Newbie.

[Aliscarlett]

Hi everyone,

My 6yr old daughter has been referred to Birmingham as the rheumatologist has said she has "probable behcets". The past year has been a nightmare. She always suffered from mouth ulcers since she was about 3, but the GP did not seem concerned, then last July she got Scarlett Fever, since then all sorts of symptoms seem to have erupted, the mouth ulcers are present nearly all the time, she has headaches a lot and stomach pains that have been so bad she's been doubled over, also skin rashes and swollen joints (she also has hypermobility) and in the next few weeks is having a hearing aid fitted as she has permanent hearing loss in her left ear. She's also missed quite a lot of school due to hostpital admittance and being generally unwell.

I'm a single working mum and the stress has been immense! Thankfully my work have been very supportive, and I have a good set of friends, but I am struggling at the moment so any help would be greatly appreciated. My daughter copes amazingly well with it all , even though she is in pain a lot and has to have support at school.

[andreafm]

sorry nobody has replied to you....it may be because your post isn't locked and some people don't like replying to unlocked posts as their reply and your post goes all over the internet and so can be read by anyone.

What you can do...if you want to, is click on the little downward arrow next to the word button saying "+Follow post". It then gives you the option to edit your post and if you click on edit it will open the post settings.

scroll down the page until you see the button "community" and click that. Then save it and you will notice a padlock just under the title.

This will mean that you post is then only being read by members of this group.

[Michja]

Hi I'm in Australia and I have a now, 13 year old with BD. Symptoms started at 5-6yrs. This is a very difficult time for you both. I don't like to go on about what we have be through but it's heaps. I think you can go the side somewhere & check it out. I also have BD & colchicine helped my daughter & my symptoms. As your Dr. I hope you both get a break soon. X

[jzeis]

Hi Aliscarlett,

It's so sad when a child has these symptoms As a mom myself, I bet you'd give anything to take away the pain and symptoms she's dealing with.

There's a group on facebook called "Parents of Behcet's" that you might find helpful. If you're interested in joining, please send me a private message with your email address. (The group is "closed," so you need to get an invitation from a current member to join.)

Wishing you and your daughter all the best,

Joanne Z.

behcetsdisease.com

[Aliscarlett in reply to jzeis]

Hi there,

Thank you for your reply, I actually watched the programme you appeared in.

I'm not on Facebook unfortunately due to my job as I work in child protection. But I'm hoping if Scarlett is diagnosed then I will have access to a support worker as its a nightmare at the minute. My Gp will not touch her due to her complex needs and with her hearing loss I got leaflets shoved in my hand and told to join the society for the deaf! ( I'm still struggling with that).

[2106]

I have had mouth ulcers for year's, sometimes 20/25 at a time. I use a Aloe Vera toothpaste as it is a natural product but also quite soothing. Give it a try can do no harm. Also look at diet as some things can agitate and make the mouth worse. I feel really sorry for your daughter I know how I feel but at only 6 she is very brave and my heart goes out to you both. Hopefully they can get her symptoms under control.