Botox Dangers

Saw this article today about a girl with cerebral palsy who died of pneumonia after receiving botox injections for her spastic muscles. Her parents sued Botox maker, Allergan, saying that an overdose of Botox caused weakened the muscles controlling her breathing. I won't debate the legal decision, although I would tend to agree that the drug manufacturer isn't at fault and so many other factors are at play when you have a fragile kid with CP and pneumonia. It just makes me stop and think. When HPEKid gets her botox injections Dr. S. always warns us to watch for labored breathing and makes it very clear that respiratory problems are a risk. With this article however, I am surely going to verify the dose that C. is receiving. Anything over 8 units per kilo of body weight is considered an overdose by the manufacturer. We've been feeling lately that C's botox seems to be wearing off more quickly and have less effect on her tight muscles (she gets Botox in her pectorals and biceps), and have been wondering if we should/could increase the dose. Complicating things for C., is that she also has the implanted baclofen pump delivering a different muscle relaxing drug to her lower extemeties, and labored breathing is a potential concern with balofen overdose as well.

Botox

So last week HPEkid went to Dr. S for botox injections in her pectorals and biceps muscles. We've been doing rounds of botox every 3-4 months the hope being to release the muscles that make her arms so tight. Botox, of course is the toxin, used in small doses to temporarily paralyze muscles. It's used to treat a number of conditions, and recently is used cosmetically to reduce wrinkles and lines that come with aging. The effect is temporary and must be repeated. In HPEkid's course of treatment she gets a total of 16 small injections; 4 in each pectoral muscle (upper chest just under the arms) and 4 in each biceps to aid with elbow extension. You'd think a 13 year old undergoing 16 injections would be painful, yet HPEkid normally endures it with barely a grimace. Today she was absolutely giddy, and while she sometimes winced at the initial prick of the needle, she giggled and laughed throughout the session. A resident who was following Dr. S today was amazed. Nice to have a happy kid at the doctors office!

What they learn in Med School

Every so often I search the web for 'holoprosencephaly' just to see if anything new has come up. A week or so ago I came across the blog of a medical student who posted about encountering severe case of HPE in a terminated pregnancy. The baby had severe facial deformities but no chromosomal anomalies. This med student was amazed that otherwise the body was perfectly normal and was even born alive. She noted that she is unlikely to ever come across HPE again in her career. I posted a comment to her blog, just to let her know that not all HPE births are so severe and told her a little about HPEkid. The student wrote back that she never knew that HPE's could live! "We were always taught otherwise". This is pretty depressing to hear; that even in this era of so much better diagnosis and information, med schools are still teaching students that HPE = death. I totally understand that the VAST majority of instances HPE do result in death of the fetus. But doctors are trained, hopefully, to treat the living and it would be nice if they knew that there is a substantial population of HPE kids out there who do lead meaningful lives.

October Update

C has been much improved the last 2 weeks, with markedly less congestion and gagging. Of course it;s all relative. Nearly every time she lays on her back for diapering she starts to hack and cough. Nearly every evening as we sit down for dinner she begins to fuss in her chair and retch. So we normally end up taking her back to her room while we eat. It's odd really, because she can be fine all afternoon, but the instant we pull out the chairs at the dinner table, C starts crying, goes all stiff arching her back and threatening to vomit. Back in bed, lying down, she settles down and is OK. The obvious explanation is that since she can't eat, C gets upset sitting there watching everyone else eat, and I think there is a lot to this. She's obviously aware that she's missing out on something. She clearly shows interest sometimes in wanting to taste things - of course whenever we try this she gags and spits most of it out, she just can't control her muscles to chew and swallow.

Yesterday we noticed a coin-sized bruise on C's lower back above her right hip. Most likely someone (Me?) banger her into the armrest while loading her into the wheelchair. Doesn't seem to bother her. C. was also in some discomfort last night (although she slept fine), had some brown in her residual and was grining teeth this morning. Think she needs a B.M.