Two weeks on SCD!

As of yesterday, we have been on the SCD diet for two weeks! We have definitely learned a LOT this past week. Gabe had a huge issue with constipation for the first week. We were having to give him laxatives about every day to clean him out. You don't want that sitting inside any longer than it has to be! The constipation has gone now and he is having multiple bowel movements a day -which is CRAZY for Gabe. I can probably count on one hand the times where he has ever pooped more than once in a day and it not be diarrhea. These are very normal and solid. It's like his bowels woke up and decided to work correctly now. This has put quite a damper on potty training though. We use to be able to put him in big boy pants all day pretty much. Now, we never know when he's going to have to go and he refuses to tell us that he has to go. He has been completely #1 trained for about a year now with accidents here and there on occasion.

   So far, the diet is proving slowly that we have made a very good decision to give it a try. We haven't really introduced many new things yet. I have made almond pancakes with honey syrup for breakfast or sausage patties. Boiled or grilled chicken, pork, or steak for lunch/dinner, Snacks are the hardest to replicate. He LOVES his almond flour Monster cookies, and he now likes organic Dole ripe bananas, pecans, and almonds as snack options. He is so funny when he eats bananas....he walks around with it in his hand like he is so cool.  :)

So far, the biggest improvements have been with his bowel movements and attention span. We haven't seen a big speech improvement yet. We are hoping that comes soon!  :)

Monster Cookie Recipe as requested. : )

Here is the recipe for the cookies I baked Gabe last night. They turned out really well. I only made 1/2 the recipe for my first attempt ( 1 cup= 1/2 cup). The next time I will try the whole amounts.

From: Breaking the Vicious Cycle

Monster Cookies

5 cups nut flour
1 cup raisins (didn't use these)
1 cup walnut pieces (didn't use these)
1 cup flaked unsweetened coconut (used coconut flour instead)
1/2 cup melted butter (used Spectrum Shortening instead)
1 cup honey
2 eggs, beaten
1 tsp baking soda
1/8 tsp salt (used iodized sea salt instead)

1. Mix all ingredients
2. Drop by large tablespoonfuls on to greased cookie sheet.
3. Press flat with a buttered fork (so the dough won't stick to the fork).
4. Bake at 325 degrees until golden brown (15-20 minutes).

They baked faster than 15 minutes for me, fyi (we like our cookies soft and chewy though). I also added an extra egg and extra honey in the batter and on top after they came out of the oven as a glaze. I think the only changes I will make next time will be to add vanilla, cinnamon, and maybe nutmeg to the batter for some flavor. You could also add some berries or pecans in the batter for more flavor as well! I'm really picky about my cookies, but these really are amazingly great. Soft and chewy, and they don't have an over-powering nutty flavor either. ENJOY!   : )

SCD update days 3-5

We are 5 days strong with the SCD diet!!!! You have no idea how excited we are to say that. We were SO scared (mainly me) that we wouldn't be able to do it because it seems so scary and impossible.We are very blessed that Gabe loves to eat meats, so that has made it a lot easier on us. The hardest part was doing the intro diet and not having any snacks for school and in between meals. It's hard to explain to a 5 year old why they can't have a snack unless it's more meat or eggs (which Gabe is not a fan of).  That really sucks. Other than that, the diet has been really pretty simple. Gabe is such a wonderful little boy and we are so blessed to have him as our child. He amazes me everyday and I would take him a million times over ANY typical "easy" child any day! He is the strongest little boy I've ever known. 

I think he is feeling pretty icky the last few days due to the yeast die-off. The rash has gone away, but now he is having issues with constipation (normal for the diet) so we've been giving him milk of magnesia. It's funny because Elaine's book talks a lot about how to get rid of diarhea and what not to eat for that, but doesn't mention much about constipation. The PecanBread.com website mentions that it can be a side-effect from die-off, but doesn't really say how to keep it from happening. Maybe he will just have that problem until his gut heals a little more. Who knows.

Last night we bought some almonds and ground them in to flour to make some cookies that I found a recipe for. They were actually really simple to make and Gabe absolutely LOVED them. He was so thrilled to have "cookies" again. haha I made the first batch of 6 and tried one, but it seemed pretty bland so I ended up glazing them with a little bit of honey on top. That helped a lot. Gabe didn't seem to care either way though once I told him they were cookies. hahaha Gotta love boys! I was shocked that the almond flour turned out to work WAY better for baking cookies than any gluten-free product we tried. They rose well and didn't flatten as soon as I took them out of the oven. I would highly recommend using it!

 

Here is a picture of the cookies after they came out of the oven.  : )

 

Specific Carbohydrate Diet...Days 1 and 2

 Last week, Gabe had one of the worst weeks we have experienced. He was hardly using any of his words spontaneously, terrible focus, extreme hyperactivity, not sleeping/restless sleep/frequent waking, and got several bad reports home from school about attention span. It was so upsetting to see. We had planned on starting the SCD (specific carbohydrate diet) after the first of the year, but with last week we thought it would be best to start as soon as possible.

Yesterday was the day. We started the intro part to the diet, which consists of eggs, homemade chicken soup, and very lean meats like broiled chicken, steak, hamburger, etc. You do this intro diet for 3-5 days to "detox" the body and kill off the yeast quickly. Breakfast has been the toughest meal for us as Gabe is not a fan of eating eggs. We made him some yesterday and he did try really hard to eat some, but not as much as he usually would have. He is use to eating his GFCF Van's waffles with syrup and butter. Eggs just don't quite compare I guess.   : )

All-in-all, Gabe has been wonderful about it. He did climb the shelves in the pantry yesterday trying to get to some chips that I hadn't noticed yet. I grabbed those and threw them away with everything else. He did get in to a candy cane today from the Christmas Tree. I had no idea that he even knew those were edible. LoL Goes to show that even though he didn't try to eat them before, nothing is safe when you are detoxing from yeast! We gave him several extra enzymes to help flush it out before it messed up the new diet too much. He has had really rosy-red cheeks all day today and even broke out in a small red rash around his neck and ears. I'm sure this is all the yeast dying-off. It's weird how quickly the body can fight it off when there is nothing for it to feed on anymore. I'm hoping that his die-off symptoms aren't too severe. I feel bad for him and wish that I could make time go by faster for him. Wouldn't that be nice? I think he has been having some night terrors recently as well, he has been waking up randomly and crying or running in to our room for comfort, which he didn't use to ever do before.

