my 6 yr old son has behcets and is on 1,500mg ... - Behçet's UK

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my 6 yr old son has behcets and is on 1,500mg of colchicine a day and is still getting flares.

frazel12 profile image
frazel12

whilst hes having the flares i have to give him 7ml of prednisone a day including 3 x500mg colchicine, hes still getting mouth and genital ulcers and skin infection and bloating in the face and stomach. im struggling on what to do next for him,can anyone help me with any advice

16 Replies

Hi frazel12....and welcome to the forum. I hope you can find some good friends and information here for you and your son.

I must be so difficult to be watching your son go through this and it seeming as if things are not settling down. I have a son of thirty and thankfully he doesn't have the symptoms of this horrible disease....I can't imagine what you must be going through.

I looked at your profile and see you are living in Australia and there are a few people on the forum that also live in Australia and so hopefully they will come in and have a chat with you. There are also other parents here that have children and they would also be helpful to you more than I can.

If you type the word "behcets" followed by "children" or "child" or other similar words, in the search bar just above on your right hand side in the green banner. You will get some old posting of discussions from parents of children with Behcets.

It is always difficult to treat young children with drugs and medications as I imagine any Dr would have to weigh up any possible long term side effects against treating the Behcets. I wonder if you have spoken to your sons Dr's about other medications that will help as there are others which dampen the immune system down but these are very powerful drugs and the dr's may not want to give them to him at this point......there are also some lotions that can used directly or in the bath and so perhaps having a good talk with them is one way forward. I find with this disease that being 'head on' with Doctors, is the best approach.

I have sent a link to the Behects society treatment page so perhaps you could have a look and copy it for your sons Dr's to look at and also on the same website are lots of other useful bits of information....I know they are based in England but the advice they give is second to none.

behcets.org.uk/wp-content/u...

Behects flares can be really aggressive for some time and then gradually burn out and this maybe what is happening to your son and it may take a while for you to start noticing a change.

In the meantime.....you can keep yourself sane by chatting to us and getting clued up on things.....

I really hope some of what I have said has helped and some other parents will come in and have a more personal experience type discussion with you.

Andrea

frazel12 profile image
frazel12 in reply to andreafm

Thankyou so much andrea, I've keep in contact with our local gp , pediatrian and specialist nearly every fortnight,they all just want us to keep pushing him with the colchicine.I just hate seeing him having headaches and going to the toilet around 5/6 times a day.I was hopping someone out there had any ideas about a diet change or herbal choices?

Hi fraser welcome to our forum a place were you can be yourself among friends. I try to come from a complimentary perspective as well as modern medicine. Have you tried relaxation CDs with him. Just to try and chill him out during his difficult times. Also I have found that homeopathic medicine can help too. Up here in Glasgow there is a NHS homeopathic hospital but don't know if where you are could you get advice. Hope this helps a wee bit. Got bless. Yasemin xxx

Hi frazel12...the tummy symptoms are classic side effect symptoms of colchicine + most of us also have tummy issues as a symptom. The headaches are a little more worrying and may need you to push the doctors to look into a bit more....I have attached a factsheet which has been written by very well know behcets neurologist in the UK

behcets.org.uk/information-...

Sorry to keep linking you to factsheets but I find that having the right information helps to focus your mind on what you might need to be saying to your sons Doctors...so I hope it's helpful.

Like Yasemin, I also use a lot of Homeopathic medicines and when my son was growing up I had a homeopathic/allopathic G.P who was brilliant, particularly with my son and I never used any drugs at all with him when he was a baby and also growing up. Thankfully, now he is a big stocking lad who is rarely ill with anything.

Perhaps you could try and find a homeopathic specialist to complement your sons medications and you can always let your Doctors know your are doing this or they may even be able to refer you to one if there is such a thing where you live.

Other than that some people here have tried cutting out diary products and also wheat in some cases. Best to try one at a time and make sure he is getting enough of the vitamins extra through not eating certain foods....for instance Calcium and D3 etc. A lot of the substitute milks have them added anyway and many of the non-gluten cereals etc also have added vitamins........this approach doesn't work overnight though so patience is the key.

I do hope you find some of this useful and you son starts to pick up soon...it is so awful to hear about somebody so young having to go through this.

Andrea

Hi Frazel12,

My 11 year old daughter has BD her first symptoms headaches, joint and ulcers(skin, mouth & below)started at 5 yrs and progressively got worse over the years. Christmas 2011, I begged the dermatologist to help but due to my daughter being under different specialists no one wanted to take controle of the situation. Well that's how I felt. He placed her on 500mcg only because i refused to leave and Jaida's symptoms eased, not going fully but she was able to play with her friend. Again her symptoms increased and so did the need for further medications. I have gone through Jaida's fight and only if you want too, you can look this up in history.

