Updates and life things

Liam Oliver, little love of my life, smiling with his whole face :) 

A review of our latest supplements (Mag. Sulfate Cream, 5 HTP, Probio Gold):
Its been a few weeks since Liam began using ProBio Gold (probiotic), 5HTP and the Magnesium Sulfate Cream.
Since we began using all at once, it was hard to tell what was doing exactly what. I don't recommend doing it this way, we normally give it two weeks between adding something new but our needs at the times dictated otherwise.
Regardless , i have come to the conclusion  that the ProBio Gold is doing wonderful things for his gut, and behaviors. He seems happier, less gassy and is potty-ing less frequently. He is also stimming much much less. In fact his stims are a rarity these days, and usually only happen when he is over tired, cranky, or overstimulated. His stims are typically flapping his arms or hands, or shaking his head vigorously to get dizzy, or spinning to get dizzy. If hes REALLY frustrated or cranky  -usually brought on by not being able to communicate something to us- he will bang his head with his hands (i so hate that) but these behaviors are becoming less and less...
I thought the 5HTPwas helping him fall asleep at night , i mean i can tell it gets him to slow down a lot and has a relaxing (but sometimes slightly loopy too) effect on him...however i think the magnesium cream actually does more in that department. I am rubbing the cream on his 4 to 6 times a day. I realized this only after running out of the 5htp a few days ago and almost panicked. But, he  went to bed no problem and has gone to bed with no issues since, so i haven't given it to him again. I fully give credit to the mag sulfate cream for that one. Going to have to start buying it by the gallon or something! lol
I actually rubbed a little on Sammy right before bed tonight. I am going to start using it with him as well to see if that might make him sleep through the whole night, since he is still waking up on a nightly basis. (rough....lol)

I have officially switched his multivitamin from Kirkman Labs Super Nu Thera Liquid in Rasberry, to Kirkman Labs Spectrum Complete Flavored Powder. He tolerates the flavor much much better.

Overall hes been doing well.
I am impatiently waiting for this darn diagnosis in March, so that i can get the ball rolling on the Deeming Waiver and get the speech and occupational therapies he needs.
Also this week i will be requesting another IEP meeting with his teacher and school, to increase the days he attends to 3 to 5 days.

Earlier this week i got a letter in the mail from Aetna (our craptastic health insurance that wont cover shit for Liam) telling me that our brand spanking new and super amazing pediatrician that is like an Autism Guru for families like ours.....is no longer "in network". I literally called jason at work bawling, barely able to say the words.
After months and months and months of hunting, calling, begging,  praying....i found Dr. Jill. We had to wait months to see her, since amazingly wonderful doctors like her are like angels for parents like jason and I and the waiting list is always long.  And our insurance actually (at the time) covered her services.
But, alas.
I am on the hunt again.
I was extremely depressed the rest of that day, i broke down in tears a few times over it, i cant lie.
It was a heavy blow for me.
But i don't have the time nor do i have the energy to waste wallowing. Gotta keep on moving forward.
Gotta have faith.
Everything happens for a reason and all that jazz.

For now we go back to our former, and also wonderful-but not as great in the autism knowledge , support and help department- pediatrician. I have to take the twins in for their one year check up. I wonder what he will say when i tell him we will not be vaccinating until the are at least 2? (something dr.jill was completely in agreement with and supported 100%)  Sigh. I guess we shall see.

Another thing i have had to come to terms with for the moment is, that we are going to have to postpone the continuation of the yeast overgrowth battle for now. He will need to be able to try and eat some different foods, and this is where the Marcus institute will come in to play with their feeding clinic.
As it is he has so few foods that he WILL eat (which includes breads that are gfcfsf BUT have yeast in them), that i am just not willing to cut any out at this time. So it will have to wait until he learns to eat some newer foods.
We'll get there though, in the coming months.

Also, I have come across this diet intervention called The GAPS diet, that focuses in on healing the gut.
From what i have read so far it has done wonders for many families with children with autism. I am very interested in trying it out, but again , it will have to wait until he is eating some more, and newer foods. This diet requires you to eat very specific things, most of which he is not willing to eat at this time.
In the meanwhile i am going to research the hell out of it and hopefully be able to apply it sometime in the next 6 months.