So far, so good though. We are staying strong and trying to be extra supportive and patient with Gabe for the next few weeks. We want to give this diet an honest shot because we know that Gabe will benefit greatly from it. I will keep updating his progress.  :)

Updates :)

It's been a busy couple of weeks for us lately. Mike is very busy with work and working a lot of OT to make some extra money for Christmas that is fastly approaching, and Gabe and I have been busy with school. Gabe is doing really, really well at school and seems to LOVE going everyday. His Special Ed teacher has started him on a reading program in her class, and he is going to the regular kindergarten class every afternoon for a few hours. She says that he does really well in the regular room and doesn't seem over-whelmed at all by all the kids or activities they do. He does have an aide who attends with him, so that probably helps a lot. He has trouble stay on task and needs someone there to guide him if he gets distracted. We are very happy with where he is at school right now and are so very proud of him! I can't wait to see where he is in a few months!

We are going Wednesday to see the DAN! doctor for our 3 month visit to see where we are going from here. I am almost certain that we will end up deciding on the SCD diet, as Gabe seems to have very severe yeast (candida) over-growth issues in his gut. 
Why you ask? 
Well, in August, we cut back drastically on his carb and sugar intake. He was probably getting less than 5g of sugar/carbs per day. The result was a HUGE outburst of speech and language development. He was coming up to us spontaneously saying, "I want to swing" or " I want a drink", whatever it was he wanted he could find the words and ask without ANY cue or prompt from us. It was nothing short of shocking and amazing to us.
What changed? 
He started school and we slacked off on monitoring his sugar intake. We weren't really certain that the sugar-free diet was what caused the increase in speech until he regressed back to where he was before now. It's really dissapointing and stressful. I hate regression, just the thought of it makes me get chills. It's like the worst nightmare you could ever have and a constant fear of a parent with a child with autism. Candida also sucks....it is such a viscious cycle. You kill/starve it off and think you're out of the clear, and then it comes back to bite you in the ass again. I am %100 for sure that if we completely got rid of the Candida, that Gabe would be well on the road to recovery after. I just cannot figure out how to get rid of it forever. I feel so terrible depriving Gabe of snacks and drinks that every other kid runs around eating and drinking in front of him all day every day. I know, I know, I shouldn't feel bad because it's what is best for him. Yeah, I get that, but it still SUCKS! I know that it is what is best for him and that I need to be strong for him and do the SCD diet, but there is a part of me that mourns that loss of normalicy for him. I want for him to be like every other kid who can get ice cream from the ice cream man when he comes through the neighborhood (even though they are probably serial killers or pedophiles- kidding, kind of). I would love for him to be able to eat the greasy, deep fried fair food when we go every year like I did when I was little (even though it is TERRIBLE for you). I want all of that for him, but I also know that if I don't help him get better, then he will never have a shot at living a "normal" life as a functioning member of society. I want to see him get married, go to college, have kids (but NOT vaccinate them!), and be happy.

Does anyone else have these thoughts? It's so hard, but yet so rewarding being a parent of a child with autism. I would never trade one moment with Gabe for anything else in the world. 
He is my world.

 

Mona Vie?

So, my friend called me over a few weeks ago and showed me this "wine bottle", or so what I thought was a wine bottle anyways. Wine gives me a headache just looking at it, so I was immediately turned off.     :)

She then said that it is MonaVie, a powerful, antioxidant-rich superfood berry blend that is helping thousands of people with all sorts of different ailments around the world. It has the Acai Berry in it and about 17 other fruits in it. It also has preservatives though, which I found a bit odd. She then said that it was preserved because they have to ship it from whatever jungle they pick the berries from in Asia. The berries go through a "flash freeze" and then are brought back to be bottled from what I understand, so I'm not sure why they would add preservatives if it is frozen. Anyways, apparently it has been "known" to help people with autism, adhd, depression, diabetes, high blood pressure, cancer, etc. etc. etc. I googled it (isn't google wonderful?) and found about 7 google pages FULL of nothing but negative things to say about MonaVie. Saying that it is a pyramid scheme/scam and the juice is no better for you than drinking a glass of Welch's Grape Juice a day. Men's Journal even did an article saying that the amount of antioxidants in MonaVie are less than that of Welch's Grape Juice. I also have found some Acai Berry juice blends from various stores around here that are certified organic and have a TON of great superfoods in them, probably somewhat comparable to MonaVie's ingredients and WITH NO PRESERVATIVES at all. May I add that a liter of this juice from Wal-Mart is $6.99 vs the MonaVie price of $40 a bottle ( One bottle lasts 1 person 7 days), so that adds up to about $170 per month for one person drinking it. Very expensive stuff. My friend is now a "distributor" for MonaVie and they are telling her that she will become a millionaire in no time because this MonaVie is the next biggest thing and will pretty much cure anything you have wrong with you, more or less.


Now, I'm very open-minded when it comes to trying or learning about new things, especially when it comes to treatments for Gabe and I am not against this MonaVie juice...... If I knew that it worked like people who sell it are saying it does. I'm just wanting to find out more about it. Everyone who sells this juice seems to know nothing about what they are selling. I asked a guy who claims to be earning over $60,000 a year selling MonaVie if the preservative in it is aluminum-based or not and why they even put them in the juice if it is supposedly so "natural". He couldn't tell me and had no idea there were preservatives in it until I asked him about it. Strange....if I were making a living off of selling a product I would want to know any and everything about it to be sure I didn't get up in front of people and end up looking like a dummy, right? Clearly he is in it for the money and not the "health benefits" they claim.

