Behcet's Syndrome Society
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Suspected Behcets...help

Hi my son has had recurrent mouth ulcers over the past 2 years, he had tongue tie, which has now been operated on, so thought the ulcers could be where his tongue wasn't sitting right in the mouth, anyway the last few months my sons mouth ulcers have gone off the scale fortunately our dentist has referred him to the hospital to get this particular ulcer checked out its very large and been hanging around for near on 3 weeks....he has woke today and there is a small ulcer on his genitals...he;s also been extremely lethargic and complains of joint pain...we're taking him to the doctors tomorrow, who isn't the most approachable or caring, so not quite sure how to approach it...googling his symptoms behcets keeps coming up??? what do you think and how should we approach out unhelpful doctor...p.s we have taken to doctors with ulcers and she basically just said kids get them!!!.thank you for any help or advice.

Bev

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Hi Bev.

I am very sorry to read about your son’s awful experience with ulcers. They can be horrific and very painful. It does appear to be too much of a coincidence that he has now developed a genital ulcer too- accompanied by body aches and pains/lethargy!

I am with you re -your GP’s diagnosis -and feeling a little tetchy as ‘kids get them’ - yes they do, but, I am not so sure about genital ulcers ??? Perhaps this new development will help your GP see that there is more to his health problem than just being a child that gets ulcers. I am a fully - fledged grown up (most days!) and was continuously told much the same for long enough. It did take some time to reach a diagnosis and certainly no mean feat during that lengthy process. Frustrating and tiring!

I had to resort to a photographic diary (not the best pics’ to have stored on my telephone might I add!) as the ulcers were usually gone by the time my appt came around. It has been a really useful tool for recurrence, size, severity and type.

The fact your dentist has already referred your son for a particularly bothersome ulcer is promising, and your GP will know about this. Hopefully, in the meantime, your son will be prescribed something to relieve the painful oral ulcers and, if the genital ulcer is still obvious, something to reduce the severity of that too! 🤞🏼

It is a very peculiar syndrome/disease and not very well understood. I am still trying to figure it all out too!

Hoping you have a productive appointment with your son.

Sue. x 🌺

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Hi Sue

Thank you so much for replying...I just can't think of what else it can be...its so tough isn't it trying to find out whats going on...i'm going to print out some info from the behcets syndrome uk website and highlight all the symptoms he has, and hopefully she'll take it seriously. Hopefully with the development of the genital ulcer that will be enough to start the ball rolling....will keep you posted on how we get on tomorrow and thank you for taking the time to reply we really appreciate it :) ....Bev xxxxxxxx

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You are most welcome. 🤗

Two years too long in my book for a child-whatever it happens to be! And as TheHud has so rightly stated, could be simply anything (not necessarily Behçet’s) however, still needing some immediate attention!

All crossed for your dear son.🤞🏼xx

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Hopefully it's not Behcet's. It could be many things :) But what you need is help and fast, no delays. Given the symptoms if in the UK a centre of excellence referral would be in order but your doc needs to run tests for B12, Feratin, Folate, inflammatory markers and infection etc asap see if there is anything that can help him now. So many of us hang around like limp lettuce waiting, just waiting, so doing something is good. Make sure the doc does something, sure you will ;) Given the ops and tongue tie anemia is always possibly. Best of luck.

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Thank you for the information the more info I've got to hand the better I'll feel going in to the docs tomorrow at least I can ask for tests to be done for the above ...we've just done an "at home" gluten test, which is negative ..so thats one crossed off the list..thanks again for replying its so helpful and we really do appreciate it ...Bev

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You probably already do this but make sure you get a copy of all results. For the B12, as for active B12 too and hope they have a clue what you mean. Sometimes we can have a level of B12 in our blood but we are not able to use it. Active B12 gives the actual level of usable B12. If the doc knows what there stuff they can properly look at the levels of everything, inc platelets and lymphocyts and get a fair idea of what's happening. If not I am sure people on here can help :) There are some things we can't do anything about and some things we can, making sure we are running on a full tank is a start ;)

