To expect paediatrician letters to be written in simple language

[Hurr1cane]

Or at least explained a little bit?

After an appointment where he didn't tell us any results just asked more questions we got a letter that says

'Very long chain fatty acids'
'Prominence of pervivascular spaces in the peri ventricular white matter adjacent to bodies of lateral ventricle no perivascular spaces are noted between the basal ganglia on both sides the thalamus brain stem'

What the fuck am I supposed to even do with that??? Google is terrifying. I feel like just giving up!

Ds2 has a rare chromosome disorder I have found that what a lot of dr,s forget when talking to parent s is that we are not fascinated by their condition we just want answers these are our children we love them when ds .s disorder was diagnosed his paediatrician cheerfully told me we have found something I was terrified not knowing what the hell they had found he has another paediatrician now who.is lovely and e plains things properly I hope you get answers.

Yanbu the other thing I ask is if the child is of school age don't give them an appointment in the middle of the school day

Lunchpack if the clinic is full of school age children, how do you expect it to run if they aren't given appts in the school day?

these letters are meant for the GP and not the patient - as a courtesy patients get a copy. You should go to see your GP who will explain what it means. Writing discharge letters or letters following an appointment and tests is a very time consuming activity and so Drs write in their language rather than a long winded explanation for the patient. Your GP will be happy to translate.

I understand Doc, but these results were from a year ago. I should have been made aware of them. The subsequent letters I've got of investigations they're doing now make sense. I don't think it was done purposely, I think there's been a miscommunication in the handover to the new paed. I do understand it, it's just a horrible way to find out.

Been thinking of you OP. Glad you have had some help. Can I ask have they tested for Battens?

It is the worst thing to have to accept help, appointments that always seem to bring bad news, services you've never heard of and wanting to say to the ones you have that they must have you confused with someone else, your little boy won't be needing wheelchairs, tubes or anything else they care to mention.. its a scary time.
I hope you get some help soon and that you at least find out what you're dealing with x

Thank you. I'm not 100% on everything they've tested for but they've tested for a lot. To look at him you'd think there was nothing wrong with him, and that's what I think 99% of the time. He's my gorgeous little boy, but I don't compare him and track his progress, I just enjoy him. School do the tracking, then I take the reports to the doctors who then talk about horrible things.

oh Hurr1cane i hope you get answers

I have epilepsy and there is an epilepsy nurse who I can phone on her direct line. This is the sort of thing she could 'translate' for me. Is there anyone similar?

Hurr1cane I am glad someone has already explained the report. Just to say I have always copied letters to patient/parent. If the letter is to GP I would expect the GP to be able to understand, if not I have done a pretty poor job of writing my letter. But I often wrote letters to tertiary centres about conditions I did not understand, I was asking for their help. And there were often long chunks, lifted directly from reports, and these were always copied to GP so that the information, in all its detail, was in primary care records. If I did not understand what was going on, I doubt the GP did and can see this would be even harder for the parents.

To answer your question: YANBU, just pointing out a possible explanation.

And I do not want to hijack your thread but: from what age should the doctor copy the letter to the child rather than parents? Any views? Answer on Children's Health.

It depends on the child doesn't it? DS won't be able to read, but I just open his post anyway. Maybe 16?

Apologise for hijack, for you and to share. Any other replies on Children's Health please (I am going down in flames, might be worth a visit if you are a regular on AIBU!) but rather post an [fglum].