Tuesday, November 1, 2016

Update on supports

I mentioned earlier that Dexter is having some behaviour issues. I don't want to go into detail, as I feel this is a private family issue, but I can tell you that when I am referring to behaviour issues, I am not talking about non-compliance. If it was simply a matter of non-compliance, Dan and I would know what resources to tap into to help us better support Dexter.
That being said, I have an update:
We begged neurosurgery and neuropsychology to help us get to the bottom of Dexter's behaviour. We were able to rule out cognitive problems as Dexter does NOT have an intellectual disability. What this means, is that Dexter is able to understand expectations, he is able to understand what is being taught, and he is capable of being receptive to strategies.
So now we just needed to find out WHAT strategies to use that would best help Dexter. We were referred to a developmental pediatrician who took a full history report on Dexter. He believes that Dexter is exhibiting impulsive behaviour that is seen in children who are not able to self-regulate. Dexter is high strung and full of anxiety. Could this be due to his brain injury and brain chemistry? Perhaps. Could this be due to the traumatic medical history he has and his inability to understand or emotionally process these events? Perhaps. It could also be a combination of the two. Either way, we need to treat his anxiety before he will be receptive to any kind of strategies. We have tried many approaches over the years. Dexter understands what to do and is able to reflect on what he has done to determine ways of improving---but the problem is that Dexter is so impulsive that he is not able to implement these learned strategies in the moment.
He will be able to have cognitive behaviour therapy when he is more mature and receptive to the therapy, but not yet. We can practice mindfulness with Dexter. We can also consider medication. We are hesitant to start medication without knowing what exactly is the cause. The developmental pediatrician agrees. Dexter is medically complex and therefore determining a medication to help treat anxiety-like symptoms is ultimately a long process. We do not want to medicate Dexter to the point that he becomes lethargic or non responsive. We are still exploring this.
Meanwhile, the developmental pediatrician is putting a referral into Holland Bloorview, specifically the pharma-psychology department. They specialize in neurodevelopmental disorders. We were under the impression that this department dealt exclusively in Autism. However, that is not entirely the truth. The industry is moving away from treating diagnoses and moving towards treating behaviours and functions. Therefore, someone can have
"autistic tendencies" without having AUTISM. This was an important element for us. Dexter has been diagnosed with Autism. Some doctors do not understand it as he does not have the classic symptoms. Basically we were worried they would treat Dexter as autistic first without considering the context.
Dexter has enough symptoms of autism to justify the diagnosis. He may not have the genetic form, he may not have the same environmental factors as other children with autism either. Dexter's brain injuries have resulted in a rewiring. Therefore, whether the behaviour issues and anxiety like symptoms stem from his brain injury, his medical trauma, or his autism....it doesn't matter. What matters is Dexter is too high strung. Dexter is too impulsive. Dexter is not able to function at school or at home despite knowing strategies. Dexter needs help self-regulating and recognizing his internal states. It will be a long process, but completely worthwhile, because when you are stressed/scared/frustrated/hyper/anxious/nervous etc.... you are not able to cope.
We need to help Dexter cope so that whatever comes his way he can recognize it and ask for help

Thursday, October 6, 2016

Dexter's hips part 2

Dan and I had a lengthy conversation with our son's old physiotherapist. She was able to put Dexter's situation in perspective. Dexter IS in pain yes, but as long as massage and stretches, epson salt soaks and advil work to relieve the pain, he is still doing well. He hasn't missed days of school (although he has excused himself from recess activities and gym on occassion). He isn't excusing himself from backyard play or riding a bike. Basically, his pain is not interfering with his life. Although it is hard to see him in pain, it is best to delay surgery until it is absolutely necessary. The reason being is this: if the surgery is done too soon there is a chance that they will have to do more than one to account for growth. So unless his xray indicates the need for immediate medical attention, OR his pain is keeping him home from school or remaining inactive....we will wait it out. *SIGH*

Friday, September 30, 2016

Dexter's hips

September 30th - For 2 days in a row now Dexter has woken up in pain. So much so, that he isn't able to put pants on. His hips are seizing and Dan has had to do stretches and massages to get him moving. He hasn't complained much throughout the day. Perhaps the pain subsides? His old physiotherapist happened to be at the orthotics specialist. She noticed that Dexter's feet are worse. His pronation (inward collapse) is now to the point that the outside of his foot is no longer making contact with the floor. Try walking on your ankles. Your hips are bound to be affected. The side where he is experiencing the most pain is his good side. He has been over compensating and it's showing.