One interesting fact is that Jenny McCarthy does reference it in her Mother Warriors book saying that has been known to help children with autism. I also found some testimonies online from autism moms saying that it has really, really helped their kids with speech, socializing, concentration, etc. I LOVE Jenny and usually take her word on most things, but I am a bit hesitant to believe that this really helps that much and if it is just as beneficial to drink the "so called off brand" that I found at Wally World the other day?

Any thoughts? Anyone else heard about or looked in to MonaVie?

:)

Kindergarten

No, this was not a typo. Yes, Gabe is now in Kindergarten. It seems so weird to say that, and even more strange to think about how old I'm getting. :) It seems like just yesterday when I was sitting in the hospital waiting for him to finally decide to come out. In his defense, there really wasn't much room for him to work with on the coming out part. Before I had him I never really knew what true love was. He amazes me more everyday and I love him more and more everyday.
Anyways, enough of the mushy stuff, I'll get to my point of this blog. We met with Gabe's new teachers, he will have one for his Life Skills (special ed) class and one for the reg. kindergarten class. He is splitting his time between the two at first with the end goal of being in kindergarten at least most of the day, if not all day. I would love to see him grow and improve so much that he no longer needs Life Skills class, but right now that is definitely the best place for him to be to get everything he needs. He has now been in school for almost 3 weeks and he is doing really, really well so far. His new teacher seems too good to be true. She teaches almost exactly how we parent Gabe. She doesn't baby him or treat him like he is different just because he has autism. She pushes him just as much as she would any other child, which I think is what a lot of these kids need. Usually, when Gabe has goals and is pushes to achieve them, he always exceeds them. He is so smart and loves school! He continues to use his words a lot at school, but a little less at home. I think that by the time he gets home at night he is just so exhausted that he tries to get lazy on us. ;) Once he gets use to his schedule I think he will jump back in to the swing of things. We have also slacked a bit on watching his sugar intake. We were doing really well there for a while and then school started and it made it very difficult to send snacks that didn't contain sugar or carbs. We are currently trying to find some snacks that he will enjoy, but that are also low in sugar. That could prove to be a challenge.

We are still doing the MB12 injections and they are going really well. I think for a few weeks I was injecting them too deep and they weren't as effective. It's almost like when they seem to burn and itch more, they are more effective. I wonder why that is...because the times that he doesn't cry after are when I don't notice as much effect from the shot.


Our DAN! Dr recently put Gabe on Naltrexone cream to see if it would help with Gabe's tippy-toe walking. Anyone else heard of this before? It doesn't seem to be doing anything thus far.....

Betty Crocker GF/CF cookies

Cookie Monster GABE .






The box. :)






Again...Cookie Monster!






The cookies when they came out of the oven. :)






We decided to try the new Betty Crocker chocolate chip cookies and here are some pics of how they turned out. Next we are going to try the brownies! :)

P.S~ I added an extra egg because the batter was WAY too dry without it. I think either they are just naturally more crumbly or the extra egg made it more crumbly. BUT, they taste great according to Gabe. :)

Exciting news!

Great news here. Gabe has been using spontaneous speech and in sentences!!!! He has always said one or two words together when prompted, or even tried to repeat a sentence like "I want....". We were at the pool on Tuesday and I always pack a little snack bag for him with a water and some fritos or something in it. He came over and grabbed my hand, I asked him "What?" and he said "I want drink". Wow, ok so I opened the snack bag and as I gave him the drink he noticed the bag of fritos in there and said "I want fritos". lol This is nuts, he has always needed prompted to even say "I want"...let alone say it without even a hesitation!
We think the MB12 injections are really starting to work! Along with, of course, all of the other 15 supplements and vitamins we are giving him per day. lol
Speech is our biggest hurdle for him right now, because I know that once he can at least have functional speech, we will be on our way to recovery for him! I have to give Mike huge kudos for being so great and helping me so much with all of this. While I'm at school every evening (almost) he is the one making sure Gabe eats his safe foods and gets all of his supplements he is supposed to get per day. Without him, I couldn't do it all alone, so I probably need to tell him that more often! He is great! :)

I suck at blogging....

I need to apologize for how bad I suck at this "blogging thing". I'm terrible and I never remember to update on here. It's so hard to find the time and when I do have it I'm stuck on Facebook or Twitter reading other people's problems! I am really going to make a valid effort to be better at this once Gabe starts back to school full-time next week. I say this now, but then I will be out enjoying "me" time during the day and still won't have time for this!

Anyways, now that I am done giving half-ass'd excuses for why I don't blog. I will talk about something with relevance.
I realized Monday that I had probably, most-likely been giving Gabe his MB12 injections too deep. He was experiencing SOOOO much hyperactivity that I thought Mike might go nuts. He doesn't have quite the patience that I do with Gabe. I think it's a man thing, no offense guys! Women are just naturally born to be more patient and understanding, especially with our kiddos. He has been almost constantly on his toes walking. He has always done a little bit of toe-walking, but never this often. I can barely get him to walk on his heels at all anymore. I'm not sure if it's the MB12 shots making him detox a bit or what. We have adjusted to 1 injection every four days now instead of every 3 days. Hopefully this will help with the hyperactivity he was experiencing. I also think that I was doing the injections too deep in his butt. They say that if you inject it into the muscle, then it tends to disperse all at once in to the body, where as if you inject in to the fatty tissue it sits there a lot longer. AKA less hyperactivity all at once. One way to tell it's too deep is if you can't see the purple/red liquid sitting under the skin. It almost looks like a bruise, but goes away in 5 or 10 minutes. I wasn't seeing that until the last two injections so I think they must have been way too deep. The shot we gave him Monday (the correct depth) didn't really make him hyper at all and he has been very loving and not as off the wall crazy. Thank you, Jesus! :)

We spoke with his DAN dr today by phone and he suggested using an opiate blocker to see if it helps with inflamation of the brain. This is sometimes a link to tippy-toe walking if it's not from yeast overgrowth or constipation, which Gabes isn't. I forget what the medicine was called now, isn't that awful? Something like Naprexin or something? It's compounded in to a topical cream that you rub on the inside of the thigh every night before bed. He is thinking that if it helps with the stimming issues, then maybe we will need to do an IgG test to see if he is still eating something in his diet that he's sensitive to. We have been holding off on the IgG test since it's not covered by insurance, but I'm thinking that we are going to just have to bite it and bend over.

