Kate’s Story – Reprise

After reviewing my post last night, I went into my Kate file (a large filing box in the basement) and pulled out the journal I started after her first visit with the developmental pediatrician in July 2008. I am so thankful I have these notes. Not for the nostalgia, but to remind myself of the ‘story’ and everything we went through in the early days – and are still going through. As I read these notes I wanted to clarify a few things that I wrote in my last post and add a bit more detail.

  • Kate was being followed by a neurosurgeon at CHEO because of a head injury she suffered from fall. When she was examined it was noted that previous bloodwork showed a very low blood hemaglobin level (68 – normal is between 110-160). This was never investigated or followed up with by our family doctor – but it did become an important issue later on for Kate. It was in fact the developmental pediatrician who referrred Kate to hematology in September 2008 for follow up about her bloodwork.
  • Both the developmental pediatrican and the neurosurgeon were interested in doing an MRI on Kate due to her non-specific global developmental delay and sacral dimple that was appreciated during an exam.
  • During our first appointment with the developmental pediatrican, a social worker from the Ottawa Children’s Treatment Centre was present. She was there to help facilitate engaging the appropriate therapists for Kate. Suffice it to say whe was less than helpful, and being who I am, I quickly took the lead and took matters into my own hands. When I look back, Kate was initially on waiting lists for everything – including an Infant Development Worker. This worker never appeared – likely because by the time Kate was at the top of the waiting list she was no longer an infant. Because of the significant wait list for OT – which we really needed – I searched for someone privately and hired her to work with us immediately.
  • After that second hospital visit to CHEO, when we were sent home with a possible diagnosis for pneumonia that turned out to be false, Kate was not recovering well. We waited several days and finally returned to our family doctor for help. I was bit more insistent that Kate was unwell and we needed help, perhaps from a pediatrician. He disagreed wanting more information before taking any ‘next steps’.  Not to belabour the point – but there are multiple notes about our doctor ‘not being on top of things’ and me constantly communicating and asking for help. As I read, the feelings of frustration and anger surface again. We should have never been in the position we were left in to be the sole medical advocates for our child.
  • It finally came to me to find a pediatrician for Kate, and we are so lucky to have found Dr.S now who specializes in children with chronic medical conditions. You’ll read more about him in future posts, but let me say this – support, empathy, attention to a parents intuition, sound medical advice and care – that’s all I wanted for Kate and Dr.S continues to deliver on that to this day. We gradually and with finality withdrew from our family doctors care over the next few months.

I want to share with you my notes from that first meeting with Dr.S. Here is what I had written as my concerns re: Kate: development (weak upper body); comprehension (lack of any babbling); paleness; fatigue; eating/nutrition; sleeping (waking every 2 hours and crying every night).

Then I wrote what I would like in his role as Kate’s pediatrician: to have Kate followed closely; to have Kate examined regularly and thoroughly; to have the right questions asked of us; to have our concerns addressed; to know what else we should be looking at or examined re: Kate.

In those first few months there was a flurry of activity. We were waiting on a hearing test for Kate, and MRI, and more bloodwork. OT wanted to do a ‘feeding study’ to examine Kate’s gastrointestinal and swallowing function. We were supposed to be keeping a journal on Kate’s feeding (what and how much), and we were working with the OT to make accomodations to strollers, crib, high chair etc. to provide Kate better physical support to compensate for her hyptonia. We were dealing with a lot of investigation into Kate’s bloodwork (genetic testing, anemia and possible disorders of hemaglobin production). There were concerns about the contribution of Kate’s hypotonia to her ability to eat and swallow, and complications with aspirating her food. We engaged more specialists for Kate in the roles of dietician and an OT who specialized in feeding. There was so much information about food preparation and how to nurse Kate – it could make one crazy. I had forgotten how all consuming feeding had been those first 2 years. Kate is doing so well now with eating and eating all foods now – I had forgotten that at one time we thought she would never progress through ‘thinned’ baby cereal and would end up G-tube fed.

First Hearing Test

Kate had a hearing test at the audiology clinic of CHEO in September 2008.  This test was done at the age of 11 months in a ‘sound booth’ where Kate was to ‘react’ to sounds and demonstrate awareness through her reactions, e.g. looking at an animated animal positioned to the left or right of her.

When I read these notes and look back at it now, knowing what I know now about hearing loss, I can’t understand how there would be any expectation that there would any accurate information from such a test. Kate is almost 5 years old and she STILL does not perform well in sound booth tests for her hearing.

Needless to say the audiologist who performed the test was not ‘conclusive’ in her findings and wanted to have Kate retested in 6 weeks.

Despite the inconclusiveness of the hearing test, I felt that something was wrong with Kate’s hearing and was concerned about her lack of babbling. I asked our private OT if she might have the name of a speech therapist who could assess Kate. We met this PhD for an hour, paid her $150 and were told that there was nothing wrong with Kate’s hearing and that we should simply keep talking to her. I wish I had sent her the audiology report we received that confirmed Kate had moderate to severe loss only a few short months later.

Trying to stay on top of things…

We were started to panic about what to do for Kate and thought visiting an osteopath may help with her GERD, hypotonia, and constant crying. Kate really disliked these visits for the most part, but the last 2-3 minutes when a pressure point was engaged she would instantly calm. (What was that about?). We continued these sessions for close to year, and then eventually decided they were not what Kate needed.

In the meantime, Dr.S was trying to make it clear to us that Kate had some sort of neurological dysfunction that was affecting her in many ways. What was happening was serious and needed investigation. He also made the point that Kate’s condition may be something that remains undiagnosed and may impact her for the rest of her life.

  • Duration
  • Degree
  • Extent

He could be certain about none of these. It was the first time we had heard these words. Kate was 1 year old.

Julie

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