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.

Working with kids with special needs

In the past I have talked about working with kids at Space Camp in Huntsville AL with kids that were deaf and or blind. Out of all the groups and kids that came through in a year both W and I fell in love with these kids more than most. Sure they had challenges, but many of them had developed a sense of humor and wit about them that knew no bounds. As a counselor leading these kids through activities things were more hectic than normal and quite challenging at times.

Then there were the moments that made it all worth it. W has many stories of taking kids down in the Underwater Astronaut Trainer (UAT) in full scuba gear and watching them just light up. I personally saw kids that were deaf and or blind conquer simulators that made most kids apprehensive a the thought or site of them.

So how does any of this relate to having a son with autism and hydrocephalus? These kids were fighters and their ambition knew no bounds. These kids faced challenges early on like Alvin has. These kids all grew up knowing they were different to a degree and let nothing stop them.

In a way I feel like our interaction prepared us in a very small way for what was to come. Both W and I have had many a sobering moment over the past few months. After saying the words “incurable neurologic condition” so many times to different people and explaining that the future is anything but certain for him the weight of the situation just hits. The stares that we continue to get and his gradual realization of what is going on can be a lot to take. Some days with all of this going on the only thing we can do is remember how far he has come.

A couple of weeks ago Alvin started back in gymnastics. I had no clue what was going to happen but after seeing his favorite teacher and getting to fully participate in a class he was beaming from ear to ear. That night he had accurately and appropriately answered questions in class. At the beginning he was asked if he could have one super power what would it be and he said “flying really fast”.  During stations he scared us all when he ran up to the bar and threw himself up and stayed there locking his arms out and just grinning. We were all in shock when it happened because no one really knew what to expect. Since then he has even begun to give verbal acknowledgement to the teachers when he finishes a skill by giving a high 5 and saying “yes! I did it!”

I apologize in advance for the video quality. I was taking this outside the glass with a glare from the sun coming in.

I guess what I am getting at here is to remind not only myself, but also any others that may work with kids with any kind of special needs not to focus so much on what they can’t do but remember what they can do. If Alvin and the kids I worked with at Space Camp taught me one thing is that they do anything if given a shot. The medical professionals we work with are trained to give us the cautiously optimistic answer to everything. Its up to us to help these kids defy what they tell us in anyway possible.

Is it tough, in a word YES. Its very hard to work to find programs where the child might fit and work with staff enough to help them understand what is going on. I can’t even tell you how mnay times its just killed me seeing Alvin try and talk or play with another kid just to get rejected due to his lack of communication and social skills. The thing we have to remember though is all the stuff that we fight for now will benefit them in the end. The more we fight for acceptance and fight for them to have “normal” lives the better chance that they will grow up confident in what they can do instead of focusing on what they can't do.

What does hydrocephalus really look like?

Being an engineer I am fascinated by working through problems and finding out what is really causing them. After Alvin’s second set of MRI’s I requested a copy for personal use and was pleased that the hospital sent them to us pretty quickly and I immediately started looking at his head and putting the pictures together with everything that we had been told.

Alvin has obstructive hydrocephalus which is just what it sounds like. There is an obstruction (in his case a cyst) that is blocking the flow of spinal fluid. In his case the cyst is blocking about 80% of the space between his 3^rd and 4^th ventricle.

Arrow pointing to the cyst in question

Close up view of the cyst

Cyst sitting in the middle

This cyst from what we are told could have been there since birth but no one really knows for sure. His head circumference was always on the high side but nothing that was out of the ordinary so his pediatrician never even questioned it. He was a little late walking and crawling but nothing that raised any red flags to anyone.

So after 5 years (or so) of the cyst growing this was one of the first images that the surgeon saw of his left and right ventricles.

Initial MRI scan of his head showing the enlarged ventricles

Those large V shaped areas, yeah they shouldn’t be there. His ventricles were quite enlarged and this was why the neurosurgeon’s office got us in quickly. Looking at this picture we know 2 things, he definitely has hydrocephalus and the pressure in his brain is probably elevated. To what extent we didn’t know at the time.