We got the results back for his IgE allergy testing and he is allergic to NOTHING. No peanuts, wheat, dairy, soy, eggs, etc. While that is good news, it tells us nothing really.....waste of blood cells. I was pretty sure he was allergic to peanuts from all the nausea, diarrhea, and vomiting he had going on a few weeks back. Dr. Justus seems to think that he may still be IgG allergic to peanuts, so I guess we will have to wait for that test to be sure. He said we could give him peanut butter and see if he gets sick, but I would feel like a huge A-hole doing that to him. Plus, I don't think his comforter can handle many more washes from that 3 week stent we had.

MB12 injections

We started MB12 injections last Wednesday for Gabe. As of today, we have done three injections. At first, Gabe didn't seem to mind them and kind of laughed them off...but now he is not a big fan. I think he thought that it was a one time thing, but now that we are coming after him every three days with them he is over it. lol Poor baby! The things he has to go through. We are definitely noticing some small, but good changes so far. He is having a little more clear speech and it seems that it's forming easier for him in his head. I also noticed that he is starting to drink water out of water bottles and he is tipping the bottle back himself without assistance! That is huge because he use to try and would end up making more of a mess than it was worth. He has ALWAYS hated the taste (or lack there of I guess) of water and never wanted to drink it. He would just go without a drink all day if he had to, but then he would drink his bath water or pool water. I never understood that one, still don't actually. Kids are weird. Anyways, yesterday at the pool he drank like half my bottle of water and then drank half of Mike's bottle of water coming home from the gym. He said he gave it to him on a whim thinking he would reject it probably. When he asked him for it, it was all gone. hehe So, tonight for dinner he gave Gabe his own bottle and he drank it, plus Mike re-filled it twice in like a two-hour period~! How cool is that? Not so cool when it came to potty training though actually.....he had a big accident from all that water. I will take that over not drinking it though. Gotta take the good with the bad I guess! I will have to go and buy those little snack size water bottles for him to drink out of so he doesn't over drink. He has a tendancy to do that, I actually think it's part of his stemming issues or something. Once he takes one drink he likes to finish the whole thing.

Anyways, the bigger news is that he has split a banana with me the last two days! WITHOUT any gagging or bad faces after tasting it. Before the MB-12 shots, he would have at least made a sad face while chewing it and taken like 20 minutes to chew up one small piece. Today he ate about 6 bites of my Dole organic banana (which may I add are THE BEST organic bananas) ! What a big boy....I am soooooo proud of him! He really has come soooo far with eating. Sometimes I don't think even a typical child could go through what I've put him through when it comes to taking away and changing foods on him as much as I have this past year. It's amazing to me and he amazes me more everyday. God has truly blessed me to have such a wonderful little boy!

PS~ Anyone know where in the midwest you can buy the new Betty Crocker GF cake mixes? I've looked at Meijer, Wal-Mart, and Kroger with no luck! I really want to try them...but I'm not sure if they are casein-free too. Anyone know?

Family summer pics!

Gabe's first trail ride! :)






My perfect, handsome little boy!
My WHOLE WORLD!





At the 4th of JuLy Festival :)






Watchin' Fireworks with Mamma :)






He was so excited, & I was SO nervous he was gonna get burnt!

Going out to eat

So, I go back and forth everyday about going out to eat. Before we started Gabe on the diet, we would go out to dinner at least once or twice a week. It was fun for us to let Gabe try new foods and places since he went for years without trying ANYTHING new. So once we fixed his terrible food issues, we were so pumped to go out to new, exciting restaurants. Now, all I can think about is what the cook is or isn't doing back there with Gabe's food, plate, utensils, etc. It's crazy...or I'm crazy maybe? lol I get myself so worked up about it that I can't eat sometimes. There are times though that you just HAVE to go out to eat and I'm not one of those moms that can stand to seclude Gabe from eating out with us. After having a few bad experiences, I decided that there HAD to be someone at every restaurant who had vested interest in their company, aka a head manager. So, for the last few weeks when we've gone out, I've politely explained to the server that Gabe has some very serious allergies to foods and to no disrespect, I would prefer to speak to the head manager to assure no contamination occurs. Each time the server has been more than understanding and gotten the manager. I explain that Gabe has many allergies and that even the slightest amount can really harm him and the managers have always seemed very caring and patient. One manager at a local restaurant called Champps even brought me the oil they use to fry chicken in to be sure that I felt comfortable with using it. :) I am no longer nearly as worried or anxious about eating out, especially at the places we have been recently.
I just wanted to share this info in case any other parents out there felt the same as I do about eating out. It is so scary to put your child's health (and behaviors for the next week) in to someone else's hands. Try this the next time you go out to eat and see if it helps! I hope so! :)

Allergicare clinics ~ BAX3000

I'm not sure if anyone has Facebook or not, but if you do then you know how people request to be your friend all the time that you don't know/remember. I have had that happen a lot and ended up deleting the people later on. Well, I don't know this man well, but he is a really nice chiropractor located out of New Jersey who is, from what I have gathered, in to alternative/holistic medicines and was asking me if I had ever heard of an Allergicare Clinic. I've been talking back and forth with him for a while now getting info here and there about it. Apparently, it has been doing amazing things for kids with autism and allergies/sensitivities. That being said, was enough to catch my interest and attention!

