As we get closer to spring the weather is getting warmer and I am really looking forward to warm summer evenings, swimming with the kids, green lawns and pretty girlie dresses. Bella is doing reasonably well. Her stomach is not where it was before the tummy bug and measles vaccine but is getting there. She is also getting her bottom molars and is miserable from those. When she is uncomfortable or sick she is a completely different child and really struggles to self soothe. I’m really hoping everything normalises again soon so she can at least look at her iPad rather than trying to chew it…
We are seeing Bella’s neurologist on the 16th of August and we will discuss what to do with her medicine. So far we are dropping her Tegretol dose slightly but Dr T is not keen to wean it off completely and have her on Keppra monotherapy . Bella has been seizure free for 18 months and has had numerous normal EEG’s so when is it going to be ok to wean her of at least ONE drug????? Has anyone been in a similar situation? Dr T’s rationale is that Bella has Cortical Dysplasia / Polymicrogyria as an underlying pathology and suffered severe seizures (up to 30 a day) and it is therefore risky to go from Polytherapy to Monotherapy. I am going to request that we do a follow up MRI now as the last one she had was at 1 year of age. I would like to see if her delayed myelination has improved and if the Polymicrogyria is clearer / more defined now as the last MRI report said, and I quote “There may be a mild form of Polymicrogyria in the….”
I spent quite a bit of time talking to Bella’s OT today. I have been concerned that Bella doesn’t seem to understand much which really doesn’t seem to fit as she is a very curious child, always exploring and playing with new things. She is very interested in her environment and has bright sparkly eye. I often feel that she doesn’t understand anything I say which just seems very strange to me. Bella’s OT explained to me that children with delays in the motor planning ability often appear to not understand anything because they don’t have the motor planning skills to respond but it doesn’t mean that they are not understanding. This is quite an interesting concept. Anyone of experience or thoughts on this? Next week we are doing an intensive OT week with OT every day. This is something I have wanted to do for a while and it just so happened that Bella’s other therapies were cancelled and Bella’s OT had extra space for us.
I have been worrying quite a lot about Bella’s development lately. My worrying seems to go in cycles and I guess I am in worry mode at the moment..
I spent quite a bit of time talking to Bella’s OT today. I have been concerned that Bella doesn’t seem to understand much which really doesn’t seem to fit as she is a very curious child, always exploring and playing with new things. She is very interested in her environment and has bright sparkly eye. I often feel that she doesn’t understand anything I say which just seems very strange to me. Bella’s OT explained to me that children with delays in the motor planning ability often appear to not understand anything because they don’t have the motor planning skills to respond but it doesn’t mean that they are not understanding. This is quite an interesting concept. Anyone of experience or thoughts on this? Next week we are doing an intensive OT week with OT every day. This is something I have wanted to do for a while and it just so happened that Bella’s other therapies were cancelled and Bella’s OT had extra space for us.
I have been worrying quite a lot about Bella’s development lately. My worrying seems to go in cycles and I guess I am in worry mode at the moment..
Other news..
It looks like I am off to London again in October for work so I can see Helen. We are also going on a family holiday in October which Max is super excited about!! Max my darling boy, how I wish I wasnt always so distracted and thinking about Bella. I am really trying not to be!
We weaned off Tegretol onto Epilim quite successfully but Violet did have a break thru seizure while doing so (luckily her most mild one to date)
ReplyDeleteIt is a huge decision, but you need to let the Dr's know your concerns (as I am sure you will)
Even tho it's great Bella's had some good EEG's, she is still on 2 seizure meds, so might make an impact coming off either one or both, especially as she has the polymicrogyria.
Another MRI sounds like a good idea to me.
cathy for fine motor we have had GREAT results with an anti-fungal Nizarol, bounce the idea off your dan doctor. there are a few types, some respond well to certain and others not, we have tried diflucan but did not see much...with nizarol had some die-off symptoms (lots of tripping/clumsiness) and then she suddenly starting holding a pencil correctly and undressing a barbie which was impossible for 2 months ago...email me for more info if u need.........
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