Miss L and her new referrals

Well it seems Miss L is going through another phase of regressions! She has pretty much given upon food and sleeps hours at a time. The thin that scares me is the sleep. When she was a tiny, sickly baby she would sleep the day away and I would have to wake her up to feed her. The first year and a bit she spent in bed.

So in the last 6 months she has had 2 periods of regression which start with no warning and end with no warning. She just wakes up one day and isn't interested in food. We do the school drop off she comes home around 9am and starts yawning. Normally she has a nap around 10:30am but most days we struggle to make it to 10am.She then sleeps until 1:30 or 2:30. Most of the time I'm waking her up at 2:30pm to do the school pick up. She is the sort of baby who stirs when I open the door but lately I pick her up and walk to the car and she only semi wakes. On the 15min drive to school she usually slowly wakes up and I try and feed her or give her milk. On an average day she will eat less than a handful of food. For the past week I kept track of what she ate...

Monday... handful of sultanas-approx. Slept 4 hours
Tuesday...1 chocolate macaron, square of cheese. Slept 3 hours after Gymbaroo.
Wednesday....100ml of yoghurt slept 4 hours
Thursday...Mr J home sick. 100ml of yoghurt and 2 bites of a plum. Slept 2 hours.

We saw the paediatrician Dr Kretzer on Friday at lunchtime. In the morning I tried yoghurt again with no luck and she only had 1 bottle of milk and she usually has 3 by lunch. Dr Kretzer was stumped too as she watched me try and feed her and she turned away. L has always been interested in food and will often take a bite then walk away and forget it. We discussed this and I asked what I asked her therapists...does she get hunger? Is her body sending the signal to eat or does she not understand it? Dr Krezter explained that there are kids who don't feel hungry and must be pushed to eat or their body doesn't signal the need. As L was always breastfed on a routine then tube fed it's hard to know if this has affected her drive for food too.

We then discussed why she is having these regressions. Last one was August last year and blood tests showed nothing unusual. This time Dr Kretzer decided to think outside the square and look at the less obvious. Is she getting quality of sleep? Especially as I said she is a light sleeper. She wants L to see Annie O'Donnell (who A saw) for a sleep study. Maybe this is just time her body needs to catch upon sleep or is something interrupting her sleep? She also referred L back to the feeding team. As she bluntly said L is nearly 3 and should not be relying on Pediasure milk to get her through. Her therapists were already working on a similar path hence the request for the video fluoroscopy which has been pushed back to April. We will also be referred to the gastro team. After mentioning a few times about Miss L's unusual bowel habits and the possibility of not absorbing all her nutrients they are able to check out her gut. If she isn't absorbing what she needs her body could be going through low cycles of being worn down like people do when low in iron etc. We also both get referred back to the metabolic specialist. The same Dr that requested the DNA sample....
http://itsthelittlethingss.blogspot.com.au/2012/11/appointment-from-hell.html
Dr Krezter is hoping if she sees both of us at once we may get an answer to my low B12 results and maybe another pathway of testing. Her DNA is still in Canada and has been since October 2012 with no answers.  Unfortunately we ended the apt with a request for more blood tests but also 2 stool samples....

Off we went straight away for blood as she wanted the most accurate picture which meant taking blood while in her no eating phase. After the last time of screaming and needing 3 people to hold her down I didn't hold my breath. Here it is 2:30pm on a Friday and I've had to ask a girlfriend to get the big kids from school and I'm waiting on another blood sample. I hate stressful afternoons. Miss L was fine when we went in and I laid her on the table. The same 2 phlebotomists seem to get us each time and even with their hundreds of patients they remember her. Well we are in there every few months... This time though she lay so quietly and just watched it all happen. She was twisting a bit though which slowed down the flow of blood but we persisted. I was just so happy to see no tears and a sense of calmness.

So we ended the very long day with 5 new referrals and a few private appointments which I hope don't cost the earth. The most important thing though is feeling we are back on track. Since PMH discharged us from therapy when she was 2 it was like the medical side was put on hold too. Fingers crossed these new pathways get us somewhere.

                      Making food fun...she managed 2 little squares after spreading butter everywhere.