All advice welcome and needed!: Hi my name's... - Behçet's UK

Behçet's UK

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All advice welcome and needed!

Levs06 profile image

Hi my name's laura, I stumbled across this forum endlessly scrolling the net for answers! My 3rd daughter is only 11 months old but has been recently been put under paediatric specialists to try and figure out what is going on , with the potential diagnosis of behcets top of the list! I know she's very young and this disease takes years to diagnose so as you all know from similar situations I am quite worried. Two members of my parteners family have behcets all ready so I'm guessing there is some genetic predisposition but I honestly know so little I don't want to appear ignorant. If anyone has advice on symptoms from such a young age and advice on what to look out for it would be greatly appreciated! I'm at a stage where I don't know if she has so many symptoms or my paranoid brain is connected them to the illness. Thankyou all. X

13 Replies

Good morning Levs06

I'm so sorry to hear that your daughter is having such a rough time so young. I have an 8 year old daughter, that was recently diagnose with behcets disease after 5 years of fighting to figure out what was wrong. She became really sick at the age of 3 years. But I do believe she was showing sign even before that. My advice is keep a diary of all symptoms, and take lots of pictures too. You mention that's there's two people with behcets disease in your family already, I will ask the doctors to do a blood test and check for the HLA51 gene, this gene is associated with behcets disease and since you already have two members in your family is worth checking if your daughter carries it. Your definitely not paranoid, but I can understand how you will think that, as I thought that at time, and was also told that by many specialist. I will also advice you to have a look at her genital area for ulcers too, remember keep notes with dates and time and lots of pictures. I hope this helps and feel free to have a look at my previous post it may help you. If you need further information please contact me. Hope your daughter starts to feel better soon. X

Levs06 profile image
Levs06 in reply to Dolores81

Thankyou so much for your support and info. I have noticed ulcer like sores on her genitals but they are very small and always accompanied by a very bad nappy rash so harder to see properly! Did you notice your daughters and what did they look like? My daughter always has very bad runs and stomach pains at the same time and a high temp, pinky eyes and really bad ears that weep! She is also intolerant to dairy but it's hard to tell what she effecting what? Thankyou again x

sam0511 profile image
sam0511 in reply to Levs06

I am lactose intolerant too. Avoid giving her anything anti-inflammatory - medicine, topical cream - even food with anti-inflammatory properties. Poor little mite. I hope you get answers soon. x

Dolores81 profile image
Dolores81 in reply to Levs06

I didn't know anything about Behçet's, it's all new to me. For a long time a thought my daughter had Crohn's disease. It all started with diarrhoea, high fevers and ulcers in her mouth, so at no point did I look at her genital area. As she got around 4 years she will tell me her private parts would hurt. I took a look and saw it was red but always assumed it was because she had really bad diarrhoea and wasn't cleaning well. It wasn't till 5 years later when I first got diagnose with behcets and they look at my genital area that they saw internal ulcers, they advise me to go home and have a look at my daughter genital area, once I did I saw she also had ulcers, they look like the one you get in your mouth, small or medium sizes. At first they did say she had food allergies and that's why she suffer from really bad diarrhoea. I had a hard time trying to get someone to believe that there was something wrong with her. So don't give up. U don't need to gave the gene to have behcets disease as there are plenty of people who don't. Both my daughter and I carry the gene. Pls do ask anything else. And get her refer to the Centre of Excellence as soon as possible.

Levs06 profile image
Levs06 in reply to Dolores81

Thankyou For all your support I will keep you posted x

I just wanted to say I hope you find answers soon and to show support - the reply from Doloes81 is excellent advice. Please post how you all get on x

Levs06 profile image
Levs06 in reply to sam0511

Thankyou so much x

Hi Levs06

My partner was also diagnose at about 8 years old even thou she had been showing signs soon after birth and it was much harder to get a diagnose all thoses years ago, she is now 60. We have two son now 36 and 32 who also shown BD symptons soon after birth and they were diagnose when about 6 years old. We all had the HLA51 gene test but it did not show up, the only reason why they were diahnose is because my partner who has BD saw similarities with our sons and how it affected her. I think it would be your best interest to ask for your daughter to be sent to one of the BD COE hospitals.

Levs06 profile image
Levs06 in reply to

Thankyou this is really helpful info. My daughters cousin who has behcets is being transferred to the hospital in Birmingham I think so I may try and speak to his doctors there x

in reply to Levs06

My Partner and our two sons are also under Birmingham BD COE they are really good, their local hospital is Royal National for Rheumtic diseases Bath these are also very good. Hope this helps. Tim

Jules6663 profile image
Jules6663 in reply to Levs06

My daughter was diagnosed at Birmingham around four months ago. They are excellent although we are still struggling to get things under control, we are just grateful to have a diagnosis and hopefully she will soon get a treatment which works completely.

I agree with taking photos and keeping a diary of symptoms. Note things like what she’s eaten, how she’s sleeping, day to day things like that. I was diagnosed as an adult but have shown symptoms my whole life. My symptoms as a kid were attributed to anxiety but now it’s clear that anxiety probably led to flares. I am HLA-B51 positive, which suggests I’ve always been predisposed. It’s worth looking into the testing just as a backup. Here in the US, there isn’t really even a lot of doctors willing to suggest it. I found out after I was diagnosed that a doctor had put it in my charts years prior as a possible cause of my GI bleeding. I do have GI involvement.

You are her best advocate, and you know what is and isn’t expected in terms of “normal” behavior. Kids with Behcet’s can have other health issues, too. It’ll take time and experience to figure out what is causing what, but you’ll get there.

As an adult who had undiagnosed Behcet’s as a kid, I know your daughter is lucky to have you.

Aww thankyou what a lovely supportive message! I'm so glad I came across this support group. I will definitely keep an eye out for all varying symptoms and keep records of photos and diarys ect. X

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