Back to school and back to less sleep

So after Alvin's dental surgery it was time to start school. Alvin's sleep habits over the summer had been gradually getting worse but we figured once school started it would get better again, but they never did.

Even with school starting things just have not been getting better. It hasn't been uncommon to see him up at 3 am and not be able to go back to sleep. He then would have a full day at school with reading and math, both in his regular class and resource room. By the end of the day he came home and just melted down. Things continued to get so bad that I started to video the episodes every afternoon and evening. While we knew he could do the homework, he was so exhausted that he mentally couldn't focus and his way of dealing with it was to scream and cry.

The screaming and crying episodes gradually kept getting worse until he finally started lashing out at me. The final straw for me was the week before Elliot's birthday he hit me 5 times. That's when I knew it was time for us to discuss it with his complex care management team.

The same day we were scheduled to meet with the CCM team he actually had to miss school. The night before he didn't sleep at all and was pretty on edge. Once we arrived at the meeting with the lead pediatrician on the team and she saw the video there was no doubt left in her mind. We had been working for the past year on how to regulate things at home and nothing was really working so it was finally time to consider medication. Part of me was ready to hear this, but part of me wasn't. I never wanted to have to result to using medication to control his behavior but for all of our safety it was time.

The next week was spent by the pediatrician at Seattle Children's talking to not only our pediatrician but also a pediatric neurodevelopmental doctor. The big concern was to find the right medication that would control his out bursts and help him sleep without making him a zombie.

Finally after almost a week of waiting trazodone. Its an antidepressant drug used to regulate serotonin levels in the brain. We were told we would start out at a low dose then increase as needed to get the desired out come or so we hope.

Now its been almost 3 weeks and some days it seems to be working while others not so much. He still has his (at times violent) outbursts that are normally directed at me. We still need to give it a little more time though until we say the dose isn't working.

The other issue that we still need to look into is getting more services through the autism center. His pediatrician at Seattle Children's thinks they could be doing a lot more and we need to follow up with them and see if they have any other areas that could help him.

Other than these issues school seems to be going well. I have an IEP meeting tomorrow and parent teacher conference next week to discuss his academic progress and how he is transitioning to the new school year. The initial feedback I've gotten from his general education teacher is that he knows the schedule better than she does and always reminds her of when he is supposed to be doing something else!

Dental Surgery Update

Yesterday was the day 6 months in the making. When we last met with the oral surgeon and saw the issue we had. Alvin had 2 extra adult front 2 teeth. While having one extra tooth isn't all that rare, having 2 the way he did wasn't something she sees every day.

We got to Seattle Children's around 6:45 and got checked in. By about 7:10 we were back in a pre-op room getting ready. By getting ready I mean we were doing a lot of waiting between nurse and anesthesiologist visits. By about 7:45 we had seen the nurses and met our anesthesiologist.

getting ready to go back

On a side note one of the things I thought was quite funny this time was how many doctors and nurses I recognized. While we were waiting in our room I saw quite a few nursing assistants, nurses and anesthesiologist that I remember from past visits. Just another sign that we have been there in and through that process far too many times.

We tried to have him take a pre-medicine to help him relax before we went back but this time it back fired and he threw up all over the place.

When we finally went back he was anxious as expected. First elmo got some of the medicine, then bear and then Alvin laid down and fought a little but did  pretty good going to sleep. The anesthesiologist and nurses were all impressed that he eventually relaxed a little and didn't even cry.

When surgery was over I met with the surgeon she told me what the damage was. His first set of adult teeth were deformed and she went a head and took his baby teeth as well. The issue now is that his next set of adult teeth aren't completely formed yet. It could be another 6

months or longer before he has front teeth again! So once again we are on a watch and wait prognosis and have to follow up with his dentist in a few months to check and see how he is doing.

When I saw him in recovery he looked pretty rough. His mouth was swollen and I could see all of the stiches in his mouth. The staff in the recovery room did all they could to comfort him, but he was so upset that nothing helped. His pain was under control but he was so distraught he couldn't stop crying. Finally the nurse decided he was stable enough to go back to a room and get dressed and recover there for a while. Once in his normal clothes he felt a little better and started trying to drink some apple juice. Then he started throwing up blood which just made things worse. After about 45 minutes in recovery he finally started to keep some fluids down and we were sent home with pain medicine.

recovering after surgery.

Now at home he remains pretty swollen. His mouth looks really rough and he is supposed to be on a soft/ no chew diet. This hasn't been easy for him since all he wants to do is eat everything in site and just avoid his front teeth.

Sleeping at home with his bear after surgery

Day 2 and you can see how swollen he is.

So now we watch and wait. School starts in 2 weeks and with any luck he will be back to normal by then.

The long awaited meeting and next steps forward

A few weeks ago we finally had our 9 month long wait to meet with the Seattle Children's Autism center. This was a meeting that was talked about in October of last year when we first met with the complex care management team. The biggest fear I had with this meeting was that somehow the doctor/nurse practitioner we saw would look at Alvin's case and determine that he was not on the autism spectrum and we would begin a new fight to keep services that he gets during the school day.

