Long fight Ahead. My daughter has been diagnosed with an autoimmune disease

summer06

My daughter who became so unwell 3 months ago so suddenly after many test coming back negative and I was begging the consultant not to give up I pleaded and pleaded with him my daughter has been admitted twice to hospital and last week was the last straw as the consultant was putting it down to mental health and not physical health I begged the consultant that it was not down to mental health just because my daughter has special needs and Autism please don’t judge her because she’s non verbal whilst all this is going on my daughter is wasting away in front of me and I can’t help her. So I decided to bring my daughter home then 3 days later on Wednesday I got a urgent phone call from the consultant saying they have found what’s wrong with my precious daughter and my daughter had to be urgently admitted to hospital yesterday my daughter has a serious autoimmune disease the consultant said he was very sorry and he was wrong inside I felt validated! But Why !!! I’ve not done nothing wrong but the medical field made me feel that I’ve done so. I will always be my daughter voice because my daughter deserves to be heard just because my daughter is non verbal I will always make sure she’s heard . Sadly my beautiful daughter has large muscle wastage and now has to be fed through a tube she has a long road ahead of her but I’m always going to be holding her hand on her journey. My god there been plenty of tears fear no one especially people with special needs children/ adults should never be judged because of being special 

Sandy_123

Hi @summer06 welcome to the forum, I'm glad you were able to get a diagnosis and your daughter got the treatment she needed. 
We are always here to talk to and offer support.

summer06

Thank you so much it’s so hard as I don’t have any family support I just don’t want to feel isolated. Thank you for your kind words 

Sandy_123

Its good to have a place to be able to talk to others, about how your day is or what worries you have, or just in general. Sorry you don't have family support, your daughter is lucky to have you caring for her.

chiarieds

Hi @summer06 - welcome to the community, & I'm so pleased you have joined us all. As a Mum, I know you'd do anything for your child, & you know instinctively when something's wrong. I've had a few consultants acknowledge they were wrong before.....perhaps doesn't fill you with confidence at the time, yet I found each subsequently did their utmost to help both of my daughters..

I'm so sorry for what you & your daughter have gone through, but hope your daughter will now receive the best possible care. You are as much a part of her team as her Drs, & should be listened to. Please know you are among friends now, & not alone. My best wishes to you & your daughter.

summer06

Thank you so so much for your kindness I’m so glad I found this site I don’t feel so alone 

Indego123

God bless you and your daughter. Sending well wishes and prayers for a speedy recovery for her xxx

Tori_Scope

Welcome to the community @summer06 I'm glad you've joined us, and felt able to share you and your daughter's story so far. 

I'm sorry that it took a while to get the right diagnosis, as I'm sure that must have been upsetting for you both, but I'm glad she's been correctly diagnosed now. Well done for persevering and being such a great advocate for your daughter.

Although it may be a long journey, are you feeling hopeful that your daughter is on the right treatment so that she can start to get better now? We'll all be here for you along the way.

I've moved your post into our parents and carers category, and tweaked the title slightly. Please feel free to take a look through our other categories of discussion, or our list of the most recent discussions on the community.

I look forward to seeing you around!