Wednesday, October 28, 2009

To Be Gluten Free or Not to Be?

Well, I feel like we just aren't seeing results whether we eat gluten-free or not. We had strayed from our diet for a few weeks because we were passing the flu and other illnesses around in our house. I decided last week we had to get back on course and we have. I think if anything is helping, I think the supplements do help. Cutting out corn syrup, monsodium glutimate, and food dyes is always a good thing. But the gluten free is so hard to do and I just don't know that I see a difference whether he eats a sandwhich on whole wheat or gluten free bread.....honestly, it's expensive and I'm tired of hearing complaints from Joel and Alex about the taste and texture of the bread items after all the work I have to put into making it all home-made.

So, I am kind of giving up on it. I'm still cutting back on as many glutens as I can, but a slice of whole wheat toast in the morning or as a sandwhich for lunch.......that's all the bread he eats anyway. I will continue with the gluten-free pastas. We like those. The corn based pastas seem to keep their consistency the best and we don't seem to have a problem getting past the yellow noodles. :o) I bought Arnold's whole wheat bread this week (it's corn syrup free, which is very difficult to find) and a box of Special K red berries, which has wheat products in it. So, I have decided to continue to attempt to make wise choices, but relax a little and make my life a tad easier.

We had a major blow out here Sunday night. Alex in OCD overdrive, Joel correcting him until he couldn't take it anymore, and then both of them yelling. I just sit and close my eyes and pray that God will somehow deliver me from this, while Katie is already sleeping and somehow manages to continue through all the chaos and noise. Our home is not a household of peace and my spirit longs for it. Finally, Joel walked away, but Alex was angry and continued to rant and rave in his room at the top of his lungs. He was yelling that Joel was mean and a jerk and didn't understand. I went to his room and attempted to gently correct him and quiet him down, but he kept ranting at me, so I quietly shut the door to his room and walked away. As the noise continued, I got up again and shut the door to our room......he got the hint. After a few minutes, he came to our room and was still quite upset and repeating his same rantings. We told him we weren't going to listen if he didn't calm down. He calmed and quieted and shared some of his feelings and struggles with us. Joel began to interrupt, which I knew would set Alex off again. Sometimes, he just needs to get it out and tell us how he feels and what is causing the anxiety and we do have a tendency to interrupt to add our input and that makes things worse. He just needs to have his say. So, I told Joel that he needed to let Alex finish telling us how he felt and he agreed and backed down. Alex finished, we talked about a few things with him and then we prayed together. We hadn't prayed with him in months (to my recollection) and my heart broke when I realized how we have been trying everything else to fix this, when we have the greatest healer right here. God can ease our anxieties and quiet those voices better than any drug on the market or diet. Yet, I am embarrassed to say, we have put God on a shelf and gotten so wrapped up in trying to find other solutions that we have disregarded the one tried and true 100% effective remedy......our faith.

We are making a new habit of praying together as a family (Katie included). In the morning and at night. Praying for peace, praying for relief from anxiety. We have had 3 very quiet, peaceful days so far. Thank you, Jesus!
I am also attempting to add a bit of scripture memorization into our day. He can't battle the demons in his head (OCD) if he doesn't have the proper battle equipment. I told him the other morning that I see OCD as the devil....putting little thoughts in his head, "Alex, you touched that doorknob and who knows what germs might be on it......you'd better wash your hands." and he has to be strong enough to fight those thoughts. God is always with you, unless you walk away.....He won't turn his back on you. I told him to close his eyes when he thinks that way or feels anxiety and to quietly ask God to help him be strong. You might disagree with my way of thinking, but I don't know how else to make him stand up for himself and fight this. Unless Alex says, "no", to the OCD it will continue to run his life and I just can't imagine the constant fear and anxiety that he feels. It is no way to live.......he needs to be free.
Even our therapy is proving inaffective, unless Alex does his share......push the OCD back when it tries to push him around. Even though our counselor does not share things from a Christian perspective, she has basically said the same thing.....HE has to be strong and fight it or he'll never be able to cope.

