Sunday, July 22, 2012

Our Story, or How I Came To BioMed Part 3 - Kiki Gets a Diagnosis

In January of 2005, I made my first visit to A.I.Dupont Children's Hospital. After spending all morning meeting with the neurosurgeon for Cameron, I took advantage of simply being in the hospital and went to find the Developmental Pediatric Department. 

Kiki and Daddy, during our visit to Florida in Feb of 2005
age 2 1/2 years
I had been trying, with no success, to get an appointment booked for Kieran to see a Developmental Pediatrician. I had called no fewer than 10 different times (multiple numbers each time) over the course of the previous month and had yet to even talk to a person within the Developmental Pediatrics Department. I had left messages each time, and had received no response to any of them. But on this day, I wasn't going to leave the hospital without an appointment scheduled...even if it was 18 months out.

No, that was not a typo or an exaggeration.

The reason I was trying A.I.Dupont Hospital, instead of the more famous and prestigious Children's Hospital of Philadelphia is because CHoP had an 12 month waiting list before they would even schedule an appointment to see a Developmental Pediatrician. 

I was able to talk to a person when I called CHoP, but they weren't scheduling appointments. I would have had to get on a waiting list and the estimated time that we would see a Dev. Ped. was 18 months. This seemed beyond ludicrous to me, my son was 2 1/2 years old. I needed an official diagnosis as soon as possible, not when he turned 4!  But that's what Developmental Pediatricians were dealing with in early 2005--that's what happens when you have literally tens of thousands of children develop abnormally all of sudden
Cam and his Big Melon. @ 9 months,
just learning to sit up by himself.

So, there I was wandering about the hospital after spending all morning meeting with Cam's neurosurgeon, towing Cam around in his infant carrier in a wagon. I wanted to see the scheduling secretary for Developmental Pediatrics and I wasn't leaving without seeing him or her.

It took me a while to find the right area, because it was tucked way in the back of the hospital...after all this is not a place that patients ever visit. There were some changes afoot within the department (no department chair), or at least, that was the reason I was given for the administrative chaos and complete lack of response to any of my phone calls. I'm not quite sure why having a Department Chair would have made answering the phone or returning a phone message any easier for the administrative assistant, but I let that go at that point. 

I sat and patiently filled out the 6 double-sided pages of paperwork that needed to be completed (questions like how he had developed up to that point, did he have expressive language, how many and what words, etc). About an hour later, I walked out of Dupont  with an appointment for Kieran to see Dr. Anne Meduri within 4 months, in May of 2005. 

At this point in time, Kiki had begun to talk a little bit. He spoke his first words when was about 27 months old. By "talk", I mean that he began to identify things verbally: labeling things. He didn't speak to communicate his thoughts or to ask for things for almost another 6 months. 
One of his favorite activities was having a number book read to him. It was one of those preschool numbers board books, with the Arabic numeral next to a box a corresponding number of objects. Kiki would hold the adult reader's finger over the number that he wanted to be read and move it like mouse on a computer screen. He could literally do this for hours, but I usually only indulged him for about 5 to 10 minutes at a time.  The very first words I ever heard Kiki speak were numbers, quietly counting from one to ten, while he was pointing to the corresponding number in that book.  

He was receiving Early Intervention services through our county's Department of Public Welfare, and he was getting about 3 hours a week: two days of Special Instruction for an hour a time, and one hour a week of Speech Therapy. This extremely limited amount of therapy seems paltry to me now, but that's what we were offered.  I somewhat naively assumed that the county knew what they were doing with treatment. They wouldn't offer it at all if it didn't work, right?

Each of these professionals would come in, engage and play with Kieran, with me present if possible, for an hour each time. They were in agreement that autism seemed to be the logical diagnosis. But he continued to baffle them with his rapid ability to learn things, and his eager desire to please them while playing with him. He would easily attach to each new therapist (we went through several), and loved having these interesting adults coming into the the house, each with a different set of toys and books.

After a few months, it had become apparent that it was autism we were dealing with, even if I couldn't find any other children with a pathological progression like Kiki's.  I began my research in earnest.

I read and learned and educated myself on all sorts of therapies and developmental theory. I read literally everything I could find about autism, in books and on the internet. I belonged to lots of different parent support groups and had talked to lots of parents about their particular autism journey. The more experienced and  knowledgeable moms I met were talking about ABA Therapy and lots of it--40 hours a week! One mother was just about to go to Due Process with her son's school district over the proposed IEP, which she was refusing to sign. She wanted 40 hours of 1:1 ABA Therapy and the district was not offering anything close to that. She was clearly a woman on a mission, but I really had no clue what she was even talking about. Her world of acronyms and experience seemed so different from mine.

The most confusing point for me was how different Kieran's autism seemed compared to most other cases I had read about or heard about. None of the Moms I met had a child like mine. Their kids had regressed after first learning to talk, or their kids couldn't focus at all, and couldn't seem to learn at all. While my Kiki seemed so smart. He never regressed, although how he was learning to talk seems completely ass-backwards to me, when you look at it from a developmental standpoint. In fact, it now seems amazing that Kiki learned to talk at all.

Because my boys did not experience any regression, I never really listened to those who talked about Biomedical treatment of autism. I think I just thought that my boys autism was genetic, or was due to some unknown developmental "glitch". I thought that they might "grow out of it" with the right therapy, or at least get better to the point where they would be able learn. One of our therapists would talk about how some children with an autism diagnosis would lose that diagnosis before they turned 5, but she didn't know how or why this happened. And she hadn't personally met of these children herself.

