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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Language Update

We have been seeing some slight improvements in language for Ayden recently.  I always hesitate to say anything or get excited about him saying new words because he often loses them after a short amount of time - but here it is anyhow!  Of course each time I hope it will be different and the words will stick around, but I have yet to see that happen.

This time though..well, it feels different.

We worked a lot on getting Ayden to say "mama" since he was making the M sounds so well.  Work like that is always a lot of tears, usually for both of us.  He doesn't like it and I don't like to see him so sad either.  We persevere though, and instead of just saying words randomly this time, Ayden is able to actually repeat the words back to us on command.

Why is this part so important?  Due to the FXS, Ayden has what is called Developmental Apraxia of Speech (DAS).  What this means is that the area of his brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is not fully developed or functional.  This makes retrieving the motor plan for saying a word difficult.  With DAS, frequently a child may be able to produce a sound or word at one time and not be able to say it again when he wants.

Back to Ayden then, he is now able to repeat about 4 or 5 words after me when I ask him, and has another 2-3 words/phrases that he is saying at the correct time, but is unable to reproduce when asked.  For example, he will often say "all done" as he signs it, but when I ask him to say "all done" he is unable to say it.  I'm finding as he is able to speak words on command, following the same beginning sounds seems to be easiest for him when I request a new word.  So we will go over the words he knows, then begin trying to get him to repeat words with similar sounds.  "Mama" "monkey" "man" etc... "ball" "bubble" "bus".  I find he can come close to other sounds when given a word that starts with a sound he is good at.  We'll keep working with him and see where it leads.

I sincerely hope this language jump for him continues and is the start of a new chapter for him.  IEP time is quickly approaching and we will be making a decision on whether to send Ayden to kindergarten or hold him in the ECSE classroom for another year.  It sure would be nice to have a little bit of language under his belt before we make that decision this May.

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Pretend Play

Pretend play is something that is a very large struggle for Ayden. Not because he can't do it, but he just doesn't want to.  As I've mentioned before, we have a difficult time finding ways to motivate Ayden to do things and we have yet to find anything that will motivate him to "pretend".   Until recently.

A few months back, Grandma brought a gift for the boys.  A cute little rabbit puppet.  Ayden was not impressed, but Issac fell in love instantly and claimed it for himself.  He named the rabbit Frank.  Since Frank joined our family, we have been talking to him and playing with him.  Frank does everything with Issac from getting up in the morning to giving mom and dad kisses, to going on car rides.   Frank even talked to Ayden quite a bit and waved hi to him all the time, but Ayden just backed away, vocalizing his disapproval of this communication and wouldn't go near him.  He was almost afraid to touch him even and certainly was not okay with Frank talking to or waving at him..  But as the days went on, Ayden started getting braver and touching Frank quickly before running away, or picking him up by two fingers to move him.  It got to the point  where Ayden finally was okay with Frank.

And then it happened.  It was the day Emma came home from the hospital.  Mr Awesome was getting the boys ready for bed when Ayden picked up Frank and made Frank wave at Daddy.  He then burst into joyous laughter as Daddy waved back.  And did it again.  And again.  It was the first time we saw him not only pretending, but also initiating the play himself.

Since then, he has begun to add more types of pretending into his play.  For a little boy who prefers to spin toys and play alone it really is something big.  Add to that it was done without him being pushed, it's just an amazing milestone for him to reach.

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Meeting Baby Sister

As I mentioned in my earlier blog post, we welcomed our baby girl last month.  In the time leading up to my due date, I had been slowly working with both of the boys trying to help them understand they would have a new baby around the house soon.  I sat with both of them together as I don't get feedback from Ayden and was hoping Issac would help a little with that.

We first started by just talking about the baby in mom's tummy.  We had a name early, which did help.  Issac very quickly began to refer to her as "Baby Emma".  He wanted to kiss her and at times even talked to her and told her about what he was doing.  Ayden seemed very indifferent, as is fairly standard, but you could see he was paying attention.

As my due date approached, I began to explain that mommy was going to go to the hospital, and while I was there Nana would be staying with them.  Then, after mommy came home Baby Emma would be out of my tummy and they could hold her.  We repeated this often, and I asked Issac questions about what was happening so I knew he was taking the information in.

When the time finally came for me to go to the hospital, it really couldn't have gone more smoothly.  We had a few hours to prepare which helped out a lot.  The boys didn't even blink as Nana came and mom and dad left.

We decided ahead of time we wanted the boys to come to the hospital to meet their sister.  Mr Awesome went home and picked them up and brought them there.  They were very familiar with the hospital as we'd been there a few times with problems.  I expected Issac to be extremely excited and interested in baby girl, and Ayden to just be curious and then done quickly.  He'd never given me reason to think otherwise.   You can imagine my surprise when the came into the room and Ayden ran to see mommy and baby!  It was the beginning of a very emotional visit with my sweet little boys.  Ayden was so attentive and curious right from the start.  He knew exactly what was going on and was so excited!  I don't think he removed his eyes from his sister for the first 10 minutes they were there until he was allowed to hold her.  We put Ayden on my lap, then I  helped him hold Emma.   He just looked at her, gently touched her head, and kissed her.  It was one of the sweetest moments I've ever experienced.  Everyone talks about how little girls will wrap daddy around their fingers, but she had her biggest brother at first sight.  Both mom and dad were fighting back tears as our boys were introduced to baby girl.

This was without a doubt one of the happiest days of my life.

