I’ve had a pretty tough week this last week. A lot of things happened. One kid graduated kindergarten and another finally received an actual diagnosis for his (I guess many) problems. And my husband and I have been fighting. Look, I haven’t had an orgasm in weeks! My period was super early which threw me off and my husband…I think he is getting bored with me. I’m disabled so I guess that should have been expected. I need to brazen up here, get risky and try new positions. I’m just so afraid of falling, seizing out or having another stroke during orgasm. I went through that once, it’s not fun. Who wants to be afraid of having orgasms? Life sucks when that is what you’re afraid of, take my word for it. So yeah, I’ve been cranky. I don’t know what Kasper’s deal is. I don’t know why he is cranky. The heat, maybe?
Boonshka (I’m looking for a new nickname for him, BTW), he’s turning 3 this August and I’m not sure if I’ve ever really talked about him on this blog which is kind of weird because he’s part of the reason this blog even exists. After learning to deal with my ‘new’ body and my ‘new’ mind and my ‘new’ life with all its limitations and non-grandness post-stroke, I had to start facing the truth. Boonshka didn’t exactly come out of my stroke in the clear.
When I was 13 weeks pregnant with Boonshka, snap went something in my head. I was instantly paralyzed on the left side. I suffered a major stroke due to a ruptured AVM. I went through a lot of scans, some involving radiation which meant placing large iron pads/plates over my belly. I had one procedure done where a catheter is inserted through your groin and sent to your brain where a dye is injected and over live x-ray (type, thing) they watch the dye to see if there are any leaks or blockages. This was how they discovered my AVM in my right frontoparietal lobe, nestled between my motor cortex and Somatosensory cortex.
Throughout everything, I trusted my doctors and other professionals. I’m pretty certain I did so a bit too much. Nobody should trust their doctors or any other ‘professional’ that much. Doctors should fall into the same category as politicians when it comes to people to trust. I had my concerns but these people made them seem insignificant when compared to the risks of doing nothing. Still, when I put all these things together in my head…I still agree with these doctors.
It’s not easy being a parent and being disabled. Now I have to accept the fact that not only am I disabled but my son is also. Granted, my sons disabilities do not compare to mine and I hope they never do. What infuriates me the most is the fact that I have had concerns about our son since he was a few weeks old. He slept a really long time during the day and he would miss feedings. I was concerned because I didn’t think this was normal behavior. When you’re a new parent – with every child you bear you become a new parent even if it’s your seventh kid because all pregnancies, babies and kids are different; you become paranoid and overly concerned about some of the most seemingly infinitesimal details. I think what happens is doctors know this is more than likely just paranoia that erupts during your struggle to be the perfect parent and find it easy to dismiss these concerns as just that…another paranoid freak mom. But I felt like it was more than that and just like my first-born and his pyloric stenosis, everyone around me thought I was crazy and could easily explain/debunk my concerns. When your six month old has made no attempts to roll over, I’m sorry, that is something to be concerned about. When your nine month old has yet to sit up or crawl…you talk to his doctor and find out why. Suffice it to say, my son was at the end of his first year when I first reached out for other help. All of the specialists and therapists recommended other types of testing like hearing before considering therapy. He was a few months into his second year when these same people were questioning why Boonshka hadn’t been started on their programs yet. It turned out he was about…40-45% of where he should have been collectively. He had noticeable physical deficits and was lacking in speech and in some cognitive areas BUT they were impressed with his resourcefulness. By the time he was two and a half, he had improved in all areas but it was obvious my son is hemiparetic just like me. He wasn’t using his right hand for anything. I didn’t notice I because I just thought he was left side dominant – my mom is left-handed as well as Kasper’s dad. I figured Boonshka would be too. Apparently it isn’t until around the age of two and a half that babies even start leaning towards which side would be dominant and my kid had picked it a year earlier. How was I to know that wasn’t right?
A lot of things get thrown around when people can’t identify what is ‘wrong’ with your kid. You’re pushed around from one specialist to the other and you repeat things so often, transferring information from one group to the next, that you don’t even hear the words anymore. It’s tiring more than it is boring. You’re concerned so you keep an interest but it’s still tiring because it’s so repetitious. And everyone asks the same questions so you always give the same answers. Every visit with a new therapist or doctor brought new questions or things these people randomly noticed. Did you check his eyes? This one looks a little slow. Did you check his hearing? His balance seems off. Have you had his spine checked? He doesn’t stand quite straight. Has he had any scans to check for brain damage? Possibly a stroke in utero? We had these things checked except for the eyes because no doctor agrees with that, saying he would be grasping just fine if his fine motor skills were up to par.
