Adventures in medication

It’s snowballing, in a good way!

Melissa

We were “reluctant” to move Monkey to his new school, you may recall. We I threw more than one hissy fit in which I wailed over the unfairness of it all. I do still think it was unfair for the district to assign him to 3 schools in 4 years but now, with the benefit of hindsight, I can see this was the exact move he needed. Just, you know, maybe a year earlier letting us skip school number 2 but whatever! 😉

Today we had an appointment with C’s developmental pediatrician at the Fragile X clinic here in Boston and I was left giddy and a bit breathless by it. That’s new and, I have to say, it’s way more fun than leaving the office feeling brittle and broken! I’d like to do this more.

Our last appointment was 5 months ago, before Monkey started at the new school, so the pediatrician’s last impression of us was one of pure anxiety and anger. We were still furious about the entire IEP process, we were still prepared to hate…well…everything. So when he asked us how things were going, I don’t think he expected to hear me say, “Perfect!”

Of course, thing are not really perfect. Copper is still dying, Caleb still has fragile x syndrome, I still struggle mightily with depression, I have friends who are hurting badly but…given all that…we’re still pretty good which is way better than I would expect. In that 1/2 of a second between him finishing his question and my mouth opening, the last 5 months flashed through my mind at warp speed and since, “Fucking awesome!” didn’t seem appropriate ((See, I do have a filter!)), “Perfect!” just popped out.

Of course the doctor wanted to know details and so I flashed through the highlights: learning to read, loves school, interacting appropriately with peers, well liked in general, interacting with less familiar adults with ease, opened every single Christmas present in an age appropriate manner and time frame ((i.e. like a BEAST!)) and, oh yeah, STUDENT OF THE MONTH ((ZOMG!!)).

The look on the doctor’s face went from intense and interested to incredulous to one of pure joy…and he did a full on fist pump when I hit him with that last tidbit. There was nothing I could do but laugh at his obvious excitement over Monkey’s accomplishments. I really needed to look at all the things that are good and getting better today. It was an added bonus to see the doctor totally lose his calm, professional demeanor there for a bit.

I know that changing schools wasn’t a small change but I truly never expected for it to affect so much of our lives in such a completely positive manner. I have not one negative or critical thing to say about his teacher or aids or staff or…well…about anything. That’s pretty damned amazing since I’m better than average at finding the negatives. Not only can I not find anything negative to say, I find myself singing their praises…almost daily. Seeing how much happier he is and how much he is growing and changing…how could I not?

How is this for a wrench in the works?

Melissa

Duhdee and I came to a decision, finally, on the clinical trial. We decided that Monkey is doing so amazingly well on C.elexa (increased language, happier in general) *and* that since he’s just starting at a new school…it wasn’t fair to change his medications at this time. Soooooo…we emailed the amazing Dr. Nasir and asked him about increasing the C.elexa since he had mentioned he wanted to try some slight increases to see if Monkey had additional benefits.

Dr. Nasir called us back yesterday and said it was very interesting that we had brought up the C.elexa issue today because he had a notice on his desk from the manufacturer warning of heart risks at high doses. W.T.F.

He now wants to switch Monkey from C.elexa entirely. He doesn’t feel comfortable increasing the dose, even though it’s currently a tiny dose, given this information. Duhdee and I are back to considering the drug trial. We’re hoping Dr. Nasir and the study doctors can come up with an alternative for his anxiety that will allow him to participate in the trial afterall.

I said before that I would be disappointed if we couldn’t participate in the trial so I’m a little excited about the possibility of doing it afterall but…we just made up our minds! So much torture and now we get to start over…

***I’m rather amused to see what my related posts widget thinks is an appropriate similar post. Did it really have to come back to my liver???***

STX209 – You’ve heard of it, right?

Melissa

We here at Chez Monkey are very excited that there will be a nearby clinic for Seaside Therapeutics’ Phase III STX209 trial. We have spoken to the researcher at UMASS in Worcester and he’s given us the OK to share with you what he told us in our screening call. Duhdee and I are still discussing our participation, that’s a separate post though.

