Minocycline Update - Week 1

As of now, we have completed our first week on the minocycline.  It has been an interesting week because I've been paying close attention to anything abnormal with Ayden and of course our Michigan weather took this week to drop the temperature back down after being warm for a week.  Between the temp change and the high pollen counts allergies have been out of control.

I've been logging observations each day to see if there happens to be any patterns of change with Ayden over the course of the week and am not surprised to see a few.  I can't say these are the product of the minocycline as of yet, but they are [mostly] good changes nonetheless.

1)  Ayden has started babbling with different sounds than normal and more often.  No new words, just different sounds.

2)  I've noticed a few of his stim behaviors becoming more prevalent such as humming and rocking; however, I've also noticed less flapping.  Ayden's stims tend to be worse when he is tired and doesn't feel well - so that may be the cause of the increased humming and rocking.  As for the decreased flapping, well, that's normally for extreme happy/excited which when you aren't feeling well tends to be less anyhow.  I may not have even noticed had it not been for being extra observant.  Which brings me to my third point...

3)  He's been extra tired this week.  Again, may just be the allergies or adjusting to the medication.  Something to watch at the very least.

4)  Communication with our PECS system has been amazing this week.  He's really been trying with his cards to communicate what he wants and doing a fantastic job of it.  Again, this could just be the result of the fact we've been pushing him to use it more but he's using cards differently as well to make his sentences.  Things like bringing me the cards for his shoes and sandles with the yes and no cards to show me which ones he would like to wear.

5)  The last thing I've noticed is that Ayden is not fixating on certain "favorite" things as much as the week has progressed. The iPad being one of those things.  Usually I will need to stop him when his time is up, but he has been bringing it to me lately and saying he is all done.  It's been that way with most things where he is actually moving between activities more often.

I do want to again emphasize that there is a good chance these changes are not the medication and more a result of my being extra observant this week.  I plan to keep logging to see if there are any patterns after our first month before I'm ready to say it is or isn't helping him.  I sincerely hope we do see the changes so many others are noticing with the minocycline, but as each person is different you just never can be sure.  Next week should also bring about an odd mix of changes with Spring Break and our vacation to my parents house for Easter (a few of those days without Daddy around).

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The Hassles of Therapy

We have been attempting for almost a year now to get Ayden some occupational and speech therapy outside of the school setting.  To say it hasn't been going well may be a mild understatement.

Speech Therapy
After looking all over our area for a speech therapist that took insurance, we finally found one at Sparrow Pediatric Rehabilitation.  Then called and found the waiting list was six months.  SIX MONTHS.  We were lucky enough to get him in a bit early though, and last September had (yet another) speech evaluation done.  Every time we do this process we have to have another evaluation done.  Mind you, it's the exact same evaluation every.single.time.  It's difficult on Ayden, even more difficult on us and frankly it's a waste of my time when they could just look at the results of the previous one done.  But I digress.  We completed the evaluation and had to wait another 4 weeks for the "analysis" from the SLP who then sent her recommendations for therapy to the insurance company and to us.  I did not expect any difficulties as we have up to 36 visits per calendar year covered for speech therapy in our insurance plan.  In yet another setback though...the claim was denied.  In true Blue Care Network of MI fashion, speech problems that are a result of a developmental problem such as Autism or Fragile X are listed as a specific exception in the "fine print" of our insurance policy. I shouldn't have been surprised, but I was.  We looked into countless other methods, but it simply comes down to the fact that we either make too much money or Ayden isn't bad enough to warrant farther help with medical expenses.  To pay out of pocket for therapy would cost us about $300-$400 for one hour - and they were recommending 2 sessions a week.  So we're at a dead end with this for now.  Thankfully, he is still receiving speech therapy in his ECSE classroom and we are doing all that we can at home.

Occupational Therapy
As with Speech, we were placed on a waiting list for Occupational Therapy too.  We finally received the call in January to come in for an evaluation, and then Ayden ended up being sick the day of his appointment.  The scheduling coordinator and I played phone tag for a while, then Emma was born, and finally we have a new date set for his OT evaluation.  The good news about this one is that we are already approved for at least 6 visits from the insurance company. At that time, they (the insurance company) re-evaluates, but I'll take the six hours for now.  Our evaluation is setup for April.  I am guessing therapy will begin sometime in May or June, which is perfect timing for Ayden being out of school.

