child aged 11

Hi my 11 year old daughter as just been told she as behcets disease I was just wondering if there's any other parents on here. My daughter as suffered with this for about a year and I'm happy they found out now what it his. She his at the beginning of her treatment and spend 3/4 days at the hospital each week. I was wondering will she be able to lead a normal lift . if anybody can help me understand this I would like some thanks .

15 Replies

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  • Hello there,

    What a shock for you to discover that your daughter has this disease, but there is one very good thing...they have diagnosed the problem early and hopefully no long-term damage has been done to her internal organs. Most of us have waited many years for a diagnosis, and by then irreparable damage has been done.

    After the doctors have decided what treatments to give your daughter, there is no reason why she cannot lead a normal life. This disease can be very debilitating, and many of us suffer from very nasty symptoms. However, as your daughter is already being treated, hopefully the treatment she will be given, and her future care at the hospital will allay anything too bad happening.

    Do look at the BSS web-page. They have as much information as you and your GP will need. Often, GPs need some information to work with. As the disease is so rare, they probably have never dealt with it before.

    Welcome to this site. Keep in touch, we are all here to help each other.

    Very best regards, Suzanne.

  • Hi my daughter is nine and been suffering for the last two years with BD . Her symptoms have just started to become more aggressive and we may be starting on auto immune drugs . Currently on colchine and pitzofen omopraole and steroids when regarded . The colchine did keep the mouth ulcers at bay for 6 months but now they are back and nastier then before plus nose ulcers and now genital ulcers ! Lots of pain in legs and gastro . She also gas Joint Hypermobility syndrome wh ich also causes lots of joint issues and dislocations . Bechets society is excellent go look and join online . Good luck x

  • Hi my daughter is nine and been suffering for the last two years with BD . Her symptoms have just started to become more aggressive and we may be starting on auto immune drugs . Currently on colchine and pitzofen omopraole and steroids when regarded . The colchine did keep the mouth ulcers at bay for 6 months but now they are back and nastier then before plus nose ulcers and now genital ulcers ! Lots of pain in legs and gastro . She also gas Joint Hypermobility syndrome wh ich also causes lots of joint issues and dislocations . Bechets society is excellent go look and join online . Good luck x

  • Hi my daughter is nine and been suffering for the last two years with BD . Her symptoms have just started to become more aggressive and we may be starting on auto immune drugs . Currently on colchine and pitzofen omopraole and steroids when regarded . The colchine did keep the mouth ulcers at bay for 6 months but now they are back and nastier then before plus nose ulcers and now genital ulcers ! Lots of pain in legs and gastro . She also gas Joint Hypermobility syndrome wh ich also causes lots of joint issues and dislocations . Bechets society is excellent go look and join online . Good luck x

  • Hi

    There is hope I promise - there are many young sufferers out there who are now at University and out in the workplace. It is a challenge - and I have to say schools could learn a lot from Universities about how to help those with disabilities, but yes she will have a life

  • Hi my 12 year old started with symptoms at 6. I think we all have ups and downs with BD but the main thing is to surround yourselves with the best specalists. You can find wonderful information at the UK and American Behcet's web sights.

    Take the time to learn the symptoms and what to look out for. Try not to let this important information rule your life as you have a wonderful life to enjoy.

    Michelle

  • My daughter was 12 when she got real sick the docs thought it was ulcertive colitis she had her whe large colon removed at age 15 then a yr later the ulcers in mouth and genital area came then rash all over her face then many attacks to her pancrease no one coukd understand whst was going on then finally she got diognosed with BD and treatment was started her behcets has affected her lungs and niw her eyes and brain with inflamation she is so strong a fighter she's my hero she is currently on humira injections and imuran which seems to be keeping things under control for now but please if u have any questions feel free to ask me ok

  • Hi Jackie

    i had a lot of idiopathic pancreatitis attacks for many years (v.horrible!) which were put down to my Behcet's disease when it was eventually diagnosed after 25 years! Prof Fortune at London COE said they think pancreas problems might be more down to behcet's than they realised. They tended to blame the medication patients were on, but now that they are seeing more patients who had pancreatitis before any medication they realise there must be more to it than that. They have started a review of their patient records who have also had pancreatitis- not sure how that is going.