A month later, the boys are still wonderful with baby girl.  Both of them are learning to put her pacifier back in when she cries and pat her on the back when she is upset.  Ayden thinks it's funny when she cries and usually laughs, but he always tries to comfort her.  They both check on her first then when they get up in the morning too.  Both of them love to hold her as well.  Ayden even learned how to ask me to hold her, which was another huge step for him - and maybe for me because I understood him!  He was so excited!

We're all still in the process of adjusting, but it is going so much better than I ever could have imagined.  I love seeing them all together and interacting.  It's new and exciting, even though we've done the newborn phase a few times.  As of now, we haven't really seen any issues either.  I expected some behavioral issues with both kids, but they have been exceptional with Ayden even making strides in other areas and actually advancing.  All-in-all...life is pretty amazing.

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And Baby Girl Makes Three

We had the pleasure of welcoming our third (and final) baby last month.  Things are finally settling down, and everyone is getting used to having a newborn around again.  Baby sister is doing well, and both older brothers are very much in love.  I have some wonderful stories about the boys and how they are handling having Sissy around, but for now enjoy some pictures.

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One Year

It's been a year since we had our official diagnosis of Fragile X for Ayden and what a year it has been!  I was just reading through my first post about how Ayden has been developing, and even though I knew he had made large strides it's amazing to see how I felt a year ago compared to how I feel now.  I am not going to dwell much on sadness or feelings from that day a year ago - because we continue to look forward.  Each day is a new day, each task is a struggle in a different way.  Looking back does no good but to stir up feelings of guilt and anxiety for me.  That just isn't how I want to spend these years, they go so quickly.  So...let me go over how Ayden is doing!

Screaming - A year ago, we had minor screaming fits.  Now, I see even less.  We have a decent amount of temper tantrums, but we've found those to mostly be the normal 4.5 year old "I'm not getting what I want" tantrums, minus words of course.  A huge break though for us occurred when we began implementing YES and NO cards for Ayden (via PECS).  He understands these well, so giving a NO card to him and having him throw a tantrum is much easier for us to know how to handle.  It's the differentiation between knowing he's not frustrated we don't understand him and that he is angry because we said no.  Before those cards, it was a guessing game and as we continues to work on dealing with the behavior of the tantrums they continue to get much better.

Communication - As I mentioned in my first post, communication goes hand in hand with screaming/whining/tantrum issues we have with Ayden.  We introduced Ayden to PECS at home over this past year and he is successfully communicating wants/needs via sentences right now - and not just to mom and dad! Just this past weekend, he used his book to request something from his Aunt.  It was such a proud mommy moment!!  We still don't use PECS exclusively for Ayden's communication, but instead use it in combination with some signs and pointing when we don't have a card available for what he wants.  Ayden's understanding of communicating though is so much better.  He will figure out a way to tell us what he wants most of the time, even by stringing two cards together that really shouldn't go together, but in a way that we understand them.  He really has made some fantastic strides that keep both him and us infinitely happier.  As of today, he can also say some words "on command" which is also a very big deal for us.  We've seen words come and go, but never was he able to say them when requested or in response to questions.  We're hoping this time it sticks around.

Food - we still struggle with Ayden on mouth stuffing a lot.  I've tried a decent amount of the "tricks" for FX kids with this issue to no avail.  Same thing with silverware - with the exception being he CAN use silverware now (though not perfect) but refuses to most of the time.  We're hoping that with the use of silverware the mouth stuffing becomes much less prevalent.  He is also beginning to explore even more foods, and eating like a growing boy.  He certainly can pack food away!!

Sensory - We have slowly worked on sensory issues over the past year, and it is helping!  He still has pauses at  walking on different surfaces, but he actually will do it.  We also have successfully use a few exercises to calm him down with the exercise ball as well as the use of a bean bag chair.  It's not perfect, but it certainly is manageable.  Most of the time, he will at least attempt to do what we ask him now without much prodding (or bribery!).  In turn, he's found a decent amount of things he likes doing.

Anxiety - While we've never had terrible anxiety issues with Ayden, the situations where his anxiety runs high have become SO much better!!  He now will usually walk into large crowds, attempt things that are outside of his comfort zone etc without breaking down.  I can't even remember the last time he totally lost it because of his anxiety at new people/situations.  He also will deal with situations differently.  Instead of screaming, he'll quite often just shake his head NO and turn and walk away.  It's pretty amazing to be around him in those situations because I remember how hard certain things were for him and how he dealt with it.

Social - Here's a new category for this year's "round-up".  I don't even know where to begin explaining where Ayden was socially last year other then to say, socially he basically did no interaction with others.  Mom and Dad have always been a different story..but he was perfectly content to sit in a corner and spin a toy rather than play with other kids.  This is easily the area Ayden has made the most strides in this year.  He now plays with other people (kids and adults) and attempts to interact as well.  He will enter a room and give hugs to familiar people, try to get them to play with him, and has even begun initiating peek-a-boo just recently.  Much to mom and dad's excitement, he also has started participating / initiating some pretend play.  He makes stuffed animals wave/talk which really is just AMAZING.

So..that's my year in review for Ayden.  We have some large decisions coming up in the next few months that I think will really determine the course for him as far as schooling goes for a little while at least.  Essentially, the decision of sending him to kindergarten or holding him in the ECSE classroom - but the decision is much more complicated then that.   I'm very much looking forward to another year of progress and just watching him grow with his little brother and new baby sister.  FX is definitely a part of our family, but it is in no way carving our path for us.  We continue to carve our own path, and do what we can to make life the best we can for Ayden as well as his little brother and sister.

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