He emailed me an actual hand-written letter from a mom who's son was treated by this BAX3000 machine. He has ASD and was on the GFCF diet. From what the letter said, she has been able to completely remove him from the GFCF diet now after treatment and he is making huge gains in speech and receptive language skills. I think the boy was around 2 1/2 when he started the treatment. The website for the Allergicare info is www.allergicareclinic.com . It definitely seems a little "out there", but what treatments that we do aren't? lol
From what I read, the way it works is that you are hooked up to a machine through clips on your fingertips. The clips send lazor impulses through your body that trigger your immune system to respond. Eventually, with the gradual exposure over and over, your body should start giving off a positive response to the alergy instead of a negative one. The treatment at the chiro office here by me is $1000 total for everything from start to finish. That isn't bad really I guess if it works. It all sounds a little too good to be true to me, but I am researching it actively. I will do ANYTHING I can to improve Gabe's quality of life! Now, that doesn't mean that I jump on anything anyone tells me to try. Mike and I sit down and do our homework usually for months before we decide to do something. We have to be %100 comfortable with it and it has to be completely safe. This seems very safe, but Mike is very skeptical about it. He just doesn't see how a lazer could travel through you and cure your allergy. I don't claim to understand it at all, but I do think it is very interesting and I always enjoy learning about anything that could possibly help our kids! Plus, I don't really see why this Dr. would have any reason to lie to me about it working and he seems like a very nice guy. I wouldn't be going to him and paying him to treat Gabe or anything since he lives in another state. That makes me feel like he is really trying to help, not scam anyone. It's sad that we have to be so careful not to get burned or scammed by people these days, especially with the autism community. So many bad people out there these days!
If anyone wants to read the hand-written letter he sent me please let me know and I can email it to you or something. :)

Some new pics to share!

Gabe camping with Gramma <3









Look at the great buy we found at Meijer for $20!!
hehe.....awwww!








Gabe and our new puppy, Brady.
Gabe's new best friend!

A Saint Louis Set-back.....

We have family who live in Saint Louis, MO so we decided to head out that way for a short weekend trip last weekend. This was really my first "trip" on the diet with Gabe. To make matters worse, Mike wasn't going along to help me. Yikes, I know! I luckily asked my mom to go with me and she gladly accepted. It took me two whole days pretty much to get all Gabe's meals prepared and ready to go. I thought I had it pretty well covered. Boy was I wrong!

We got to Saint Louis and met our family at a little farm restaurant called "Eckert's" and were planning to have lunch. I asked the waitress if she could make Gabe a PLAIN hamburger patty with clean utensils and no seasonings. She said yes that would be no problem and the rest of my family got a buffet style Fried chicken dinner. My aunt, who loves Gabe very much but isn't use to the diet yet, thought it would be ok to give him a piece of fried chicken without checking with me first. After he had already chewed and swallowed it, she asked if he could have a piece and when I freaked out and said no she told me that she had already given him one piece. Oh My Gosh..... I was scared/upset/sick/worried/etc. Everyone seemed to think I was over-reacting a lot about it I think, but it's hard when you work SO HARD to do this diet and then one little thing sets you back. It's really frustrating to Mike and I and we aren't sure how sensitive Gabe really is to things just yet. Has anyone else experienced anything like this? I was so upset. Needless to say, Gabe was fine that day and the next but right when we got home we noticed that his stool completely changed again (it had been the best it's ever been before we left!) and he has been acting crazy again. He is super hyper, pooping a lot, not talking as much, a lot less eye contact, he is playing with toys very inapropriately again, his yelling and stimming are worse than they have been for months....etc. It is soooooo dissapointing, but I guess it really has shown us that the diet WORKS for Gabe. So that is a light in this darkness! Now if only I could know how long this set back will last. I read in Jenny McCarthy's new book that Dr. Kartzinel's son could eat a crouton sized piece of gluten or casein and have a 2 week set back. That seems crazy to me, so I really hope that isn't the case for every kid! Speaking of which, that book is really good so far! If only I had more time to sit and read it. he he

From this experience, we have learned that we can no longer trust going out to eat. We are going to stay in from now on at least for a while. It won't be too hard to do as we have been staying in about 90% of the time we have been on Gabe's new diet anyways. I just think that the risk is too high for cross-contamination in restaurants, no matter how careful the people are. It isn't fair to risk Gabe's health just to go get a fancy dinner that we could make cheaper at home anyways. Lazy me! :)

I hope everyone has a great Father's Day!

Peanuts!!!!!