His scans in February came back clean which was a huge relief to me because even though I know an AVM is not hereditary I am still frightened by the idea that maybe Boonshka has one. Getting the all clear was a bigger relief than I realized because I almost cried when I got that call.
We had to wait a few more months, until this last Wednesday, to actually see Boonshka’s neurologist. Between the MRI and this visit we had a visit with the school district. They have a program for disabled children that his case worker said we should try for so he could continue his therapies. Luckily, he’s not disabled enough for that program but we met with physical, occupational and speech therapists as well as a psychologist that gauges mental disabilities by social interactions. He passed everything except that physical therapist exam. The P.T asked about CP (cerebral palsy), has any doctor mentioned it? Well, no, no one has. What about autism? Nope, not that either. When I see the neurologist I ask about CP first thing. Right away this neuro is dismissive of the idea…which raised a red flag for me but I sat there quiet. He kept saying it is too broad a term and he preferred not to use it because everyone associates it with something or someone different from how a clinician or other doctor might mean it. This is all well and fine but I just wanted to choke the man and force him to get to the point.
There is a part in the brain near the…ok, to me in the scan it looked like if you cut the brain in half horizontally (transverse plane), it looked like this area was above the cerebellum but in front and somewhat below the occipital lobe. The cerebellum is associated with balance, the occipital with vision (of course there are other functions but this is how I associate the two). There or two symmetrical black spots in the MRI, in real life they are white, these are known as lateral ventricles. These spaces contain CSF (cerebral spinal fluid). This white brain matter “transmits information between the nerve cells and the spinal cord, as well as from one part of the brain to another.” With my son…these spaces are asymmetrical, meaning one is wider (or thinner) than the other. His left lateral ventricle is barely wider which as the doctor explained it means he is missing some white matter which means some of those fibers that transmit those messages are completely missing (or dead). This is known as PVL (periventricular leukomalacia). This means, basically, that there has been some sort of trauma to the head, in most cases it’s an underdevelopment in preemies but in some it may have been caused by a lack of oxygen and/or glucose to the brain. I believe this was caused by my stroke since no one can ever say how long I was unconscious for plus, since I kept ‘waking up’ in different locations throughout my stroke I’ve always thought I may have had a few seizures during or shortly after my stroke; meaning, it’s likely Boonshka did not receive oxygen during these periods.
I get home from this neuro appointment and Google like crazy (not recommended if you can’t handle the possibility of scary things). I’m amazed, dumbfounded, shocked and angry at what I am reading. It turns out that PVL is often associated with a developed form of cerebral palsy known as spastic cerebral palsy. I’m still learning about it but as I was doing my initial ‘research’ (does Google count as research?) and trying to find symptoms as well as associated conditions and possible lead-to’s in my son’s future, I discover that had any doctors or specialists actually read my kids chart/records (I make sure doctors note my concerns and I keep all informed of developments and whatnot) they would have noticed these symptoms all point to PVL and this type of cerebral palsy. Maybe not PVL, the neuro said he wouldn’t have noticed (like the guy that read the initial report didn’t notice) had he not already seen Boonshka as a clinician. He knew the symptoms, the deficits and all this beautiful stuff so it caused him to look at other areas of the brain the MRI tech would have overlooked (which he did). This lead to the PVL diagnosis which brought me home to find out about CP. It irritates me that this neuro made me feel ridiculous for bringing up CP as soon as the visit began. I think I hurt his ego by stating that a basic, school employed physical therapist had thought of CP on his first and only meeting with my son and this neuro hadn’t. I don’t care about your ego, I care about my son. I don’t care about someone identifying a possible cause/diagnosis before you, I care about dealing with it and treating it if possible.
So to anyone that read this due to a Google search on PVL or this form of CP, from what I have found so far it is not really overly concerning but something to monitor. My son wears an AFO like I do. His P.T thought it was his hip causing an inverted foot type of situation (his right foot turns inward when he walks); this form of CP is known for that. He has an impulse issue, doesn’t understand simple commands like…no, and he HAS to touch everything which I thought was normal for a kid his age…it’s not and it’s also a sign of CP. So there will be behavioral issues to deal with which is fine, we’ll find a technique that works for us eventually. There is no real treatment except the therapies he already receives: physical, occupational and speech. Developmental delays can be present but from what I read, it’s not the real issue. Later in life, there is a slight risk (30%) of developing epilepsy and he will be put at an increased risk of stroke but not much higher than a smoker, honestly. I just hope he picks up on and keeps the healthy habits our family has developed since my stroke.