeks after I applied they paid for the course in full.

I am happy to say that I completed the 4 day course TODAY. I can not work on David's head yet since I am not quite trained in the changes made to the protocol for children BUT I can "tune in" to Davids rhythm and get to know him and build trust and familiarity. I can do a stillpoint at his feet, treat diaphrams and treat my family as well. I have to practice.

I know this is considered a bit "new-agey"...but my heart was in the right place. I asked God to guide me, I asked Jesus to help me be a light while I was there. I prayed, where others may have meditated. I know He helped me learn and understand everything I took home from this course.


Let's see, what else.

Oh yeah. Essential oils!

Some people are not sure about this technique, but I can honestly say, it has really worked for us in this last few months. I decided to get involved with doTerra oils. Mainly for the discount so I can treat my family with good quality oils and learn more about them too.

I can make my own cleaners and disinfectants with these oils, they can be used topically, internally and diffused too. I'm slowly replacing items in my medicine cabinet with oils.

I am  firm believer in oil of Oregano, this stuff is amazing! I use 3 drops under my tongue (with a swig of water) every hour (for up to 10 hours) if I feel something coming on. It works great in shampoo for itchy scalp. It also repels lice, and so does rosemary! I can get David to drink oil of oregano (2 drops) in a small cup of juice- that'll keep the yeast away!

I have started using the Serenity Blend on David (diluted in jojoba oil). I rub it on the back of his neck and down his spine to help calm him on school days. I also add Balance (a grounding blend) diluted in jojoba to his feet as well. This oil helps him to focus. DigestZen also has helped David recently.

We are also looking in to adding BH4 to David's regimen to support the Methylfolate and Folinic acid- that is another NEW item in autism treatment seeing great results.

So...as you can see, blogging hasn't been my top priority. We've been through a lot.

I think we are emerging...

The yeast beast is back!

*****WARNING!- this post talks about POOP!*****

Took the boys on Thursday to the Dr for follow-up visits.

The night before, David was really gassy and stinky. I looked at Troy and said "That isn't good."

Sure enough, the stool test we did on 10/18 showed a +3 for Candida! That is moderate flora, not good.

So...while we were at the Dr., David proceeds to have an accident, because his stool is so runny it won't hold form. He is starting to act giddy again...but you know what?

He is happy and totally wonderful to be around!

I can not stress to parents enough who are treating their kids for yeast. Do NOT remove gut support! The probiotics, Enhansa, and iGg powder are essential to YOUR sanity!

David no longer has to use Enhansa because the inflammation in his gut is totally healed.

Remember the nightmare month of August we had, with the crazy defiance and horrible behaviors? That was all from going OFF gut support to take a stool test and check for yeast.

Well, you can check for yeast without removing that support...just check for the flora and continue to support the gut and heal inflammation.

Your hair will thank you since you won't be ripping it out!

David's behavior is still improving, he is still enjoyable and we are still seeing changes in him even though he has a bunch of yeast...again.

We are getting ready to start Nystatin again...for two months.

We are trying the BioFilm approach. It's a 4 step system, because OBVIOUSLY the yeast in David's system isn't giving up that easily.

Apparently yeast protects itself but exuding a slimy protective barrier (imagine a slug trail if you will), and when you take the anti-fungal, you see some improvement, but that slime protects enough yeast, that when the anti-fungal is removed there is enough there to start growing again.

Well, there is a targeted digestive enzyme that is made to remove that slimy protective barrier. So we take that, then 30 minutes to one hour later we take a dose of anti-fungal, then David eats his meal and one hour later we take activated charcoal and modified citrus pectin to "mop-up" the die off and lastly, we bring in fiber, to scrub the intestinal walls clean and carry the crud out of the body.

Sounds fun, huh?

Not when you are trying to determine HOW to do this on a school day!

We have to do this twice a day... it's all about logistics.

I will post more once we get started...but even with moderate flora David is still thriving and doing well.

Praying die-off doesn't turn him into a crazy horrible kid again...

Until next time...

When you see a light...

I am amazed.

In the last two days, there is a light in David.

He understands.

He is paying more attention to things.

He's being intentional with his discussions toward us. Don't get me wrong, he still perseverates on the things he loves a lot.

He went over and picked up Troy's phone off the floor and told Troy "I'm putting your phone on the entertainment center Daddy."

Intention.

Absolute Blessing! I feel like crying, and WHY NOT! I feel like we are truly starting to see our beautiful boy emerge right before our eyes!

Praise Jesus!

I'm just sayin'...

I know we have a long road ahead still. All the effort for the last three years has paid off!

Well, if I really think about it, the MAIN effort was in the last year. I still feel like I didn't get anywhere that first two years ACCEPT to educate myself on my child's condition and to plead and pray for the Lord to guide me. I knew in my heart of hearts I wasn't getting responses with the first doctor.

I needed change in David and I wasn't seeing it. All the things I read and underlined in that book when David was first diagnosed had all been set aside and put on the back burner...because the doctor we were seeing wanted to go a different route.

That need FINALLY led me to go with the doctor that was recommended to me when David was first diagnosed... and she is a tremendous God send.

