All the doctors we’ve spoken to about Mattie and his condition have commented on how little information is available. When we ask about treatments we get the same response - “we just don’t know”.
It appears to be a common refrain from doctors when speaking about Infantile Spasms. I found another blog about a family also coping with Infantile Spasms and the last entry concluded with the following lines:
The truth is I’m tired. I’m tired of hearing “we don’t know” from doctors. I’m tired of all the appointments. I’m tired of all the tests and procedures. I’m just plain exhausted in every sense of the word.
Emma found a fantastic Facebook group of parents who are all dealing with children who have infantile spasms - there are over 500 members, coupled with the blog posts and other data shared by parents which emerges from a quick Google search. There seems to be a wealth of information available from some very knowledgeable parents.
It reminded me of some of the big data discussions I had earlier on this year. I think by combing all this already existing knowledge we can produce a fairly large collection of data…. with all these cases, and all these parents, how can there possibly be “no data” ?
Before going further with this I’d need to verify the cause of the lack of data, it would be good to speak to a researcher in this field first. My ex-boss told me that an old health related project had, the company had in the past made contact with Trinity College, and with Ian Robertson. It would be great if I could follow up with him. - That’s another task to put on the to do list.