Leukodystrophy

[mieow]

Just recieved Bethan GOS report and it says that her MRI shows Leukodystrophy
........... OMG hope its a typo!!!!!

Mieow, do you mean you just got this through the post without explanation or warning? You must be so worried. Hugs.

Mieow you must call your doctor and ask them if it is a typo and exactly what it means. Get an emergency appointment for asap so you don't sit there worrying. Big hugs to you.

Well we knew we would get a report as we had been to GOS in May. But normally its says that her MRI shows pertiverticar leukocemia, but this one says she has pertiverticar Leukodystrophy. Looking it up is scary, especially as they use a nerve test to dignosis this disease, and this was mentioned at the appointment alongside another MRI.

Definitely call the hospital mieow, you need an explanation as to why the diagnosis has seemingly changed, and you have been just sent a letter without explanation or a consultation to discuss it.

I have spoken to the Local consualnt, GOS haven't got back to me yet, and she hasn't recieved her copy of the letter yet so she can't really comment although she did said that GOS may have seen something on the previous MRI that Bethan had done at 13 months. Because the white matter that is present isn't 100% consitant with CP, they are questioning it, but Leukodystrophy??? Can't handle that!!!!

and its Bethans 3rd birthday today

mieow hope you get some answers soon. I'm sure it's a typo- surely they would talk to you first about something like leukodystrophy. Thinking of you and happy birthday to bethan.

I agree with Jimjams mieow, It doesn't seem likely that they would just send you a report wihtout someone sitting down and talking to you first. Fingers crossed for you, and many happy returns to Bethan!

It's pretty shocking in terms of the way they've behaved either way, though isn't it? Either they've sent a very worrying diagnosis unannounced or they've done it wrong. Neither inspires confidence. Happy birthday to Bethan from me, too.

mieow I hope it is a typo thinking of you at this time, been there with my dd-still am really-and know how you feel

HAPPY BIRTHDAY BETHAN AND HAVE FUN

I'll put some of the letter up here for you all.

problems
Spastic Diplegia
MRI shows periventricular leukodystrophy
Globel developmental delay
prematurity
family history of CP

Bethans mobility has become increasly more difficult, although she is walking, she is very unsteady. she falls frequently.
Bethab neurological examination is unchanged. Her upper limbs are normal. The tone in her legs is normal but the reflexes are brisk. She walks with a spastic gait

they want to see both Connor and Bethan in the neorology clinic in an attempt to clarify Bethans underlaying diagnosis........... what do they mean by that........ I thought she had CP!!!!!!!!!

Mieow, this must be worrying and I agree, it's extremely insensitive to write to you like this, whether they've made a mistake or not. I hope you get some answers soon and Happy Birthday to your dd.

mieow, I think they'll have said they want to see Connor because all leukodystrophies (as far as I know) are inherited, so seeing other family members might help the diagnosis. I know I keep saying this but how UNBELIEVABLY crass and unprofessional to send a letter like that. The sentence "MRI shows" could be anything, it could be really mild, but boy, they should really give you the full picture with advice and help or not at all. My blood is boiling on your behalf. All I can suggest, hopeless I know, is try to assume if the worst comes to the worst and it's not a typo that it MUST be very mild, or they surely wouldn't have just put it in a letter. I wish I could give you a hug.

Please please get onto GOS asap, as Lou says, mieow. You must be absolutely frantic with worry. How stupid of them to send you a letter like that. We all so wish we could help, I know, but no one can explain or reassure over the internet when there's complex medical stuff like this. Even if we were docs or something we haven't met and examined your little girl. Please ring the hospital now and demand to speak to whoever's there.

Happy birthday to Bethan. I hope she's having a nice day despite all the worry about her.

Mieow - when will you be able to speak to 'anyone' as GOS? I'm sure it must be a typo, but to send a letter like that is appalling . Try and enjoy the birthday.

Monday

I spoke to GOS today and she said that it is unlikely to be a typo but she would get someone to phone me on monday after they have been through Bethans notes....I'll let you know

mieow - just caught up with this thread. Hope Bethan had a good birthday in spite of your worries. It seems highly unusual to send out a report without discussing something with you. Hope you get the answers on Monday. Thinking of you...

Mieow, any news? Thinking of you.

not yet!!!!!!!!!

I know it's not much help, but just wanted to say I've been thinking about you.

Anything yet?

Yep, it WAS a typo........phew!!!!!!!!!

she has PVL and CP which we already knew