The screening call took about 30 minutes, it could take longer if you have more questions or if your child has more health concerns, Monkey is a healthy boy so we skimmed past most of those pretty quickly.

This first call is to establish preliminary eligibility. If you make it past this call, you will go to the study site for additional screening. So, what are they looking for in this first call?

  1. Your contact info.
  2. What language your child speaks and/or understands.
  3. If the fragile X syndrome diagnosis is confirmed. (If yes, they will want a copy of the report. If no, they can do the testing as part of the screening process.)
  4. What medications your child is currently on. There are some that are not being allowed, SSRIs are a biggie ((This is where Duhdee and I stumbled.)). Don’t assume you won’t be able to work around this though, the study Dr’s are willing to talk to your child’s prescribing physician if you are willing.
  5. If your child is on a medication that is not allowed, and you and your child’s doctor decide to remove that medication…and this is VERY IMPORTANT…YOU MUST TALK TO YOUR CHILD’S DR. MUST! MUST! MUST! The period your child needs to be off the medication will vary depending on what it is. Generally, between 4 and 8 weeks.
  6. What educational interventions your child receives, if any, and when that started (PT, OT, ST, Special Education, etc.)
  7. What behavioral interventions your child receives, if any.
  8. What dietary interventions your child receives, if any.
  9. How your child does with blood draws, there are 3 during the study period.
  10. If your child ever participated in a clinical trial and how that went.
  11. Any questions or concerns you might have about any of what you’d discussed.

If you make it through the screening call you will have to go to the study site for additional screening. The additional screening will involve…

  1. A physical exam.
  2. A medical history.
  3. A psychiatric history.
  4. An EKG. He said it was a simple EKG, non-invasive, and only takes a couple minutes ((He said it was not painful, I could not help myself and replied that Monkey has a different definition of painful than he does, lol.)).
  5. Filling out behavioral questionnaires ((Of course, do any of us ever go to any appointment and NOT have to do this??)).
  6. A blood draw. He assured us the nurses they use are very nice and very patient.

So…you made it all the way through and you are enrolled in the clinical trial. Now what?

First, there are two age groups being included in this trial at the UMASS Worcester site. Ages 12-25, which is, as of August 30, underway and ages 5-11, which should be getting underway in the next two weeks. They have the trial drug on hand and they’ve cleared their ethics requirements, it’s just down to the nitty, gritty, administrative stuff.

The trial will last about 4 1/2 months. During that time there will be 6 study visits to the Worcester location and 11 phone calls with one of the Dr’s. The phone calls will be every 4 days for the first two weeks then dropping down to once a week and eventually once every two weeks. The visits will vary in length, the phone calls should be 20 minutes or less. So, there is a time commitment required here and you will have to stay on their visit schedule.

In the ages 5-11 group, called the HARBOR-C trial, there will be 4 dosing groups:

  1. placebo
  2. 5 mg dose
  3. 10 mg dose
  4. 15 mg dose

That’s a 1 in 4 chance you will not get the study drug. Once the trial is complete, however, you will be given the option of receiving the full dose of the study drug until the FDA approves the drug for marketing.

In the ages 12-25 group, called the HARBOR-A trial, there will just 2 dosing group:

  1. placebo
  2. dose adjusted by doctor during a titration period

As with the HARBOR-C trial, once completed you will be given the option of receiving the full dose of the study drug.

That is about it. It’s not an easy process but it wasn’t terribly painful either (so far, at least.) Duhdee and I are still talking it over and will be sending a follow up e-mail with some additional questions. There is room for 6-8 patients in each HARBOR trial, they’ve had a fair amount of interest but the slots are not yet full so I encourage you to make the call and talk it over.

Michael Hill is stepping aside, the new contact is below!