    My eyes are also a problem recently . I have odd lung problems which no one has really understood - I control with a steroid inhaler, but not really asthma. Maybe you could let me know what kind of lung and pancreas problems your daughter has/had, maybe on a private message.This has always been a confusing aspect of my illness. so would appreciate any info you are happy to share.

    I am on bi-monthly humira now with mixed results. I did manage to work full time until age of 50, get 2 University degrees and also run a home and raise a son - so illness did not hold me back too much in life- just made it hard work at times!!Sso your daughter is right to persevere and please pass on my best wishes to her in all her endeavors.

    Kind regards,

    Sian

  • hello

    my daughter was diagnosed at 14, but had symptoms from the age of 10. we have spent a lot of time in hospital and she missed the whole if year 10 (1st year of GCSE's) at school, but she copes incredibly well - much better than i do. amazingly, she passed her GCSE's and is now in sixth form doing A levels.

    it certainly isnt easy, she still flares quite badly despite 4 weekly infliximab infusions and methotrexate; but she seems to have developed a determination that this disease will not stop her achieving whatever she wants to with her life!

    good luck and my thoughts are with you

    clara

  • Hi laurenkstar1

    My daughter had a fantastic response to infliximab when she started it two years ago. The side effects have been minimal - feeling cold during the infusion and very tired following it - she usually sleeps for 24 hours.

    For the first 6 months she almost got back to her old self, however we started to notice that the treatment was 'running out' on week 3 - so she would become ill again one week before treatment. Unfortunately she is now lucky to get 2 good weeks - we were told that this could happen and this is apparently why you take methotrexate alongside it.

    If I can answer any other questions feel free to ask

    Clara x

  • For the parents out there, do you know of children on 2 weekly Infliximab. Our rheumatologist wants to start it. My daughter said no. Now the steroids aren't stopping ulcers everywhere. Jaida has decided maybe to get off the steroids she will try 2 weekly. I know we hate how steroids make us look and feel but Jaida at age 12 feels the same.

  • Hi Michja

    I personally am not aware of any children on Infliximab but there maybe some parents here that have their child on it.

    I am remembering that I started with my first infusion and then another at 2 weeks and then another at 4 weeks and now 6 weekly and so this may be the same for Jaida [but with a smaller dosage].

    I have managed to reduce down on the steroids from 60mg to 4 mg since starting Infliximab and am still reducing. I have got to say that Infliximab has been the best for me so far.....and so hope this will be the same for Jaida.

    I am having mine tomorrow at my local hospital Haematology Unit and it takes about 2 hrs for the infusion to gradually go into my system, through a vein in my arm. The Nurses where I go are brilliant and very caring and it doesn't hurt. Rather like having a blood test when it's inserted but then doesn't hurt at all after that....the nurses offer lots of cups of tea or drinks etc and keep a close eye on me.

    I take my smartphone and flick around looking and reading stored books while it is happening. Take lots of bottled water and a snack like a sandwich or banana etc..... as I feel this helps me to recover better. You can feel a little tired and achy for a few days, but then you gradually pick up..........I like it because I am not taking tablets all the time and just have this every 6 weeks and so it works for me.

    Perhaps you could get in touch with the C.O.E Nurse who could go over the Infliximab dosage etc with you....so that you can have a chat with Jaida

    Good luck to the both of you :)

  • Hi

    Have you thought about coming to the Young Sufferers weekend away in Tamworth planned for those who have behcets (and their parents)

    Amanda

  • Hi yes where both going to be there my daughter his looking forward to it

  • I look forward to meeting you there!

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