Saturday, September 19, 2009

Finding the time to blog is difficult for me sometimes. I had hoped to post something every day, but with work and everything to do at home it's presenting more of a challenge for me. So, to catch myself up.....Alex had the flu all last week and with no appetite, I decided to not give him the supplements on an empty stomach. When he ate, he pretty much stuck to the plan, so that wasn't a worry. He didn't exhibit much OCD behavior when the fever was up, but once the fever fell with the medication, he would continue his normal OCD routines like nobody's business.
So, this week has been trying to get us back on track again. As usual, with the supplements and diet, he is showing reduced OCD. I am still changing dosages of supplements around trying to perfect the combination. So far, I haven't seen any difference.
Our therapy session this week was excellent. We made a list of the OCD behaviors that he has that seem to cause the least anxiety for him. We narrowed it down to 3 specific behaviors, then Alex devised his own plan to tackle the OCD. It is a struggle for him. I see him lying and saying that he's doing well at handling some of it, but I see the behaviors causing the same reactions. For instance, one thing is that he use the same hand towel to dry his hands for one solid day. Each day he can get a fresh towel. In the past, he has used multiple towels, washcloths, etc. to dry his hands. Each time he washes, he has used a different towel to dry with. It seems to me that this week has been better, though I called him on using 3 different towels the other day. I picked them up off the bathroom floor myself, so I know he did. He said he had not. I told him I picked them up to wash that morning. He then said it was my fault because I picked out the hand towel that day and it wasn't his choice. :o( I believe he's fabricating things to excuse the OCD.
On to a new week, with new challenges, and new attempts at finding a solution.

Saturday, August 29, 2009

Results from the Past Few Days

Thursday, August 27th, 2009-
Today, he didn't want breakfast. Made me sad. I don't know why he just doesn't eat sometimes. He didn't have any ADHD medicine left in his system that would affect his appetite.
I packed the same lunch for him as before. He seems to like it and says he's eating it all at lunch.
I let him have tacquitos for dinner, but he didn't want to eat again. He had left his ADHD patch on and had no appetite. :o(
Same supplements as previous, except at dinner I gave him double. He can't get to sleep at night.
I still think he's doing a bit less, but it's not getting better. The not sleeping at night is bothering me. He needs his rest. Also, Joel said I need to add that we have all his clothing in our room and he has to come to us when he wants to change clothes. He still isn't changing as much, so I don't see how that really matters.

Friday, August 28th, 2009-
Finally, an appetite again, though not as great as he had been having. He ate rice chex with rice milk and a tsp. of sugar.
We were out of ham and Frito's, so I packed him gluten-free vanilla cremes and a Smucker's naturals peanut butter sandwich with Polaner All Fruit grape jelly on the gluten-free homemade bread. Almost out of bread, so I'll be baking this weekend. :o)
He ate dinner at my neighbor, Becky's house. I think she said roasted chicken breast, fruit, and vegetables. She had called to clear it all by me.
I doubled the dosage of the L-Theanine (to 1000 mg) and the L-Huperzine A (to 400mcg) at breakfast and after dinner. The N-Acetyl Cysteine I kept the same at 1 dose at breakfast of 500mg.
He still can't get to sleep at night and I don't like giving him Tylenol PM each night. One of these, I think the L-Theanine is supposed to help you sleep better, so I keep wondering why he can't get to sleep? I ordered Kanna today, it's the one supplement I was leary of, but I think we may need to give it a try. Still no more change as far as frequency of hand washing and clothing changing this week. :o(

Saturday, August 29, 2009-
I made pancakes with Bob's Red Mill Gluten-Free pancake mix and served pure maple syrup instead of the corn syrup laden Log Cabin syrup we usually use. I don't even like pancakes.....OMG! They were delicious! Katie said she loved them too and gobbled them up. Alex ate a little, complained that they were terrible and that he "hate(s) my Gluten-Free diet!". Oh the drama! I think he's just moody this morning. He had already been screaming and yelling at Katie over something silly and the two of them fought. I gave him the same supplements....500mg N-Acetyl Cysteine, 1000mg L-Theanine, and 400mcg L-Huperzine A.

