Behcet's Syndrome Society
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my daughter is 4 years old and has been suffering for headaches for bout 6months recently however she has had terrible fatigue and sleeps all the time and has developed ulcers in her mouth and lips! gp is stumped and has refered us to a pedeatric doctor and has given us yet another anti-biotic, which is her 4th anti-biotic within 6 months and does not help atol, can anyone help with what this might be i just no somthing is not right.

6 Replies

Hello and welcome to the site. May I ask what led you to post your question here? Does your daughter have a diagnosis?


To be honest i would get the referal and take it from there, a mum always knows when something just is not right, or take her to the ER x


I have taken her to a&e and they were also in their own words stumped to what might be wrong however did check for diatbietes which was negative and because she sees the pediatic doctor this week they were happy to let her home for more tests to be done then, i have posted this question because here because i wanted to get perhaps so idea of what might be wrong befor i see the doctor on friday as i dont want to be blind sided or to be told again that they just dont kno whats wrong?


sory i have just realized that i have put this question on bs page, it wasnt ment to be on this pasific page, i was looking at symptoms and bs was somthing i had considered however?


Hi again, it's good that you have been looking for answers yourself, particularly with conditions like BD which are so rare.

I suggest you put together a brief history - ie starting with when you first noticed something was wrong, eg ' headaches started 6 months ago, saw GP, was prescribed x (name the medication if you can), no different/worse/better, ulcers appeared 2 months later (describe them if you can) and now has constant fatigue...' Note any tests she has had, and the results if you know them. If you are able to take any photographs of your daughter's visible symptoms that can sometimes help as she may not have the ulcers at the time of the appointment or they may not be as bad as they have been before. Note a few questions you would like to ask.

If you think some of her symptoms fit the BD criteria, you could print off the relevant fact sheets and take them with you. There are many auto immune diseases and cross overs of symptoms, but this could be a starting point. You don't have to bombard the Specialist, but you could have a bullet point sheet and a few questions as a guide to refer to, or give the doc a copy and go through it together, and have all the other information to hand. Take another adult with you if you can, it helps to remember what was said and talk it over with another person afterwards and if things need to be discussed that you would prefer your daughter not to hear, the other person could take her out for a while. If a particular treatment or test is suggested/offered, such as more anti-biotics, make sure you are clear why, and what they are expected to do. Ask for a copy of the clinic letter when it is written. Make some notes of your own after the appointment. This will help with future appointments.

As Tamirra says, mums know best - if you are very worried about your daughter or there are any sudden or severe changes in her health then take her to A&E, but meanwhile, prepare as much as you can for this appointment and hopefully you will get some answers and appropriate treatment for your daughter.


I agree with what has been said above, that you need answers but it has to be properly diagnosed. The trouble with immune disorders is that they can all have very similar results, mostly that is that the inflammation is caused by the immune system over defending itself, or being faulty, and results in conditions in which the root cause is not sufficiently healed if at all by antibiotics, but often will respond to steroid treatment. However, steroids of any kind are not given lightly, especially to children due to side effects etc, so a doctor needs to rule out every other possibility before deciding if it is or is not Behcets or something like it.

Ulcers anywhere in the body can be due to a whole spectrum of causes, and are not always in themselves indicative of BD.

One thing we all wish we had done is keep an accurate diary. That is always useful as sometimes the symptoms can blur into one long bit of history difficult to get across to a doc. So it is useful to keep a list of all symptoms:

fatigue/hours of sleep

ability to concentrate (ask nursery or school to observe too)


inflammation or infection

mood changes




time of day symptoms flare up

general well being

food diary

toilet habits

and write those down on a daily basis.

Also, try not to panic. It is probably far worse to be a parent and have a child go through undiagnosed symptoms than it is to be a sufferer of symptoms yourself and understandably, you will not rest until you know and have absolutely have explored every avenue. However, be wary of seeing information about any disease (including BD) and ticking off the symptoms mentally and assuming that is what it is, because even a clear symptom like mouth ulcers can be due to a variety of reasons. All childhood illnesses can induce fatigue, all post viral symptoms or auto-immune disorders could look like BD or other try not to diagnose yourself, but collect information to give to docs so that they can be clear about the cause of symptoms and diagnosis. Often tiny details can guide a doc to one diagnosis over another, but they are scientists and will not make a definitive diagnosis without a considerable amount of evidence. They can make presumptive diagnosis too, and try out the less harmful treatments to see how your daughter responds and that too can help to narrow it down. Symptoms are not the actual disease or illness, they are the results or side effects of having a disease and can also occur long after the disease has gone.


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