MRI results, cyst and hydrocephalus oh my!!

So while I've been all over twitter and facebook about this I figured I would give the rundown of what in the world just happened. The past 72 hours or so have been crazy and while we are out of the woods for the most part now its been a scary ride.

About 3 weeks ago Alvin underwent an MRI and EEG to see if they could determine what if anything was causing his seizures. The procedure went well overall and we were told to just follow up with the neurologist at our scheduled appointment.

So on Wednesday we met with the neurologist. The EEG showed nothing much, but the MRI showed something that as he said was concerning, but not too bad. It showed that his left, right and 4 ventricles in his brain were enlarged and that he had a cyst in his brain. We were told that we would need to followup with the neurosurgon and it would probably take about 3 weeks. He wasn't overlly concerned so we didn't worry. I called the same day and they said they would be contacting me the next day to get his appointment scheduled. We in turn told all of our family what we knew, but not to worry.

On Thursday I was schedule for a leadership training class. I knew to expect a phone call but wasn't overally concerned. The call I got at about 9:30 though was not what I expected. The nurse I spoke to said they wanted to see him much sooner than later. She then told me the MRI scans showed hydrocephalus. Now I'm in shock. I wasn't too terribly sure what it was, other than water on the brain, but I knew it wasn't good. The nurse told us that the enlarged ventricles he had were hydrocephalus.

Quick note, if you haven't heard of it here is the definition from Seattle Children's Hospital Neurosurgery page:

"Hydrocephalus (pronounced hi-dro-SEF-a-lus) is a potentially harmful build up of cerebrospinal fluid (CSF) in parts of the brain.Hydrocephalus literally means water (hydro) in the head (cephalus). It is sometimes called water on the brain. The "water" is actually cerebrospinal fluid. Cerebrospinal fluid is normally present in areas both inside and outside the brain. Common causes of CSF blockage, which causes hydrocephalus Children with hydrocephalus have too much cerebrospinal fluid in the areas of the brain called ventricles. The ventricles store and circulate cerebrospinal fluid. Children with hydrocephalus may also have extra fluid in spaces between the brain and the skull called the subarachnoid spaces. When a child’s cerebrospinal fluid cannot flow or be reabsorbed properly, it builds up. This makes the ventricles bigger and puts pressure on the tissues of the brain."

So once I hear the hydrocephalus issue we start getting more information. The surgeon wants to meet with us at 8:30 the next morning to go over our options and possibly do surgery the same day. Alvin's case I am told is more urgent than originally thought. The nurse also said she wanted to get him an eye exam as well to be sure that he was indeed seeing ok and that his optic nerves were not being compressed.

So with that the chaos starts. I manage to get through the rest of my training class all the while texting and calling family members with updates on what is going on. At this point we have no idea what will happen the next day other than he might have emergency surgery.

At 8:30 we arrived at Seattle Children's Hospital today and began a whirwind of activity. We met with the neurosurgon and were told that his was a moderatly bad condition with the hydrocephalus and that the cyst was inoperable. The cyst itself is in a bad place and they can't reach it without doing more damage. They hyrocephalus though could have something done to correct it. We had two options. They could put in a shunt that would reroute spinal fluid from his brain to his belly thus elliviating the pressure. The second option that he was a conditate for that not all kids are was called an ETV or Endoscopic third ventriculostomy. In this procedure they literally use a tiny camera inserted in his brain to guide an instrument to make an extra hole in his brain so that fluid can drain out on its own.

We were given the choice and went with the ETV since it meant no permanent hardware would be left inside him. Then the surgeon left to go start scheduling things and we were sent for an eye exam. About an hour and a half later we were back signing the papers for him to have the surgery and getting him ready.

Below is a video of the procedure itself.

Will went back to the operating room as they put him to sleep and then we all headed to grab some lunch. Luckily a good friend of ours drove 2 hours to stay with us and keep Elliot entertained. Seriously having Chirstall there with all of her experince in that hospital was so nice. We laughed about it all and Elliot of course had fun attempting to charm her! As we finished lunch we got a page to head back down to the ICU. To our suprise after only about an hour the surgery was done and things went great. His pressure inside his head was 17 and normal is nothing more than 15. He now had an extra hole in his head and fluid was starting to drain away and the pressure was also expected to go down.