As I have talked about in the past the solution we went with was an endoscopic third ventriculostomy or ETV procedure. This is a surgical option that unfortunately isn’t an option for all kids/adults with hydrocephalus. The surgeon not only has to be skilled in the procedure, but also the patient has to have the right anatomy. Also this procedure is typically the most successful in patients with obstructive hydrocephalus like him.

So after 3 months and a revision to his head due to the infection these are the results.

See he has a hole in his head now

The arrow is pointing to a tiny hole that was made during the procedure to allow for spinal fluid to drain and relieving some of the pressure in his brain. The white line that trails down from it is proof that his spinal fluid is draining like the surgeon had planned.

3 months post op and the new ventricle size.

The last thing we looked at was his overall change in ventricle size. 3 months after the initial operation the ventricles in his brain are starting to shrink. There is no guarantee that they will ever go back to a normal size, but the hope is over the next year they will continue to shrink little by little. We also know that what will be considered full recovery will take a year.

Another thing to note is due to the placement of the cyst our surgeon told us again that it is not in the plans at this point to remove it. The cyst is in a place very hard to get to and as long as it doesn’t get any bigger or change it will not be touched. The ETV allows for it to stay there while still allowing spinal fluid to drain back into his circulatory system.

So now in the mean time we go back to being as normal as possible. Granted some days that’s harder than others. I am beyond paranoid with him. Every time he acts sleepy at a time he normally isn’t, every time it looks like he is getting a headache my mind starts racing.  He always seems to come out of these and my worrying is for nothing. Until he completely learns to tell us when something is off or hurting then both W and I will continue to be paranoid.

He is at least back in gymnastics and will be starting a full day kindergarten program in the fall. Going back to the gym is a big deal for him and he is starting to pick up right where he left off. He is still the same goofy kid that speaks in lines from his favorite shows and is socially awkward, but its getting there. He is answering questions appropriately in class though which is a step forward.

At home he’s starting to engage in more imaginary play by building what he calls “American Ninja Warrior” courses out of Lego duplo blocks. He is even starting to get better fine motor skills with writing practice. This past week when we were going to practice he sat down and wrote his name with no help. Its still really rough, but at least he did it and I could tell what he was writing.

So that’s about all. I hope this post sheds some light on exactly what his condition looks like via MRI. To me its pretty interesting and while its been a scary and trying time over the last few months we are now in the management and recovery phase which we are very happy about. If anyone has questions please let me know and I will do my best to answer them.

The neurosurgery update

So here are the details from the appointment this week. 


First we had to go through having the MRI and getting Alvin sedated. It went a little better this time but it was still tough. The doctors and nurse in the radiology department assured us that as he gets older it does get better and sedation may not even be needed. He came out very sleepy again but luckily this time reacted much better than he has in the past and came out of the anesthesia with no nausea.


Once he was good and woken up we went upstair to meet with Dr. Lee his neurosurgeon. First asked about his progress so far. His overall motor skills have slowly and steadily improved. His speech is getting better and even though he is a walking book (repeating everything he hears, reads watches) he is at least talking. His surgeon pulled up both MRI scans and looked at them side by side. The scans showed that the hole placed in his 3rd ventricle is still open and working well. The cyst is still there and will not be treated. The thought is because it is in such a bad place that unless it changes in some way it will likely never be treated directly.The cyst itself is what is directly causing Alvin to have obstructive hydrocephalus. The scans also showed that his overall ventricle size has decreased. It may never go down to its normal size but as long as the drainage path stays open he should be fine. His next MRI will be scheduled one year out.

We were told he could go back to normal activities but to be cautious. We still will have to watch him like a hawk because of his inability to effectively communicate pain and overall discomfort.

So right now we have been cleared to let him go back to gymnastics. He is going into the 5-6 year old class (Good Friends) and after a few weeks if for any reason we get the sense that its too much or he is having issues with it I will drop him down to the 4-5 year old class (Giggle Worms). He has also been cleared to go back to school in September with no restrictions which is huge since he will be in all day kindergarten.

Things are finally getting better and while we are of course happy that things are stable for now I don't think that the anxiety level has completely gone down. The fear of what could go wrong will be with us for years to come but we know that we and the staff are doing everything that can be done to be sure he lives as normal life as possible.