But I continued to believe and hope for the best for my boys.   After all...everyone has a cousin or nephew or some sister's, cousin's best friend's kid "that didn't talk until they were 3 or so, but seems just fine now."

In a one on one setting, Kiki was fabulous. Not neurotypical, by any means, but he could and would engage with just about anyone. But when I put him in a community setting, especially with any other children around, he would completely check out---I now realize, because he was so overwhelmed. He would stim or fixate on a toy, or just run around and make noise. 

I tried infant/toddler storytime at the local library for a couple of weeks, and I thought the musty old librarian was going to kill us or commit hari kari. She would roll her eyes and tisk at Kiki's running around the back of the room, or up and down the aisles of books. She clearly had labeled me one of those indulgent, permissive parents, afraid to tell her child no. She made it really clear that we weren't wanted or welcome there, so we stopped that.

Since that didn't work, I tried to find a preschool that would help him to be around his typically developing peers in a more organized setting--somewhere he would be supported and where he could learn.

We were kicked out of the first program I enrolled him in, one for 2 year olds, and on the very first day of class, joke! Apparently, they didn't like it when Kieran screamed when they took all those lovely new toys out of his hands and made him sit for circle time.   Of course, in retrospect, I was way too honest about his problems. Here I thought I was helping the school to support Kieran when I was really giving them an excuse to not have to deal with him to begin with...he was just "too difficult" and required "too much support."  

In retrospect, this still pisses me off when I think about it. I could completely understand if Kiki had acted this way for more than two weeks of class. But only after the first day they make this judgement call...? 

Our front office had a chalkboard wall,
that we make good use of during our day.
Kiki continued to make good progress with his in-home therapy visits. Our house looked almost completely like a preschool. We had no furniture in the formal living and dining room, so those were our "therapy rooms."  I had a small table and chairs and lots of different toys, blocks and books. He clearly understood the routine when his therapists came to visit and play with him in those rooms. And he was learning incredibly fast. 

Over the course of a two week period in December, Kieran managed to teach himself the entire alphabet. For his birthday, he received that Leapfrog toy where you put one of the 26 letter pieces into this little barn and the toy would sing a song about that letter. "A says aaa, and A says ay, every letter makes a sound..." He played with this toy hanging on the fridge for literally hours at a time. I limited the total number of letters out at any one time to 5, and I  rotated them, so as not to overwhelm him (and also so we wouldn't lose them). After about two weeks, I realized that Kiki was identifying and reading letters everywhere.

In another attempt to get us out of the house and out into the world, I tried a sensory play-group for kids with developmental delays that was offered by Early Intervention once a week. Parents would sit with their child for 10 minutes of circle time and then we were asked to wait in another room down the hall while the 5 teachers, a group of speech, occupational and physical therapists, would run the playgroup for the next 90 minutes or so. After 8 weeks, they told me that they didn't want Kiki back for the next session. He needed to "mature" and perhaps give him time "to learn how to talk and identify things."

This really baffled me, because Kiki did talk. At this point, he could actually read about 50 words. But I realized that once he walked into that room full of 8 other children, he became so overwhelmed and overstimulated, he couldn't do anything, couldn't focus on anything.  

This was yet another example of me trusting in a system with professionals that really had no idea what they were doing. Here was a group of developmental professionals that clearly hadn't even read Kiki's file that had been compiled and sent over from his home therapists!  This was yet another playgroup we were essentially kicked out of, and this one was supposedly developed for kids just like Kiki! That was a particularly low and frustrating time for me. That's probably when I really began to understand that the professionals running the education system didn't automatically deserve my trust and respect. They didn't understand autism any more than I did, even though they has supposedly gone to school and studied it!

So in May of 2005, when Kiki was approaching his 3rd birthday, we finally went in to meet Dr. Anne Meduri at A.I. Dupont. Dave had come to the appointment with me, and we both decided that we liked her very much. She was patient and thoughtful, thorough and empathetic. She didn't profess knowledge that she didn't have and she was very up front in admitting that she didn't understand autism, although she was seeing it and diagnosing it on a daily basis. She didn't know why some children learned to speak and others didn't. She didn't know why some kids stimmed all the time, never stopping even as adults, and others seemed to stop around puberty.

She ran a battery of developmental tests and asked me a ton of questions. She did a vocabulary test and found, at just under the age of 3, he had parts of the vocabulary of a 6 year old. He had a particular interest in animals and nature, which were the questions he kept getting correct just often enough to continue the test long beyond when I thought it was productive.  He would get confused when she would ask him to do some activities, but he remained engaged through most of the hour and a half appointment. 

She diagnosed him with High Functioning Autism, because he clearly was bright and had a good ability to learn. She agreed with me that he needed to learn how to regulate himself in a group setting. She and I talked about the upcoming transition of services for Kieran when he turned 3, and moved into the realm of the School District.  She wanted us to bring him back the following year, so we could see how he was progressing. And perhaps most importantly, she also gave me her office phone number and email and said I could contact her with any questions or concerns. And two hours later, we walked out of A.I.Dupont and went home. 

A lot of parents report feeling despair the day they receive that official autism diagnosis, but it was really just another day to me. I knew of Kiki's autism almost a year before we sat down with Dr. Meduri. The one thing we walked out of that appointment with was that written diagnosis, which would qualify Kieran for Medical Assistance and hopefully more help. But really, that was it. We didn't leave with any medical directive, or any offers for research opportunities, although I made it clear that I would be willing to participate in any research Dr. Meduri was doing or knew of--which was none. I got the sense that she was busy enough with simply the day to day running of things at DuPont. 

We left DuPont Children's Hospital knowing exactly what we knew when we walked in two hours before. Kiki had autism, and no one knew why. 

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.