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.
Wednesday, May 27, 2009
Sunday, May 17, 2009
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!
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. :)
Saturday, May 2, 2009
Beginning and current pictures
*Christmas 2008* Gabe is 4 years old here.
(Doing bio-medical interventions for about 6 months!)
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*Gabe just diagnosed with autism......2 years old*
(Doing bio-medical interventions for about 6 months!)
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*Gabe just diagnosed with autism......2 years old*
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. :)
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. :)
Friday, May 1, 2009
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.
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.
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