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Thank you thats really useful to know. I think she may throw us out of the surgery if I ask for all of this to be checked, not that I care, she really is a different species our doctor :) . Thanks again for all this info, will let you know how we get on ...Bev xx

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They are standard tests, apart from the active B12, but the NHS does do it especially for children :) He just needs the full bloods, which is at least 4 tubes so make sure he is fully hydrated but not too much to affect the outcome :)

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Thank you we managed to get appointment for 3.40 today, thank goodness I got one, was worried they'd be booked . We've just joined a private healthcare provider, although we can't access the medical services for 6 months, they have a 25/7 G.P call service which I can use straight away say may give them a bell too..thanks again for the advice, will post later today when we've had the appointment...thank you Bev

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Hi Bev, my daughter was diagnosed five weeks ago we have found that very few g.p's know anything about it, the fact that you have been referred to a clinic is all that really matters because if they will take over the care if they decide your son has it.

My daughter has dreadful ulcers they are very fleshy and last weeks and are also in her bowel so she is in constant pain sometimes agony it has taken 2 years 7 months to get to the clinic for us, but now we are there we are hopeful.

She has started treatment a week ago but it is making her very sick atm and they have started her on a very low dose because her liver readings are already bad. She was rushed in on Friday with suspected acute pancreatitus but it wasn't thank god. Its a very long road even after getting to the right place but its a start.

I wish you luck.

Julie x

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Sorry just had another thought, change g.p ??

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Oh Julie that sounds absolutely horrendous, I can't imagine what you're all going through, I'm really hoping that the treatment works for her, sounds like you've had an awful time. We have only been referred to our local hospital via our dentist, she really isn't happy with the size and the fact he's had this particular ulcer for over 3 weeks now, in face I've just looked at my sons tongue and it looks like theres a hole in the surface of his tongue, its so painful for him, the ulcer he had on his genitals has all but disappeared, which is slightly annoying, although a relief for my son, I was hoping to show the doctor today, I'm starting to think I need to photograph all the symptoms...anyway please send love to your daughter and hope things start improving, its terrible seeing your children suffer :( ..thanks for replying...Bev xx

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Hi, My son had ulcers in his mouth ALL the time from a young age. We didn't think much of it, in fact we thought it was because he'd always put his dirty fingers in his mouth.

Several years later, he got an ulcer on his toe which developed rapidly into a bad infection (which required hospitalization). It took a little over 1yr for a diagnosis (with Dr appointments every 4wks), but during the course of that year, he developed genital ulcers (no longer just his feet & mouth). As someone mentioned in theses posts, most Drs have never heard of Behcet's. You definitely need to raise it with your DR & ask them to verify with other Dr's if required. That's what ours did. He shared my son's case with a network of Dr's around the world & it was one in the UK who suggested Behcet's....he was right!

Good luck!!

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I think him having a genital ulcer along with joint pain and lethargy pretty much confirms his diagnosis. Keep fighting the good fight to get the proper diagnosis. It took me 26 years to get the right diagnosis (while living in Manhattan and having excellent doctors).

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I hope things went well with your GP and they were more helpful than usual.

If not, you may be feeling out of control or even more worried by now., If you read my feed you will see you are not the only one that has had issues getting help from the doctor, and in fact, the most progress I have had over the years until finally getting a referral last week was with my dentist.

Unlike me, you are dealing with the symptoms on a child , you need the speed of referral and treatment, because getting any illness under control quickly with a teen means they will feel less impact on the way they feel about being ill and the impact on their lives.

