an appointment with a neurologist

my apologies, this post is late in coming and unexplained. Maybe I'll do a family intro post some day so this all makes sense. Maybe not. It's "late" because I was deciding what the blog should focus on. In the end I figured its my blog and it will be about whatever it is I'm thinking about. Doesn't matter really since I don't have readers LOL. Anywho- on with the post.
My Lochy is a round and jolly boy. He's loving and joyful, he manages to be both calm and energetic at once. He is 19 months old. He was born a month early, with respiratory distress sydrome, transient tachypnea of the newborn, transient tachycardia of the newborn, sepsis, torticollis, plagiocephaly, absent suck reflex, absent startle reflex, thermoregulation issues, a pneumothorax, and jaundice. And that my friends is JUST the beginning. After that we added seizures, oral motor issues, brisk reflexes, bilateral ankle clonus, delayed vision development, global developmental delays, eczema, keratosis pilaris (they think- he's too young and its too wide spread but thats their best guess), limb length discrepancy, a small malformed ear canal and one-sided hearing loss of unknown severity, language delay, toenails that grow funny and peel away and curl off the toe, birthmarks which will earn him an eventual visit to the geneticist for possible neurofibromatosis, a delayed fontanelle closure, and the infections. He's had bronchiolitis twice, croup, pneumonia 3 times, bronchitis, conjunctivitis, sinus infections, 13+ ear infections, 9+ rounds of strep throat, yeast infections (diaper area and thrush), scarlet fever, cellulitis, sepsis 3 times confirmed but the immunologist says 5 or 6 times really, meningitis (group a beta hemolytic streptococcal meningitis specifically- a rare and VERY deadly form which left him semicomatose for many days), urinary tract infections (including klebsiella oxytocca which is hospital-grade and creepy), kidney infection, pseudomonas pneumonia, 4 staph infections, and so on. He is ALWAYS sick. He is always seeing some specialist. And isn't that what we were talking about? The visit to the neuro? Ok so, lets get back to that.
Friday we went to the neurologists office. Lochlan has been seeing him every couple of months since he was 2 months old. On Friday the neuro watched him, played with him, tried to get him to do things (point to animals and body parts, make animal sounds, say things, repeat sounds, get a grain of rice out of a film canister, bang cubes together and so on). Lochlan was adorable, fully engaged, and playfully friendly. He was also unsuccessful in every attempt. My Lochlan does not speak. Just over a week ago he began at last to "mama" and my heart STILL breaks and my eyes fairly well up each time he says it... it's THAT sweet. He doesn't say anything else though. He doesn't even have jargoning- the nonsense speech of toddlers. And so the mean old neurologist wrote "general and global delays" in his permanent medical record. We agreed however to delay quantifying and recording the delays and doing all the developmental testing until he is at least 2. The way I see it, Lochlan will be the best Loch he can be regardless of the words we put in his chart. He is, truly, an amazingly fun kid to be around. Besides that I think his health has a lot to do with his delays. I also think that being delayed isn't the end of the world, he is deeply happy and THAT matters to me.
But we were there for the seizures. As a smaller baby he could seize 30 times a day. In June he had a seizure that lasted a few minutes, but generally they are a few seconds long. He now seizes every 10 days or so. He rubs his head a certain way, in a certain spot on the day he's going to "twitch out" so we know it's coming. He gets a certain look and then lays down for big seizures. He knows they are coming and he keeps himself safe.
The Dr managed to elicit a small seizure. So he talked about medication. Before medication we'd need liver function testing. The meds cause appetite changes, sleep disturbances, lethargy, personality changes (often severe/pronounced), drooling, upset stomach, growth disturbances, attention issues, and more. These are mighty unpleasant drugs. So I asked some questions. First: can the seizures cause brain damage? The answer is no, thats an old myth. Second: then why medicate?
There is a rare condition called S.E. (status epilepticus) that can happen to epileptics. It is a seizure that can't be stopped. There are warning signs that lead up to this. Seizures that come closer and closer together and increase in severity and duration. Multiple seizures that can't be stopped without medication. Lochlans seizures are getting smaller and farther apart. He has NEVER (in thousands of episodes) needed medication. They always stop. So I should put him on daily meds that change his sparkling personality and ravage his already preyed-upon body? To prevent a condition he's not really at risk for? I think not.
But Drs like drugs. So next came this persuasive argument: "if he's driving and has a seizure he's sure to crash" Hmmm yes, thats true. But ummmm if he's driving he's sure to crash without a seizure at this point. He's A YEAR OLD. "Well, if he's swimming and has a seizure and no-one notices he could drown" Oh yes, that IS scary. I promise not to sign him up for swim team this year. (I LOVE the water and Lochy is part fish himself, however I have a fear of children drowning and enforce strict anti-drowning guidelines anyway, lest you think I took that warning too lightly). And "it's embarassing to have a seizure in class. The kids could make fun of him" This is true and sad, but once more, my son is ONE YEAR OLD. He doesn't have a class. He also has an immune dysfunction that may keep him from EVER having a classroom. He also has a mommy who is already homeschooling some of his siblings. Thus the chances are good that his classmates will be his family- and we solemly swear not to make fun of him for twitching.
So I declined the medication. I agreed to call the office for seizures over 3 minutes. I agreed to call 911 or take him to the ER for seizures of 5 minutes with cyanosis or over 7 minutes without.
The Dr asked if I had any other questions. I did. A few minutes before I came to the appt I checked email and got a note from the immunologiy guru we'll see out-of-state later this week. It stated one of the appointment goals as discussing treatment options up to and including the administration of gammaglobulins. So we might start IVIG or SCIG as early as Wednesday (I'm SURE there will be a post explaining that soon, but for now, its a way of giving antibodies to people who can't make their own). So I asked if there were any additional risks of IG to individuals with seizure disorders. The Dr perked up. "IG? really? Why? Does he have a dysfunctional immune system?" (dude where have you BEEN???) "um yes. He does."
"ohhhh" says the doc "well first" he sounds excited "no, there are no risks, the IG won't make him seize or anything. But next in some cases IG cures seizure disorders" (say what? why hasn't anyone made this connection before?) he continues, more animated than I have ever seen him "SOMEtimes a persons immune system is faulty in such a way that as the germs die off they are left too long in the bloodstream. They release toxins and chemicals which affect the blood chemistry which in turns affects the brain. A susceptible brain coupled with a malfunctioning immune system can cause these seizures." And the punchline? Doc continues "SO, lets delay medication for a few months and see what happens with IG ok?" Delay meds? Now why didn't I think of that?
So, if we start IG my son may stay well AND stop twitching? Rock On! Anybody else think that if he's not always sick and not seizing so much he might get a chance to catch up on those pesky milestones too? I dare to dream.