Clouds, May 2010

Clouds, May 2010

Monday, April 18, 2016

hi hope, it's nice to see you again

I have blogged about this many times before related to different situations... but just to reiterate there is no medication that is specifically indicated for the treatment of fragile x syndrome. However, there are many medications for treating some of the symptoms.

I struggled with giving my son any medicine in the first place. I told myself he was too young or too little or both, & that he just needed a chance to develop & learn. 
Eventually, roughly a few years ago, we realized he was going to need something to help him through the school day. Even with his carefully crafted IEP, & therapies, & so forth... it was clear at times he struggled to stay stronger than that "fragile x".

So when things got to the point that I worried more about my son not being able to reach his potential, than I did about starting him on a treatment regimen, we sought appropriate help. It was a journey & it is still on-going, & probably always will be. There isn't any one streamlined treatment plan-- not only because fragile x is a spectrum disorder but also because people change as they grow.

One of the challenges that we have, outside of working with specialists to figure out the appropriate dosing for Hayden, is how the medication is available. We can't even so much as get him to take a teaspoon of cough medicine when he needs it. Once when he was really sick when he was a toddler, & we were desperate to get an antibiotic in him, we put it in his milk because it was the only thing besides water that he would drink. And he REALLY loved his milk. And Mommy & Daddy made a REALLY big mistake because after that he wouldn't drink it anymore.

Over the years if Hayden got sick-- which thank goodness was not often-- the pediatrician would just prescribe twice the amount of medicine that Hayden really needed, in order to compensate for the amount that we KNEW he would throw up. We tried every trick in the book & there is absolutely nothing he will eat or drink just because he is told to... ESPECIALLY when he is not feeling well. And bribes proved useless. Also due to sensory issues he does not eat candy, chocolate, or even drink juice.

For his daily medications (to help with attention deficit & anxiety) my creative, sneaky ways have been relatively successful. Breakfast is usually his best meal of the day & he eats a large one consisting of a spinach omelet, blueberry waffles, cinnamon toast & more. And I prepare this full plate every morning of his life, because most days there are nothing but crumbs left. So luckily I found that if I crush the meds & smoosh it into a strip of bacon, he will almost always eat the bacon. The second dose at lunch-ish time is hidden in a pop-em. That is one of the methods the nurse has been using at school as well-- one med administered in a pop'em & the other med is a patch. The latter of which was a pretty tough struggle because Hayden can contort himself to pull it off nearly anywhere it's placed on his back-- even if it's in between his shoulder blades.

In recent months the Dr prescribed a similar medication in a pill form that is faster acting, for the times when Hayden does pull his patch off. It was not long before Hayden began tolerating the patch less & less while asking for the other medication more & more. And that was fine, but now he would be stopping in the nurse's office for a pop'em throughout the whole day potentially, because the other pill is not an extended-release. So this doughnut routine went from doable to less than ideal when we're talking about multiple doses.

When I say there is nothing we have not tried to get to where we are now, I mean it. But long story short, very recently we revisited the applesauce idea. It had not worked in the past, but H was starting to show interest in wanting to take the pill with a little cup & water the same way he saw other people do it. It totally didn't even come close to working, but that made us think maybe he was finally ready to try again with just one little spoonful of applesauce.

If we could get him to do that & we no longer had to worry about how the medication would be administered, or how we would sneak it in him, it would TRULY open up our options. One of Hayden's greatest strengths has always been his happy, engaging personality. He is a very social kid by nature. But recently I have witnessed how he struggles with following through certain situations. It is heartbreaking. And it is not due to lack of interest but more so affected by his inability to mentally "organize" & participate for the duration of an event (or an extended length of time in general).

For example the last few birthday parties he was invited to, two of them he attended for barely 45 minutes (down from his average which was probably closer to at least an hour & a half), & most recently the last one which was on Sunday he didn't make it to at all. Usually a sort of sensory-overload is what will make his brain decide he is done with an activity. (At least now he will say he wants to go home... it was even tougher when he was younger because he did not have much verbal communication until after he turned 5.)

And I know he wanted to be at that party on Sunday. But he also wanted to play outside after we came home (early, mind you) from a particular rec program he participates in... & he was also tired... but he also wanted to spend time with his grandparents who drove out that day... & he also wanted to go to the party so he wouldn't miss anything... & even if I map-out how it will all fit, it's as if he can't stop these thoughts from replaying in his head until he follows through with nothing.

I believe there are medications that can help with that-- nothing is going to work all of the time, but I know there are options which should work most of the time. We will try, & we have been trying, but we have also been limited because of how the medications are available... & what methods are successful to get him to take them in the first place.

Still I have remained hopeful that one day Hayden would eventually make the connection, that these help him get through the day better. 

Then this morning happened. Less than a half hour after Hayden arrived at school, I got a text message from his teacher that he pretty much immediately pulled the patch off. I sighed & felt a little bit sad & then I read the next message: "Asked for applesauce & took it no problem!" I couldn't believe my eyes & answered "Wow". She replied, "I know, so proud!" Then, through my very watery eyes I texted, "If he's consistent with that, this could be a game changer."

"Definitely!" she answered.