What a blessing!

My son has been waking up when PapaBets is just leaving for work.  I think this might be because of the medication, or the time change, or maybe both.  And not just a little early – he’s been waking up at 6:30-ish.  That is at least 3 hours earlier than he usually wakes up!  But, in those hours before anyone in the house is up and at em, he has been productive!  One morning he made a sign for his “radio station” on my computer (more about that in a future blog).  He printed it out, and taped it up all on his own.  But, this morning I was in for a surprise!

I woke up to M telling me that he was wide awake and couldn’t sleep anymore.  I said fine.  Then went back to dozing.  I am NOT a morning person, and it takes me a while to finally get up.  Just a few minutes later, I heard dishes clattering.  I decided that as long as there was peace, and he wasn’t bothering anyone, I’d let it be.  So, a few minutes later he comes in and tells me he is planning a surprise and I wasn’t allowed out of my room.  Fine.  Then, a few minutes later, he comes in and tells me, “Mom, I’ve planned a big surprise for you.  I loaded the dishwasher, and ran it.  I put in just the right amount of soap and everything.”

He did a fantastic job!  It was loaded perfectly.  He was SO proud of himself.  He got his reward, two smiley faces on his $1 chart (he needs 10 to earn $1).  I am so proud of my little blessing!  This week has been one of the roughest for him, impulse wise.  He needed to have an accomplishment like this.  And now, because he was up early, he’s napping.  Sweet boy.

Back to the Dr

We went back to the Neurologist last night.  She said that she sees marked improvement over the last time.  She also said that we probably haven’t noticed it as much, because we are so close to him.  She’s right.  I have noticed improvement, he is learning easier, he is more agreeable (still not VERY agreeable, just more), he is more social, and he isn’t as impulsive as he was when we saw her almost 5 months ago.  So, progress.  I actually realized during the appointment that the last time we saw her he was in a waxing phase.  So, doing the math, he should have had a waning phase, and another waxing phase since we’ve seen her.  I have seen M’s tics pretty much remain the same.  Sure, some days are worse than others, but we haven’t had a true waxing phase.  And, I don’t think we want to completely get rid of his tics.  That is kind of what makes him him.  I just want to relieve whatever symptoms are getting in the way of his learning.  The neurologist thinks that we may have to increase his dose, but suggested we wait another week before we decide.  She left it up to me, and said that if the dose is too high we can always bring it back down.

I told her that now that he is taking the melatonin, M is asleep within 5 minutes of going to bed (it used to take him 1-2 hours, including distraction such as music or watching videos on his MP3 player).  But, he’s still waking at night.  I am trying a behavior chart to see if that worked, since it worked when he was 3, but so far it hasn’t worked yet.  She suggested giving him a higher dose of the melatonin.  I tried that last night, and no change.  She also said that over time, his body may develop a resistance to the melatonin.  If that happens, we would take him off for a month to “reset” his system, then put him back on.  We discussed his night time anxiety (and general anxiety), and that it was better with the Clonidine, but now that we’ve switched, seems to be back.  She agreed with me that it’s not the meds that are causing this, but the clonidine probably sedated him enough to help.  She said we may have to add an anti-anxiety at night, if his nightmares and anxiety continue.  She said that usually the dose she uses with kids like M are extremely low, and usually the only side effect is sedation (which is what we want at night).

She encouraged me to get him in as many social situations as possible, because of his social delays and inappropriate behavior.  I told her that he is in social situations with other kids at least 4 times a week, usually more.  I think the great thing about homeschooling is that we don’t have to throw our kids in a pile with other kids, and hope that they make friends.  I am able to see EVERY interaction he has, and determine if there are other kids that would get along with him.  It kind of feels like I am fighting an uphill battle, since he does have social issues that border on Asperger’s, but am also homeschooling.  Both are stigmatized in our society.  People think that just because we keep them home, they are isolated, and not able to learn from “socialization.”  When, in fact, my kids are around other kids of varying ages, as well as adults much of the time.  G gets along better with kids who are younger than her, and teenagers.  She’s been this way since she was a baby.

So, all in all a great day.  We will go back in 6 months for follow up.  That sounds like a long time, but it has been 5 months since his diagnosis.  I am reminded again about the vast difference in medical providers.  It seems we have seen extremes, extremely bad and, although she’s just a Fellow, extremely good.  I am sad that she’s just a Fellow, because that means she will be leaving eventually to be a “real” doctor.  So, that leaves me uncertain whether the next Fellow we get will be as good as she is.  But, that’s not happening anytime soon, and when it does it’s in the Lord’s hands.