So, if you have not had a result in getting a referral yet, print out the information about the disease and referral process for the dentist, they can refer you too, ask him to explaining that the funding for the referral comes from a central budget not his own surgery, tell him about your son's genital ulcer and joint pain and fatigue now too ( you might want to begin the consultation without your son in the room , he may be embarrassed about you discussing genitals with the dentist). He should just do it, If not and your GP or dentist don't do it, they may suggest the rheumatologists etc. route first, which can take far too long, go to the out of hours doctors in the hospital at any time, or your new private access care service with the info , tell them your doctor is dismissive about your son's symptoms and you want to be referred to the CoE near you.

Any other problems getting a referral then go to BSS helpline or message Tony from replies in my post for help. He will give you the right advice.

Good luck, and please do let us know how things go, diagnosis and how you both feel, all the people on this site are ready to give you both support.

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Hi everyone thank you all so much for the helpful replies...We've just returned from the doctors and she was surprisingly very helpful (she must of sensed my determined aura :) ), she has ordered him for full blood diagnostics stating that she wanted everything in place so when my son's referral appointment from the hospital comes he'll have blood results in place, so although she didn't mention what may be causing all of this, she wasn't dismissive either so I feel better that she's not fobbed us off, so up to hospital in the morning and see what the bloods come up with...thanks everyone, such a relief to talk to others...Bev xx

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Excellent!!

I am so pleased your GP was helpful and not as expected. I will adopt your ‘determined aura’ for future visits-just incase! 😉

And yes, the ability to talk to others is always extremely helpfuI I find. The answers we want are not always readily available on HU, but a kind word here and there and reassurance from others willing to offer advice is most welcome.

Keep us posted.

👍🏼

Sue. xx

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Thanks Sue for all your kind words and advice...will let you know how things progress. I must've been emitting some serious "I'm not going to be fobbed off vibes" :) I'm kind of pleased Olivers tongue ulcer was looking particularly vicious today, that sounds terrible but it was really important for her to see how awful it looks, when she saw it she actually said she's very pleased that the dentist had made the referral...fingers crossed we can get to the bottom of it all...have a lovely evening and thanks again for taking the time to reply...thank you :) ...Bev

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One of my biggest symptoms was ulcers. Try him on a totally natural organic toothpaste as it will not irritate the ulcers. Also could try Merc sol 30c homeopathy remedy. They have helped me considerably. Also get a blood test done for vitamin D as I was really deficient and it caused a lot of pain. All the best I hope things get better for your son xx

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Hi ..Thank you for replying. We already use Dr Organic toothpaste, when he 1st started getting the ulcers I read that its best to use organic, SLS free :) ..will try the homeopathy remedy you've recommended..where would be best to buy? is there a brand name you could recommend?. Oliver had his bloods taken today, not sure now if vitamin D was on the list, I'm thinking it wasn't, so will wait to see what comes back and if no joy then we're going to get him tested privately for everything :) so will jot vitamin D on the list...thanks again for the response and will post on here when we get the results from his bloods.. thank you Bev xxx

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Hi Bev. I use Weleda you can get them online or at a Healthfood shop. What you must remember is never touch the pills put 2 in the bottle cap then in the mouth. These can be taken every 4 hours until symptoms get better. Also I use Trimovate Cream sparingly for my ulcers below when they start playing up badly and this really helps. Doctor should be able to help. My consultant prescribed this. Only use probably now once a month sometimes not at all. Once you have ulcers down below they heal eventually but leave scaring. Basically steroid cream. I also take a flax/linseed oil vegetarian capsule daily this helps with my inflammation levels as they are high and seems to help with the pain as these things have a knock on effect and also a probiotic daily. They say get the gut working and this helps the rest of your body. I would say that watching what I eat mainly organic and drink this keeps my symptoms at bay. I have suffered for 42 years with it. I expect other people have suggested keep a diary of what your son eats and take pictures. I do hope things go well for him. Xx

