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Behçet's UK
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Questions for hospital help please 😊

Our 2 year old daughter is due for an appointment within the next few weeks with immunology, it seems she could have bechet’s from my previous post. What questions should we be asking at the hospital or what should we be wanting the doctor to look for? Any information would be gratefully received as we are really in the dark and it’s been a difficult 2 years and we don’t want to mess up the appointment by not knowing what to ask about

Thanks so much. X

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I would ask them to check her inflammation levels through blood test, also would recommend to check for The HLA51 gene, is linked to people who has behcets but I must say, that there are cases of people with behcets disease that does not have this gene. But if it does come back positive it's a start. Have pictures to show them, it doesn't matter how many pictures you have, the more the better as this gives a clear picture it's a regular thing. Also make a diary of how she is feeling everyday any symptoms she may be having, for example headaches, mouth ulcers, fever any symptoms this might help them, also write down if they suffer from diarrhoea, and how many times a day. Hope this help you

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The best question to ask is how much experience do they have in diagnosing and managing Behcets as it’s a rare, complex disease especially in children.

I would ask them to refer you to Prof Paul Brogan at Great Ormond St in London.

Less than 20% of patients in this country carry the HLAB51 gene, it’s not routinely checked. Blood inflamation levels can be normal as well.

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Yes, my Behçets has been super active for years. No HLAB51. No increased inflammatory markers.

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I totally agree with you Keyes! Inflammatory markers are often not present even during a bad flare up. I don't think tissue typing e.g. HLA 51 is done at all, I only know mine because I helped out a local lab with research. The most important thing is the experience of the doctor you are going to see. How long has he been treating people with Behcet's, how many has he treated, these are the most important questions. Hope all goes well.

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Thank you. We have just spent another weekend in hospital. Her temperature just won’t get under control (40 degrees ) and her skin is so painful. They sent us home last night saying they hope we get answers soon and sort of laughed that no medication brings her temperature under control. She is still boiling hot and fatigued this morning but there is nothing I can do to help her. It’s so frustrating and upsetting 😔

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I have had BD for over 40 years. My inflammation levels are usually high but when I was tested for the HLA51 gene it came back negative. Keep a diary of everything your daughter eats, drinks take pictures log everything. Also stick to your guns don’t let anyone dismiss what is happening it’s all very real. I go a natural route if possible. Toothpaste especially organic really helps. Coconut is very soothing for the skin also make sure it is natural. I find most things irritate my skin makes it sore then I come up in ulcers. Use everything that is natural. Washing powder hair everything. it is worth a try. It must be horrendous watching your child suffer so much. I hope things get better for your family soon. All the best with your appointment. Xx

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2106,

Hi I’m curious about what toothpaste you use? Have you noticed any good or bad things when you go to the dentist for check ups?

I have been trying to get diagnosed with BD, but all my test comes back normal, yet no one can explain the rash symptoms (like shingles) 20%less blood flow in my eye, uveitis,mouth uclers, unexplained body aches. Jabbing stabbing intense headache from back of head to side of head. Seems since I have not documented or have had the uclers in the private area that the rheumatologist won’t diagnose me with BD at this time. She referred me back to the neurologist and he’s not really dismissing BD he says it makes sense, since I have been having these type of outbreaks for 28 years.

I have drastically changed my diet and now for gluten free, dairy free and Sugar Free. It’s not been easy. But I’ve been off work since November and Tried to go back in January but eye sight was split screen vision and neuropathy was to intense. So I went back off work.

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Hi. The toothpaste I use is 100% natural minty cool from the Green People. I had for about 2 years horrendous problems with my teeth. A couple just died off and then cracked and these had to be removed and I was getting lots of pain. For the last year I have changed toothpaste and I haven’t had any mouth ulcers was getting 25/30 any one time. I still get the odd one now and again but walk in the park compared to what it was like. Also I take vitamin D supplement as I was very deficient simple blood test as I was getting pain in legs, back very common. That now gone I take supplement every other day. Also for inflammation I take linseed/flax oil for vegetarians once a day found this has helped also. Also eye drops used most days for dry eyes. I find my eyes are the first to go if I am feeling a bit off colour. I was only diagnosed about 7 years ago because of my ulcers down below. Had symptoms since 14 that’s over 42 years ago. I don’t take tablets if I can help it have steroids is ulcers get out of control but eat organic food, everything where possible chemical free. Hope this helps good luck xx

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Thank you so much for this. She only tolerates an amino acid formula that is fed direct into her stomach for food everything else causes her intense pain and vomiting. I have been given numerous steroid based creams for her skin and head but nothing works so will try the coconut oil. I just use fairy non bio for clothes but will swap that for a natural product. Anything is worth a go. Thanks again xx

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They’ll run labs to rule it other autoimmune diseases, but I second asking not only if they have experience with Behcet’s, but if they are both willing to take on a Behcet’s patient and if they know of other related specialists she may need who are also comfortable with Behcet’s patients. One of my major issues has been linking up with specialists for my eyes, digestion, etc.