This past year has been the most challenging of my life.
Truly.
Made my past struggles seem trivial at best.
Not all, but most.
I am a fighter though. Theses challenges that life seems to want to continue to throw at me, at us? May knock me down momentarily but wont keep me down for long.
So be it.
Besides, i have so much more BEAUTY and LOVE in my life than these so called challenges.
Blessed to be able to say that.

I am focused on making this coming new year an amazing and beautiful one for our entire family.
So cheers to that :)

And so, we continue to soar!

Literally! lol ... you're catching come serious air there bubby! Go Liam!

:)

How your gut and brain are directly linked

How Your Gut Flora Influences Your Health
A great read, and explains how the gut and brain are directly linked and how this effects people with autism. This article can also give you a better understanding as to why Jason and I have chosen a bio medical approach -with dietary interventions, battling yeast overgrowth, the implementation of supplements and therapies to name a few. Furthermore, if you are interested in learning more about healing autism, or maybe just questions regarding autism in general there is a great organization called TACA (talk about curing autism now) that has an amazing website with tons of information regarding all things autism including info on Gfcf diet, supplements, yeast overgrowth , behavior therapies and tons more. Their website is my autism bible.
Thought I would share.

Our Probiotic- And an overview of Liam's current Supplement Protocol

We began using Kirkman Labs Probio Gold, Pro Biotic last week.
I try to give it to him separately from all of his other supplements  since i have heard it has a better effect on its own (but with a meal) . So far its been easy. It is in capsule form, so i just pull it apart and pour the powder into his applesauce or yogurt and he gobbles it right up.
Since our soy episode a few weeks back, we have introduced a few new supplements into his regime and i have to say although i feel it was almost necessary to begin them almost all at the same time due to our current needs at the time, we normally don't do that. we like to space out the addition of new supplements by 2 weeks, to allow his body to adjust and also to track any changes but his pediatrician gave the A ok , so we went for it and so far he has responded positively to the new additions.
So far his suppliments are as follows:
In his morning Oj (or any other kind of  juice, we switch it up- side note, no corn syrup or artificial flavors or colors in any of his juices) i put in:
1 teaspoon Kirkman Labs Super New Thera Liquid in Raspberry (which i am thinking about switching to Spectrum complete powder form because it is much better tasting and lately Liam has not been diggin the SNT taste)
1/4 teaspoon Kirkman Labs TMG powder
1/2 teaspoon Nordic Naturals Arctic D Cod Liver Oil 

At lunch time i give him a little bowl of applesauce or Coconut blueberry yogurt in which i pour the contents of one capsule of Kirkman Labs Pro Bio Gold Pro Biotic

At dinner (Around 6 pm) I pour the contents of  2 capsules of Now Foods 5 HTP 50ml. in another little bowl of applesauce or coconut yogurt. Or if he doesn't want that, I 'll put it in his drink. It usually takes about an hour for him to start feeling the wind down, calming effects of this. Result- he wants to snuggle and go to bed. Sometimes he will take my hand and walk us to the bathroom to let me know that he is ready for bath time. :)


After his bath i rub a little bit of magnesium sulfate cream on his back, or behind his knees or his arms.

These days usually in bed by 730/8pm, he watches one or two of his shows in our room and then i will come into tuck him in and snuggle and he is out withing 15 mins. No wanting to jump up and down on the bed or wrestle around or shake his head vigorously  to get dizzy... just calmness.
Tonight he was giggling and giving me kisses right before he fell asleep. A far cry from where we were at just a few months ago.

So, the overall result thus far?

A more receptive, involved, playful, lovable, calmer, happier Liam.
Tummy issues are a rarity these days, his skin no longer breaks out in little rashes of eczema.He is more tuned into his surroundings and the people around him. His interests have expanded. He is making more and more efforts to communicate, however he can. He is imitating at times, pointing at times. The list goes on and on.
My point being that all the things we have tried and applied thus far have made a positive effect, even if it was small, it was something.

I know it will only get better from here.
The reality is that we are not always going to have perfect days, but that is life.
We can only make up our minds to continue moving forward regardless of whatever obstacles come crashing in our path. We will plow through it eventually, I will always make sure of that.

And so we continue to soar :)

On bedtime battles: 5-HTP and Magnesium Sulfate Cream

From the age of 6 months to about 2 years old Liam was a dream sleeper. He would go to bed, awake- fall asleep on his own and sleep the whole night. 730pm to 630/730 am. 

