To minocycline or not, updated.

Holly’s mom of Holly Daze asked about an update on this topic and it has certainly been a hot topic on the FX related groups on Facebook and also on the listserve so …

In January of 2009 I posted the following (There are some comments to the post worth reading too, click HERE to see the original post and comments):

To minocycline or not.

OK, folks, did you all see this post on Dr. Mike’s blog? We are seriously considering trying minocycline with Monkey. We’re holding up the risk of potential teeth staining to a potential for improving Monkey’s overall quality of life. It’s not normally given to kids under 8 but they’re giving it to kids as young as 3 in the autism trial. Monkey is nearly 5. I’ve asked the head of the FX clinic in Boston his opinion. None of the families in this area have tried it yet according to the clinic though.

I guess I need to talk to our ped. to see if she’d even be willing to consider it…she may not be comfortable with it.

If anyone has a crystal ball that they’d lend to me, I would surely love to borrow it.

It’s now September of 2011 and while I’d still love a crystal ball if you have one to share I now know the outcome for this at least ūüėÄ

We did not put Monkey on minocycline. The director of our Fragile X clinic (Dr. Picker, who we love!) was not recommending minocycline at that time. He had been hearing stories of adverse reactions that concerned him and given the fact that there was no scientific proof of any benefit at that time, he was not prescribing it to his patients. We respect Dr. Picker’s opinion, and his caution in recommending medications in general, so we did not pursue it.

There is now a double-blind clinical trial going on at the MIND Institute. We are leaning in favor of the local STX209 trial or another trial that we’re aware of but we are keeping an open mind on the subject. We want what is best for our little Monkey (Duh, right?) and we haven’t eliminated anything yet. We’re really excited about how many options are in the works!

If you’re interested in the double-blind trial at the MIND, it is recruiting, see ClinicalTrials.gov for more details.

:-D

This evening, Monkey and Duhdee came to pick me up at work. Monkey gives me the greatest greetings now, he asks for hugs and asks if I’m OK1 and then he asks for my phone or iPad2. After we got through the hugging through the window and handing over the phone bit, I jumped in and we headed home. We were listening to our “Compromise Station” on Pandora3 when it cut off. What the f Oy Vey!

Duhdee looked down at his phone and realized Monkey was calling…from the backseat. I answered the phone. Every other time Monkey has accidentally reached a person he has hung up as fast as possible but tonight…he talked to me!!! I asked him questions and he ANSWERED THEM APPROPRIATELY!!!! We talked for a good minute before he hung up. Then he asked to call someone else!

I asked him if he wanted to talk to Auntie and he was SO excited. I called Auntie’s cell phone and got no answer. Dang. I called Grammy’s cell phone because Auntie was likely nearby and got voicemail. Srsly?? So I called the house phone, if they didn’t have their cells on it was because they were home and I got…a busy signal. Are you fu Oy VEY! I’m sitting there holding my cell phone while Monkey bounces in the back seat asking for the phone and giggling every time I dial. I just kept saying, “Oh, no answer buddy! I’ll try ____ next, OK?” “OK!” So we tried Grammy W. and got voicemail.

(&)^%)^%&%*^%!@*#(~&)^%&%*^%!@*#(~%*^%!)^%&%*^%!@*#(~@*#(~!!!! OY VEY!

Finally, I tried Auntie’s house phone one more time with my fingers crossed and GOT AUNTIE ON THE PHONE. HALLELUJAH! I told Auntie I had a very excited Monkey who wanted to talk to her and passed the phone to him. He said “Hewwo!” and hung. up. the. phone. DUDE?!

I called Auntie back on Duhdee’s phone because Monkey was NOT giving mine up and he’d had enough of the talking business. Fine. Hey, at least I got to chat with my parents and sister (cause they put me on speakerphone) and they got to hear Monkey lose his shiznit4 when we drove through puddles on the way home, which was fun.

  1. Which is really my cue to ask him if he is OK. Most of the time he is and just says OK and runs off. Sometimes he is not and he needs a hug and some back patting, which he nicely reciprocates, before he runs off. []
  2. He is an iGeek too, hee! []
  3. Basically all music Duhdee listens too that does not make my ears bleed. []
  4. In a happy way! []

He’s got this new thing…

so, this child has come up with some strange amusements over the years but this latest one takes the cake.

Monkey is, and I can’t believe I’m actually posting about this, playing with toys. T.O.Y.S. Toys. Not just toy versions of things he sees us or other people use (binoculars, power tools, etc.) but toys that are nothing more than…playthings. Child’s playthings…toys. That he uses as…toys, not as props in a script he has stored in his brain from some TV show/YouTube video/commercial.

So a good chunk of the population is going to look at us when we say this and smile nervously while looking for the nearest exit. We look a little wild-eyed intense in our amazement so it is a little freaky…but you…YOU know what I’m talking about! You know this is big time cool.