Friday, September 2, 2016

Surgery next year?

Dexter had an orthopedic surgical consult yesterday.  They did an xray on his hips to see if he needs hip derotation surgery.  They typically operate when the hips are displaced by 50%.  Dexter's hips are displaced 45%.  This means they will see him again in January instead of next September to reassess.  They asked if Dexter is experiencing a lot of pain.  He was complaining of pain for the last few months.  However, his recent shunt surgery left him inactive for some time and the pain either subsided OR was trumped by the pain in his head.  If the pain persists they will consider doing the surgery as well.  Hip derotation surgery is VERY invasive and can take up to a year for full recovery.

Friday, July 29, 2016

Recovery update

July 29 - Dexter has been home for almost a week now.  He still has occasional pain and discomfort that leaves him inactive for the day, but for the most part, he is recovering well.  Dexter's appetite has returned and his scar is healing nicely without any inflammation.  He has not had any fevers.  I have read some personal accounts, written by adults with hydrocephalus,to gain insight into the "feeling" of having a shunt.  Many accounts have stated that programmable shunts feel different than regular shunts.  Is that why Dexter says he has pain? There has also been mentions of minor discomforts--associated with all kinds of shunts--such as kinking or pinching of the tubes, occasional light-headedness, and buzzing sounds emitted from the device.  I cannot say for certain that Dexter experiences ANY of these symptoms, but it is possible that what he describes as pain is associated to these experiences.  For example, Dexter was sitting in a shopping cart as we entered Walmart and complained that the carpet in the entry way made the shopping cart bounce too much and made him sick.  Dan agreed he looked "off", but Dexter recovered once we were home,  Was it the weather? Was it the motion? Was it because the programmable shunt drains consistently? I think it will be awhile before Dexter is able to describe what he is actually experiencing.  In the meantime, we will watch for concerning symptoms.  Other than that, life is pretty much back to (our) normal.

Sunday, July 24, 2016

July 24

Dexter had an uneventful night.  There were no fevers and no complaints of pain.  He ate a decent breakfast but still no where near his typical appetite.  Dexter still doesn't look well.  He is pale and easily fatigued.  The doctors ran another blood test with the C-reactive protein included.  This is a marker in the blood that indicates inflammation.  Naturally, Dexter will have a little bit of inflammation due to his recent surgery, but they are still tracking this marker to see if there is any increase (or NO decrease).  Typical levels of this protein are roughly 0.5-1.0.  When Dexter first returned to the hospital his CRP level was at 5.  We will see if that number changes at all.

We are sitting at a stale mate right now.  The doctors do not really have a direction for treatment but they recognize that Dexter does not look well.  It is understandable that we are concerned--Dexter just had brain surgery! Of course he will be tired.  Of course he wouldn't be 100% right now.  What is concerning is that every other surgery he has had, he has bounced back quickly.  So the question is: Is he just taking longer to recover, or is there something else wrong? If there is something else wrong could it be masked by the fact that he just had surgery? Should he be discharged to be observed at home? Should they keep him admitted and continue investigating?

Dan took Dexter for a walk.  He perked up a little bit when he saw the motorcycles and exotic cars parked on the street for a fundraiser.  He was a bit unstable and had difficulty going up and down the stairs (more so than usual).  But when he returned to the hospital room he was completely exhausted.  He complained of head pain.  He refused to eat.  Dan is trying to keep him motivated.  He will take him downstairs to the gift shop for a toy (he did so well enduring more tests and needles).  He will take him to the playroom too.  We want to see if we are able to get him out of his funk and raise his energy a little bit.  Who knows how much of it is surgery,

Again, with shunt revision surgery there is a high risk of infection that can occur within roughly 6 months.  Therefore, if Dexter comes home and exhibits fevers and nausea or headaches, we would have to take him back to the hospital.  Better to be safe than sorry.


Dexter's C- reactive protein went down.  Therefore his inflammation went down.  Doctors decided to discharge Dexter.  We have an extensive list of symptoms that would require him to go back to the ER.  If he has a fever of 38C we are instructed to take his temperature every hour thereafter without Tylenol.  If his temperature reaches 38.5 we must bring him back in and bring discharge papers to speed up the process.  Dexter will not be able to go back to summer camp as he must refrain from strenuous activities, amusement parks, and rough housing.  He cannot go swimming until further notice as well.

Dexter doesn't want to talk.  He just wants to play Lego.  We are giving him his space