Update from the neurologist

So just a quick update. We had our followup appointment with the neurology department of Seattle Children's Hospital this week. I thought it would be uneventful and turns out I was right. We met with the neurologist and went over all that had happened in the past few months. In the end Alvin hasn't had a single seizure since the initial surgery. The neurologist now believe that his seizures were caused by spikes in pressure in his ventricles that were putting pressure on the cyst. He believe that we are now done with his practice unless something else happens when we will be referred back.

So overall we are now officially done with the neurology department. Now the next step is Tuesday when we go back for Alvin to have a MRI and CT scan of his brain to be sure things are healing internally correctly and that there is no evidence of excess fluid collection in his ventricles. Once the scans are done we will immediately meet with the surgeon to go over the results and what our next steps are with him and the condition.

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.

The infection update

So the last time I did a full update was Tuesday night after surgery. Wednesday morning we had a visit from the surgical team and his incision looked good. It was still red and swollen which was to be expected but otherwise fine. He was still lethargic and had no want to do with taking any sips of a clear liquid. He basica;;y slept most of the morning until W and Elliot got there. I then took Elliot to go pick up my laptop charger at work and get us lunch while he stayed with Alvin. When I got back we had lunch and even though Alvin asked for a bite, when you actually offered him a drink he said no.

We found out that due to the large amount of antibiotics and fluids he was on that they were decreasing his appetite and keeping him pretty lethargic.

Then things got interesting. We met with a doctor from the infectious disease. They said nothing had started growing in the cultures but they just weren't sure it was even bacteria.So after some more questions I showed him the pictures of what it had looked like the days before we brought him into the clinic and then in the clinic when they started cleaning it off. He was actually pretty amazed that I took them and asked for them to be emailed to him so he could study what things looked like before they cleaned it out in the OR. Later that night the team from Children's as well as the doctor we spoke with from UW came back to go over things further. This is where things got interesting. They told us they now suspected that the infection was not viral but in fact fungal! They were going to talk to the neurosurgeon to get a better idea of what they saw in the operating room. The surgery team (yes now it is more than just his surgeon and her resident) stopped by later and discuss what they saw. They weren't convinced it was bacteria but said it was ultimately up to the infectious disease team to decide the final treatment plan for the antibiotics.

Luckily that night he slept well and on Thursday morning was starting to feel a little better. The nursing staff suggested turning down his IV and seeing if that would help him want to eat and drink a little. Well it certainly worked and before long he was eating jello and starting to drink very slowly. The surgeon even came in during rounds and said they could just disconnet the IV entirely since he hadn't thrown up again. The rest of the day he slowly started eating and drinking and driving us nuts as his energy returned.

Later that night he was feeling so good we even made a trip to the larger playroom to help release some of his energy. By the time we spent about an hour and a half there we also met with his infectious disease doctor and his surgeon one more time. His surgeon wants him to go home tomorrow and thinks his head looks really good. She does want the nursing staff or a nurse practicioner to give it a good saline wash just to get all the dried blood off and one last good cleaning. His infectious disease doctor believes that the infection was actually a combination of a fungal and bacterial infection. Luckily it was all superficial so just a course of oral antibiotics is probably all that we will have to do at home. Well that and a followup incision check in 2 weeks, but that was to be expected.

As long as the infectious disease stuff comes back fine we are out of here tomorrow and I'm not sure who is happier, us or Alvin!

In some ways its like starting all over. After 7 weeks we are going to be sent home with the same care instructions and he will have the same physical restrictions. While it is really frustrating at least we have it under control now. We now know that he has an issue with the super glue they use. He no longer has any hardware in his head and it will not be replaced. He is as back to normal as he was 7 weeks ago and now maybe we can avoid any more emergency trips to the hospital for at least a few more months!!

Back in the hopital

So first off please forgive me if this all seems like a mess. Once again we have had another urgent operation.This time it was for an infection that was starting to set into his head.