It started with Buzz, Buzz Lightyear. Monkey was watching a YouTube clip and he ran, grabbed Buzz, Buzz Lightyear from his room and then sat down with him to watch YouTube. It was so cute1.

Then, he just waltzed into our living room and asked for help getting (Lightening) McQueen out of Mack2 like it wasn’t the first time he’d looked at the flipping thing since he opened it at Christmas3.

His latest foray into the fabulous world of toys was with his remote control car. This car is hecka cool, when it¬† runs into something it flips over and keeps going…it’s a reversible car! Monkey started out terrified of it, then he was mildly concerned if something happened to disturb the layer of dust on it and then he simply forgot it existed…until this afternoon. This afternoon, he grabbed it from the shelf it had been parked on for two years, put it on the floor and proceeded to drive it around his room. When he caught Duhdee watching him he stuck his head under his bed and played with it under there.

So…my kid is playing with toys in a completely unscripted and appropriate way and we are *so* psyched. Yep, so excited that I just flashed back two decades…it’s like my brain is collapsing under the sheer AWESOMENESS of it all…or something…

All kidding aside…this is one of those little victories4 that make me feel like my heart is going to explode from the force of the love and pride I have for this boy.

  1. Of course, we are not allowed to let him know it was cute so we stood in the hall, peeking in at him one in a while, and looking at each other with eyes like saucers while we mouthed OHMYF*CKINGGOD! HEISSOCUTE! I KNOW! SOF*CKINGCUTE! at each other. []
  2. OK, that sounds a little dirty, eh? Ha. Never mind, growing up now. []
  3. Not that I am bitter or anything, but this was one of those toys that I tried finding locally and then ended up paying wayyyy to much for on Amazon because they figured out that people (ME, MOTHERHUMPERS) were googling madly and looking for this toy so they jacked the price up based on whatever crooked algorithm they use which resulted in people (ME, AGAIN, DIPWADS) paying twice MSRP. ZOMFG, Amazon, really?? OK, fine, maybe I am a little bitter. Still. []
  4. That most parents will not ever even take notice of because, of course, kids play with toys, genius. []

I am so with it.

Today is September 21 and I just figured out why I’ve been in a rotten, low down, hide under the covers mood for the last two weeks. No one has ever accused me of being overly bright.

I don’t want to remember that day. I tried really hard to avoid all the anniversary coverage but it was not possible. I really just want to pretend it, and the 6 months following, never happened. It was before Monkey, before Duhdee…it has nothing to do with my life anymore. I’m hoping that by acknowledging that the shock and fear and stress that sent me into a downward spiral, which ultimately left me hospitalized, were real…will let me crawl back out of this hole.

It’s like…I am this great big ball of AWESOME1 but inside is still this teeny, dark seed of misery. I keep hoping will just die if I don’t feed it. So I take my happy pills and I turn my attention to other, much more important stuff and the AWESOME rules. Then I think, “Surely it’s gone now!” and peek.

Dude, I’m that idiot in horror movies who just HAS to open the basement door because it’s been quiet for SO long, surely the ax murderer is gone! D’oh! *sigh*

For those of you who are unaware…depression, it sucks donkey butt. That’s all.

**And I wasn’t going to publish this because *WAHHHH!* but also because it’s still hard to admit…if it’s hard to admit it needs to be dragged out into the light because…feeling ashamed of being depressed is more depressing than just being depressed.**

  1. the most humble sort awesome, of course. []

A little giggle.

I’m putting Monkey to bed, yes, I took a break midway to blog this…is that odd?

**Fine, here’s why…I got home from work, late. Monkey was crying about something, nothing he could explain or we could puzzle out. I waited until he had calmed down before telling him it was bedtime and his whole face melted, again. I can’t put him to bed sad. Can’t/Won’t potato/potahto. So, I am letting him play Angry Birds on my phone for 5 minutes in bed. So sue me. Or pat me on the back and tell me how awesome I am. I do have a preference but I’ll let you make up your own minds. *AHEM* **

Back to the giggle…I put his PJs on him, it’s a pair I bought him in July. The first set I brought home had a hole in the seam on the leg that we discovered at bedtime. He wanted to wear them anyway so I let him. Then the next day I returned them to the store. The second set had no holes anywhere…OK they had holes for his head and arms and legs but other than that…no wayward holes. Except, Monkey still remembers that there was a hole in the seam. No matter how many times I have put these PJs on him and he has discovered, “Hey, no hole!” he still checks. Every time.

Tonight he checked again, he did it with such force he nearly knocked his chin with his butt…I love how much of a contortionist he is with is loosey, goosey fragile x ligaments…and I *hangs head in shame* laughed. So…Monkey did it several more times trying to make me laugh. Then, mid-contort, he farted. Just a little pft. I swear I DID NOT LAUGH. I didn’t even grin, at ALL. At least not until he tried it one more time and this time added the fart sound effect vocally. Then I laughed…a lot. Which made him happily proclaim, PEE EWWW!