New meds

After talking to M’s neurologist, we decided that since sleep wasn’t as much of an issue now that the melatonin is getting him to sleep, we would try a different med for M.  The clonidine just wasn’t doing enough, and though we didn’t try raising the dose, M was complaining about being carsick and getting dizzy in the car.  So, we are now trying Tenex.  So far, I don’t see much of a difference.  Maybe a little.  His impulsivity and hyperactivity seem to be better, just a little.  In my opinion, this is the hardest symptom he has to deal with.  M is no longer complaining about every single bump in the road (literally, when we’re driving), BUT he said his bad dreams are coming back.  He also seems more tired during the day.  His sister has been fighting something, so I am thinking it is either adjustment or the cold or a little of both.  I am also noticing each night his tics seem worse.  He’s supposed to take the Tenex morning and at dinner time, but I am seeing about a 2 hour period when he becomes extremely impulsive, ticcing, and just aggravating everyone.  We go back to the neurologist tomorrow, so I will talk to her about maybe giving his second dose earlier.  I asked M if he’s noticing anything with the new med, and he said “Yes, I think it’s working, but I’m having bad dreams.”  I explained to him that the bad dreams/night time anxiety must have been helped by the clonidine, so talk to the dr about it Thursday.

M has started a few new tics this time around.  He’s now whimpering, very quietly, humming, and screaming VERY high pitched.  When he whimpers, it is SO hard for me to not ask what’s wrong.  I know it’s a tic, but because it sounds like what most kids do when they are in pain, subconsciously it makes me think, “what’s the matter?”  But, he doesn’t even know he’s doing it.  He’s been doing this one for a few weeks, but now it is starting to get in the way of his speaking, almost like he’s stuttering.  The screaming actually sounds like one of those industrial fire alarms.  You know, the ones designed to get everyone out of a building as fast as humanly possible.  And he repeats this, over and over.  And our house is tiny, with tile floors.  It can get quite loud.  He has also started doing a complex tic, just a few times, where he jumps and then crouches down almost in a “ready” position, ever so briefly.  It is pretty random when he does it, and never more than once, but I’m keeping my eye on it.  I haven’t mentioned anything to him about these new ones, so I don’t know if he notices them or not.  Even if he does, I think it’s better to not mention it so he won’t feel self-conscious.

Background, history, and a Mom’s perspective

I have felt like M. was “off” ever since he was born, but it started becoming obvious around 14 months old, and even more obvious around 2 ½ or 3 years old.  He was always busier than the other kids, moodier than the other kids, didn’t sleep as much, or as easily, as the other kids.  Everyone always told me that he was just “all boy,” implying that it was some variation of normal or something.  But I knew that something was different.  He didn’t make friends, he got frustrated easily, and he was always at least 3 feet up in the air (literally).  He also had these “bad habits,” starting around 3 years old, like grinding his teeth, biting the corners of walls, walking on the tops of his toes, that just didn’t seem “normal.”  I finally started replying, “He’s 5 boys in one sounds more like it.”  Nobody understood.  I didn’t understand.  I was tired, drained, physically and emotionally.  Everyone just told me that, “you need to be more consistent,” “he just needs more discipline,” “he just wants attention,” “you need to get him into a routine.”  Loving as it was, it didn’t help!  It only caused me to feel like I was somehow causing all of this in him, or if not causing it, then at the very least, failing to stop it.  I know it was unintended, but it made me feel inadequate.  If only I was a better mother, all these problems would be solved.  Because, everyone I knew who seemed like great mothers weren’t dealing with these problems.  Their kids weren’t perfect, but they were FAR easier than my son!

Last October, M. was given the formal diagnosis of Tourette Syndrome by a pediatric Neurologist at UCLA.  She said that she also sees anxiety disorder, ADHD, and some signs that OCD may emerge in time. You can read more about it and my reaction in previous posts. The more I read about Tourette Syndrome, and communicate with other mothers whose children also have Tourette Syndrome, the more I read and hear about my son!  It is as if they are talking just about him.  ALL of the things I began noticing since he was 14 months old make sense.  It is a relief!  The answers I have been searching for for 6 YEARS are all finally falling into place.  M.’s behaviors were finally starting to make sense!

I have been struggling with coming to terms with it, dealing a lot with God, and asking Him to lead me through it. God has reminded me, daily, of His love and commands.  He reminds me often the verse, “Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16-18.  I am so thankful that God led us to homeschool our children, so we can deal with this together as a family.  I am thankful that God has given M. such intelligence, passion, and drive for what he enjoys.  He is such a loving child, and when he wants to do something he puts everything he has into it. He loves to make things for others, and always thinks of others first.  I am thankful for our church.  It took attending several churches that were either intolerant, judgmental, or simply apathetic to special needs children, before we found our “home.”  In fact, M. was kicked out of one Vacation Bible School because of his anxiety related behaviors. Our church isn’t perfect, but it’s just right for us.  I am thankful that myself and my children have all been able to plant our roots there while we search for answers.  I am thankful for our children’s ministry staff, who have experience working with special needs children.  I am thankful that their passion for Christ, that is evident through the love each one of my children, but especially M., receive every week.