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Also! I have low inflammation markers despite some obvious inflammation in my joints and intestines. I’m primarily Irish, have lived in the US since I was born, as were my parents and grandparents. I randomly am HLA-B51 positive. While negative results don’t mean your daughter doesn’t have Behcet’s, and positive results don’t guarantee you have or will eventually have Behcet’s, the correlation is important. Since I’m not in be general demographic of patients, many specialists question my diagnosis and order so many pointless tests. Having the HLA test helps me circumnavigate the doubting docs.

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This is so interesting to me, I’m in the process of being diagnosed, my neurologist is thinking behcet’s makes most since with the symptoms I’ve been having the last 28 years.

I am diagnosed with vasculitis now, with a flare in my cranial nerves and abdomen. Still will be having many tests and specialist appts. When I saw the rheumatologist she did all the tests and I came back NORMAL, but I was not in a flare but feeling the residual effects from one. She basically gave up said no need to see me anymore and passed me back to neurologist. THANK GOODNESS he didn’t give up and kept looking and found the abdominal issues. I am now scheduled to have a MRI Enterography and am seeing a Gasto Dr.

From my 23&me results I am a mix of Irish & European. (Swede) .

What are your abdominal issues ? If you would rather private message me with that info I understand and would appreciate any information as to how behcet’s symptoms of the gut are.

I was lucky that when I had the eye issues my Dr sent me to a Retina specialist and she’s the one that suggested for me to look into behcet’s, I had never heard of it before then and believe that the symptoms I have had for 28 years are them for the most part.

Thank you!

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My little girls inflammation markers are always normal. Even when she is in hospital totally out of it and burning up with a fever. The hospital don’t understand this and this negative result seems to be causing them more concerns than anything as she is constantly so symptomatic. I hope the Southampton specialist gets that next week but I am going to ask for a CoE referral anyway.

The gastro issues everyone talks about are really interesting. My daughters are so sever she now has an NG tube. Again no one has put everything together and is just treating the symptoms .... she is on 11 medications which do nothing to help ranging from

Anti sickness to laxatives and Piriton for her skin plus inhalers and steroids. The list goes on !

I wish everyone on here good health and hope more can be done to control the symptoms of this condition xx

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Thank you. I think that’s why diagnoses for anything has been so slow. They seem to assume anything “rare” means that it isn’t possible. My consultant even shrugged their shoulders and said we know how ill she is but we just don’t know why and put it down to being “a mystery”. Not good enough for me and certainly not how a 2 Year old should be expected to live the rest of her life.

I am so greatful for all the replies on here. They have been so useful and it has really helped focus what I am going to say and ask to be done to help her xx

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I’m so sorry she’s suffering so much. Just is so heartbreaking and so hard for you as a momma.

Have you had them check to see what her omega levels are? I’m curious as myself I had Zero omega 3 higher in 6 (bad ones)

I started supplements Nordic Naturals (they do have liquid & chews)

They can do a blood test to check the levels. Inflammation causes disease, also have you been food allergies tested?

I am now gluten dairy & sugar free (hard to do but it’s all none for inflammation) have you taken away any foods? I’m not even sure if you are all liquids or what..

Legumes? Night Shades? High oxylate foods?( google them and see if you feed some then take out and add in .

Elimination diet (hard to do & it sucks, but you’ll know what is not good)

I’m not sure where you live, but I’m in USA and my primary doctor is a ARNP and practices functional medicine. You can google institute of functional medicine. Also google DR. JOCKERS.

Keep being tough and your babies advocate you’ll get answers, it’s taken me 28 years to get to where I am today I’m getting closer just diagnosed with vasculitis, that’s in a flare of my cranial nerves and abdomen. I’ve had MRA/MRI’s Head/neck/ pelvis/abdomen and now having a mri Enterography this week. I’ll see the neurologist 18th & gastro Dr 23rd Of this month so I’m hoping for answers to all come and a treatment plan to start.

Good luck

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Also my test the rheumatologist did all came back normal, she gave up on me and sent me back to my primary & the neurologist. Luckily for me the neurologist kept looking and started me on a medication for the neuropathy. He’s been the blessing for me, a true GOD SEND! He said it’s gonna give us a run for our money so we’re gonna have to just hunt till we find it and sure enough to pelvis/ abdomen mri he ordered showed up something in my Bowels (I just had these symptoms start 1 month ago right after I saw the rheumatologist and had bloodwork done) so I’m truly thankful for my Neurologist not quitting! I kept telling him it’s not normal for me to be working 40hrs going to gym, yoga or walking every night and this happens and I can’t do normal daily things without being in pain(wash dry curl hair, rub face) lay flat on pillow or left side without pain. He agreed so he said will order more tests until we find it and put you on meds to get the get the pain controlled. Which it’s helping.

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