He had a CT scan and then went to recovery where he started to wake up and ask for me. The staff immediately brought me back and he was doing good just a little nauseated. Soon after they got him up to the Neuro ICU for monitoring and he started to ask to play on the tablet but still sick. He will hopefully be moved out of ICU to a regular room tomorrow and go home late tomorrow or Sunday.

Now at about 9:30 he is resting comfortablly. The last 72 hours or so have been crazy for all of us. I can say the best thing that came out of this was how fast the doctors and staff here reacted. The nurses I saw in neuro recovery and ICU are shocked that the hydrocephalus wasn't caught earlier but since autism signs like speach delay and motor skills problems are also common to hydrocephalus the only real clue without the MRI was his head shape.

I fear that if we had been back in AL this wouldn't have been caught. Once we got here and pushed for a re-evaluation of his condition everything was discovered and we dodged a major bullet. We were able to find things we never knew were there and had honestly more than likely been there since birth. Alvin's chances of recovery are very good right now. We don't expect his autism symptoms to go away completely but there is a chance that the surgery has lessed the pressure on parts of his brain that control things like speech and fine motor skills and those areas could see more improvement.

To all of those who have sent us well wishes thank you so much. I'm sorry we haven't gotten back to every single one but we have seen them and we appreciate it. We are very grateful at the out pouring of support and hopefully here soon I'll get more pictures up

The Communication breakdown

Last night while trying to put Elliot to bed she became hysterical. Crying and asking for her cup of water. After giving her a drink she told me she needed to go potty and then said “tummy hurt”. Ok her crying fit now made sense. So a dose of anti-gas and soothing and she was fine.

Instances like that are a slap in the face, but yet I’m happy she is able to tell me that she is hurt and where.

It’s a slap in the face because of this story.

About a year ago when we moved here Alvin started playing soccer. He would get to running  and then start coughing. We just thought it was due to the climate change. For about the past year we have seen him have what we called a constant cold. For some reason he started coughing every time he went from hot to cold environments and even when he was playing outside. Because we knew nothing else we just thought he was ok and never thought twice.

Then last week at gymnastics we had an incident that made us think otherwise. They were doing his favorite group activity which is a big inflatable mat called an air track where the kids get to practice skills and just have fun jumping. He was having a good time but couldn’t stop coughing. He tried to relax but it didn’t work and he kept pushing himself and ended up finishing the activity but collapsed on the air track once it was over. His teacher brought him out to the lobby and said “he can’t breathe”.  I took him home and he still had the cough, but it slowed down so I didn’t rush him into urgent care since he seemed to be breathing ok. I sent our friend and the kids favorite sitter a message about what had happened and she had noticed the last time she was over she noticed he was having the same issue when they went outside to play but the cough subsided when the came in. Then she asked me if he had ever been checked for asthma. Umm, no which got W and I to talking. Maybe that was why he was always coughing.

The next day I called his pediatrician and got us an appointment for that afternoon. Turns out he has asthma and for how long we can’t be sure. W and I seem to think it has been going on for about a year as far as we know. Until his gymnastics teacher said something about him not being able to breathe we just thought it was a chronic cold. Now he has an inhaler that he gets before any physical activity. After a weekend of being outside at playgrounds and hikes he coughed very little and seemed so much better.

I want to beat myself up for this, but in all honesty I can’t. At the time we did what we thought was best. He never until last week gave us any cause for concern. Sure the cough was annoying, but it never bothered him too much so we didn’t see it as an issue.

Getting back to the original point of this post, sometimes I guess I take Elliot’s growing ability to tell me what is wrong or hurt for granted. She can point to what hurts, or when something is bugging her. Alvin though just isn’t there yet. He is doing better but until his communication skills improve whenever he’s sick or hurt it can be a nightmare to try and figure out what is going on and how to help him.

An update and a scary realization

Things have been quiet around here and it’s certainly not intentional.

Between Alvin and Elliot’s baby bother/sister making me constantly sick and crazy work hours I just haven’t had the time or energy to do more posts here.

Lately things have been crazy with Alvin though.

His ninja skills have been getting far better and unfortunately nothing good comes of that.