It has been such a crazy three weeks for us here. Wow!
Gabe was so extremely sick. We saw 4 doctors before getting in to his DAN! doctor (the only one who actually didn't blow us off) and found out that Gabe has a peanut allergy! It started almost three weeks ago when Gabe woke up and got sick in bed with vm + diarrhea. Never a good start to the day! I assumed that morning that he had caught something from the dirty gym playroom that he goes to every evening with Dad until it went on for about 3 days and wasn't getting better. We saw an MD and an ER doctor, got x-rays of his tummy, urine and stool cultures, etc. All negative and looked fine. Now, being that I am his mom, I knew that it wasn't this "crazy stomach bug" that these docs were passing it off as. Mommy knows best...always! I may have been ok with the tummy bug theory if Gabe had other symptoms commonly known to accompany vm+dr like *fever*, chills, body aches, *fatigue*, etc. He only had vomiting sporatically in the night time or early mornings and had bright neon yellow stools allllll dayyyyyy. We went through a whole perscription of nausea meds and a whole bottle of Immoduim to no prevail. Deep down I knew that it had something to do with his new diet, but I just couldn't figure out what. None of the docs seemed to think it sounded like a food allergy. I even googled and asked around to see if anyone else had these issues when going gfcf. No one seemed to know anything or had anything so severe happen. So, I waited to see if this "flu bug" would go away on it's own. Almost 7 days later it was still happening. After a 2 day no vomiting streak (we were elated)Mike gave Gabe a PB&J that night before bed and Gabe ended up getting very sick that next morning. Mike asked me if I thought it could be the peanut butter bothering him and I quickly said,"well, he's been eating pb his whole life, so why would it affect him now?" We dismissed the idea and we finally got in to his DAN! doctor who asked us if we were feeding him anything new or different. We then told him that we had questioned the pb and he said that it was highly likely that his peanut allergy was always being masked by the gluten built-up in his intestines. Since he was so clogged up his whole life it never caused a problem until we removed the gluten and casein. Isn't that strange? We weren't %100 sure, but were willing to do ANYTHING to get him to stop vomiting every morning and pooping terrible yellow colors! We have now been gluten, casein, dairy, yeast, and nut-free for 6 days now and I am extremely happy to say that Gabe has not vomited at all! It must be the peanuts. We also found out just yesterday that we think Gabe can't process soy well either. Mike's mom heard about Gabe's nut allergy and went out and bought a soy-based peanut butter for Gabe. She made him some "peanut butter fudge" with the soy butter and he LOVED it. We had a wedding to attend yesterday evening, so Mike's mom kept Gabe for us. Turns out he had terrible bowels all evening after eating the soy based pbutter fudge. We told her to stop giving it to him and he is back to normal bowels again today. So, now we have yet another allergy to avoid. LOL - I have to laugh, otherwise I may cry. :)

I just cannot wait to see how well Gabe does now that we have removed (hopefully) all problem foods! I cannot imagine how terribly miserable he must have been this whole time I've been feeding him these foods that hurt him. :( He just sat there in silence and pain. I always wondered why he hated eating and only ate small amounts periodically. If he ate, he hurt. If he didn't eat, he hurt. :( Makes me soooooooooo sad to imagine. I will never, ever let that happen to him again. This is why I want to be able to write these blogs in hopes that someone who hasn't tried the diet will read about our story and at least give it a shot. Even if your child doesn't miraculously heal from it like some kids do, it will at least help them to have a better quality of life! That is all I want for Gabe, the BEST life possible! I will never give up hope!

I found a quote the other day that I LOVE. Not sure who said it....but it was directed towards Pharma companies! Love it. :)

"You may have silenced my child, but you will never silence me!"

Gluten Free for 5 weeks now....

So, we have officially been gluten-free for 5 weeks now (since April 20th). I'm pretty certain that there have been a few glitches here and there, so we have decided that we are really cracking down more on the diet. We are no longer going to take chances on trusting labels to say milk or wheat ingredients. If it says "natural flavorings", "spices", or things like that we are just going to opt-out on giving it to Gabe. Just to be on the safe side. We want to be completely sure that we give this diet the best shot we can and we don't want to cheat at all. We had thought we were casein free for almost three weeks now, but found out that Gabe's school still had a few bags of the gluten-free cookies that have milk products in them. I had sent them in when we first started GF and forgot to ask the teacher to discontinue giving them to Gabe when we switched to CF also. Whoops. :/ Stinks that we did that, but live and learn and move on!

I will note that it is sooooooooooo different to go out to eat now. We have went out for dinner three times in the last 5 weeks. We went to P.F. Changs first, which I have heard good and bad reviews on their allergen menu, and Gabe got the lemon chicken that is gluten and casein free. He wasn't too crazy about it and I don't blame him. It was pretty nasty. He did eat the GFCF lettuce wraps though- minus the lettuce. :)

We also found a local pizza place called Monical's Pizza that just recently started offering a gluten-free pizza crust. We were soooooooooo happy and ran right out to go try it. Gabe ate almost a whole 10" sausage, pepperoni, and bacon pizza to himself. They were wonderful about going out of their way to be sure everything was gluten and casein free and cooked separately. The manager even made the pizza herself just to be sure. It is so wonderful to have places like that in this world! The GF crust cost $3.00 more than regular, but totally worth it if we can have a safe place to go have a family pizza night. Their pizza is spectacular too!

We have had a rough week this week with Gabe. He woke up last Tuesday morning with vomiting and diarrhea and struggled with it until yesterday evening. Almost a full 7 days with it. Poor baby. We thought at first that maybe he was really struggling with detoxing from the diet, but when we went to three different doctors they all said that it was just a nasty stomach bug. We are hoping that it is gone now! We are all ready for a full night's sleep again. :)

We go back to see Dr. Elghammer (DAN! Dr.) in Illinois on Friday for a follow-up from last month. We have been on the secretin therapy for a month now, not really seeing many results from it so far. Not sure that we will continue it or not.

A few family pictures :)

Mike and I on his birthday!




Mike and Gabey at the Zoo.





My beautiful, handsome little boy!




Gabe and Mommy!

*The Gluten-free and Casein-free Diet *

After we got all of Gabe's eating issues resolved, well, most anyways, we knew we needed to start him on the diet. We at least wanted to give it a try. They say that about 2/3 of children with autism see great benefits from GFCF....which means that Gabe could be part of that 1/3 who won't benefit. The only way to find out was to jump right in and give it our best shot. Like I said before though, we didn't want to be those people who gave it a half-ass effort and then told people that it didn't work for us. People who try the diet, but still let their kids have occasional "treats" aren't really doing the diet. Any wheat or milk will set these kids back so fast! So we knew that we needed to set a date to start and then get prepared and organized well before we began. Our date was set for April 20th, 2009. This was the day after Gabe's 5th birthday party. I wanted him to have his last "glutenized" birthday cupcakes. :) I was extremely nervous and had sooooooo many thoughts and concerns.....what if this doesn't work and we've done all of this work for nothing? What if Gabe won't eat any of these "bread substitutes" that we spent tons of money on? What if he hates me for depriving him of these foods? etc. Then I spoke with a few great people who also have kids with allergies and they asked if I'd rather have Gabe be a little upset with me about this diet, or have him forever locked away in his autism world? Geee.....what a tough call! NOT!!!!! Sorry Gabe, you're gonna have to hate me I guess! I promised him that I'm going to help him get better no matter what. I know that he is in there and he just can't fight his way out yet. He needs our help!

