My daughter had yet another flair & ended up in hospital for 5 days getting out the Wednesday before Easter. She has had terrible bowel problems & it seems to just stop working. She was given heaps of this disgusting drink and on day four, slowly started to move blockage. This problem has been ongoing after a Rhumatologists wouldn't listen to her pain and stretched her bowel in December 2012. Wow it's horrible to watch a 10 year old go through that pain.
While in hospital the nurses thought it'd be nice if Jaida had a photo with the local school boys handing out Easter eggs. I was thrilled. BUT when asked about why Jaida was in hospital I made a mental note to speak clearly about BD. I even went as far as to write it out on paper & got my Dad to take it to the paper to double make sure they got it right. The twit got it wrong. In a way that would anger you all.... He said Jaida was the only child in Australia with BD. I felt sick. I knew someone would wright in to the paper & they did. This lady said Jaida wasn't the only child in Australia but did go on to say they were a part of the American BD Ass. I've been so private about Jaida' having BD as I find it too difficult to explain. Jaida has been in the royal children's hospital 1 or 2 weeks in 1 week out for the last 6 months & the last thing we feel like doing is bang on about it to people. But I was so disappointed. Bugger them.
Good news is Jaida just had her 3rd Infliximab infusion yesterday & today she looks good. After only being at school 7 half days last term, I think Jaida will start half days next week. Little steps, if she does too much her little body will pay for it. I'm so excited for her.
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Michja
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What a lovely name Jaida is ! Is it a family name or from someone you know ? I think it is beautiful just like the little lady that owns it. mwah !
I am so pleased for her that she is feeling a bit better as her medication goes on. It will be lovely for her to enjoy a little bit of school and playtime with other little peeps.....I really hope she has a lot of fun, she deserves it. You must be so very proud of her as a protective mum (and rightly so) to see her going through these dreadful medical routines and coming out the other end smiling and getting a bit better. A...... biggest hugs hun XX
With regard to the press sweetie........in all my years and odd dealings with them I have never met one of them that really knows their arse from their elbows and you can't believe half of what they print anyway. As for the 'helpful' lady that wrote in, any idiot would realise that this was purely a typing error if you were in her position so just regard her as another busybody who has nothing better to do than moan about something or other instead of trying to promote a positive image for awareness of the disease. She should have known better hun so .............. *raspberry* to her then !! LOL
Keep smiling hun, sod the rest of them ! It's just Jaida that counts !
No need to criticize or think badly of other Behcet's patients trying to help. Negativity and name-calling is totally unnecessary, especially since others don't know the facts. Sharing info and trying to be helpful can happen in many ways.
I believe the kind person who wrote to Jaida via the press was the very compassionate mother of a sick BD patient in Sydney who has been so warm and kind to many of us in several countries.
Anyway, research continues into the role of oral streptococci and how the immune systems of Behcet's patients seem to acquire hperreactivity. More should be published on this as papers are submitted for Feb. 2014 publication:
Thank you all for the reassuring comments re media pain. I truly don't think the lady ment any ill feelings, I probably should have said that in my little rant. I'm sure she would enderstand.
Dear Amietamant could you please pass on a message to the lady who wrote in, that I realise Jaida is not alone. But I hope her child is going ok. This sight might also be a great contact for her.
Jaida didn't go to school as she has a huge cold sore looking thing up her nose, spreading up to the left eye on the outside. It started yesterday so we realised she would have to have it looked at, therefore no school. Hopefully tomorrow.
Xandii, Jaida is after believe it or not, Jada Pinket-Smith. I'm not sure if they are still married but she was Will Smiths wife, he's an actor. We added the "i" but here in Australia we have seen it spelt with a "y". We loved the name & it suites her. Xx
Of course I will let Noreen in Sydney know. She is already active on the busy Yahoo behcet-support board which has members from all English-speaking countries, including a dozen Aussies, some Kiwis, Canadians, Americans, and Brits.
Her son is an adult who has suffered from serious Behcet's involvement, including Transverse Myelitis. Unfortunately, Fehmeed seems to be one of those men who struggle with severe Behcet's despite excellent treatment.
A lot of us have had very nasty sores in and around the nose due to BD.
Please don't do anything without checking with doctors first, however a steroid asthma spray seems to help a lot of us.
Sounds weird and I had to talk the doctors in Sydney into it but it is good for mouth, genital and nasal ulcers - would look funny if anyone was watching where we are spraying it!
Just got back from the doctor & he put a new laser on the area also on her ankle joints. Will be interesting to see if it makes a difference. I have had a sore up my nose for a week now & I'm positive it's a type of ulcer, Jaida's looks the same. I was alwayse told they were cold sores but at RCH they said they are ulcers. Wow it's all confusing. We have a steroid cream to help but they are just so sore, not to mention swollen. I will look into the steroid asthma spray. Was it Seratide? Jaida has just started with a flair as joints, ulcers in mouth & below, and her eyes are playing up big time.
I think the world of you all & love being able to have a good old winge, without people judging me. The best is that I've learnt some tricks in the battle of BD.
Just had a look at the inhaler itself. It has written on it QVAR 50. From memory the pharmacist said normally it is QVAR 100 for asthma. Anyway, the few times I've used it I think it works.
Have a look at the UK BD website - I think it comes up on one of their fact sheets.
How Jaida is feeling a bit better. Also, look after yourself - the carers get overlooked!
Jaida once again in a massive flare up. She is just so sick of it all and her body is in pain from top to toe. Jaida has been on the couch, bed or bath for past three days. Fingers crossed tomorrow brings a better day.
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A bit of advice 
All I want to do is cry!!!
Advice please!
infliximab not working and legs not working very well either
Antibiotics and Cellcept