Saturday Alvin was sick and Saturday night we let our guard down a little because we figured he wouldn’t be up much at all.

Well I heard him up at some point but didn’t think much of it until around 5am I heard a bell. I walked out to the living room to see what was going on and I was shocked. He and his sister were awake and one of them (more than likely him) had dragged his tricycle upstairs from the garage and was ringing the bell and riding it in the living room. The kitchen wasn’t a wreck for once and then we noticed the sliding glass door was open and the dog wasn’t in her kennel. Luckily my husband got dressed quickly and was able to track her down before she got too far.

W made the inevitable 7am run to Lowes and got door alarms. For now there are chimes or alarms on every point of exit. It’s the best we can do until we can get more answers or help to make sure this doesn’t escalate or happen again.

Stuff like this with Alvin has started to scare us more and more. It’s hard to punish him because he acts like he has no idea what he did is wrong or how dangerous it could be.

So this week I am going to make the call I never wanted to make. I’m calling Seattle Children’s department of crisis services (http://www.seattlechildrens.org/clinics-programs/social-work/) I feel like W and I have done as much as we possibly can to keep him safe and yet it still isn’t working.

Tomorrow he undergoes a sedated MRI/EEG. We are hoping this is the first step into understanding what may possibly be going on with him and how we can start helping him.

Turning 5 and the birthday party to come

At the end of the month Alvin turns 5 years old. It’s going to be a pretty big deal to us but I’m not sure if it will be to him.

We have family making the trip from AL to NW Washington to spend a few days with us see the kids and see what he has accomplished in the gym.

Wednesday night when I was talking to one of the parents they asked if Alvin was excited about his upcoming birthday party and that’s when reality came crashing down on me again.

I’ve talked to him about it and will let him go and pick out the decorations (plates, napkins, ect) with what ever theme he wants but I have to wonder does he get it? If you ask him what he wants for his birthday he doesn’t answer and just continues with what ever he was doing at the time.

With all the progress he is making sometimes I just wish he could/would tell me things. I would love appropriate answers to questions.

He did however tell me he wanted chocolate cake last night. Baby steps but I can take that!

In so many ways he and Elliot are at the same level socially. I can ask Elliot the same questions and she just looks at me and smiles or laughs. Even when they play they do things very similar. Their play time normally involves playing tag and laughing at each other or playing peek-a-boo under a blanket where the laughing never stops. There isn’t much speaking other than the occasional “NO”!

So even though Alvin turns 5 years old, I am reminded every day that he still has a long way to go to catch up. He is around 2.5 socially and 5 years old physically. I know this is completely normal and should get better as he gets older, but  sometimes in the moment it's hard to take.

The gym issue, how to turn it into a positive learning experience

This week as I alluded too went pretty bad at the gym. It was show week and during the class all of the other kids got to show a skill except for Alvin. At the last station demonstration when he realized that he didn't get a turn he came to me and said "we go home now". He calmly walked out of the door went and got his shoes, socks and jacket and asked for help to get ready to leave.

I was heartbroken for him. He realized that all the other kids got to show a skill and for whatever reason he didn't. In the process of leaving I told the teacher that was out in the lobby something along the lines of you guys don't get it. He knows when he is treated differently and it does affect him.

I was fuming mad and upset for a good 2 days. Whether or not it was intentional was beside the point. I was mad because of how hard he has worked and how much he had improved and didn't get to have his turn to shine. The days following Alvin was pretty low key about the gym. If I brought it up he would tell me he wasn't going back. I blame him, not really. I decided Thursday morning that until I could address the issue he would not be going to his extra practice the next day and his next class would be questionable at best.

Friday night when my daughter had her class I got my chance to clear things up. When I got there I asked to speak to the program director after class about what happened. Instead of after class we spoke right then and there in the office. When I told her what happened she was shocked and immediately went and pulled the teacher from his class. As soon as we spoke about it I could tell he felt horrible. This is a teacher that Alvin adores. When I told him that the trust that was built was now gone the look on his face said it all. Alvin has put full trust in very few people outside of family. It takes a while for him to build trust, but once its there he will do almost anything for you.

I fully believe that what happened to Alvin in the gym was not intentional. He adores his teacher and his teacher knows how important trust is to him.