This past weekend we noticed that he had a funky smell coming from his head when you got up really close to it. It was seeping a little blood but Alvin had been acting fine and not running a fever or seeming otherwise painful so we didn't worry about it. We just did our best to keep it clean and dry and things seemed fine.

I decided to call the neurosurgery clinic on Monday just to be sure but continued to think that I was just paranoid. I received no call back Monday and figured it was because my personal cell phone doesn't get reception in the office I called back Tuesday morning and left my work cell phone number. The nurse practitioner called me back and said they wanted to go ahead and see him at 3pm today just to be sure we were ok.

I left work around 1:30 saying that things were fine and I would be back tomorrow.

When I got home W told me that the smell had gotten much worse and that part of his scab had turned green. So off to the hospital we went.

The nurse practitioner took a look at it and cleaned it the best as well as she could and remove some of the caked on glue but soon realized she needed a surgeon to look at him.

The surgeon came in and gave us 2 options. One was to use a topical antibiotic ointment and oral antibiotics and see if that worked. The other option was to take him to the OR and clean it   out and do a full debridement of the area. I told him just to do what was best. He took a couple of pictures and went to show the attending surgeon Dr. Lee who also did his ETV surgery. She came in and said she just thought it was best he go to the OR and get this taken care of once and for all.

Calls then went out to family and W arrived with Elliot. We got him back to the OR and went to grab a bite to eat. After about 45 min we were paged to go wait for him in another room and were told he was waking up. W and Elliot then had to leave and I went back to stay with him.

Waking up was really hard again. He was in a lot of pain and really disoriented. Once the pain was under control we moved to the surgical unit where he will stay.

From what his surgeon told us it smelled worse than it was. He will be kept in the hospital for a few days while they culture what was found and give him heavy doses of antibiotics. She is confident this is just a minor setback for him.

So now we wait. I'll post more as all this continues but right now we are doing well. Once we know more about what is going on I'll send out another update but for the moment we are once again glad to have Seattle Children's Hospital close by and a neurosurgical team that is so good with him.

Hydrocephalus and ETV. When reality sets in.

One of the things you go through after the diagnosis of autism is a reality check. It’s when reality sets in and you face what your child’s new future is. Everything with your child seems uncertain and all of a sudden and you have to go back and understand that things have changed. The things you thought your child would do may no longer seem attainable. So you sit there and make new plans. You start taking things more day by day and learn what a new normal for you and your family is and will be.

To paraphrase a friend of mine, it’s hard to remember that during this time your child is still the same kid you have always known. It takes some time to look at them and remember they are not just their diagnosis. But slowly things get back to what the new normal is and one day you just can’t imagine a time where it wasn’t like this.

This same thing has recently happened to us with dealing with Alvin’s diagnosis of hydrocephalus. The diagnosis and surgery hit us so far out of left field that honestly it’s just taken a longer time to process what has happened and how it will affect us moving forward. The more I have told his story the past few weeks the more things have hit me. Both W and I are still working to really come to grips with what is currently going on with him and what his future will entail with the diagnosis.

I am an engineer and do my share of analysis and in this case I can analyze all day and never really be ok at this point. I’m ok in front of Alvin and E, but W knows me. I always have the facts and numbers in my head.

The general numbers for the procedure Alvin had (an endoscopic third ventriculostomy or ETV) is a success rate of approximately 80%. So in the first year 80% of the patients that have had this procedure the result is that the drainage of cerebral spinal fluid adequately controlled. The second year success rate is about 78% and the known time that the procedure is most likely to fail is within the first three to six months after the operation. The reasons behind the failure can vary, but the most common is that the hole in the third ventricle either partially or fully grows up and spinal fluid can no longer flow through the path

We know that no matter what, his condition will need constant monitoring by his neurosurgeon and the staff at Seattle Children’s Hospital. We know that for him, contact sports like hockey and football are out for good for the rest of his life. The chance of something happening and his catheter being damaged are just too great with both of these sports. Soccer and t-ball/baseball and gymnastics are all possibilities still but will have to wait until after his next MRI and meeting with the neurosurgeon in July to know for sure. Until this appointment we also have to keep a very careful eye on his incision. We have to constantly monitor it for any separation of the skin, blood or leaking of fluid. If anything comes up its back to the clinic or Seattle Children’s Hospital neurosurgery clinic or ER we go.