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Hi will take a look at those recommendations..thank you...Oliver was veggie, until we went travelling then he started eating fish, ( we always gave him an option to eat meat/fish) that was around 5 years ago, we've always tried to eat organic where possible, he does have a pretty good diet, we would love to resolve this by any natural means, I've been reading tons about steroids and other scary sounding treatments, but obviously whatever it takes...just waiting on the blood test results. Thank you for all the advice, sounds like you've really suffered at the hands of this awful disease...and yes we've been keeping a food diary and nothing really stands out unfortunately :( ...have a lovely day and thanks for taking the time to reply ...Bev xxx

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Hi Bev

I have been thinking about you all, how have you got on with the blood tests?

xx

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Hi,

Sorry I've not updated, but haven't received results from Oliver's blood tests yet, I'm thinking thats a good thing, but I'm calling G.P after lunch time to see if anything has come back, as its been a week now. We have received an appointment from the hospital with regards to the ulcers which is on the 29th May, but the massive ulcer he had for the last month has cleared up completely over the last few days, I've got pictures so hopefully that will help, also the appointment is with the surgeon who completed his tongue tie appointment so I'm really not sure on where we're going to end up, as I'm sure its nothing to do with his tongue tie?????. Thank you so much for asking after us, this site has been amazing with everybody replying and being supportive :) will let you know results of blood tests...thank you Bev xx

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Hi everyone just a quick update, all bloods have come back normal, but he's now (overnight) got a massive white ulcer under his tongue and another big one on his lip..poor boy is so fed up with it all :( ..we've got the hospital appointment on the 29th so fingers crossed...I'm writing every symptom down in a diary and taking pictures of all the ulcers..really need an answer ...thanks everyone, will keep updating...thanks Bev xx

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Hi. Was just wondering how old your son is. I had my first symptoms about 14 huge ulcers and this went hand in hand with tonsillitis which I had continuously I wonder now if it was down to hormone changes. As I am now in my 50s my symptoms are definitely less savage since going through the change. Or it maybe I understand my body better and can read the signs before things get out of hand. All my blood tests came back negative also. All the best with your appointment xx

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Hi. My son's 11 next month, I did think maybe hormonal, but he's been having ulcers for years, although they have become more frequent and vicious the last few months. I think we're going to get him tested for everything privately, as I don't think they test for allergies on the full blood count apart from Cealics???...anyone think its worth it? and what specifically should I be asking to test...vitamin D, active B12 reading....anything else I should be asking for?...thank you everyone...Bev xx

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Bev, are you in the United States and/or able to travel? There are a few doctors whom I think can help your son, as they took the time to carefully, expertly, diagnose my condition after I had been having major health issues for over 20 years. For God’s sake, I don’t want your son to be going from one doctor to another for that long. A lot of damage, some irreversible, can be done by then. Just let me know where you are and how mobile you are. Sending good healing vibes your family’s way! Dave

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Hi Dave, we're in Uk, southern England. Thanks for your response and theres no way on this earth my sons going to wait that long...just awful 20 years!!!. We're currently just trying to ease the pain of the ulcers, but one batch has disappeared to be replaced with another, literally overnight. We're also just going through the elimination process of it being anything else, deficiency of some sort, but the more we've read about B.D the more obvious to us it seems he has it, unfortunately. Oliver's got an appointment on the 29th May so will see what that comes up with and in the meantime we're going to get him tested for everything...thanks Dave for the healing vibes :) ..very kind of you...have a lovely day and thanks for replying..Bev xx

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Hi lovely people,

Just a quick update...sooo Oliver's appointment on the 29th was cancelled the day before and replaced with an appointment today, and guess what??? it was cancelled again yesterday..so bloody annoyed (fortunately Oliver has no symptoms at the moment and is back to his bright, chirpy self)..They've re-booked another appointment for 10th July, so will see how things go between now and then. Our health insurance has to be paid into for 6 months before accessing any treatment, which is a pain, as he would of been seen by now..anyway hope you're all keeping well and healthy and will update how things go on the 10th...many thanks Bev xxx

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