You can reach Mike Kara at:

Michael Hill Kara Manchester
Research Coordinator
University of Massachusetts Medical School
Biotech I, Suite 100
365 Plantation St. Worcester, MA 01605
Phone: 508-856-2041 508-856-2789
Fax: 508-856-8211
Research Line: 508-856-5896
Email: Michael.Hill@umassmed.edu Kara.Manchester@umassmed.edu

You can find out more information about the Worcester research group at http://www.umassmed.edu/psychiatry/candi/index.aspx.

Check out ClinicalTrials.gov for more information too. If you aren’t local to us, there are 19 other study locations, check here for a list: Clinical Trial Sites.

And, I don’t really think this needs to be said but, Duhdee and I have no affiliation with Seaside Therapeutics. We are vocal supporters but we are not, in any way, compensated by them or anyone else for talking about this process. We encourage you to reach out to them and think about it but we still may very well come down on the “No, thanks” side ourselves. If we do, though, it will be a pretty big disappointment for us…we really want to do this but it’s all about Monkey’s best interests. Obviously.

Sweeter than maple syrup.

Melissa

What is sweeter than maple syrup? Getting to spend a day with my family, driving around southern Maine! Today was Maine Maple Syrup Sunday, one Sunday each year dozens of sugar shacks in Maine throw open their doors and welcome in the general public. They demonstrate how maple syrup is made, they often sell maple flavored goodies (whoopie pies, donuts, ice cream with maple syrup, candies, maple kettle corn, etc.) and a few of them offer hay rides as well. We have been for the last 3 years and we have a great time but today was even sweeter…

You see, two and a half weeks ago we had a visit with our developmental pediatrician. We’ve been stable on Monkey’s Tenex (for ADHD) for some time but we were faced with a new concern. As he slowed down, it became more and more apparent that he was having trouble with anxiety. He’s always had difficulties with certain transitions but it was ramping up at an alarming rate to the point that even familiar and comfortable locations (home or Grammy’s house) scared him. You could see the fear in his face as we approached the door…heck, at home, we could see the fear start blocks before we even turned onto our street. Home is his favorite, safest place. He loves to be home…but the transitions…oh, he would be covered in snot and sobbing by the time we got his shoes off and it took a LOOOOONNNNGGGG time for him to settle back down.

We talked to the developmental ped. about this over a period of a few months because anxiety in our boys can be cyclical…up for few weeks and then down….depending on outside circumstances. Monkey’s was not going down. It was spreading and affecting more and more of his life. So, two and half weeks ago we started Monkey on Celexa. We told his teacher so she could watch him for any adverse reactions and we told no one else.

Last Thursday, the mom of one of Monkey’s friends commented that Monkey was making so much more eye contact and he was talking more. We’d seen signs but we WANT this to work and so we really weren’t sure if it wasn’t just hopeful thinking but this made our hearts pitter patter just a little bit harder. Today, was the big test.

Monkey had a LOT of transitions today. He was in and out of Grammy’s van a dozen times. We stopped at a half dozen farms and every single one of them was packed with people. Kids running around, adults milling around. If we wanted treats we had to stand in line. And he DID it. He was the sweet, funny boy we see at home. He talked to perfect strangers, his language was all on point (he didn’t get stuck on phrases from TV shows like he does when he’s anxious), he stood in line with us for 15 minutes at one point. No fussing. No whining. No screaming. He just stood there and talked about the animals he could see and the food he could smell. He walked into the sugar houses, he walked into a store even, without any issues. No tears. No trying to run away. He pet a Belgian DRAFT HORSE. No dropping to the ground like a limp noodle. No pulling on my hand to keep me from getting closer.

Once, when we were getting into the car, Jeanie slipped. Jeanie is my mom’s cousin, she’s always at family events. Monkey has met here many times but he has not ever talked to her, except to yell “BYE!” at her when prompted. Today, when she slipped, he asked her, “You alright?” He took her hand, he initiated it even. He talked to her, greeting her every time she came back to the car…by name, “Hi, Jeanie!”

He was a changed boy. I have tears in my eyes thinking about this day…I’ve never seen him so calm and so relaxed.

