I just want to say first I do have professional help and regular profession check ups. I'm just after other people's experiences. I have had a doctor look at her but she wouldn't co-operate because it was super late. I will be taking her to the dr again tomorrow for another review. So please don't comment saying I need to seek medical advice because I have and will continure to do so. It is not an emergency so I will not clog up the emergency room but she will be reviewed again tomorrow. I just want people's thoughts/experiences and opinions.
My daughter had hydrocephalus and intracranial hypertension (3 time the amount of fluid and pressure in her brain) along with mastoiditis a year ago. They said the hydrocephalus and intracranial hypertension was due to the mastoiditis. Now this took 6 months for them to pick up the mastoiditis and numerous dr visits and one being a paediatrician. When they were doing one of the numerous surgeries needed they came across the fluid and pressure being 3 times the normal limit. They drained it back to normal level.
What I want to know is would the hydrocephalus and intracranial hypertension be from the mastoiditis? I can't find anything to say it is but that is what I am being told by specialists. I've always been sceptical about it being from the mastoiditis.
I'm wondering this because lately she just hasn't seemed herself. Super sooky, naughty, concentration is poor (even her extracurricular activity teacher has noticed the last couple of days a big difference in concentration), she has vomited once being awake around a month ago and than again yeterday vomited her morning drink up instantly she'd been up for 5 mins. She said she needdd to lay down and after a bit ate breakfast and was fine. Went about our day normally.
Well today she had a sip of her morning drink and that was it and laid on the lounge. Went about our day as we normally do. Picked her up she was sooky. Went to our extra curricular activity and gave her Panadol on the way. She sooked so bad couldn't concentrate, not listening and lesson was ended early. On the way home she goes mummy I feel dizzy. I tried to get her to explain but she couldn't she was super quiet and not talkative. She goes mummy I just need to have a little rest. Get home and she's still saying she feels unwell laying in the lounge. She said her forehead hurt. She also said her whole body feels weird. Laid there for ages wanting cuddles and not doing a great deal. Her afternoon activity wasn't anything that would make her dizzy.
Dr has tried to look at her but had difficulty due to it being late and I've been advised to see the gp tomorrow.
Does anyone have any experience? If the hydrocephalus and intracranial hypertension was caused due to he mastoiditis could the hydrocephalus and intracranial hypertension come back?
Or if it wasn't the mastoiditis could it be increasing again? She had loads of surgeries and did have it drained back to Normal level but never had a shunt as they said it was due to the mastoiditis. It's been around a year since the surgeries and I'm just wondering if it would be increasing?
Thanks

2 Replies
Hey, as a mum of a complex needs child I felt the need to say something.
This won't go to Facebook for about a week so chances are low that someone with actual experience will respond with actual knowledge.
I wish you all the best and hope you find answers soon.
I had similar symptoms when suffering ice pick headaches and migraines. Vomiting up food or drink and slept then was fine. My whole body felt different.