Daughter 12

[shine78]

my daughter as behect's disease been diagnosed for 18 months been on different medication don't know what's next I feel confused and don't know how to help her her doctors are meeting today to discuss her treatment and where to go next. I just don't know where to go or what to do next to help her x

[billi]

Hi and so sorry for your pain.  It's always much harder when our children are ill.  I can tell you that BD takes its time for diagnosis and the best treatments for each individual.  We all have the same symptoms but some more so than others.  We have similar medications but we all react and suffer side effects in different ways.  Yet once we find the right path there is life with this disease.  As to how to help your daughter is another matter.   She is still young and has her whole life ahead.  Be supportive, help her to be strong and positive.  She must take her meds but also ask questions of the doctors as to side effects, long term use, and possible future effects on the body.  She will with your guidance be able to lead a good life bearing in mind that she will need to rest more especially during a flare and learn how to deal with the many symptoms as they occur.  I hope this helps you and I wish your daughter all the best.

If you have any specific questions you can message me privately and I will,do my best.

Billi

[Michja]

Hi, I'm sorry to hear of the trouble your daughter is having at the moment. The best thing for us mothers of children battling the pain BD brings, is believe them. Know that the Dr's usually know best and if you are doubting them I'd go to the Center of excellence in London. Or somewhere near you. I'm in Australia but met some of the lovely specialists at the Paris conference a fer years ago. 

My daughter has had BD since the age of 6 and is now 13 and my son started with symptoms at 5 and formally diagnosed at 10.

Good luck.

[LesleySG]

Get her on Infliximab or Humira as soon as possible. It has transformed our daughter's life

[shine78 in reply to LesleySG]

shes had them both

[AmandaMoseley]

It is always hard and there is no easy option as sooner or later the Behcets fights off most of the drugs

There is a new parents group on facebook if you want to talk to other parents

[shine78 in reply to AmandaMoseley]

what's the group on facebook I would love to join

[AmandaMoseley in reply to shine78]

send me your face book details and i will add you!

[CeeJay12 in reply to AmandaMoseley]

Hi. My 14yr old daughter has just been diagnosed with Behcets and would love to join the FN group for support too. What's the name of the group or should I PM you my details? Thanks 

[AmandaMoseley in reply to CeeJay12]

send me a pm and I will add you

[Michja]

Did your daughter get use to Infliximab and not be able to come off steroids? My daughter was put on Infliximab when the other medicines didn't stop the development of uveitis and the pressure reached 38, that was 3 years ago. She has been having maximum dosage for her weight and 4 weekly Infliximab. This year has been rotten with all of February spent in bed and unable to walk due to the nerve pain coming from her spine. The usual symptoms on top of this. My feeling is that her body has begun to be use to the drug. Since Feb IV steroids and high dose but now tapering to 15ml. My daughter wants to come off the steroids due to puffy body but to be honest its the best she's been in a year. I hate steroids and then I love that they have given her back a sense of freedom. What happened when your daughter went on Humira? Did it work for a little while and stop? Sorry I just really would love to know. My daughter is on daily dose of Colchicine 1000mg, Gabapentin x 3 600 ml a day, Azathioprine 87.5, Celebrex, Acimax, Efexor, Meletonin and Caltrate Plus to help with her low bone density. The reason I have popped all that down is you may have tried something I could mention to our Rheumatologist to help my daughter. We are trying to find out the name of the inhaler to help with her mouth ulcers.

I feel for you all as a family, especially your daughter. It's hard to watch our beautiful kids in pain and we'd do anything to take it away from them. 

All the best. x

[Richard12 in reply to Michja]

Hi Michja

We met in Paris at the Behcets Conference. Very sorry to hear that your daughter is still suffering badly with the illness and that you son has been diagnosed as well with the disease.

Here is some information about treatment for mouth ulcers.

behcets.org.uk/wp-content/u...

Here is a link for the other facts sheets from the Behcets Society website.

behcetsdisease.org.uk/infor...

Hope this helps you

Regards

[Bnugent]

I have Behçet's & CVID. I'm so sad to hear about you daughter as my five year old is showing early symptoms since she was two but no positive labs yet. It breaks my heart for you.  I've been getting monthly IVIG infusions to help with the infections that occur with the CVID & the skin ulcers with the  Behçet's. Have her doctors considered the newer oral Med Otezla? I've just been started on it & the results seem promising (knock on wood). The safety profile is amazing but it's still in the third phase of research for Behçet's & only approved for psoriatic arthritis right now. The starter packs are month long courses so if u can find a rheumy to give u a few like mine did they can work on the insurance approval while u can test to see if it works. The reports say patients are coming off bags of meds, pain improvement is amazing & energy is 10-fold. Now, the big side effect is increase GI clearance & nausea so Bental is sometimes given to help w/ that or Reglan. 

I don't know if this helps but I just wish someone would have given me a blueprint for my diseases Behçet's & CVID & the meds I needed to make me better & not worse a long time ago. It is horrible that so many of the meds for these diseases are trial & error. Where do u live? There is an incredible rheumy I. The Atlanta area where I live who is known to be the "genius" of these diseases. He's the one who ran the genetic test & discovered my illness after several US trips to Mayo & Northwestern where I was told my illness was self-inflicted & in my head. I hope You continue to fight & give your daughter the encouragement that she needs. What a horrible illness this is, but there is hope out there & I'm a believer in prayer & will add you to my prayer list. 

God Bless.

[Michja]

I know I will be taking the name Otezla straight the the Rheumy. Thank you. It now depends on if children can take it or now. 

I live near Melbourne in Victoria, Australia. Our Rheumy is amazing and to be honest I love her to bits. She has helped my daughter from the age of 6 and now my daughter is 13 and formally diagnosed my son last year and helped him too. l feel we are completely safe in her hands and I know she 's doing all she can for my children. Now she's chatting with other specialists from all over the world on line, to help and achieve the correct treatment. I admire her for not thinking she knows best and for accepting the help of others. It's in my daughters best interest.

Thank you Bnugent

[Michja]

Thanks Richard,

Lovely to hear from you again. I would have loved to have gone to the last BD conference but it all gets a bit to expensive. I will look at the fax sheets on ulcers, thank you.