Lets all welcome Jamie Newman all the way from Hertfordshire in the UK!
This may be the youngest patient we have in this community! The best thing to do is to not panic and simply wait for your 19 month old’s appointment with the doctor. At this point, doing lots of online research may simply stress you out even more! On the other hand, you can use this community as a way to understand your child’s condition and symptoms more.
I encourage you to get involved in the community - there are several other patients who are here on behalf of their young children. Get involved in the discussion and ask questions if you have any! This community is here for you.
Thank you for accepting me into this group, I have already received a lot of comfort from reading other people’s posts and seeing how supportive people are of one another.
Initially I needed to do as much research as possible (my OTT mum’s way of gaining some form of control over this). But I have stopped this week as it was becoming a bit too consuming!
I do have a couple of questions. My boy has type 1 and as of yet I’m not sure how extreme it is! I know he gets the headaches as he stops and holds the back of his head and say ‘oww’ but this doesn’t seem to stop him from getting on with life. I do also believe he has sleep apnoea. My questions are
he has phases where he will blink in a really exaggerated way and quite fast, it’s not like a twitch, it’s a conscious move that he is doing but it is as if something is bothering him. Does anyone know what this may be?
as I read it can be a hereditary condition (and both me and my mum seem to have several of the symptoms) is this something I should have my daughter tested for? She is 8years old but also at times has a few of the symptoms?
it appeared from what I have read that a syrinx is the most worrying element to this condition (please correct me if I am wrong), what would I be looking out for if this happened?
How often are appointments and MRI’s needed?
Thank you for reaching out to me. Anyone’s views would be much appreciated, even if just to tell me I’m being over the top - I know I’m a very OTT mum.
Hi Jamie
My son is 16 and has chiari and had surgery.
You are not OTT - just remember that - you care and love your son and want the best.
You go girl!!! You get the answers you want and never question yourself. In fact you demand answers and do not take no for an answer. Do not ever feel you in the wrong. I have had awful doctors and I wish I just go up and left.
All of what you said is correct from my research - the blinking, the headaches and it been hereditary. We were told to have surgery only if he had syrinx - it was more a wait and see because sometimes the skull can grow and and he can land up only having minor symptoms. Remember surgery is not a cure - he will have chiari for the rest of his life. I know is he only 19 months old but when he is older only tell him what he needs to know. From my experience with my son - chiari has flare ups - I am almost convinced it is linked to hormones. His symptoms started at 7 years old and died down for 1 a year but we still did not know what it was after going to doctor to doctor. Then at 8 years old it started up again and then when he was 13 we discovered it was chiari. He had surgery and was perfect until 16 and then the symptoms came back - he was off school for a year - he only went back yesterday