One very important thing though about this situation. There is reason to be proud of Alvin as well as an opportunity for him to learn something.

The first thing is what he was able to tell me when he was upset. He didn't have a tantrum, there was no kicking and screaming, just a calmness. He used words and his understanding of emotions to tell me he wasn't happy. These are things he has been working on for months at home, school and with his music therapist. It was simply amazing to see.

The opportunity to learn is about adults making mistakes. Granted he sees this in school because according to his teacher anytime something is wrong Alvin politely corrects them. These are the times where we talk about how everyone makes mistakes even adults. As he gets older this is going to be a recurring lesson, but one for him to remember.This week we will be talking about that on and off and addressing it directly with his teacher on Wednesday night.

In the end I am glad we were able to work everything out. What Alvin is doing as shown below in the videos shows how far he has come. The skill on the high beam he saw demonstrated only once and needed no verbal cues from the teacher to do correctly which completely floors me!

The Sheldon comparison

Alvin has loved watching The Big Bang Theory for quite a while now. He especially loves the character Sheldon (who many believe to have Asperger's Syndrome but it is never stated that he does).  Alvin loves when he says "Bazinga!" and dances to the opening and closing music every time.

This week I found out that Alvin and the character Sheldon are similar in another way. They both love thier whiteboards and are not happy when you mess with them. Here Sheldon shows Penny his neighbor what is on his whiteboard. Notice how proud he is of what he has on it.

Well this week since we were stuck inside due to the snow I decided to set up the easel the kids got for Christmas that has a magnetic whiteboard on one side and chalk baord on the other. It also came with some magnetic numbers and letters which of course made Alvin VERY happy.

As soon as I got out the numbers Alvin would not let Elliot anywhere near them. He then told me "5 +4 equals 9".  This was shocking but we got a kick out of it and the rest of the night he happily worked on adding different numbers together. He didn't always get them right but seemed to have fun learning them.

Then his sister decided she wanted to play too and that wasn't the best idea! He kept saying don't mess with my board!! While we are working on teaching them both to share we couldn't help but laugh. He was so upset at her messing with his number patterns and math that it was just funny.

During all this all I could think of is the character Sheldon. Alvin certainly has his days as a 4 year old boy and his love of math and numbers that I just can't help but think of Sheldon. When he was 2 we used to joke that his love of numbers had him destined to go into engineering or science. He may or may not but right now we are having fun with his slightly odd obsession to numbers and math just like the character he loves.

The right to be upset

Disclaimer: This is more of a quick vent than a normal post. This past week I’ve been mad and just distressed at what is going on with him and I hope that the ones of you who have kids with a seizure disorder along with autism can understand.

This week has been challenging to say the least. This week we have seen an increase in Alvin’s seizure activity and it has been hard on all of us.

It started Sunday night when he was trying to go to bed. He was upset more than usual and we couldn’t figure out why. I went into his room to lay down with him and I noticed what was going on. He was having a seizure episode. His face was twitching and there was a lot of involuntary movement in his eyes and overall face. It was heartbreaking to watch and for the first time that I think he was aware that something was going on. After laying with him for a little bit things died down and he was finally was able to rest.

The next day during music therapy he has a drop and then again on Wednesday during dinner it happened yet again and caused him to spill some of his dinner all over him and stress him out.

For a while he had so few of these episodes that we honestly could forget that he even had this issue. The seizures are one of the things that drive me nuts and stress me out.

When the seizure disorder was diagnosed we had a choice to make we could put him on medication and deal with the side effects or wait it out until he grows out of them. The type of seizure he has is very hard to treat and most kids out grow them by the time they turn 7 or 8. So because the seizures are so erratic we chose to do nothing with medication at this time which was also the recommendation of his pediatrician in Alabama and his one here in Washington.

This week I just got mad at it all. I hate that he has started to realize things are going on and it scares him. He is starting to notice the drops more and has started to come to us for help. I was hoping he would remain immune to what was going on for a little while longer.

So while this week has still given us steps in the right direction with music and gymnastics and the steady improvements I think sometimes I think we need to let ourselves be upset at some of the things we have to deal with which is why I ended up writing this post.