Feeling lost

[Logan360]

My son is 9 and been really ill for 5 years and they diagnosis him month ago with behcets it come every 9 weeks and he is so Ill then lasts over a month and has to go in hospital for morphine just stared him on colchicine

[billi]

Hi and so sorry about the pain of your son and yourself as I'm sure as a mother you feel it for him. At least he is diagnosed and getting the right treatment. Colchicine is a good treatment for Behcets, I myself was on this for 6 years and it made a big difference to ulcer flares. Each of us have different symptoms, treatments, medicines etc and equally different reactions to these and what works for each individual. What I will say is if at all possible, as all medications have some side effects, try it for at least two weeks because your body can and does adjust. In this case we are talking about a child, I'd suggest you don't tell him what the side effects of any drug are (so that he is not worrying about it) but do ask him to tell you if he feels unwell etc. A CLENIL inhaler is good for ulcers in the mouth or genital, anal area. A couple of puffs into the mouth, gargle it round although it is only air, then blow it out, do not swallow, do this initially 3/4 times a day gradually increasing the dose until ulcers have disappeared. Same below, just puff on the area. Now I'm not a doctor and your child is young so please check with your doctor if this is advisable for him. Another thing is to wear only cotton and loose. Also blend his food, use a small spoon, nothing too hot or too cold, drink through a straw, dip bread/toast into milk or tea etc. I do hope this is of some help and that your son does well on his new treatment.

I wish you both well.

Billi

[Logan360 in reply to billi]

Thank you so much it's hard at the moment because I have never heard about behcets till doctor told me but they is so much too take in and Lerner about thank you for your time

[Hidden]

Have they ruled out periodic fever syndrome?

I hope your son is seeing a paediatrician with experience in treating Behcets as its very rare, especially in children. I have heard very good things about a Prof Paul Brogan at Great Ormand St in London and a Dr Claire Pain in Liverpool, they both have experience in treating children with Behcets. With something so rare and complex you need to be under the most experienced Dr you can be.

I hope that the the Colchicine improves your sons symptoms.

[Logan360 in reply to Hidden]

We are under 4 specialist in Sheffield children's hospital and and yes they have ruled out periodic fever he has had 3 cameras and loads of other test and now the have said it's behcets we are also waiting on some bloods too be sent of too Germany

[AmandaMoseley in reply to Logan360]

Please Please ask to be referred to Claire Pain at Alderhey - they cannot refuse you

[Logan360 in reply to Hidden]

Yes they have done loads of test but they are more than happy it's not periodic fever.

[magirose]

I too suffer with Behcet's and believe I had it as a child. I am sorry for you and your son and what you are going through.

I had a long remission from symptoms for some reason after about 8 and it didn't return til early 20s. It can happen.

I don't know anything about how they treat Behcet's in children but there are a wide range of treatment options out there. If his symptoms don't settle with Colchicine be sure to speak to doctors about what else may be available. Xx

[Logan360 in reply to magirose]

He is on colchicine and lansoprazole and movricol and dulcolax I have notice that he has bad night sweats in a morning the bed is all white and wet though is this normal

[magirose]

Yes I have that all the time and lots of us do. If you are in the UK he will possibly have been suffering a lot in the high humidity we have had. That is dreadful for many of us and makes us flare.

If it is possible at all a fan pointed towards him at night might help. I know they use a lot of electricity and are expensive. But that would make him more comfortable. Poor boy. X

[Logan360 in reply to magirose]

Thankyou for you reply it's nice to know what's part of bd and what's not will use a fan from now on and yes I am in UK

[magirose]

Just also want to point out I am not an expert so raise it with his doc. I just know we have discussed it many times on our help group. X

[magirose]

Hi...hope your son is feeling a little better. I just wanted to tell you that there are some great groups on facebook you can join and chat to others who suffer. Behcet's disease - you are not alone is one. UK Behcet's contacts only. And vasculitis uk support group. Search and request to join. People on there are so nice as they are here and there are a lot of people on there who have Behcet's and will offer support. X