Still No diagnosis

[MJeffrey]

Morning all, my son still has no diagnosis but improving with rehab. Apparently, the eyesight problem (blurred and double vision) has always been there but in the past his brain compensated for it, now it doesn’t know how to do hopefully this will improve with time.

My concern is, because they can’t find a reason for this happening and all tests have been negative, he tells me he has been told doctors are just going to leave him to rehab now, this concerns me because he tells me he still has headaches everyday and, if they dont know why this brain injury occurred, what’s to say it won’t happen again, also my son is a twin, so what if there is something underlying which we should know about for the other son?

[Kirk5w7]

You know you can worry till the cows come home but it wont change a thing, except cause you problems.

I know its not easy, but you have to or your life will become much worse and youll not be able to give yor sons the help they need in life.

I suffer from pressure headaches since my BI, and only lately have i been prescribed something that dealt with them, paracetamol and ibuprofen were no help.

My consultant at rehab eventually prescribed me pregabalin, my GP was no help. 6 years i put up with losing about a week out of every month because of them.

Since your son is still getting rehab help if they are really debilitating he must insist he gets help. Headaches after BI are very common, but if they are manageable with over the counter meds there will probably be no intervention.

Because they cant find a cause there will be no treatment to give, because they thought mine was viral they gave me Acyclovir which is a general antiviral but they also gave me antibiotics in case it was bacterial and also steroids to help my immmune system. So they were covering all bases to give me the best chance, but there were no guarantees it would work. And dont forget i was in a coma with minimal brain activity, they thought my organs would fail. Your son needs to concentrate on his recovery now, sonetimes we are unlucky when we fall ill and there may be no genetic link for this.

When my sister found she had a large aneurysm i was told i would not be screened because it is just too expensive to routinely do family members, even though we also have a cousin who died from a burst aneurysm and my sister’s son has just died from a massive cerebral haemorrhage,

Please try to move on, sometimes there is no reason, as i said we are just unlucky.

Janet x

[MJeffrey in reply to Kirk5w7]

Thanks Janet, you are absolutely right. Steven also was in a coma and in an incubator for 2 weeks so yes, I need to concentrate on the progress he has made. Thanks for the response. It is also good to hear that the headaches may just be a left over side effect and not something more serious. Marie x

[StillDave]

I never received a diagnosis. A suspected encephalopathy is about the best the doctors could come up with.

Uncertainty.

This leads to anxiety. It’s normal. Who wouldn’t worry in a situation like the one you find yourself in.

Turning the “what if’s” over in your head will wear you down psychologically.

Try to focus on the positives, like your son improving and the fact that there is no underlying disease, no tumour, no surgery is required, there’s no stroke, no bleeds.

For now try to take so solance in those facts.

I’ve been there too. I known how difficult it is.