Merry Christmas!

It’s not secret that Monkey doesn’t exactly excel at morning transitions to school. We hardly ever have mornings when he holds onto me for dear life until we manage to pry him off and run like hell leave him in the loving arms of his teacher…but they’re are still iffy enough that when we have a good one it feels like Christmas.

It was Christmas here today, on a Monday no less!

Lately Monkey has been asking for “two monies?” on the way to school. We keep a fair amount of change in the car for parking meters and random panhandlers, so I started handing him two quarters. He’d say, “TWO of ’em!” and then ask for “two more monies?” This goes on for just about the entire ride. I make him count how many he has in between to slow him down otherwise we’d have no monies left! It’s been a win-win since he loves money (we’re working on “coins” he can say it but he prefers “monies” lol) and we love a happy Monkey. I even took some into the classroom one day last week and bribed him with it. “When you walk into the classroom, I have 3 more monies!” It worked.

This morning, I realized that we’re going to be broke before too long so I switched to dimes. I expected him to pass them back but it seems that if the coins are all the same, he doesn’t mind what denomination they are. Woot!

About half way to school, when Monkey asked for more monies I told him I would give him TWO MORE when he walked into the classroom. He asked two more times and both times I said, “You can have two more when you walk into the….” and he would fill in “classroom.”¬† Awesome.

When we got to school, we had to double-park again, which Monkey hates. Then Money did something really stupid, she walked in through a different gate. Monkey was having none of that nonsense and he guided Duhdee to the main gate we typically use. As I was walking to join them I was beating myself up a bit over the double-parking which I knew would bother him and then changing the entrance location. On a Monday. Stupid, stupid. I wasn’t terribly hopeful for the rest of the drop off but he totally rocked it!

He grabbed my hand as soon as I was within reach and he held onto it so tightly, I knew he was making sure I stayed on target1. Then we strolled on into his class! He took one small break at the trophy cabinet just outside the classroom door but as soon as I reminded him of the monies he walked in with a big smile on his face.

Yay Monkey!

I told Duhdee that a drop off like that is totally worth the $1.20 in dimes. We talked to the teacher last week about bringing in a bank of some sort so they can use it as a math lesson (and a savings lesson since he gets to keep the money, the teacher holds on to it during the day.)

I wish I could find a bank that gave receipts. He is his father’s son, he demands receipts everywhere we go…even at the yard sale I took him to a couple weeks ago, lol. He’d be in HEAVEN if he got one every morning, lol.

 

  1. Some day he may realize that this is an exercise in futility, Money is not a stay on target kind of girl. Anyway. []

Spamalicious!

I am so easily amused…instead of just deleting the gajillion spam comments I get here I like to skim through them once in awhile. Some of them are so amusing I had to share…

Such Praise!

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  • That can be the best stuff on the internet.
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Uh…I think it’s supposed to be praise….

  • I have not checked in here for some time as I thought it was getting boring, but the last several posts are good quality so I guess I will add you back to my daily bloglist.
  • A thoughtful insight and ideas I will use on my blog. You‚Äôve obviously spent a lot of time on this. Thank you! (So you‚Äôre ripping me off. Thanks?)
  • I cant believe youre not more popular because you definitely have the gift. (You know, this¬†has been an issue all my life and I haven’t figured it out either!)
  • Wow that was really interesting, although i would add few more deeper thoughts (If only I had some…)
  • I was wondering if you ever considered changing the structure of your blog? Its very well written; I love what youve got to say. But maybe you could a little more in the way of content so people could connect with it better. Youve got an awful lot of text for only having one or two images. Maybe you could space it out better?

Lest you think all the spammers love me…

  • I do not understand you, man (Definitely not the first time I’ve heard this complaint.)
  • I have seen this post on another website.
  • The very core of your writing whilst sounding reasonable initially, did not really work very well with me after some time. Somewhere throughout the paragraphs you were able to make me a believer but just for a while. I nevertheless have a problem with your leaps in logic and you might do well to help fill in all those gaps. When you can accomplish that, I would surely be amazed. (No one would be as amazed as I, if I managed that.)

Ummmm…no?

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Errr…what?

  • I have only been involved in the blogging sphere for a very short time, and I must say, I find the comments part of increasing frustration when just spammy trash is entered. (Me too, dude, me too.)
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I wasn’t sure where to put this one exactly…praise, no or what?

  • F*ckin‚Äô remarkable issues here. I am very satisfied to peer your article. Thank you a lot and i‚Äôm looking ahead to touch you. Will you please drop me a e-mail?

How is this for a wrench in the works?

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?

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 biggie1. 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 minutes2.
  5. Filling out behavioral questionnaires3.
  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.

  1. This is where Duhdee and I stumbled. []
  2. 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. []
  3. Of course, do any of us ever go to any appointment and NOT have to do this?? []