Rhett Murphy Update (Holton, KS)

We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Rhett’s story, see his original story click here: Rhett Murphy.

By Christina Murphy

Have you noticed any difference since he (Rhett) stopped taking the medicine?

This is probably the number one question people ask me these days. Hmmmmmm….let’s see.

Would you notice a difference, if your child started chewing on the collars of his shirt? (Day 2 of a lower dose).

What if he suddenly spends most of his waking hours ALONE? (Day 3 of lower dose)

What if your 11 year old tried to physically fight his dad because he asked him to brush his teeth? (1 week into the weaning process).

What if he pinches you because you fixed his radio, then hits his brother with a stick and you both need peroxide for the scrapes? (3rd day of just 1 pill a day).

Would you notice if he starts telling you that all the kids at school are making fun of him again? (First day of no medicine)

What if he cusses at you and his siblings, then takes off down the street to run away, all because he had a fight with his brothers? ( Second day of no medicine).

What if you don’t have to answer this question with words because you can just point to the bruises and scratches on your arms, your husband’s arms and your other children’s arms? (Ongoing)

None of these behaviors are new or shocking to us, or most Fragile X families. Some of them we had not seen for years, others just went away during the study, and still others never really went away completely but they had greatly improved during the study. We just don’t talk about them much. We don’t want people to judge our children for an aggressive impulse control that they have no power over. The sad part is, I could not give you an exact date that any of those behaviors stopped while participating in the study, but I sure took notice when they started again!

So, is there a difference? Yes! While participating in the study, we got a glimpse of what life is like without those behaviors. We will adjust, it’s what we do. But it doesn’t make the hurt or loss any easier to handle. We will have to grieve all over again. This time not because of the hopes and dreams we had before a diagnosis, now we grieve because our kids know what they are losing, we can see it in their faces, the sadness in their eyes. I am lucky enough to have a child who can communicate with me pretty well. So, I thought, why not ask him?

So I did……

“Rhett, how did you feel taking less medicine and then NO medicine?”

“I felt great taking the medicine, you know? I felt pretty sad because I do not get to take the new medicine anymore. My anxiety has been pretty high, yeah, I get really very angry a lot. I could control my anger and have it less and now I get angry doing stuff I didn’t notice before”.

This is why we keep fighting, this is why my heart breaks, this is why we will adjust but never give up.