Then, as the cherry on the sundae Sunday, when we got close to home…the spot where the anxiety always starts kicking in and the whining starts…he was perfectly quiet. He simply kept talking about Buzz Lightyear.

I know the days won’t always be like this but I am so hopeful that this will let Monkey live without some of that fear and anxiety that have been tripping him up for so long.

 

Another @%#^ing snowday.

Melissa

I’m not just feeling bitter over the fact that we still have a MOUNTAIN in our front yard from the last two storms, though that doesn’t help my mental status. I need to see some green grass soon, dammit! Anyway.

The real issue here is that between winter break and the 3 snowdays and MLK day and my trip we have not been able to get back into our school routine and it is wearing Monkey down. He is having a really hard time transitioning to school again and it had been going so well all fall. Also, he fell asleep for an hour and a half during the schoolday this week.

We saw the developmental pediatrician recently for 3 month meds visit and based on our reports he said it sounds like Monkey’s anxiety is really ramping up right now. He said this sort of thing tends to happen in cycles but he agrees with us that it’s time to treat it…now we just have to figure out how to treat it.

He’s ahead of schedule.

Melissa

Monkey is ahead of the game this week at least in regards to his weekly fade. He typically starts the week a little rough, it is hard to go back to school after a weekend, right? But he’ll rebound and have a good Monday (minus the AM transition), Tuesday, Wednesday and Thursday. By Friday, he’s tired and it shows. 

It’s well documented that he doesn’t get as much sleep on school nights as he does on vacations despite the fact that we keep the same sleep schedule and routines day after day after day. He just DOESN’T sleep as well. He has trouble falling asleep despite the medications and he has trouble staying asleep. So. Friday mornings are a whiny mess but he makes it through and generally does OK…maybe resting a little longer at story time than normal but nothing outrageous.

Today, you may have noticed, is only Thursday.

Today should have been an easy, peasy drop you off and “see you later” kind of morning. Unfortunately, Monkey was whiny and dragging asp. He wanted me to carry him to the car. “Not today, we’re going to ….?” “School.” He wanted to ride the train, pweeease?? “Where are we going?” “School.” He wanted me to carry him to class. “Monkey, you’re too …?” “Heavy.” (Not really but I only carry him as a very special treat when he’s being very good.)

Once we got to class he was tearful, wanting lots of hugs, wanting us to stay. He’s exhausted. I really just don’t know what to do. He’s on meds for his ADHD that typically results in drowsiness but it doesn’t seem to help him fall asleep. We use melatonin sometimes but he gets used to it after a while and we have to take a “drug holiday” because it no longer works. The Dr. we see will just have us chart again and the numbers aren’t awful. He loses 30 minutes or so of sleep but that ADDS UP and by the end of the week he’s wasted again.

This week is probably worse because he did have last week off. It’s just so sad to make this little guy chug through a day when I know exactly how miserable he is. No one ever promised it would be easy though.

Where’s Karen? I need a “suck it up, buttercup.”

A new day has dawned…

Melissa

and I witnessed it.  Yip-frickin-ee.

This has become the weekend of no sleep, this isn’t how it’s supposed to work.  We finally have an Rx to counter the night wakings, it’s supposed to be better!  *sigh*  Monkey’s internal sleep-clock hasn’t gotten the memo though.  Even with the new Rx he’s still waking around 3 in the morning and staying awake for at least an hour.  You know what happens when I get woken up at 3 AM?  I stay awake!  Ugh!

So, here I am, 3 hours after the initial wake up, ready for bed.  Monkey should be up, bright-eyed and ready for another day of excitement in … oh, let’s say 20 minutes … or roughly the exact moment I doze off again…

This entry is brought to you by one adorable Monkey.

Melissa

I am laying in my bed with my laptop on my lap.  My son is laying next to me using my shoulder as a pillow.  He is sleepy as sleepy can be but he’s still awake.  So much for T.enex helping him sleep.  He wants me to type, he loves watching the letters crawl across the screen.  I really and truly have nothing to say except that I hate how much he’s been struggling lately and if my typing nonsense and throwing it out there on the internet makes him feel even a little bit better then you all get to read WORTHLESS (thanks for the caps lock, bud) drivel.  Sorry.

