Friday, July 06, 2012

How I came to biomedical intervention for autism, part 2

My youngest, Cam, came into this world on a hot summer day in 2004, much to the relief of both myself and Dave. It was to me, because being 9 months pregnant in the middle of August sucks. Let me clear about that. And to Dave because I think he was just so thrilled to not have to listen to me bitch and moan about being so pregnant anymore.
Cam's Birthday Day. Even Stinky Bear got to come visit the New Baby! This is the first picture of all 5 of Us.

My pregnancy with Cam was mostly uneventful. Well... we did move from the Midwest to the East Coast when I was 6 months along. I did have two other children: my very busy 3 year old daughter, and my son, Kiki, who was approaching his 2nd birthday.

I was very, very concerned about Kiki because he was beginning to display classic signs of autism. He was still completely nonverbal and he had recently begun to stim, by running around the island in our kitchen (always to the left) and lining up his toys on the back of the couch.

My daughter, Blythe, was not technically a "late talker." However, at her 20 month checkup,  I remember having a conversation with her pediatrician about the fact that she only had about 10 words. Yes, the doctor did think that she was at the slower end of normal. But at the end of the visit, he looked at me and smiled and said, "While she doesn't say an awful lot, she obviously understands you and she is so very busy exploring her world and sharing it with you, that I'm confident she will catch up with her language very soon." And she did.

But Kiki didn't understand me at 20 months. He seemed off in his own little world most of the time. At 18 months, Kiki was tested by Early Intervention, and he showed the verbal and social development equivalent of a 9 month old, but the cognitive development of a 16 month old. So, we had begun with speech therapy once a week and developmental therapy 3 times a week, all at home. Each for one hour at a time. In retrospect, this seems ridiculous--not even close to enough intervention to make a real difference.  But to everyone's credit, this is 2004 and the Autism Epidemic was really only just beginning. Nobody really knew what we were dealing with here.


So, that August, when Cam came into the world, we had a busy family. 


But, there was one thing that did happen during my pregnancy with Cam. I experienced some spotting, bleeding during my 21 week, just over halfway into Cam's gestation. It was nothing big, just some bright red spots on my underwear one day after a long walk around the city of Chicago with friends. It wasn't that big a deal (I had had something similar when I was pregnant with Blythe, only at 13 weeks--likely implantation bleeding then), but I did call my doctor and she sent me over to the hospital for a looky-see. They hooked me up to a contraction monitor for an hour or so and listened for a heartbeat on the handheld doppler machine for a bit. It was nice and strong. One thing they did do, though, we give me an extra RhoGam shot


Now, I'm rh negative. There's a broader discription of what that means here or here if you are interested. But the long and short of it is this,  during each of my pregnancies, I received two RhoGam shots: one at around 28 weeks and another post natally.  I've also had three extra RhoGam shots, one during my first pregnancy with my daughter, at 13 weeks (because of spotting), after a miscarriage between the births of Kieran and Cameron, and during Cam's pregnancy after the aforementioned ER visit because of spotting in the 22 week. 


Nowadays, I think most of the RhoGam shots are thimerosal free, but there is also some controversy in the medical world about whether or not we need the prenatal dose of RhoGam.  But before 2002, they all contained thimerosal, which is 50% ethyl-mercury, and which should be considered a bolus dose of mercury (25mcg per shot). Also, the older, thimerosal-containing supply was phased out, not taken off the shelves and thrown away. So, in 2003 or 2004, if you gave birth (like I did), you could have very easily gotten the thimerosal-containing product. 


This was injected directly into my blood while I was pregnant, and I had an extra dose while I was pregnant each with Blythe and Cam, because of the spotting. If you are doing the math, that's a full nine injections of RhoGam that I had between the years of 2000 and 2004. Yeah....*sigh*   


I didn't even think about all this until several years later, after it was evident that I was dealing with not one, but two autistic children. And one who seemed much more severely autistic than the other. And, please don't misunderstand me in thinking that I am totally against medicine or Rhogam or hospital birth. I'm not. But I do think that sometimes the medical establishment doesn't want to think that something they may have done to a patient could cause harm to that patient without their knowledge or understanding. They could be---gasp---wrong in their beliefs. There could be more for us to learn about the human body, especially the development of the human brain. 


Cam within minutes after birth. The bluish hands=APGAR of 9,
 but almost all babies born vaginally will have blue hands for several minutes.
So...back to Cam's birthday. It was fairly uneventful. He had an APGAR score of 9, notice those little bluish hands. But he was very healthy, latched on right away. He was 9lbs, and 4oz of love!