First off the autism center itself is very nice. From the moment you walk in things are much different than any other doctor's offices we have visited. The lights are dimmed and the ambient noise was pretty low. All efforts are in hopes to make it a calm and inviting area for the kids. There is even a separate waiting room if needed with no noise and low light.

The meeting itself went well. We talked with a nurse practitioner for about an hour and a half going over everything from his initial diagnosis in Alabama to his eventual discovery of hydrocephalus. In the end after reviewing all the evaluations and reports he concluded that major additional testing wasn't needed. He said Alvin actually falls more on the higher functioning range of the autism spectrum and not really Asperger's at all.

The main recommendation that came out of this was for a new speech evaluation and further speech therapy. Since Alvin will be attending a mainstream 1st grade class in a few weeks it is important that he be able to communicate with his piers and teachers well.

Just this past week we met with the speech pathologist and once again Seattle Children's is on top of things. The speech pathologist was great with him and in just a few minutes discovered a motivating item for him (iPad) which helped him complete the test questions and on short breaks he got to play any game he wanted. She was very clear as to what the expectations were and he seemed to warm up quickly to her and completed the testing with no issues.

The end result was that she felt he needed a lot more assistance with his speech, which we basically already knew. He is age adjusted for speech about 3 to 3.5. He scored very well in answering what words were the opposite of others but when it came to answering questions about a story with no pictures he had a very hard time.

So the next step is to fight with our insurance to get them to cover the increased need for speech therapy. He is only allowed a certain number of visits before he has to be re-evaluated or they see no need in covering it.



Also this next week is his big oral surgery. On Wednesday we are headed back to Seattle Children's to have his baby top front 2 teeth removed and his first set of adult front teeth that are extra. They are going to do x-rays right before the procedure to be sure that is all that is going on and hopefully catch everything in one shot. We know already this is going to be a tough surgery and he will be pretty uncomfortable for a while. I've been pretty open with him about what is going on Wednesday and so far he is handling it well. I also have a good plan with the anesthesiologist to have him take a pre-medicine to relax him before he goes back to the operating room to go to sleep. This should help with his anxiety like it did last time and hopefully make it overall much easier on him to handle.

Right now we know what we are up against and have plans in place to do the best we can. From keeping his favorite bear and super hero cape close by to having plenty of scrambled eggs, pudding, yogurt and ice cream at home for his recovery I think we are as prepared as we can possibly be at this point.

1 year later

April is Autism awareness month and yet for me this week all I can think about hydrocephalus.

One year ago this week we met with a neurologist who showed us Alvin's MRI scan and told us about the cyst in his brain. He said not to worry but we would be referred to a neurosurgeon to see if surgery was needed on the cyst or not.

Two days later we got the call from neurosurgery at Seattle Children's Hospital neurosurgery department saying that he actually had hydrocephalus and that he would probably need surgery the next day.

I remember distinctly the day we heard the words hydrocephalus. The rest of the day and night W and I spent hours  researching on line what the treatment options were and trying to get in our heads what was going on.

On 4/20/12 we met with his surgeon Dr. Lee and started on this journey. She went through the options with us and suggested an ETV (endoscopic third ventriculostomy) instead of a shunt to treat his hydrocephalus. She said he may need a shunt later in life, but with a high failure rate, if we could do the ETV and it work we would have a better overall outcome for him. The news of the surgery followed a flurry of activity of an eye exam to be sure his optic nerve wasn't compressed then signing forms and prepping for surgery.

On 4/20/13 Alvin will play in his first tee ball game. While some parents will be there and hoping that their kids make a good play or hit the ball into the outfield, our thoughts will be in a different place. We won't be concerned with the things that other parents are worried about. Instead the thoughts of how far he has come in a year will be more on our minds.

One year ago he was having major surgery to alleviate the pressure in his brain. One year ago he was in the ICU and our world had just been turned upsidedown. The last year hasn't been easy. With a site infection and numerous scares from his inability to communicate have kept us on our toes. Both W and I are constantly on the lookout for the signs that things are going wrong.

Now one year later he is playing a game he loves with normal kids. He amazes me all the time at how far he has come in the past year, but right now it hits the hardest.

The dark side

Lately I have been wanting to write about things but with the challenge of a teething baby, a normal 3 year old and dealing with all of Alvin's challenges the words have been slow to come and the decision to talk about things has been hard.

Alvin in general has been doing well. He is still catching every bug out there and his dentist issue is just odd, but then again what's new. The dentist found out that he has 2 extra front teeth that will need to be removed some time in the next couple of years and will need to be followed closely by a oral surgeon to be sure they are removed at the correct time.

What I want to talk about now though is something that I haven't really mentioned before. The quote "Will you love me even with my dark side" comes to mind in what we have been dealing with things lately.

Back sometime at the end of last year as Alvin became more verbal his outburst also became more present. These outburst are normally confined to home and normally happen when he's stressed or had a hard day.

These outburst I'm speaking of are only directed at myself and husband in the form of screaming at us, hitting or kicking. They are never directed at other kids or his sisters, but just us. He gets frustrated with something as simple as not being able to find a lego figure or Elliot taking one of his many hot wheel or just singing.