As I write this, I am hearing M., playing with one of his sister’s toys.  I am hearing the “typical” sounds of a child, mixed in with the “typical” sounds of a child with Tourette Syndrome.  I am hearing, “vroom, vroom, beep, beep, whee!” mixed in with “hmm, hmm, a-hem, a-hem, squeak.” It breaks my heart that he will have this his whole life.  It pains me, as a mother, to know that there is something “different” about my child, and he will NEVER be “normal.”  But, then I remember that God created him, and God knew about his differences before I did.  He already knows the plans He has for M., and has already set a place for him.  I don’t believe God caused it, nor do I believe that God WANTS M. to have TS.  But, He knew.  And He has made him a remarkable child, already.  He wants more than anything else to “build a church” when he grows up.  His biggest desire, one that he point out often, is to build a church from the ground up, and run it.  I tell him that he can do all things through Christ! Even build a church from the ground up.

All I want is some sleep!

I saw a sleep study advertised the other day, for children with ADHD and sleep problems.  It is so tempting!  Seven and one half years being woken just about every single night, and finding a little one in your bed, will do that to you.  I have only been able to get a good night’s sleep a handful of times when M’s has not spent the night at grandma’s.

The study is for a medication that has been approved to be used in adults, but has not been approved to be used in children yet.  I have contacted the study center, and am waiting for a call back.  We’ll see.

We have decided to take the dive…

After almost a month of debating, researching, thinking, and praying, our family has decided to try the medication recommended by the neurologist.  I took M today for his annual physical, and asked his Dr if she would look into prescribing it for him.  She said she would.  Hopefully, we won’t have to wait too long to start.

I was so torn about this whole decision.  It took so long to arrive at the place.  I finally realized that it is unfair to M to not give him this chance to see if the medication worked.  From what I’ve been reading, this is the only medication that helps with his most severe symptoms, the ADHD, Tourette Syndrome, and sleep issues.  He’s been getting in trouble so much lately.  And, though some of it is his fault, some of it really isn’t.  If the medication works, it may just make the line more visible between the two.  It should also help his impulsiveness, and his attention and focus.  Maybe even we will be able to sit down and do more than 10 minutes of “schoolwork” at a time.

I started M on melatonin at bedtime after his Neurologist appointment.  I have noticed many positive changes with it, so has M.  He actually ASKS for it at bedtime.  I have noticed that he is more able to notice when his body is giving him sleepy signals.  Before, he would actually wind up and get more and more hyper and crazy.  He was also starting to complain about his stomach being upset right around bedtime.  Now, he asks to go to bed.  He used to take up to an hour to fall asleep, and need things to keep his mind occupied while he tried to fall asleep, like music, short videos on his MP3 player, looking at books in bed, etc.  Now, he’s asleep within 5 minutes, and sometimes even forgets to ask me to turn on his music.  He is still having some issues, though, and I hope that the Clonidine works to help it.  He still sleep walks almost every night.  He also comes in my bed at night, and no matter how many times I put him back in his bed, he is still always in my bed when I wake up.  The neurologist said in her report that this is likely due to the TS, and Melatonin wouldn’t affect it.

I hope that this medication does all it claims to do.  I pray that he won’t have any side effects or reactions to the medication.  I kind of feel that this is our only hope!

We have a diagnosis.

Well, several of them, actually.

We took M to the Neurologist today. She was surprisingly well read in TS, as well as all the other co-morbid disorders that can go along with it. She was just a resident (maybe a fellow), but she really knew her stuff. She spent more than an hour with us, asking us questions, asking M questions, and really going in depth about our concerns.

We left the office with her saying that he well fit the criteria for Tourette Syndrome, as well as Generalized Anxiety Disorder, ADHD (we already knew that), and probable OCD. She will be referring us to the local teaching hospital for an Anxiety Clinic they have that focuses on OCD and Tic Disorders, as well as a Psychiatrist who specializes in ADHD. It’s kind of far for every day stuff, but I think it is definitely worth it for the experience and to really know where we are going from here.

She also said that with his level of involvement, and with his co-morbidity, she is very concerned about him. This broke my heart!  She thinks it will definitely get worse.

She suggested Clonidine. We told her that we want to do as much naturally as we can, and that we are open to medication in the future. We did not get a prescription, but I asked her to write what she would suggest in her notes, so if we need to we can go to our primary dr for that. I also asked about his sleep issues, and she confirmed that melatonin is a good way to go. She said that I will notice a difference if he needs it, but if he doesn’t it won’t do any harm.

I am feeling good that we have a diagnosis, and we know where to go from here. But, I guess I am still getting over some denial that it’s even worse than I thought. Kinda bittersweet, huh?