So what is Alvin’s overall prognosis? For all the information he has he should be fine. He will grow up learning more and more about his condition and how to manage it. We are working on getting him a bracelet as well to identify that he has hydrocephalus in case something happens and he can’t speak. The condition will never completely go away though. The best thing we can hope for is that for the rest of his life he stays in a constant state of remission where the fluid levels remain normal and all drain paths are working correctly. Could he have more surgeries? The answer is yes. Dealing with this condition means never really knowing what is going to happen. So future surgeries to repair his catheter or do a revision to the procedure are always a possibility for the rest of his life.

We know that for the next few months at least we are taking things one day at a time. If at ANY point we notice things that are troubling like loss of verbal skills (goes from talking one day to not being able to talk the next) or suddenly seems lethargic and responds less verbally or to verbal requests we have to get him back to the hospital immediately. These are all signs that something may have gone wrong and he needs immediate attention by the neurosurgery team.

Last week I had a conversation with one of the nurse practitioners in the neurosurgery department after Alvin gave us a scare the night before. She said Alvin was one of the kiddos that scared them. His hydrocephalus was diagnosed much later than some and if his fluid pathway is blocked and the pressure starts to build up again we won’t know what it is going to look like. For him it could present in a number of ways so anytime we have a concern we should keep an extra close eye on him and possibly get him to the ER at Seattle Children’s so that he can be evaluated and effectively treated by the neurosurgery team.

The worst part of all of this for at least the next few months we cannot continue with many of the activities where he is around groups of normal 4 to 5 year olds. Things like playgrounds are allowed only if there is no equipment he can fall off of. Gymnastics and socializing in a structured environment with normal kids is all on hold due to the fall hazards and the possibility of his head splitting open if he rolls on it too much. All we can do is keep home life the same and treat him as much as possible like any other kid his age. We can still go on outings and do all of the other things that we normally do but we have to be extra careful of his actions for the next few months.

So this is what we are dealing with. It’s an adjustment for all of us and is definitely taking time to get used to. Here soon though things will begin to take on a new normal for us and we will gradually learn to accept the new challenges the hydrocephalus diagnosis has presented to Alvin and all of us.

1 week after surgery, a follow up

The last time I did a full post Alvin was in ICU and I was updating facebook/twitter with updates and pictures as I could.

Alvin met his neuro surgeon around 8am Saturday morning in the ICU. She took a look at him and his overnight stats and said it was time he be moved out of ICU and down to the surgical unit. She wanted to try and get a CT scan of his head but was unsure if it was going to be able to happen on a weekend.

Sleeping in the ICU

Wanting to sit up and play a little on the tablet in the ICU

About an hour later we were on our way down to the regular pediatric surgery floor. Once there he actually wanted to get up and go take a quick walk around the unit then headed back to his room and ate a good breakfast. W and Elliot came to visit shortly after and after a dose of tylenol and some lunch Alvin settled down for a nap and they left. After a good 3 hour nap he got up and was ready to go. He took a quick walk down to the play area to get some ice then back to his room. At this point he started getting really restless. Later that night after he ate dinner the nurse agreed to just do a saline lock on his IV and was allowed to go take a walk down to the first floor. He was even allowed to sleep without it and only had a little bit of tylenol before bed.

In the surgical unit. He was just happy to be allowed to sit up in a chair.

Breakfast time

Good view of his incision

First look at his incision after being unhooked for a little while.

PLay room with puzzles and cars

Sunday morning he was awake around 0430 when they last took vitals. After some time watching cartoons and netflix we went to go walk the halls again. During one of our many laps we ran into his surgeon who said he was ready to go home. The CT scan wasn't going to happen that day and she honestly wasn't concerned due to the way his incision site looked and how well he was eating and drinking. So after all the paperwork was signed and discharge instructions given we were headed home.

Playing Mickey Mouse Club House games on the public computer in the playroom.

