Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

1 2

Original poster

My daughter has M.E.

34 replies

speedo · 14/05/2003 19:02

Hi, I'm new to this site.

My daughter is 13yrs old and has had M.E. for nearly 3yrs now. I would love to hear from any Mums or Dads whose child has M.E. or is recovering from M.E.

OP posts:

lou33 · 14/05/2003 19:39

Hi speedo,no advice from me, but just wanted to say welcome, and hope your daughter recovers soon.

jodee · 14/05/2003 20:23

Speedo, welcome from me too - no advice either, but I'm sure you will get lots of support from this site.

milch · 14/05/2003 20:55

Hi speedo. My sister has had ME for a number of years and has tried all sorts of treatments. I think the best results for her have come from acupuncture and vitamin infusions. Also the 75% rule - only ever do 75% of what you think you are capable of. ie rest before you get tired.

Good luck to your family and your daughter. People do recover from ME, though recovery is often a matter of definition.

eidsvold · 14/05/2003 21:31

welcome speedo..

MABS · 14/05/2003 21:49

Speedo - would love to know how it was diagnosed initially. My dd is 8 and has been very poorly since Xmas. Saw my gp yesterday and she said it 'may' be ME..

ThomCat · 15/05/2003 10:43

Hi Speedo, welcome to Mumsnet, I'm pretty new myself and totally hooked, it's fab for about 103 different reasons! Hope you meet up with someone who you can share ME type stuff with but look forward to chatting to you about general special need type stuff not to mention all the pother great conversations going on.

Original poster

speedo · 15/05/2003 17:08

Hi,

Just wanted to say "thank you" for your kind words and support with regards to my daughter. I look forward to chatting to you all again very soon.

OP posts:

Original poster

speedo · 15/05/2003 17:15

Dear MABS

Sorry to hear about your daughter (again new to this so does dd mean daughter?).

My daughter first started off with symptoms of headaches, sore throats and very, very tired. Kept going to School for a couple of weeks then had to have a couple of weeks off to recover. This went on for a couple of months until my daughter had a "black-out" at School. She was very poorly. She could not move off the settee, stand up on her own, slept all day, bright light hurt her eyes and looked very pale with bright red cheeks. We eventually got diagnosed by a paed. Since having M.E. she has became a lot worse with other symptoms. Too many to mention.

I wish your child well very soon!

If you would like any more information then please, just ask.

OP posts:

Jimjams · 15/05/2003 20:11

This link might be interesting

osiris.sunderland.ac.uk/autism/hplc.htm

It's a bit scientific! However it's basically talking about a compound called IAG which can be found in the urine of some groups of people. One big group is people with autism. However they have also found it in people with ME. It means the gut is leaky- and for autistic children/adults a gluten and/or casein free diet has been found to be very helpful. It might be worth contacting the unit to ask for some advice (they mention this at the end of the article). Paul Shattock -who runs it is lovely- and I know they are very interested in the link between IAG in the urine and ME (and also Gulf War Syndrome).

The diet is a bit of a pain in the neck (!) but we've found it made an incredible difference to out autistic ds1. I am a bit evangelical about it but I do always mention it- just becuase I think it can make a real difference for people with IAG in their urine!

Chinchilla · 15/05/2003 20:48

Hi Speedo - glad you made it onto here!

ks · 15/05/2003 21:37

This reply has been deleted

Message withdrawn

windmill · 15/05/2003 22:15

Never looked at the special needs before, so glad I have. So sorry for her, know what's shes going through. I developed ME when I was 14. It's awful and the symptoms are so severe and there can be so many of them you can get very negative reactions. You're a hypochondriac or lazy. Especially back then, ME was virtually unheard of. Even when it was finally recognised of course there was nothing the doctor could do.

I got really depressed by it and then they convinced the depression was causing tiredness not the other way round and I had antidepressants forced on me.

This is why I became interested in alternatives and eventually became a therapist myself. I used to hate it when people said I'd get better but believe me you do and its not necessarily a matter of waiting for it to go on its own. Like I said I turned to alternatives and combining certain therapies together I recovered, although I had it for twelve years and it does come back sometimes. They say eventually you gain 50% of your former health back but I have never felt better. I would say look into natural medicine straight away. It may not cure her, I was lucky, but you should at least be able to provide some relief of symptoms even if it doesn't work as well as it did for me.

windmill · 15/05/2003 22:16

ks, diagnosis is based on exclusion of other problems

Jimjams · 15/05/2003 22:23

windmill- what alternative therapy do you practice?

windmill · 15/05/2003 22:24

several!!!!

Jimjams · 15/05/2003 22:26

Go on name them! I'm training to be a homeopath- very slowly..........

windmill · 15/05/2003 22:29

herbalism, massage, shiatsu, acupressure, nutrition, colour and crystal therapy, homeopathy, reflexology, herbalism

Jimjams · 15/05/2003 22:35

wow!!! You forgot osteopathy

windmill · 15/05/2003 22:37

Actually was going to go in for that but didn't want to live in London or Kent for four years!

ks · 15/05/2003 22:42

This reply has been deleted

Message withdrawn

Jimjams · 15/05/2003 22:43

good point windmill. I have a very good friend with ME- he was training to be a herbalist. I think he found alternatives helpful as well.

Certainly for a damaged immune system I have found homeoptahy very helpful (and I came from a Science background with a -pah grain of sand in the english channel type attitude). It's been a great help for ds1.

windmill · 15/05/2003 22:47

ks bear in mind some doctors even today are very reluctant toi consider the possibility, especially in shildren as they can play on it for attention; its a shame they are like that but there you go. Not that there's much the doctors can do but its nice to have a diagnosis I think, otherwise you worry about cancer, lupus, etc

windmill · 15/05/2003 22:49

did you see that horizon programme at 9 tonight about homeopathy, I was diappointed when they said there was no scientific proof

Jimjams · 16/05/2003 07:27

I've heard the about the horizon program. I didin't know it was on last night. I think they asked the wrong questions didn't they.

I am feeling very sad at the moment (why I am on here so early). I have just receievd a letter saying that my homeopath has died. In the last year he has treated my two ds's (and made a real difference to ds1- he really understood him- Neon was amazing), my Mum (who was desperately losing her hair and now isn't- she's already seen specialists etc) and dh (who has stopped having panic attacks). He was a really lovely man. I only rang him about 10 days ago as ds1 had refused to to a wee for 40 hours. dh only saw him last week.

Anyway- need to go an email the person who sent the letter as I would like to a least send a sympathy card to his wife.

eidsvold · 16/05/2003 07:48

Jimjams - sorry to hear that .... what a shame.

Flip

1 2