We took him home and he did fine. Cam slept okay. He wasn't the Sleeping Heavyweight Champ that Kieran was, but he nursed and slept and we rocked along well. He had all his shots on schedule, which included the somewhat controversial birth dose of Hib. Again, I trusted my medical doctors and nurses to do no harm. I did not know that this birth dose was not something that Blythe had when she was born, 3 years previously. Interestingly enough, Kiki did have it.


Things got interesting at Cam's 4th month doctor's visit. We went in for the usual round of weighing and measuring. This would be a routine "well baby" visit, or so I thought. 


What was weird was how many times his head was measured. I think the first nurse did it twice, and then another nurse came in and did it again while we were waiting for the doctor. And then, when the doctor came in, she measured Cam's head herself. Each time, the measurer commented on my son's big head. This didn't concern me because both Blythe and Kiki had big heads (both in the 95%), and I remember even saying to both nurses and the doctor, "Oh, yes. All my babies have huge heads!" to try to reassure them. 


It wasn't until the doctor showed me the graph that I was startled. The difference between the 50% and 95% in 4 month old babies' heads was 2 centimeters. Cameron's head was a full 2 centimeters above the 95%! He was literally off the chart. By a lot. The doctor then asked me a ton of questions. How was he sleeping? How was he behaving? Did he have any screaming episodes or did he seem in pain at any time during the day? How was his eating? Anything unusual? And I answered as best I could. No, he seemed normal in every way. 


So, she sent me off with a referral to see the neurosurgeon at A.I.Dupont Hospital for Children down in Wilmington, DE.  She wanted to rule out anything "Metabolic" which would cause the abnormally large head growth.  We saw Dr. Jeffrey Campbell, who was very nice and seemed highly competent. I think we were seen by him at Dupont within about a week after Cam's 4th month doctor's visit. We spent almost the whole morning there. 


After Dr. Campbell completed Cam's initial work up, he sent us right down to have a brain ultrasound, which can be done through the top fontenelle in infants. The benefits are that it can "see" quite a lot of the brain, but has much less radiation than a CT scan or an MRI, and there's no need for sedation. 


Dr. Campbell diagnosed Cameron with Benign External Hydrocephalus, excess fluid between the skull and the brain. It should not be confused with Hydrocephalus, which is a completely different diagnosis.  He said that BEH was the most common diagnosis he made and it usually required no treatment beyond close monitoring. He felt confident sending us home with nothing more than a follow up visit scheduled in 2 months. 


No one knows what causes Benign External Hydrocephalus, why it seems to affect more boys than girls, with 2 out of every 3 cases being male, or why it seemingly corrects itself in the vast majority of cases before the child hits 18 months of age, although there is evidence to suggest that a significant number of children with BEH have developmental delays, especially gross motor and speech delays.


Cam, and his big ole head at 9 months.
I was told it was "just one of those things" and not to worry too much about it, until it becomes something to worry about. Again, these doctors seemed really competent, so I trusted them. 


And to be clear, I believe that in most cases doctors are competent. My very best friend in the whole world is an ER physician. Doctors work hard and know a lot. But there is so much left to learn.  I just think that sometimes it's hard to see patterns that may be right in front of you, especially when you don't want to see them, or if they seemingly go against all that you have been taught in medicine up to now. 


So, again, if you are following along with  me, up to this point, I have had two infant boys with head abnormalities that required physician examination, if not physician intervention. Both boys had CT scans. Kiki had his at 7 months, and Cam had his much later, at 16 months old, because he still had a really big head, along with gross motor and speech delays. 


Could there be a connection that both boys have had abnormal heads, both have autism? Could that connection be due to prenatal thimerosal exposure? I don't really know the answer to that. 


I think there is a good chance there is, but I can't prove it. So, it doesn't really matter as far a medical science is concerned.  But I do firmly believe that there are lots more moms out there like me, fighting the fight that I'm fighting. I have seen with my own eyes the numbers of parents with two or more biological children, not twins, with autism rise. More data points, on a data collection sheet that no one seems to be looking at :(


More on how we got our first actual Autism Diagnosis next time. 

1 comment:

Lana said...

Again Gem, this is so interesting! I love seeing how all the Kiki and Cam dots connect.

Love you all and miss you all terribly.
Xox