7 year old boy with Neuro Behcets: Hi there we... - Behçet's UK

Behçet's UK

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7 year old boy with Neuro Behcets

Rachcharris
Rachcharris

Hi there we have a little boy who has just been diagnosed with Neuro Behcets.. We were wondering if there are any parents out there with young children with Behcets? Thanks and hi to all?

Rachel

11 Replies
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He's only 7? That's so sad...I have NB, and though my heart is heavy at the prospect of someone so young to have to deal with this, I myself was a teenager when first symptoms showed up, I do have good news, as my symptoms haven't stopped me from living a very full life. I wish I had more advice to give, but I don't.

I'm 31 now with two children of my own, and though there are times that make me slow down a bit, here and there, as of right now, I feel as sharp as ever and it's only my love for sweets that keep me from running a marathon.

Good luck...and I hope he feels better soon!

Sorry to hear of your child's BD.

I am not a parent to a child with BD. I was a child with undiagnosed BD. My symptoms started at around age 8 or 9. The symptoms did not stop me from havng a normal life, but not as full as one would normally have. There was usually something that sort of contained childhood joys - headache, achy joints, etc. The pain was not unbearable, but what I found very difficult was the attitude which suggested that I could simply be imagining things.

My Main message is: life with BD is difficult. The support of those around us is very important - even something as simple as being told that those around us understand why we are unable to be a "perfect, smiling happy kid" on certain days.

Best of luck!

Hi Rachel

I would say welcome to this group (which you are) but with all my heart I wish you were not here.

Yes there are other parents with children with Behcets - children of all ages - I am not sure where you are but there are Facebook groups - if you join the Behcets Syndrome Society one I can signpost you further from there

In the mean time you are not alone - we are here for you - and please look after yourself as well

Amanda

Our daughter was diagnosed aged 4. If you put a lock on your post you may receive more replies on here. Send me a message if you like

Hi Rachel,

There's a group for Behcet's parents on facebook. You can ask to join the group on their main page: facebook.com/groups/5423997...

Joanne Z.

Hey Rachel my daughter was diognosed with BD when she was 17 but suffered with it a long time before the dr knew what it wAS ,

She started with pain in her belly and blood loss from her bowels it got so bad she ended up in icu at the age of 15 with emergency surgery to remove her large cool as they thought she had ulcerative colitis , so once that was removed she was suppose to be better, little did we know that was just the start of her illness she started getting ulcers in mouth throat genitile area and even in her ovaries she had been hospitalized around 6 times with pancreatitis Drs not able to find the cause of it , then last summer while on vacation she took sick suddenly pains in her belly a ongoing cough took her to hospital the emerg would of let her go that evening only for the fact I always carry a dr note for any emerg we end up in asking to always keep Cora in all nite for observation , so they did thank goodness cause that nite she took a turn for the worse was sent to icu Dr telling us they didn't know if she wAs gonna pull through :( but she did 2 weeks in icu she was finally put up on the main floor drs told us her lungs was full of fluid and scars on her lungs , months later she was hospitalised with severe headaches worse then any miagrane she said they did spinal taps came back negative Mri showed scaring on the lining of her brain !!! So after that long journey from age 12 to 18 she has finally been diognosed with BD her eyes bother her as well now but she is now taking imuran along with weekly injections of humira which has been a life safer for her :) so that's my girls story she is at this moment in hospital for the reversal surgery of her colon she's such an inspiration to me and all the medical team that has taken such care of her over the years :) just felt impelled to tell u her story and your all in our prayers chin up our little ones are stronger then we think at times :)

Hi I started with symptoms at 17 but not formally diagnosed until 41. My 13 year old daughter has BD startled at 6yrs & formally diagnosed at 10yrs. Now on a mixture of medicines as well as 4 weekly IV Infliximab. As of Feb this year, the rheumy also thinks my 11year old son also has BD. He is affected differently mainly ulcers & lung complaints.

If you want more info I'd love it if you could please place a lock on.

We have had difficult and scary times but at the moment life is perfect. My daughter is having the best 6 weeks in years. We never think about the past, live for today.

To have a diagnosis gives you knowlage. The people you encounter on this sight are fantastic. When I had a question regarding the drugs normally one or more people had their story to tell, good or bad but I was informed. Power...

Love to you all

Thanks everyone for your responses... I saw a few mentions of locking posts... How do I do this??

Thanks for your heart felt replies and the really personal stories... We are really scared at present with it now affecting his brain

James had previously been diagnosed with chrons ...

He has spent the last few weeks in Birmingham children's with autoimmune encephalitis

I'll say more when I've locked the post xxx

We are in the UK near Derby xxx

I live in Derby - if you send me a private message I will giv eyou my number

I think to lock you click on or below the title of your post and select "community only" in the drop-down box.

Hi

Sorry to hear that your 7 year old son has Neuro Behcets.

Some really excellent information about Neuro Behcets is here

ncbi.nlm.nih.gov/pmc/articl...

This is a medical paper written by a group of experts on Neuro Behcets. Dr Al-Araji is based at University Hospital North Staffs.

I have had Behcets for over 20 years and lesions on the brain in 1995 - so I think sometimes when you hear something like this, you immediately think the worse but hopefully with the right Doctors and right medication there is some hope.

I wish you well on your journey.

Regards

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