Leaving the hospital. As he says every time he leaves "Bye children friends"

The first stop before home though was to the mall. Since his incision was so big and nasty looking we wanted to get him a new hat. So in the Mariner's store he picked out a new hat that he could wear to school. After the Mariner's store we headed over to the Disney store. Seriously I was completely fine with him getting a new car after all he went through.

At home the kids rested and soon Alvin was asking to go play in the sun. We agreed and headed to a small park. The entire time there we were watching him like a hawk but from his actions you could never have known what he just went though. That night though we shaved his head. It was just easier to keep the entire area clean with everything shaved off. He hated it but like a good dad W shaved his too  and that seemed to make him feel a little better.

New hair cut

The rest of the week was back to normal. Monday he went to school and had no issues. We went outside to parks during the week and he acted fine while I watched him like a hawk to be sure he didn't do anything too bad. All week we kept a careful watch on his incision and did our best to too it clean and dry at all times. He kept asking to go to gymnastics but wasn't able to due to needing to wait a week.

Playing at home as normal.

5 days post surgery.

Swinging at the park

So what now? Now we go on as normal. He has an incision check in a couple of weeks to be sure things are all healing correctly. Alvin has been in very little pain and only had tylenol a few times for mild discomfort in his head. He then goes back for a followup MRI and meeting with his surgeon in July. This is mainly to check to be sure his cerebral spinal fluid is draining as planned and that there are no other buildups. Also we will be checking the cyst again to see if there were any changes in it.

The other big question is since the pressures in his brain have gone down have we seen anything different. The answer is yes and no. Overall he is still the same kid. He has his social awkwardness and most everything else. The only thing we have seen a slight improvement in is his speech. He is slowly starting to speak a little more clearly and string a few more words together. We are of course thrilled with the progress but are cautiously optomistic as to what else could happen during his recovery period.

 So that's about it for now. I'll try and do another post next week after he goes back to gymnastics. Hoping things go well there and I know he will be absolutely thrilled to get back to his favorite activity.

Will the hydrocephalus surgery cure Alvin's autism?

I have another post coming soon about how Alvin is recovering from surgery but first I need to address something. 

I've had many people ask me if Alvin ever had autism at all after finding out about the underlying condition of hydrocephalus? After having the surgery could/will he become normal? As in will he gain all of the motor control and speech of a normal 5 year old?

The answer is in a word, no.

Yes some of the things that can signal hydrocephalus are also signs of autism. The most noted ones are speech delay, fine motor skills delay and gross motor skills delay. The symptoms of autism  are much more involved and include social challenges, repetitive behavior, sleep dysfunction and sensory processing problems to go along with the motor skill and speech delays. All of these things Alvin has and has had since the evaluation process began almost 2 years ago.

The hard truth is that if left undiagnosed and untreated the hydrocephalus could have killed him. We wonder that would we have found out soon enough had we stayed in AL and gone with the doctors and nurses recommendations. When would we have even found out and how much damage would have been done?

The surgery he had last week saved his life. End of story.

The fact that W and I knew something wasn’t right and asked for another neurological evaluation at Seattle Children’s to be sure that the seizures were diagnosed correctly was the first step. Seizures are common in kids with autism so we had every right to be sure we had to correct diagnosis and were handling them appropriately. 

The staff at Seattle Children’s Hospital is to be commended though. The recommended the MRI in addition to the EEG to be sure there wasn’t something else going on. When the neurologist saw the results he did what he thought was best and sent us to a neurosurgeon for a better evaluation. The neurosurgery team acted fast in getting him an appointment as soon as possible as well as the treatment and surgery to avoid damage being caused to his brain or optic nerves. 

The question is now that the pressure has been taken off of his brain what will happen now? At this point we just don't know. He could gain some motor and speech skills over the next few months and year but we have no idea. He will also continue his course of music therapy, special education preschool and mainstream gymnastics classes. So whatever improvements we may see cannot just be attributed to the surgery.

Do W and I hope the end result of the surgery helps in some in other areas of his life, of course we do. But the fact that we still have Butters here today and we have warded off a potentially deadly condition means more than any improvements that may come from the surgery. We can and will deal with the challenges. We are just glad he is still here.

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.