So.  Earlier today Monkey made a really awesome discovery!  He can reach the M&Ms we keep on the top of the refrigerator if he grabs his stool.  Yay!  Now he’s constantly running around the house with hands covered in candy coating (aren’t those supposed to NOT melt in your hands, btw?) and a mouth covered in chocolate.  Which is exceptionally nice when he still sometimes shows his affection for me by WIPING HIS MOUTH ON MY CLOTHES!  I know he’s not the only one, do they ever outgrow this though?  I’m really going to miss that bag of M&Ms on the refrigerator.  Walking by and grabbing two or three is a nice little pick me up.  But I guess it’s time we give them up anyway…they were potty training rewards and we’re a good year past being potty trained now.  I think the lesson has stuck.

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Errr..sorry about that, he decided I wasn’t doing it right.

So, where was I?  Oh, we have no where left to put the M&Ms and unless we are willing to spend the next bit of time covered in candy coating and chocolate spittle we have no choice but to give them up.  The child is just way too tall.  *Sigh*

He’s wandered off again.  He’s asking for “covers” but he doesn’t want to go to bed?  WTH?  Anyone got any brilliant ideas?  Besides duct tape…because that’s all I’ve got…

A conference call.

Melissa

Tonight Duhdee and I had a conference call with the developmental pediatrician.  We caught up on what we’ve been seeing from Monkey over the last med-free week, none of which is particularly great.  His sleeping which had been tanking continued to do so with a vengeance.  Not only were the night wakings continuing but we had the new and added issue of not being able to settle down to sleep.

During the day he was…intense.  Busy, busy, busy with an extra helping of busy.  For those of you who’ve met him and marveled at our ability to keep up with him?  We lost the battle this week.  Duhdee has his own issues going on with back pain and sciatica but even still…Monkey has been an unstoppable force.  He was a whirling dervish of motion.  A Massachusetts Jumping Bean.  An Umma-wearer-outer, squared.  It’s no wonder I’ve had near constant headaches since last week, we get no sleep and we are constantly in motion.

The only not-awful part of the week of no meds was the deep pressure Monkey has been craving.  That has resulted in a lot of hugs, including some of the full body hugs that Monkey specializes in ((He latches on to me so tightly with his arms and legs that I don’t need to hold on to him, he’s like a little…uh…Monkey.)).  Of course, with me enjoying all the extra hugs I was also very aware that I was only getting all these hugs because my little guy was holding on by a thread and all that loving was really his desperate attempt to self-sooth.  So, if I let myself think about it, yeah, that part was awful too.  Disregard.

Earlier this morning I took a picture of Monkey just before he woke up.  He was sleeping with his hands under his bum and his legs crossed tightly ((It’s on Facebook.)).  When I showed the picture to a co-worker she commented that it looked like he’d put himself in a straight-jacket.  And it kind of did.  Even in his sleep he was still trying to self-soothe.  My poor babe.

After dinner we sat down and paged the pediatrician as instructed.  He’d had Duhdee give Monkey a single dose of the A.dderall to see if it helped alleviate any of the symptoms and it did to some extent but he was still rather intense.  After a lot of discussion we’ve decided to go with T.enex. The Dr. is still trying to decide if we’re seeing symptoms of ADHD because of anxiety or if we’re seeing anxiety because of the ADHD meds.  Treating the anxiety could take weeks for the medication to kick in and show a changes, we should see some immediate changes with T.enex though so, ultimately, that’s why we’ve gone this route.

You know, this really just sucks.  Fine, he needs medication to be the very best Monkey he can be but it just plain sucks that we’re “hoping” most of the time when we have to make these calls.

We kept Monkey up until the pharmacy could fill the prescription and started him on it tonight.   Here goes another ride on the medication roller-coaster!  Wheeeee!