Matthew's Puzzle and a mom putting it all together

Ahhhh! Kombucha

January 9, 2009 By Maryann

So I finally got around to talking about Kombucha. Since the new year I have started drinking Kombucha. I originally got it for Matthew because it has lots of really good probiotics but he didn’t really care for it. But I did. I read somewhere that some people call it “baby beer” because it tastes so much like a fermented apple cider or lambic beer. I personally LOVE lambic beer so it is probably no far reach that I kind of fell hard for Kombucha.

Kombucha is a fermented tea drink with lots of beneficial probiotics along with several organic acids, active enzymes, amino acids, and polyphenols depending on how and who is making it. I personally like the GT’s Kombucha the best, especially the Gingerade. That one is so yummy.

Now I don’t know for sure, it could be pure coincidence but I recently caught a head cold. I started drinking a bottle of the Kombucha daily and sure enough my cold was gone in three days.

Go check out a bottle of Kombucha and see if you like it too.

Our Latest DAN! Appointment

January 7, 2009 By Maryann

Yesterday we had our second appointment with our new Defeat Autism Now! Doctor. After a slow start, the doctor was behind schedule and we waited at least an hour, we got in to see the doctor. He immediately told us how well Matthew was doing. Matthew, unlike many other ASD kids his age, talks to the doctor and answers his questions. He even asked a few Why questions, which tickled the doctor pink.

We started by going over Matthew’s lab results. They showed that he does have metal overload, some seeming to be quite significant. But our doctor, after looking at Matthew as a whole child, does not feel we need to aggressively chelate him. Instead, he says, that because Matthew is such a verbal child and has good cognitive skills he does not feel Matthew is a “metal” kid. That means that we will need to get the metals out, but they are probably not the major contributor to Matthew’s autistic behaviors. We then looked at the next lab report and saw that Matthew does have a lot of markers for “leaky gut” and gut inflammation such as low levels of Bifidobacterium and Enterococcus spp. which are good beneficial gut flora, and high levels of Lysozyme which is an enzyme secreaed at the site of inflammation in the GI tract. So these are the two areas he really wants to focus on fixing in the next four months. He chose four months instead of three because he will be going to some additional biomedical classes in April (maybe the mini DAN!, I don’t know) and wanted to see what came from those classes. I really like that.

So our current plan of attack is as follows:
Month one:

increase Zinc to 2 teaspoons at bedtime (we are doing this because we saw such huge cognitive gains when we added zinc in the first time)
IgG2000 1 teaspoon a day. I will need to order this immediately. This is supposed to help with the leaky gut and gut inflammation we are seeing.

Month two:

Co Q10 50mg in the morning
LCarnitine 250 mg twice a day

both of these seem to be related to helping Matthew’s hypotonia. There is a good possibility that Matthew has a mitochondrial disorder and both the Co Q10 and LCarnitine are helpful to mitochondrial issues.

Month three:

Metal Free 1 spray daily working up to 45 sprays a day over the period of the full month. This is the mild chelator that will not stress his liver.

Month four:

DMG/Folinic Acid/B12 complex 1 tsp in the morning. This will hopefully continue to fine tune his cognitive functions.
If Matthew is still showing increased signs of hyperlexia we are to remove phoschol from his therapies for one week and see if he improves.

Then at our next visit we will readdress our current recommendations and go from there.

So I hate to say it, but I still haven’t told you all about my love of Kombucha. Maybe next time.

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January 4, 2009 By Maryann

I’m not really sure where to begin. I was going to write today’s article about my new found love of Kombucha – a fermented tea that is rich in antioxidants and probiotics. But instead I want to talk about some moms and dads out there that are really inspirational. These are the parents that have been working around the clock, day in and day out, for years trying to improve the life of their autistic child. I am amazed by the perseverance these parents show; the sheer dedication and determination. I often wonder if I have that same mettle. We have been working since Matthew was born to help him be better and to recover from all of the obstacles that life has thrown at him. I remember taking him to doctor after doctor when he was just a few weeks old. I mean, we had to take him to his regular pediatrician every other day for a week because his bilirubin levels were too high. But even beyond that, we took him to a pediatric GI when he was only a month old. He was seen by therapists and specialists (endrocrinolgists and neurologists) and he was poked for blood draws at a very young age. It was, and is, tough. It is so hard to know that there is something wrong with your child and you can’t fix it. You really, really want fix it.