I knew it was the best move as soon as she spoke. She wanted to start B12 shots right away, one of the things I had underlined in my notes regarding things I felt David would possibly benefit from in all my research.

I recommend her to EVERY mother I have met with a child that has special needs.

For the last four weeks, I have taken David to an indoor trampoline park for some therapeutic jumping and cardio. He and his brother spent time the first two weeks in the "kids section", but I wasn't seeing a good level of real jumping. So, I started going on family night where it's 25% off for entire family to jump.

Tonight, it was just David and me. He wasn't bothered with the music or how many people were there. He jumped and he had fun. He flew into the foam pit this time and CRAWLED to the back of the pit to look outside (big garage door opened to the outside) and see the big bus that the air park uses for group stuff.

When I asked him nicely, he crawled right on back to me, got out on his own and we went and jumped some more. I asked him later if he wanted to see the bus again, he immediately ran over and jumped in the foam pit and crawled to the back again for another peak.

If you have ever been to an indoor trampoline park, and the foam pit...talk about MAJOR heavy work out!

Such good therapy for David (and me) to get in there and have to use ALL our muscles to get out!

Inviting David's friend from school to join us next week. That'll be good a social workout too!

I feel like I could go on and on tonight...my heart feels light for the first time in a long time...like I said, I know we have a long way to go...but I am feeling renewed.

Thank you Jesus.

Light at the End of a VERY Long Tunnel...

It has been a rough few months.

Defiance is still present in David.

We got in last month to the Dr and we stopped the "ramp up" of methyl folate (5-MTHF) and brought additional supporting amino acids on board to provide a more rounded support to his system. We added additional NAC and Glycine and also added 5-HTP.

Things have started to improve.

Felt we needed just a bit more calming, so we have added Trytophan as well.

Waiting for the week to be through, then we'll move toward ramping up the methyl folate again.

Goal is to get to a pharmaceutical level of methyl folate (5mg or higher) then add in folinic acid.

We are going to heal my boys methylation cycle!

It is a long hard road, but patience is paying off.

When we didn't see the MAJOR changes that a lot of people see in their child when they start B12 shots, we knew that his cycle needed some serious repair. It's like B12 is just one spoke of this boys broken wheel. We've added a spoke of 5-HTP, another of Taurine and another of Tryptophan. We've "lengthened" the short spokes of NAC and Glycine by adding just a little more...

We will get this wheel rolling on it's own soon enough.

We know we are getting there because the defiance is actually a clue that things are working.

David is asserting a personality, he's irritable because more info is getting in and overstimulating him...now we need to provide the sensory support he needs (proprioceptive (heavy work) and vestibular are the main ones to support right now.

Helping him to tune out background music and not become overwhelmed by it. This had been achieved at our OT appointments! The last 3 or 4 appointments, he hasn't even mentioned the music playing in the background, when he would normally immediately turn it off.

Slow but sure successes are so encouraging.

Thank God, we are ready for a little breather for awhile.

It's so hard when you want a "break" from your child. You feel like such a horrible parent when all you want to do is run the other way because you don't have any more patience or energy to fight. You can't decide if punishment is appropriate because you aren't certain if your child comprehends what is happening.

I can do all things though Christ who strengthens me...David's favorite scripture is what gets me though and reminds me that I can't do this...WE can't do this without Christ.

Now if we can slow down a bit to enjoy the time we have...

Gregory, Madeline & David- First time trick or treating this year!

Wits End...

This last few months have been such  struggle for us and David.

We have been treating for yeast since the end of June. We have seen an improvement the last few weeks and then yesterday, David decided he wasn't going to use the potty again and started going in his pants.

This is so stressful, the amount of laundry or money spent on pull-ups is ridiculous.

Not only that, but we have seen a major increase in defiance in David. We say "No, David" and he replies "Yes!" or vice versa...it's been a constant fight and battle gradually getting worse over the last few days.

We've heard that die-off reaction can be almost as bad or even worse in some children.

Is it that, or something else?

We have him on diflucan, a pretty strong anti-fungal.

We were also told it could be an increase in methylation for David. Which is a VERY good thing, but why all the defiance?

He's asserting his personality.

More sensory information is getting to David, so he gets overstimulated much faster. It's causing him to be more "oral" at school. Chewing on his fingers, his shirt and even his toes!

I don't know if we are dealing with die-off or increased methylation or BOTH.

We are so tired, after this last few months. We've been looking forward to things hopefully getting better...and we are still having so much trouble.

There is a lot of yelling in the house. David defying every request, arguing at every turn.

It is so frustrating, because no matter how simply we explain a punishment, he doesn't seem to understand.

We have taken away the iPad as consequence for messing his pants the last few days.

He cries consistently for it and almost to the point of puking.

It has been exhausting to consistently hold our ground and stand firm on the punishment. Lord give us strength...Please.

Hopefully we'll have more answers this week from Dr on what is going on with our kid and how we might get some relief...for all of us.

We did a small trial of L-Theanine chewables for calming and it seems to help a little, so we are going to go try a 800 mg dose of these as directed to see if it brings us some peace. These things taste amazing, they are like candy and David loves them.

Until those come, we'll continue to hang on to what sanity we have left until we get direction on how to handle our little tyrants behavior.

One exhausted Momma,

Until next time...