What ever the reason the outbursts are never seen as ok and he never gets away with them without some form of punishment (losing his leap pad, going to bed early, ect).

I do though however understand them. He gets so upset and angry when things don't go his way and he can't deal with the change. He knows that he is safe at home and with us so that is when he acts out.

So why am I saying this, partially because it needs to be said. This isn't a part of autism that is talked about much and it needs to be said. Alvin underneath it all is still a good kid. He loves his siblings and dog and loves to play baseball.

Alvin though has started to understand that he is different. Kids in tee ball try to talk to him, but he can't. He wants to play/interact with other kids at times but struggles to figure out exactly how to do it.

So what is next? The next step is to talk to his complex care management team about it and push to have the new autism evaluation completed as soon as possible. With the autism re-evaluation completed we can be referred to a specialist who can help us and him deal with the changes that we are beginning to face.

So while we may be encountering his dark side right now we are far from being done with the fight to help him overcome it.

I'm back

First off I apologize for being gone for so long. With the end of my pregnancy things just got crazy and I ended up just posting bits and pieces to facebook and twitter rather than sitting down to actually write.

Now that Alvin's baby sister is here and I'm back at work, things are starting to calm down  just a little. Well at least until the first of the year.

The biggest thing going on right now is our family was asked to participate in a research study at Seattle Children's Hospital. Its called the Comprehensive Care Management study. About 600 families were selected and of those half are in the control group and half are in the intervention group. We are in the intervention group and are meeting with staff once a month to meet with a pediatrician, dietitian  nurse practitioner and when needed a social worker. The first meeting we had was rough. It was 2.5 hours of meeting with each individual on the team and going over everything that has happened up until that point. From the autism/asperger's diagnosis to the more recent hydrocephalus discovery. It was draining to say the least. The staff was great but in the end it felt like everything we had ever done for him was questioned.

We met with a nutritionist, doctor and nurse for 3 months straight once a month to go over not only health issues but also his weight issues. Now that things are calming down we have a 3 month break and in that time he will be seen by a pediatric dentist who specializes in autistic kids, a neurogenetics screen and the staff is having us re-do is autism screen as well just to be sure we know the extent of his autism.

We had another scare with his seizures returning and so far the MRI's show that his ETV path is clear but the underlying cause is still unknown. I can't stress enough how great the staff at Seattle Children's has been through all of this. The doctors, nurses and all staff we have interacted with have been wonderful in accommodating him as well as the rest of the family. The staff in the research study haven't treated us like a number but as actual people that are doing the best we can with what we have been dealt.

So this next year I plan to be back. I have a lot of things I want to talk about. Some with autism and some with hydrocephalus and some with both. So I apologize for being gone for so long but my plan is in 2013 to be back in force to talk about life and issues that come from having a son that is literally one in a million.

The point of understanding

There comes a point where we knew that Alvin would start to understand that he was different. Before the hydrocephalus surgeries his differences were harder to point out. He spoke a little differently and had different social interactions. His motor skills were choppy but for the most part it was hard for others, especially kids his age to tell what was going on. Most kids just thought he was funny or odd, but it never was really a factor.

Lately all that has changed. It occured to me during this hospital stay that Alvin  is starting to understand that he is different and that the hospital is now going to be part of his life.

This all started when we were in the playroom. There was a doctor's table with commonly used items such as a thermometer, pulse oxygen monitor, and stethoscope. While we were in the play room Alvin had a lot of fun showing me how these were all used telling me things about them. While I was impressed with his understanding it was also hard to take.

During the stay last week, from the first clinic visit all the way through discharge Alvin showed me that he does understand what is going on. He knows something is wrong with his head. He knows that the doctors are there to help but they do things that hurt sometimes and it can be scary.

When we got home I basically forgot about some of it until Sunday when we went to a local playground to get some much needed outside time.During our time there I noticed something very specific. When Alvin was playing with the other kids and his baseball cap was on covering his incision he was treated as normal as ever. He at one point took his hat off and went back to playing. The same kids that were just playing with him saw his head and made comments and ran away. These exact same kids started treating him like there was something wrong with him. Alvin noticed this and once again did something that I admire. He calmly came to me and said he wanted to go home so I got Elliot and we headed home.

Once again that was a kick in the gut. I see him deal with it so well, but later the emotional meltdown came out. He asked to be held and carried. He asked me to not let go.

Alvin knows that he is different now not just because of his mannerisms but because of the large "C' on his head. He knows at home he is treated just like Elliot, but for some reason the other kids don't see him the same way. They see him as odd or gross and avoid him which is so different because at home Elliot seeks him out and could care less that he acts weird or has stuff on his head.

We are struggling with this as a whole. So far the only thing we can do right now is tell him that some kids are just mean and don't understand. His family understands him and right now that's all that matters. Right now all we can do is just work through it with him. He really is handling it all very well for his age and we have been so proud of him. He is starting to better understand his conditions though which at times can be heartbreaking. We had hoped he could stay blissfully less aware for a while longer but the day has come and now all we can do is support him through it.