A Look Back On Going GFCF

Remembering when I started the Gluten-Free/Casein-Free Diet

Fortunately for us, while Joel was in medical school, he learned enough about the affects of dairy on our little ones that he convinced me to take dairy out of Justin’s diet when he was about 1 ½ years old. I remember that was when Justin “woke up” in our eyes. He made leaps and bounds of improvement. It took a lot longer for Joel to convince me to go gluten-free with Justin. Now that I look back on it, I kick myself for not doing it sooner.

I remember thinking that this was going to be the “Miracle Cure” and that Justin was going to be calm, a good listener, sit still long enough for me to hug him, etc. Not the case. The first week was the week from hell!

Two days into the diet, Justin was getting really angry. He wasn't sleeping; getting into everything; saying every bad word he could think of (like stupid mommy and shut up and you poop); breaking things; and ripping things. Just really angry.

He even managed to do this to his room during "naptime"...





The fourth day was even worse. He started repeating things over and over like "the birdie says hi, the birdie says hi". Just random things. By the end of the first week, he was off the charts B.A.D. He acted like I gave him CRACK. He was soooooo high, I couldn't believe it. I was in tears and ready to give him as much gluten as I could find just to get him to stop.

We were driving and amongst the angry screaming, yelling and throwing shoes at me, I heard a small voice that said, "remember...I'm in this with you. If you would just ask, I'll help you". I got quiet for a moment while driving and desperately asked God for help with what to do.

We got home and I took Justin into a room and sat him on my lap. I looked in his eyes and noticed something I haven't seen since he was a baby--NORMAL PUPILS. Justin has had massively dilated pupils since he was one year old. Every doctor noted it and was concerned but didn't know what it meant. Could this be a sign that the "drug effect of gluten" is wearing off?

I then took Justin outside for a walk. Families were taking their dogs to the greenbelt to let them burn off energy so I thought I would do the same for Justin. This is a child that can't walk 10 paces without getting tired. So I thought I would tire him out quickly and put him to bed. Wrong!!! The sprinklers were on (this is a mile-long greenbelt) and Justin took off for them. I wanted to run after him, but I just sat back and observed. It was glorious!

This child of mine who gets tired out easily and who hates water sprinkling on him (he says ouch) was running through the sprinklers screaming on the top of his lungs "woo-hoo". He even took his shirt off and let the sprinkles hit his skin. HE DID THIS FOR AN HOUR. He looked and acted like he had been let out of a cage. Truthfully,He has! He's been in a mental cage for so long it probably feels so good to be free. On the way back, Justin could feel the wind blowing on him and he was giggling and screaming "the wind, the wind, I love the wind". In the past he hated the wind. He would say the wind was hurting him.

That night, Justin didn't go to bed until 9:00 pm, 2 hours past his bedtime. He was so wired that when I gave him a bath, he was spinning in circles as fast as he could in the bathtub. He was so excited. It truly was a miracle to watch.

I thank God for giving me a different perspective in which to look at that day. I thought Justin was just making my life miserable, but that was because I was only thinking of myself. When I was able to look at it from Justin's perspective, I was able to see that he was so excited to be free that he wanted to enjoy every moment of it.

When I asked Joel why Justin would get worse if this diet was supposed to make him better, he said it's because he was going through withdrawal. Just like someone addicted to drugs. They go through withdrawal, and are very angry, then they feel great.

It's amazing to see a complete transformation in Justin's FACE...











And tickles me pink to capture a true, loving hug exchanged between brothers!

Remembering the Journey to Receiving The Title...AUTISM

This is something I wrote quite a few years ago, but wanted to share it on this blog...

For a year prior to receiving the diagnosis, I hadn't really done much to help Justin because I grew tired of trying to figure it out.

I was taking Justin to so many specialists--each one painstakingly emotional. We started with our pediatrician who diagnosed him with failure to thrive and said his kidneys might not be functioning. Then off to the Nephrologist who said his kidneys were fine. Then off to the first Developmental Pediatrician who said that because Justin looked her in the eye and was social with her, he couldn't possibly have Autism, but he might have delayed myelination on his brain which would cause it to not grow and that's why his head was so small. From there, we were in the hospital so he could have MRI's and CT scans on his brain. It was growing--THANK GOD. That doctor sent us to a Geneticist who thought it was Williams Syndrome and ended up testing him three times for it because she was so convinced he had it. Negative every time--THANK GOD. The last specialist we saw was a very well known Neurologist. He did intense testing on Justin and said there was cause for concern but couldn't really give us an explanation as to what the concern was. He reassured us that because Justin was so good looking, he should do fine in school with his teachers and peers. Oh that's comforting! Glad we spent $5,000 for this guy to tell us that. Every specialist we saw did the same thing--they threw their hands in the air and said they had no clue what was wrong but something was definitely wrong. I was so frustrated. How was I to help my little boy if nobody could tell me what was wrong, nobody could tell me how he was feeling inside or why he would have screaming episodes that lasted hours. After all this, I decided to take a break from trying to figure out what was wrong with him and just focus on him.

As the year went on he had become more aggressive. He didn't feel pain. He really didn't feel anything. Disciplining was a huge issue, because he didn't care and didn't understand. He now feels some pain, but it's nothing compared to other children. I couldn't leave anything open or it would be destroyed. He has run out of the house numerous times. I found him early one morning at my NEW neighbor's house painting their garage. I was horrified. The plumber's daughter has a free ride to college thanks to Justin. Our carpet cleaner and I have become very good friends! I have had numerous things broken because Justin wants to hear what it sounds like if it hits the floor. He didn't understand action equals consequence so this sort of thing happened over and over. He ran away at the mall, at church on Christmas Eve (we found him in the parking lot jumping in the puddles), at daycare. He has walked right off the playground equipment not realizing he would fall. He has taken my knives and tried to sword fight with them. I had become such a paranoid mom, that I didn't even know how to relax. I had to be on guard 24/7 or something would happen. I would go through the motions of talking to him, disciplining him, etc., but It didn't do a bit of good. You can only do the same thing for so long with no result before you want to give up.

It was quite embarrassing when he would approach a stranger and smell their butt; or take the gum right out of their mouth because he wants to chew it; or ask to see their boobies; or screamed for hours on a plane because he couldn't stand all the people; or would throw something in a store and it hit someone. People would look at me like I was a moron for raising such a terrible son.

This was my life for many years. Just dealing with it. But I didn't want to just deal with it. I wanted answers. I wanted more for him; more for our family life; more for me. I used to think "why did this happen to me? Why do I have to deal with this every day?" But now I truly realize how honored I should be. I know that God chose me to be Justin's mom--knowing I am strong enough and brave enough to fight this with everything I have in me, so that he will not live like this forever. God knew that I wouldn't stand for this kind of life for my child and that I would go to the ends of the earth to find out what's wrong and find out how to heal him. And so my newfound journey through "RECOVERY" begun. I couldn't sit back and "deal with it" any more. I had to fight--like God knew I would.

Now that Justin was older, it was easier for a Developmental Pediatrician to see that Justin had Autism. Sure he was social--but not socially appropriate! A label doesn't change what we already know about Justin. It just gives us a direction to focus our recovery on and focus all our prayers to.