But we have been extremely fortunate. God has blessed us and we are making great stides towards recovery. Matthew is so close to normal now. It is amazing to watch. Just today he was putting a mask on his face and being a seal. This kind of play was unheard of even six months ago. My little boy would not have allowed a mask to be placed over his face, and even if he did, he would have no idea what it meant or what he was supposed to be. But today he asked for the mask, he made “Arf, arf, arf” sounds and clapped his hands. He was a seal! That is such a huge step in the right direction. I keep getting glimpses of the child he will become. It drives us on. It keeps Larry and I focused and moving in the right direction.

But I wonder about those families that do not have such drastic progress. What keeps them going? I have a friend whose child is much more afflicted by Autism than Matthew. I had a chance to meet her child and it broke my heart. I wonder what will be the longterm out look for this child. I wonder how my friend and her husband can move forward; how they can keep looking for the “light at the end of the tunnel”.

I know that we as a society tend to celebrate fame and fortune, and we only cast a passing glance at those people that truly show heroic courage and determination. You can ask anyone you pass on the street who their hero is and I’m sure most will name a sports figure, actor or politician. But how many would say their neighbor who works tirelessly to recover her autistic child? Or the man who takes care of his aging wife? These are truly the unsung heroes, but these are also the people I know I draw my courage from.

Next post I promise to talk about something light and effervescent – Kombucha. But today I want to leave you with this – look at the unsung heroes in your life and for today sing their praise. I know I will!

The End of the Year

December 31, 2008 By Maryann

What an amazing, stressful, wonderful year it has been. We have been through a lot in just 365 days. When you say it like that, 365 days, it really doesn’t seem that long. But as I look back and realize just how far we have journeyed I get a real sense of just how far we have come.

I don’t really remember much about last January except that Matthew was not quite three years old yet and he was being transitioned into a Regional Early Childhood Center (RECC) pre-school program a month before he was technically eligible. Larry and I were thrilled that the school system and his teacher realized that he needed more intensive therapies then what could be supplied by his private pre-school. This was a wonderful step in the right direction for Matthew. He was almost a year younger than the other students in the classroom. Most of them had turned three before school had started in the fall. So many of his classmates were turning four as he was turning three.

This difference in age was very apparent when he was invited to a classmates birthday party. It so happened that is was on Matthew’s actual birthday, but as his party was in the afternoon and his friend’s party was in the morning, we felt Matthew should go. What a disaster. Matthew was not a physical child since he suffers from hypotonia (low muscle tone) and things like climbing just didn’t come easily to him. And unfortunately his friend had her party at the local gym’s play area. There was a lot of climbing. And a lot of games that Matthew just didn’t understand and frankly had no real interest in playing. There was food he couldn’t eat, and there was a LOT of stimming. I remember gathering Matthew and Nico together and making my way back to my car. By the time I actually got everyone situated and locked in their carseats I was crying my eyes out. It was so hard to watch my son be so different from other children. The whole experience was terrible.

But as the year went by we started to see real changes in Matthew. He was doing well in his new school. He loved his classmates and he was starting to be able to recall things he had done was in his class. Then over the summer we were lucky enough to hire a college student that seemed to have great success with teaching Matthew to write his name. She was an absolute Godsend and we can’t wait to get her back next summer.

We finally got in to see a DAN! doctor and Matthew’s cognitive abilities skyrocketed. We found out that Larry has a milk and wheat sensitivity, and we decided to put Nico on the GFCF diet too. Interestingly enough, Nico, who had not been speaking before we put him on the diet began to talk more after he was taken off gluten and casein. I had the rare pleasure of attending a DAN! conference and became so excited about what I had learned that I had to start blogging about it. (and aren’t you all lucky I did?) I even started making my own sauerkraut, which we served the first batch at Christmas!

I also became a Rescue Angel and have helped many other families on their biomedical path to hopefully recovering their child. And now as the year is closing and we have started an ABA program for Matthew, I am realizing that the child that walked into that RECC program 365 days ago is not the child I have with me, closing out the year. This new child is more aware, he is more present, he is more affectionate. He understands many jokes. He tells some himself. He asks pertinent questions and supplies many real, complex answers. He is far from recovered, but not that far. We are working, with many other people, to make Matthew just a plain, ol’ normal kid. I look forward to what the new year brings us. I am praying it is just Matthew. I am praying it is the “light at the end of the tunnel”.