Funny how just typing this up and talking about attempting to get Ayden the help he needs is making my head hurt.  I'm amazed at how even though there is a medical necessity for him, our insurance company can get away with not just denying service on a policy but EXCLUDING service based on a disability.  I think I picked a fantastic time for this post though, as Michigan has bills being voted on very soon (maybe even today) to include things like occupational, speech, and physical therapy into insurance plans for those with Autism.  Makes me feel a lot better knowing that the ball is rolling for change!

To read about the bills and autism insurance reform in Michigan, please visit http://www.michigan.gov/autism

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Light It Up Blue

Fragile X is the most common known genetic cause of Autism.  Approximately 15-33% of all children with FXS have Autism.  (and around 2-6% of children with Autism are diagnosed with FXS as well).

One week from today (Monday, April 2) landmarks, homes, and businesses across the world will be turning their lights blue in support of World Autism Awareness Day.  This is the third year Autism Speaks has run Light It Up Blue which was started to shine a light on Autism and help to raise awareness.

You can learn more about Light It Up Blue here as well as see pictures of landmarks across the world that participated in past years.

If you and/or your family is doing something to celebrate Light It Up Blue, please send me the pictures.  I'd love to do a gallery next week of pictures and see how you are raising awareness.  I know we'll be wearing blue here and hopefully getting our lights turned blue if I can find some bulbs!

Read more about the link between Fragile X and Autism at the National Fragile X Foundation website.

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Minocycline - Day 0

So here we are...medication in hand!

Tomorrow we start Ayden on minocycline.  Getting the right form/dose of the medication is a bit of work, but I think once I'm used to it, it won't be so bad.  We currently have him on gel capsules, but since they don't make them in a low enough dose we have to split them open into water and give him the doses that way.  We're hoping to find a pharmacy that can fill a script for 50mg tablets even if we have to order them.  I know Ayden will take that so much better anyhow.

Today, we had to take him in for some blood work before beginning the medication.  Blood draws and Ayden are two things that just should not be put together for sure.  Needless to say, it was recommended and we felt it in his best interests before starting the mino.  Turned out, he did much better than expected though!  He still had to be held down, but really that was the part he hated the most.  Daddy was the one who had the honors this time, and said Ayden didn't even flinch when they poked him.  He was a bit clingy after wards, but a trip to visit the fish at Meijer followed by lunch at McDonalds definitely helped him out.

The next week or so should be interesting as we watch for any adverse reactions.  I'm stressing a little about it, but only because he can't tell us if something is wrong so we'll have to watch him pretty closely.  I think it's a mom thing!  I can't wait to track any progress he makes, but am trying not to get my hopes up knowing it doesn't work for every FX kiddo.  I'll keep you updated as we progress!

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Minocycline Update

I posted before about the minocycline trial running at the UC Davis Mind Institute and how we had been approved for the first leg of clinical trials.  The timing ended up not working out with the baby, so the plan was to call after Emma was born to see where they were with the trial.  When I fianlly made the call this past week, I found out that unfortunately the funding for the minocycline trial was not renewed.  Thankfully, the staff at the FX Clinic at MIND is amazing, and they sent us information to give our pediatrician as well as dosing information to try to get him on it ourselves.  They even said they would speak with our pediatrician if she had any questions.

So...now we are awaiting word from our pediatrician about whether or not they will write the prescription for us.  I have to say I'm a bit anxious and honestly will probably look for another pediatrician for him should ours decide not to do as we request.  We certainly are not a family that likes to use medications unless beneficial, and I have done my research on this.  We wouldn't be asking if we weren't sure. I'll keep updating as we hear more, but hopefully we'll get the okay and start seeing some positive benefits of the minocycline soon.

Update:  Between writing and publishing this post, we did get the okay from the pediatrician to start on minocycline.  We are still awaiting the actual prescription, but I'm so excited it should be soon.  She really took time to look up benefits and even suggested we do a B6 supplement to help counter some of the side affects as well.  We're going to make sure we're tracking progress, and are so hopeful we may start seeing some benefits soon.

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