Then right around 2 and a half, this all changed. He began refusing to go to bed. Kicking at his door, turning his lights on and off, the list goes on. We were full on BedTime Battle Mode. It was tough. Tough Tough Tough. This was pre GFCF diet, pre supplimets, pre opening our eyes. 

When i began him on Kirkman Labs Super Nu Thera, it was like a switch went off. No more battles.

But tehn about a month or so ago, the battles began again. I link this directly with the week i (mistakingly) allowed soy in his diet.

It took about 2 weeks for those negative behaviors to recede from that "week of soy", and although the battles werent as intense, it was still hard to get him to go to sleep unless i would lay next to him for 20-30 minutes in which case he be out like a light shortly there after.  But who wants to continue THAT habit? Love my boy but, not me. lol

So- after a few months of this mow, i contacted Dr Jill and asked her about melatonin, which i have read about over and over in my research. 

She advised us to try 5-HTP, along with a magnesium sulfate cream (also known as Epsom salts)

We are doing a cream versus Epsom Salt Baths because Liam tends to drink the bathwater at times and that would be no bueno.

5-HTP breaks down into serotonin which further breaks down into melatonin which the body makes to initiate sleep.

We have started the 5-HTP with 50mg at night. After 1 week, she said we may increase the total dose by 50mg to a max of 200mg/night. The 5-HTP needs 30-60 minutes to help. And since the 5-HTP will take a bit longer to get to a good dose, we started with the Magnesium cream asap as well. We can apply it 4x/day as needed. She said some days he may need more than others.

Magnesium has a calming effect.

We are on day two of the 5-HTP at 50 ml and i can already tell he will need a higher dose. BUT, since taking it bedtime has been easier the past few says. He lays in our bed to watch a show or two and then we put him in his bedroom. He whines and fights it for a few minutes but then goes and lays down on his own and has fallen asleep on his own both nights. 

So far i am a believer. 

I ordered the trial sizes of the mag sulfate cream and dang the are not playing around with teh trial size! It is a tiny little bit. I have only used it twice a day for the past two days and will be ordering a larger tube tomorrow. Its only like 18 bucks so i am willing to chance it to see the results. 

I purchase all of my supplements form the kirkmans labs website and OurKidsASD website which ships mostly everything for free.

And so, we continue to soar!

Our battle against Yeast

*A warning- the following post talks about poop. A little , not a lot, but poop non the less.

We began Liam on Nystatin, as prescribed by our new and amazing pediatrician about 6 days ago to battle Yeast Overgrowth which is common in kids with Autism.

Most people just in general have yeast overgrowth in their guts and this effects many things- how our body functions, behavior, moods, even sleep. But we are able to function (fairly) normally even with the excess yeast. However, EVERYONE can benefit from pro-biotics.

In people with Autism, this yeast overgrowth effects them incredibly much more so. Behaviors, moods and sleep patterns are already quite sensitive and easily disturbed to those on the spectrum.So, this has been on in our battle plan for a while but wanted to wait until we were under the right care to tackle it.

I was a bit nervous going in to it, i had heard stories of experiences from many parents and experts that during the initial "die off" of the bad yeast, that his behavior might change for the worse- temporarily- followed by more positive behavior changes. I was a little afraid of this die off period but i knew it had to go down. Bring it on.

So 6 days ago we began, he is taking 2 ML 4 times a day and he just lets me give it to him, no fights. Always awesome :)
Immediately the first thing i noticed was that he stopped going number two 3-4 times a day. Since starting he is down to 1, sometimes 2 poops a day. Also they are no longer loose or watery and he hasn't had a diaper rash since. His poor little rear is so sensitive so that was never fun.

So that's been positive change number one.
The second thing we have noticed is that he is a little bit more verbal, has started trying to imitate sounds and has also started pointing at us. He plays a game were he points at me, i say mama, he points at jenny and she says jenny and so on.

And thus far the only real negative reaction is that he seems to get really sleepy mid day, especially when hes at school. The only thing i can think is that it has something to do with the Nystatin, although drowsiness is not listed as a side effect.

We are now gluten free, dairy free, soy free and yeast free. And we are rockin the GFCFSFYF label! Shooooot. ;)

Along with the Nystatin I began giving him a new probiotic. The nystatin kills off the bad yeast and bacteria, and the pro biotic will help grow the good bacteria in his gut. All good things.

More on that in my next post.

And so we continue to soar!

-Alex