I wonder if I could possibly ask advice of those of you who have been here before.
My little boy has just been diagnosed with global hypertonia which is worse on the left side, he has been very stiff since he was born and initially his legs were so stiff that it was often difficult to change his nappy. Since being six weeks old he has been so stiff that we can literally prop him against the couch in a standing position for a few seconds (don't worry - our hands were right there to catch him). He struggles to use his left hand to reach for things, though can now suck it quite effectively and neither arm goes higher than his mouth very easily. When we are holding him, or even if he is lying on the floor, he often goes even stiffer than 'normal' and when he doesn't have a nappy on his legs scissor fairly frequently.
He also struggles with feeding and with putting on weight. He's been breastfed since birth, but it is somewhat of a battle and he often chokes on the milk. We've tried him with a bottle but although he will happily suck on it when it is empty, he chokes as soon as any milk comes out of it. He is very sleepy, and is still rarely awake for more than an hour at a time. Though when he is awake he is extremely alert and smiley, at least for the first half an hour before he starts to get sleepy.
He's under a paediatrician and been seen twice by physiotherapy, he's also awaiting an ophthalmology appointment as the paediatrician doesn't feel his peripheral vision is as good as it should be, and an appointment with the feeding clinic. He has had an MRI which has come out clear, with the caveat that it will need to be redone when myelination is complete. I'm a special needs teacher, so although no-one has come out and said it, my (educatedish) guess is that we are probably looking at some kind of cerebral palsy.
I'm pragmatic about the future, he is my much wanted little boy, we worship him now and whatever the future brings no little boy will ever be more loved. I feel like I'm ok with sensory play and that iif he struggles with communication I know where to start (I mainly work with children with Autism), but I need to feel like I am doing the right things to help him now, especially in relation to movement and the feeding/ choking issues we are having. So if it's ok, I have a few questions:
1) Do any of you have experience of doing Bobath with such a young baby? Do you feel he is too little and would benefit more later, or is it a case of the earlier the better?
2) Have any of you had a baby you has struggled with feeding at the milk stage due to hypertonia? How did you get round it? Did they cope when they went on to solids?
3) Have any of you had a baby who chokes on his own saliva at night? How did you manage to sleep without worrying when they went into their own room? Did you use a special monitor?
4) Did any of you find that your baby seemed 'better' after vaccinations than on a normal day? We gave calpol as advised after the eight week and 16 week jabs, and unlike the other babies in our friendship group he sailed through it - fed well, was happy, slept much less than normal, was less 'grumpy'. We are now wondering if he is in pain on a normal day?
5) Is there anything else we should be researching/ doing at this point?