BTW: I just have to say, Mike has been my absolute rock and has put up with my endless crap through all of this. He is so wonderful and I am so lucky to have him. I know so many moms don't have a partner in this who is willing to help or participate in anything. Heck, half the dads just walk out after they realize that their sons are "defective". It's so sad to me....

Anyways, back to the diet stuff. :)

We removed gluten on April 20th. It has been a few days shy of one month completely gluten-free now. I cannot tell you how wonderful it has been so far. Gabe transitioned so well. It was like a dream! He is a big meat-eater, so that has made it pretty easy for us. We grill a lot of chicken, pork chops, steaks, all-beef Hebrew National hot dogs, and burgers. We found some great breads substitutes from that ENER-G brand. The Tapioca Loaf Bread and hamburger buns are great for Gabe. He actually likes them a lot. I also made homemade GFCF chicken nuggets to freeze. They were so quick and easy, when I needed a few I would just pop them in the microwave. My favorite stores to shop at now are Natural Foods here in Avon, Whole Foods in Nora, and Meijer actually has a pretty good selection of snack foods. We have also started buying all of our meats from a local butcher who is completely natural and organic. It is amazing the difference in taste there is from meats bought at the butcher VS. meats at Meijer or Wal-Mart. Totally worth the extra money!
After pretty smooth sailing with gluten-free,we decided to removed casein last week, I believe it was on Sunday the 10th of May. So far, so good! It's still way early to expect to see huge results, but we are very positive and optimistic about everything. Gabe had been on an anti-fungal around the same time we started the diet in April and we have seen some NASTY die-off bowel movements from him. I couldn't imagine all of that build-up actually being in his little tummy. Poor baby! I wish I could describe to you the amounts of stool that came out of this poor little boy. I am so, so thankful that we were able to start this diet and help clean him out. Even if we don't see anything more than we've already seen from this diet, I do know that Gabe will always stay gluten-free. He is already feeling worlds better, I can tell. He is so much happier and a lot more loving than he already was before. He gives me endless hugs and kisses all the time. He is getting more social towards his puppy and other kids (huge!), and his speech seems to be getting a little more clear so far, he is starting to sleep much better at night. He is on clonodine for sleep issues still, but we have been able to start bringing his dosage down and he is still sleeping a full 8 hours without waking numerous times every night. Sleep has always been a big issue for Gabe, so we are really hoping that this diet will help calm his tummy and brain so he can finally sleep on his own without any meds at night! We are trying to be very patient with Gabe, as he has been a little irritable at times and has good days and bad days. Who doesn't, right? :) I will keep updating about the diet in future posts!

Re-Vamping Gabe's VERY limited diet.....

From as far back as I can remember since Gabe has been eating solid foods, he has been a very picky eater. At first he would try new things (around age 1). As soon as he tried mac n cheese, that seemed to be all he wanted for every meal. We were still giving him baby foods to get his fruits and veggies daily, and sometimes he would try cookies and pastas. From mac n cheese, he went to pizza, bread sticks, breads, PBJ's, etc. Basically all gluten filled foods! We wouldn't make that connection until MUCH later though....
About every 6 months Gabe would get sick of eating the same foods and go on what they call "food jags" in the autism world. FOr those who aren't familiar (lucky people!) that is where you eat the same food over and over and eventually get so sick of it that the mere thought of that food makes you ill. Most people get this normally after eating McDonald's three days in a row. They will go a week or two without eating it, and then return to McDonald's for more. With kids who have ASD (Autism) they will "usually" never return to that food after having a "food jag" on it. It's almost like they will look at you like, "Mom, how could you think I would ever actually eat that pizza?" Even if they had just eaten it the night before!! Kind of makes you feel crazy at times. lol
So anyways, Mike has been trying to talk me into putting Gabe on the GFCF diet for years now. I always knew I wasn't ready to commit to it, and I don't like to do anything half-ass, so to speak. Plus, at the time that we spoke about the diet (after reading Jenny McCarthy's book, LOUDER THAN WORDS) Gabe's diet was so poor that he had eliminated all but three or four foods that he would actually eat. They were: sun chips, cookies, and Burger King original chicken sandwiches. That was IT! We were so miserable wondering if Gabe was eating enough to keep him healthy....of course we knew that he wasn't healthy. Who could possibly be healthy eating only those three things once or twice a day?? It was always so stressful, I think even more so for me.
We had started seeing a "feeding therapist" at Riley Children's Hospital in September of 2008 who told us that if we forced him to eat something that he didn't like or want, then we would cause him to regress and stop eating completely from the trauma. That, of course, would freak any parent out to hear. You don't want to be the reason that your baby has to be admitted to a hospital with a feeding tube because you wanted him to try a piece of steak, you know? So, we went home after about the third or fourth visit to her and talked it over. Mike ended up saying something that I will never forget. He asked me one question, " Jade, what is so much better about him eating one or two foods than zero?" "Isn't it worth a shot to see if she's wrong?" I went to see his behavioral therapist who he has been seeing since his DX at age 2 and asked her opinion. She said that she would have to agree with Mike and said to try forcing him and just see what happens. So we did. For the first three or four days, we had to literally force food in his mouth and make him chew it. He would kick and scream and try to spit it out. Every time he would spit it out I would just put a new piece in. He eventually figured out that I wasn't backing down and so he just started chewing. We would go through that every day for the first few, then he started to realize that these new foods weren't so terrible after all and eventually started picking up bites on his own. After a month he was trying all kinds of new things every time we asked him to. We could tell that *most* of his eating issues were behavioral, not sensory. We could tell this because when he would eat something like chicken, which he liked in some forms, he would "pretend gag" and when he actually had an issue with the food sensory wise, he would actually gag or even vomit it right back up. It was such a hard thing to have to make him do, and I hated every moment of it.
BUT............It was by far THE BEST thing I've done for him yet.

