Miss A was such a happy baby who was breastfed and meeting her milestones on time. Around 8 months of age we were still breastfeeding and also having small amounts of solids. She wasn't sitting yet but was rolling. It was at this time that a few health problems were noticed. She was losing weight, was constipated and often had long periods of being upset and crying. We went and visited the Paed who started looking at her diet and possible allergies. She was tested for food allergies and noting came back. Around this time the constipation become a big problem and I clearly remember one scary day. Her bottom had split while trying to poo and the poo had blood in it. I rang the Paed who told us to come straight in. We were then sent off for blood tests and the C word was mentioned- cancer. Her weight loss was becoming more evident and her stomach was distended. We went for x-rays and ultrasounds of her stomach and bowels.
The blood tests came back with nothing which was a relief but the scan showed her bowel was backed up and she had impacted poo blocking her intestines. The paed thought it was then an allergy to milk.
At this stage she was only eating a few solid foods so we cut out the breast milk and all milk in her diet. I literally left the Doctors office and didn't breastfeed her again. She started on a formula of Neocate and a dairy free diet. After a few months we started to see an improvement but being ill she had fallen behind in her development.
At age 1 I went to our child development centre and talked to the nurse about her development and what she should be doing. She sent me hoe with a questionnaire about development in all areas. That was such a sad moment. Age 1 and she wasn't talking although we had a few babbles. No waving or saying bye. Not sitting unaided and not walking..... It was a wake up call.
After I returned the assessment we were told she would be referred through to our local development centre. That was a 4 month wait and age 16 months she was assessed. They had a developmental paed, OT, speech and physio and they did the Griffiths Development Test which I have talked about before. We started therapy straight away and it was quite intensive. The speech therapist was concerned that at age 16 months we hadn't heard a word and noticed she had difficulty making movements and shapes with her mouth. The physio was working on her walking and strength. Although she was now walking she wasn't stable and still had a wide based gait. At this stage the Paed said he had some concerns but wanted to wait for the therapists to talk. He advised us he wanted her to have an MRI scan of her brain done just in case. We were never told what he suspected and were left in the dark.
Age 18 months we went to PMH and Miss A had an MRI brain scan under general anesthetic. She didn't come out of the anesthetic too well and still doesn't :( Very stressful.
I don't know how it happened or why but it was 12 months before we saw the Neuro and got the results. I now know that 4-6 weeks is usually how long you wait so obviously something got lost or someone stuffed up!!! When we finally saw the neuro, Dr Phillipa Lamont she explained what was seen on the MRI. Basically the area at the back of the brain (cerebellum) showed a slight shadow which showed damage and the white matter of the brain was reduced. Over all the diagnosis came from what was seen on the MRI and a physical assessment. Ataxia means her whole body was affected not just one side. At the time of diagnosis several things together led to diagnosis ataxia, these were:
Tremor in the hands while reaching for things or touching
Tracking issues with her eyes, they were static and jerky instead of following an object smoothly
Jerky movements when walking
Perception issues with depth and tracking. ie couldn't see how far down a step was or tracking objects around her while walking.
Difficulty balancing even with both legs flat.
Loose jaw muscles affecting speech
Wide based gait when walking.
Some details of ataxia can be seen here: Ataxic CP
So with a final diagnosis at age 2.5 years we were on the pathway to getting some serious therapy and help for Miss A!
Here is a little bit about when she hit her milestones. I always get asked about that but don't forget she is only mild with her cerebral palsy.
Sat up 8 months
Attempted crawling 12 months
Waved goodbye age 12 months
Weight 12m 9.27kg
Weight 16m 10.5kg
Walking supported 13 months
Started using a spoon 20 months (first attempt)
First sentence 30 months
No comments:
Post a Comment