I gave in for lunch and let the kids have a Happy Meal from McD's. I made a deal with Alex that if we did, he could only change clothes at bedtime into pj's. He has stuck to it. Also, he only washed his hands 3 times from lunch until now and it's almost 7pm. Good results as far as I'm concerned. Maybe the supplements are helping more than I thought?

I made oatmeal raisin cookies for a treat. Alex was finally happy about something Gluten Free! YAY! :o) Everything was your normal oatmeal cookie recipe except for the Gluten Free Rolled Oats and All Purpose Flour. Everyone liked them.

For dinner, I made pizza with the GF Homemade Bread Mix from Bob's Red Mill that I like. The recipe was on their website and it was easy. It wasn't Mellow Mushroom, but it was nice to have pizza. Katie and I thought it was good and said she liked the crust (so did I). Alex just smiled and Joel said he can tell the difference, he'll eat it, but he's not excited about it. He will keep his thoughts to himself though and eat it because we are doing this for Alex. I put tomato sauce, canadian bacon, pineapple chunks, and mozzerella cheese on it. Honestly, I have made homemade pizza before and I thought this was better than them all. Think I'll try different toppings for Joel and I next time. I think we both like a little more on our pizza...Hawaiian just happens to be the kids favorite.
I gave Alex 1000mg L-Theanine and 400mcg L-Huperzine A again at dinner.

As far as the OCD goes....I think it's been a pretty good day. I noticed his hands are looking less red and they feel softer. Last week they were like sandpaper. I bought him this special hand soap at Bath and Body works to help with the dryness and cracking. I thought that was it, but he said he doesn't like the smell so he's been using a bar of Dove instead. So, that would probably help too. Last week he had issues with bar soap and had a meltdown......what can I say? There is no rationality with OCD. He still has a spot on his ear he keeps picking at and making it bleed. I know picking can be an OCD thing. Now, I notice that his nostril looks raw around the edge and he is prone to nose bleeds. I noticed him picking there earlier today. Are we trading one OCD behavior for another? I guess we'll have to see......

Wednesday, August 26, 2009

The Challenges Placed Before Us

The only experience with OCD I had ever had was laughing at the silly things that "Monk" would do on television. How far from that we turn when it becomes a reality and your child whom you love more than life itself, becomes plagued with Obsessive Compulsive Disorder.

We know Alex has always been compulsive and obsessive about things. When he was very little he pestered us with his insessant need to be reassured that there were no bugs or snakes in his covers or under his bed. He would fixate on a particular item or subject and not be able to "let go of it and move on" no matter how many times we told him to. It never dawned on us that this could be something bigger than just a quirky child with ADHD.

Last summer, the devastation hit when Alex turned 11 years old and began washing his hands like a surgeon after touching anything he thought was contaminated and changing his clothing repeatedly because he thought he had "pee germs" on them after using the rest room and sometimes in between. He also began refusing to touch his food and would only eat with a knife and fork. No matter how we pled with him, he couldn't stop and the anxiety....sheer panic....on his face if you tried to stop him was real. OCD was taking over and despite his faith in and love for God, he couldn't say no. It was affecting our home life and his grades in school, since the anxiety challenged his ability to focus.

He was doing odd things at school which made the kids only tease him and alienate him, and washing his hands until cracked an bleeding each day. I lay awake some nights and cried, because my son was still up at midnight doing his ritualistic behavior and could not find peace enough to go to sleep. Mountains of laundry....clothing and bedding each day have consumed me. There isn't an hour that goes by that the washer isn't running. He will run out of clothing and have a panic attack because he feels the need to change because he thinks he is contaminated.