Jaida's rhumatologist took the reigns and has been our guide for the last year. She is our angel. As for Colchicine, Jaida is on 1000mcg morning only. As soon as we increased it further, Jaida had the runs. We were told to cut the dose back. Jaida was on quite a lot of other medications including 25mg daily prednisone. Thanks to IV Infliximab every 8 weeks, Jaida is finally off prednisone. Still on everything else but we have our daughter back looking fantastic and HAPPY. We feel that we have made it through the mine field of medication to health. I know every drug has a trade off but we have tried everything else and Jaida's body was still so sick. From Feb to May we were in and out of hospital a total of almost 3 months this year alone. I missed my son terribly but we do what we have too.

This is a scary time for you, your son and the rest of your family. I know it almost sent me crazy but we must stay strong for our babies. It's fine to cry, infact it's necessary. I don't want to tell you what to do but the most important thing is find a specalist who is well informed. The eye disease in BD must be monitored carefully. Jaida had uveitis and her eye pressure went up to 38 this is danger stages. The problem with children is that they don't feel pressure like adults. Uveitis we could see but I thought it was due to her headaches and lack of sleep.

Please keep in touch with this sight as it helped me understand all the different types of medication, it's draw back and the benefits. We live outside Ballarat in Victoria, where are you? Jaida goes to the Royal Children's Hospital in Melbourne. Sorry to go on but I know I devoured any information, I hope this helps.

Love

Michelle xx

Oh so sorry I forgot to add, Jaida doesn't eat bread she finds it gives her pains in the tummy. We have tried so many different diets etc, we eat very healthy meals and keep up the fruit. Not sure if this helps, good luck. X

frazel12 profile image
frazel12 in reply to Michja

Wow, this site is Sooooo helpful, I no longer feel so alone.Frazer is seeing a kineseoligist on the 26th. We live in a small town right near wagga wagga nsw and our specialist in in Sydney, so lucky to be close to everyone he needs to see...everybody's info is so helpful for my partner and I Thankyou so much xx

Hi , please can I pick your brains , my daughter is seven and its so hard finding children going through this.

Hope your son is doing better x

frazel12 profile image
frazel12 in reply to Motherof4

Happy to help:)) your on the best site ever!!

Motherof4 profile image
Motherof4 in reply to frazel12

If ok with you I ill send you a lengthy message tomorrow with an outline to what we have been through , desperate to know if other kids have / having sme problems . We re still not on any meds except pain relief you can buy which does nothing as the DR want a bone marrow scan before treatment ? ! Many , many thanks xx

No worries:)))

Motherof4 profile image
Motherof4 in reply to frazel12

Hi really sorry I haven't been in touch but its been a bit manic. On top of my daughter my other three kids all decided to get ill and it's been horrible. Not sure if today is tomorrow or yesterday today ! On top of that been in hospital with eldest and the normally poorly one just had massive attack last night. How is your son?

My Girl has got to have endoscopy , colonoscopy , bone marrow and mouth ulcer biopsies in a few weeks time . X

frazel12 profile image
frazel12 in reply to Motherof4

Wow your a busy person, I'm so sorry to hear everyone in your family has been unwell.my sons not to bad; he has prianal cellulitis from his flare this time, he seems to be getting g a flare every two weeks but I seem to be getting aware of it before they get really bad!! has any of your kids got behcets??

Touch wood just the second eldest , but this has unofficial been the diagnosis , her rhemotogist wants bone marrow taken before starting treatment. ENT consultant also believes she has Bechets .

My eldest has suspected Ulcerated Colitis - which I have and I have arthritis in my spine . The two littles so far so good , although one keeps moaning about leg pains ? Hoping just growing pains !

What signs to you notice?

I notice mood swings first and not coping with any sibling or emotional out burts. Normal a really kind good girl and then becomes abit of a devil.

Hard for children.

I don't understand why they need cone marrow to be diagnosed properly? We notice every flare when our boy doesn't understand a simple question example, where are you shoes? his reply is what are shoes..then there's horrible mood swings, back it in the next day he's having a flare, I'm lucky enough he's starting to understand what's going on and he can tell us so we xan organise a week from work and school etc!! he went and saw a kenestiolagist she put him on minerals and told me to keep him away from msg and preservitives his moods are a little better this flare,so fingers crossed:)

Hi,

I hope I can help a little, my daughter is Jaida and I have written above.

We certainly did not put Jaida through bown marrow testing and to be honest I only thought that was to see if there was a problem with meningitis. But I could be wrong.

I'm sorry but last year when, as a family we were going through similar problems, all the records on the sights history are not there. I know the sight was improved but I think history was lost. If you have any questions please feel free to ask.

I feel for you both.

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