Update and a Correction

In my last entry I state incorrectly that ADHD stimulant medications caused tics and sometimes Tourette’s syndrome. My source was unreliable and I have since learned that those medications don’t cause the disorder or the tics, but they can uncover a predisposition to it. And surprisingly, a large number of boys with ADHD do develop tics and sometimes Tourette’s.

Anyway...I just wanted to clear that up first.

We have been researching and discussing the situation with Ben’s medications with very heavy hearts. I wonder many times each day why my sweet boy has to suffer with this troublesome affliction. Regardless of why, the fact remains that he does.

He has been medication free for nearly a week now and it has been a difficult week on everyone. Luci’s potty training efforts (she was nearly 100%) have gone backward, Gavin is highly irritated and distracted, and Ben is, well, he is all over the place emotionally and physically. I don’t think anyone who has never parented a child with severe ADHD can comprehend what it is like to parent and child who’s symptoms are not under control. During my researching and attempts to understand Ben I came across a comment made by an adolescent who suffers with ADHD. He said that having ADHD is like walking around with a tray of marbles and the tray has no sides so the marbles are rolling off everywhere and every time you move the tray to compensate for one, the others start rolling off the other side. It is a continuous battle to manage the things being input and output by your senses. Can you imagine? This analogy is quite revealing and you can see Ben’s struggles with his “marbles” in every aspect of his day now that he is off of medication. This is a handwriting assignment that he did last week, while still on Adderall:

And this one is a handwriting assignment done this week:

You can clearly see that he is very unorganized and all over the place. It took him less than 5 minutes to complete the first one you see, it was completed quietly and he was proud of it when he was finished. The second one too him over 45 minutes. It involved breaking two pencils, numerous pencil leads, and tears telling me how much I must hate him to make him do this boring work. It has been this way all week.

Statistics show that children who suffer from ADHD and whose symptoms are not properly managed grow up to be teenagers who self-medicate in order to feel better. Statistics also show that those whose symptoms aren’t properly managed grow up with social stigma and awkward relationships.

So, the decision to NOT medicate is a difficult one to make considering that it affects us all as a family and Ben as an individual. I had a telephone conference with Ben’s doctor yesterday and she was able to reassure us about the side effects of Strattera. She said that at Ben’s age we would be able to tell quickly if there were any negative side effects and we could immediately stop taking the medication. The main concern with the medication is with older adolescents who are more able to hide their feelings. At Ben’s age, he is an open book and we can gauge pretty quickly when something is amiss with him. So, we are proceeding--with caution--with the medication. It will take at least two weeks to determine if it works for his symptoms, unlike the stimulants which worked right away. We also are going to be looking into other factors that could be contributing to the behavior. Our doctor is not particularly fond of the notion that diet and exposure to certain chemicals can cause or contribute to ADHD, but she has given the go ahead and said it can’t hurt to try. We are considering the Feingold program or something similar. Feingold’s supporters indicate a 90% success rate so we think it might be worth a try.

Finally Spring

Two weeks and counting! We have just two weeks left of school before we take our “Spring” break and we are all looking forward to celebrating our break with a camping trip with Grammy and Gramps.

Our butterflies emerged from their chrysalides over the course of a few days this past week, with the final butterfly emerging on Easter Sunday. We were all there to witness this ‘re-birth’ and it was amazing to see! Later in the afternoon we released the butterflies in our yard and watched them fly away. This was an incredible experience for the kids and the timing, with an Easter Release, couldn’t have been more perfect!

We are facing medication issues with Ben yet again. The stimulant medications that are commonly used to treat ADHD can cause tics, much like someone with Tourette’s Syndrome. They can even CAUSE Tourette’s Syndrome if the meds are continued and the tics are allowed to continue. Ben’s current medication, Adderall, had begun causing a pretty severe tic in Ben’s eyes. He was blinking almost all day and it had become quite bothersome to him. We have stopped the medication, and thankfully, the tic stopped immediately as well. But this leaves us at a crossroads. Two of the three stimulant meds we have tried have caused a tic and the third was only given for a short time. The doctor doesn’t want to give him any more stimulants so the other option is to use Strattera, which comes with a pretty unnerving list of side effects, the first of which is a risk of suicidal thoughts. This risk is increased in children who have bipolar disorder or who have a family history of bipolar disorder or suicide attempts. After reading and researching I just do not feel at peace about giving Ben this medicine without spending more time researching and praying about it. At this point, it seems our options are pretty limited...we either go with this medication or we go with none and we have to weigh whether the benefits of taking the medication outweigh the risks.

I will keep you up to date on what decisions we make. In the meantime, if any of you have some insight or words of wisdom that might help please feel free to share. We know that ultimately it is up to us what to do, but we value your input.

I put up a few Easter Photos in the photo album. Our Easter was great! We had family from California share the holiday with us--my cousin Karen and her husband and beautiful daughter, Lacie. It’s been almost 11 years since I last saw Karen, so it was a sweet holiday for me! Be sure and check out our photos! I did not get to take many, I was simply too busy! Also, be sure to look over on Gavin’s pages. He has posted at least once recently and he plans to do so again this week.

Busy Season

February and March always seem to be busy for us. Maybe its because we are finishing our ‘year’ or maybe its because the weather is so nice that we take on other activities just to be outdoors. Whatever the case, it’s been busy a busy few weeks!
Gavin had a writing assignment that required him to write a dialog that might take place between two aliens having just landed on earth. His dialog turned into a play, complete with alien hats and a cardboard ‘set’ that he made. He enlisted his brother to be his alien assistant and the boys performed the play after dinner. Dad got ‘dinner AND a show’!
We are observing caterpillars for our science lessons this week (and next). Our caterpillars arrived on Monday afternoon but I didn’t think to take a picture until Tuesday, so we are calling Tuesday ‘Day 1”. You can see how much they have already grown! All three kids are extremely interested in watching them get bigger. Each day when Ben goes to write in his caterpillar journal Luci follows him and draws her own caterpillars and is sure to point out how much bigger she drew them today! Sometime during the first half of next week we should see the chrysalides form.

I’m learning, finally, how to manipulate the text and photo boxes on blog pages so hopefully things will format correctly. If you notice anything that doesn’t look right or have trouble navigating the new pages please leave a comment and let me know.

Be sure and check out the photo page as well. I have put up a few pictures from the past few weeks.