We have been in therapy for the OCD since last December. It helps. We have been on 2 anti-depressants, Paxil and Zoloft, both of which had agressive, violent, and suicidal side-effects.
I have asked the psychiatrist about natural solutions. I watched ABC's PrimeTime special on OCD in children earlier in August. If you have a child with OCD and haven't seen this....it's a must. It helps to know you're not alone! I cried and cried through it seeing some of those kids struggling with the same thing my son does.
http://vp2.abc.go.com/watch/primetime/216354/225738/the-fight-against-ocd
This special told that research has found that OCD is the inability to process glutamic acid in the brain.
I encouraged the psychiatrist to watch it the next day. To this day, he still has not. When I ask about glutamine-blockers as an alternative drug, he just ignored me and began telling me that he wants to change Alex's ADHD meds to Straterra. I came home and did my research and based on what I found, it is not even something we want to try. Besides, the ADHD medicine he is on is the first that has worked this well in the 5 years Alex has been treated for ADHD.

Searching for an alternative....thinking "if the inability to process glutamic acid is the reason that Alex has OCD, and glutamic acid is made from gluten's and monosodium glutenmate, why can't you just eliminate those from his diet and reduce the glutamic acid levels to help or get rid of the OCD?". On the internet again. I like to do my research. I found this page:
http://www.ocdtribe.com/groups/_/id/178

I decided to give this a try. It makes sense and it cannot hurt. So, I have gotten the supplements and I am giving him about half of the adult dose since he is 78 lbs soaking wet. I am also converting us ALL over to a Gluten-Free, MSG- Free, and Low Glutamic Acid diet. We began Monday, August 24th.

In an effort to reach out and help anyone else with childhood OCD and pass this information along, I decided to blog our journey with this new diet. If the diet does not work, I'll be on to the next idea I have. I will not give up. God cannot possibly want anyone to be so miserable and driven by compulsions.

Here are my observations and menu from the last few days to catch up:

Monday, Aug. 24th-
Alex ate Gluten-Free Corn Chex with a tsp. of sugar and Rice Milk for breakfast. Took N-Acetyl Cysteine 500mg, L-Theanine 500mg, and L-Huperzine A 200mg with breakfast.
For lunch I packed him a ham sandwhich with Gluten-Free bread, Frito Corn Chips, Red Grapes, and a couple Gluten- Free Vanilla Creme Cookies.
He took supplements L-Theanine 500mg and L-Huperzine A 200mg when he came home from school.
For Dinner, I prepared an Organic Marinara sauce and Gluten-Free Spaghetti noodles for dinner. I let him sprinkle on a little parmesan cheese. I sliced some Gluten-Free French Rolls up and put a little butter and garlic salt on them and broiled them to make garlic bread. We all liked that meal. :o)

*He was very mellow today. Said he was tired. Ate very well and didn't complain about the food.
We noticed a decrease in the amount of clothing changes and hand washing just this first day. YAY! Hopefully, it will keep up.

Tuesday, Aug. 25th-
Alex ate the same breakfast yesterday with the same supplements.
Same lunch minus the Gluten-Free Cookies.
I added 500mg more N-Acetyl Cysteine to his afternoon supplements.
For dinner, we had Grilled Chicken Breast, Green Beans, and Alex requested Mashed Potatoes (which I think he ate 2 cups of!). I made the mashed potatoes with some butter and rice milk, salt and pepper. We all liked this meal too. :o)

*Not as mellow, but not difficult or wound up either. One shouting match with his sister when they argued over something silly (of course).
He seemed to have reduced hand washing and clothing changing again, until bedtime. He struggled to get to sleep. He kept getting up and washing his hands. I finally gave him a Tylenol PM to help at about 10:30. Wondering if it's the N-Acetyl Cysteine that I increased? I think I will go back to the original dosage tomorrow.