Home again & hopefully for a long time.

[Michja]

After being in hospital for five days, we are home again. Hopefully not going back ever...

The most important thing is to get my daughter on a lower dose of steroids. The drs tell me this will improve her mood & make her able to cope with more. If this works, ripper. The only problem is that our past 4 attempts we get to 15mg & the flare begins. The uveitis & pressure are under control for the moment, so I feel positive the Infliximab is working.

We have also been told to take Jaida regularly (weekly) to a psychologist. I think this will be beneficial as Jaida is worrying about missing school & at time her future. Drs think the massive headaches might be from the 2 hours in the class room & pressure she placed on herself? We will encourage Jaida through this pain with some form of deep breathing etc, but what about the times when her ancles, elbows etc are physically swollen? I'm feeling confused not to mention, Jaida said, "do they mean I have to go even when I feel so sick with my pain in my whole body." I know if it was just the ulcers, things would be ok. Even though they are everywhere in & hanging out her mouth, I know most people would be feeling a form of pain.

I have read you all say how at times you can't get out of bed as your body feels so shocking. Jaida does well at school and enjoys her friends, even though she isn't able to go flat out like other kids. Time will tell & I pray that in a month I can write, all is brilliant psychologist & meds all working. Dear me its hard being a Mum. Xx

[bailey23]

Sending you big hugs to you and your family. It isn't easy but your girl sounds like an inspiration to all those people that moan about the small things. I hope things improve.

Hugs

Angela

xx

[Michja]

Thanks Angela & thanks for listening to my moan. X

[andreafm]

welcome home I am glad the doctors are trying to get a grip of things. I have been on infliximab since jan/feb of this year and so far it is the best I have had out of all the immune suppressants,, so I hope it is just as successful for Jaida and lowering the steroids does also improve my mood swings and a psychologist who knows about rare health conditions and how they affect you will be helpful.

You certainly don't sound like you are moaning and sound like a great mum whose doing a great job despite what's being thrown at you and your family. Staying in hospital is a really difficult thing especially with a child.

Hoping things are looking up now and will continue

Andrea

[Michja]

Thanks for your beautiful words Andrea. We are taking small steps & hope Jaida's health will improve. I'm fairly sure you & Jaida almost started Infliximab at the same time. Could you please tell me how your ulcers are going? Jaida's are terrible. Thanks again Michelle x

[andreafm in reply to Michja]

the mouth ulcers for me are still appearing but not as bad or lasting as long as they did. the ones I had on my bottom are still flaring but not as bad or as long.

I also have neurobehcets and I had really terrible weakness, spasm, joint and muscle pain, brain symptoms, vision, speech and many others. These all I think have reduced but not gone away completely....but at least I am living a better life than I was before the infliximab infusions.

I am 52yrs old now and have been having problems nearly all of my life. I wasn't given any proper treatment until the last 6-7 years and my symptoms [until now] have never given up.....it is my belief that if I'd had treatment much sooner I may not have had to endure the progression of neurobehcets and the treatment I am having now would have helped this sooner.

I think that diagnosis and treatment is so much better now than when I was a child and that Jaida is getting the best treatment early enough to give her a chance for remission.

I do hope so

Andrea

[infliximab74]

Hi

I dont think we have met before on here. My name is Christine and felt i had to post something. I have had behcets from the age of 9 but struggled to get a diagnosis as i was mis diagnosed like many others! I am now 39 and a mum of 4 with 3 girls aged 17, 2 and 1 and my first born boy who is now 18. From a childs point of view all i wanted to be was like everyone else. I was hospitalised up to 16 weeks once age 14 very ill indeed. It was important to me to spend as much time as i could with my friends in school and out as they never treat me any different and it made me feel accepted. My mum and dad made this happen for me even at the hardest of times ferrying my friends to and from hospital just so i could get a bit of normality back. It sounds like you are doing your best for your daughter. I dont know what i would have done without my mum. She was there at every appointment, ward round operation and travelled to the other hospitals with me for disgnosis. I have a sister and a brother aswell which made things difficult but she was always there. We are so so close now and have a special relationship. I thank behcets for that as it brought us closer than most parent and daughter. Even now my mum is my back bone when i am ill and i strive to be the same with my children. I believe you are doing your best as a mother and i am sure Jaida will thank you for that as it is EXTREMELY hard to care for someone you love with BD and its unpredictableness!! I will also add in 2004 i was given infliximab and it was the bezt i have ever felt. I hope it does the same for your daughter. I got my life back started walking again and had no flare for nearly 3 years ( a record for me) Prior to this i was hospitalised for 18 months as no drug was working only iv steroids at very high levels. Steroids arent good at these levels!! Stay strong and i look forward to hearing your daughters progress. X

[Michja]

Hi Infliximab74, I have been reading all about Infliximab working for you. It gave me hope and I head it to Jaida who looked at me saying, " that could be me". It was great to read positive information.

It was so wonderful to read about the relationship you have with your family and we are the exactly the same. I'm so proud of Jaida and the way she is so pleasant to all the Drs and nurses. For example, when she was having a canular put in her arm I could see it was hurting but she didn't cry, just watched. The nurses praised her wishing all kids were that easy. Walking out I asked if she felt sad or angry when it was happening, Jjaida said " I feel like cring but don't because I don't want the nurses to feel bad. They are doing their job & they don't really want to hurt me". I love her just so much for all that she is. We are a very close family, Jaida has a brother Ruben & they are great mates.

We have had a great Mother's Day as Jaida definitely looks better. Hopefully it continues so we can getJaida of steroids. If the Infliximab continues to improve hopefully we will be able to lower the other meds too. Xx

Happy Mother's Day to you all. Xx

[scruffy1]

hi michja my name is chris sorry to read your post regarding your daughter and BD but as I have discovered there is light at the end of the tunnel,i was put on infliximab four weeks ago I had my first infusion after two weeks in hospital and the second two weeks later and I will have my third at the end of may it has given me back normality I feel better each day and as for steroids I was on 40mgs before infliximab and I am already down to 25mgs so I hope this helps in some small way and it sounds to me that jaida is taking great strength from your support of her together you guys will get through it keep fighting and never give up and as I have found this community is there for each other all the time so rant blog moan or whatever and all you will receive is support best wishes to you and jaida

kindest regards chris

[Michja]

Dear Chris,

Thanks heaps for your beautiful & supportive words. Jaida has turned the corner little bit by little bit, due for her 4th INfliximab in 2 weeks. We are also gradually reducing the steroid from 25mgs now on 22.5 all going well so far. The Drs said the other meds can wait for another time.

To hear people have had such a wonderful response makes my heart sing. Thank you. Michelle xx