:ACE PATHWAY STUDY:

In August 2008, we joined a medical study being conducted by the Institute of Progressive Medicine in California called the ACE Pathway Study. ACE stands for "Alternate Cellular Energy." This study was based on the theory that the polio vaccine I was given when I was younger was derived from these African Green monkeys, who were infected with a stealth adapted virus that the scientist believed has now helped to cause this new autism epidemic we have in our world. This stealth virus is what the DR. thinks is causing children with autism to have such terrible immune systems. The theory sounds really crazy and far fetched, I know.....but, the results looked pretty promising and it was a safe treatment. It consisted of a U.V. light therapy and neutral red dye (not touching any skin). The first treatment we did took an hour per night for 5 nights. We saw some pretty positive changes from Gabe for about three weeks after treating. Gabe had better attention, focus, speech, speech comprehension, less-hyperactivity, etc. Unfortunately, the treatment was costing the scientist a lot of money to make and he couldn't keep up with the demand, so for now the study has been put on hold. So, being the persistent mommy that I am, I started looking in to new ideas and treatments. :)

Beginning and current pictures

*Christmas 2008* Gabe is 4 years old here.
(Doing bio-medical interventions for about 6 months!)




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


*Gabe just diagnosed with autism......2 years old*

Vaccine Schedule

This is a comparison of the Vaccine Schedule when I was a baby (80's), to the schedule for kids now. SCARY!!

VACCINES....

Vaccine discussions are difficult for me. I've often wondered if maybe I am being dramatic about things, but then I look over a Gabe sitting on the floor absorbed in play that is in no way purposeful or age appropriate. I watch him as he runs around yelling and arm flapping through the house without any idea of why he is doing it. I listen to him struggle to communicate in the simplest ways with us.These sites bring me back to reality so quickly. Vaccine injury is our life, it's all we've known from Gabe since his first birthday when he got the MMR and was lost.
I am fully aware of those who don't agree or believe in this, and that's fine. I think everyone has a right to their own opinion about things. There is a difference between an opinion, and living something though. I know many people who judge those of us who choose to protect our kids from further vaccine-injury and have actually told me not to let my son play with "vaccinated children". If people have such "faith" in vaccines to get their kids 36 by age 2, then why would you worry that my son is not vaccinated? If those trust worthy vaccines really did what they tell you they do, then your child shouldn't catch anything. Problem is, most of those vaccines don't do a whole lot of good. Especially not for Gabe who is already immune compromised. I'm not completely anti-vaccine yet, I do think there are a few important ones like meningitis and tetanus. The more I read and learn about the drug companies and all of the corruption surrounding them, the less and less I trust them.
I find it odd that people are so quick to say that it's not vaccines that caused autism because the Vaccine Injury Courts ruled against the family they broad casted in the news, but did you know that they sided WITH two other families admitting that vaccines DID cause autism in their children? So that's 2-1 odds saying that vaccines DID prove to cause autism in those kids.....and there are thousands of other cases waiting to go to trial as we speak. The truth will come out and the ignorant skeptics will see that we aren't crazy, irresponsible parents. We truly love our children more than anything, and will absolutely do ANYTHING to help bring them back the way they were BEFORE vaccines!

I'm not telling you that you should or should not vaccinate your family, that is completely your choice. I'm just asking that you choose to educate yourself on the laws and facts about vaccines before you just trust your doctor to do what is best like myself and thousands of other autism moms did. I made that mistake and will forever regret it, so if I can help ONE person make an educated decision then that's fantastic!

Sorry, I promise all of my blogs won't be so Debbie-downer. Just had to get this off my chest! This may just end up being my therapy. :)

Getting Started.

Hi everyone!

So, I decided to start this blog for my son, Gabe, who is battling autism. A friend, who also has a son battling autism, started a blog site and I just thought it was a WONDERFUL idea to copy her. :) We are just getting started on our journey away from autism, and it may be a long one. I am prepared to do whatever it takes to recover Gabe.

I'll give you a little bio on our family.

I was 18 years old when I had Gabe. From the moment he was born he has been my entire world. It is really true what they say about how having a child changes everything. It truly does. I went from playing three sports in high school and have tons of friends to devoting every second of the day to this little boy I loved so much. Gabe was born on April 15th, 2004 and was 9lbs 5oz, 22inches long. I know, huge baby, right? :) Gabe developed very typically, hitting every milestone on time until around 7 months. We noticed that after his well-child check-up he got sick and wasn't babbling as much as he had been before. Being a young mom, I trusted our doctor (who had been my doctor my whole life as well since birth) when he said that it was probably nothing. We celebrated Gabe's first birthday party with friends and family who saw this bright eyed, happy little boy eating his first taste of birthday cake and watching/playing with the other kids invited. Four days after the party I took him in for his one-year well-child check-up and he received his MMR shot. A few days after that shot, we began losing our bright-eyed little boy. I believe that after each shot, we lost Gabe more and more. His immune system just could not keep up with the radical vaccine schedule we give our babies these days. When I was born in the 80's, my mom gave me TEN vaccines, now we are expected to give our babies 36 vaccines before the age of 3. That is insanity to me looking back now. Why didn't I do more research or question it? Every mom who is in my shoes feels some sort of guilt or regret about that very same question I've found....

Gabe was officially diagnosed with autism spectrum disorder in August of 2006. We had known since around 15 months of age that something was terribly different about Gabe. After his MMR, flu shot, and 2 DTAP vaccines within a 6 month time frame, he had regressed and pretty much lost all speech, eye contact, and social behavior he had gained in his short life. Since then we have been fighting to bring him back to us.