My daughter has started having 4 migraines a week. Why have the shocking headaches turned into sickening migraines?

[Michja]

Jaida is 11 years old and along with a flare and all symptoms disgusting, ferrel migraines are taking hold. The past three weeks my daughter is having up to 4 migraines a week, making her vomit with the pain. Going to the Royal Children's Hospital next Thursday but was wondering if anyone has any advice.

Jaida has been having bad thoughts of wanting to die, now diagnosed as having sever depression. Behcet's it testing not only her body but her beautiful little mind. I hate not seeing her smile I just wish one of these bloody drugs would take the pain away.

Have just paid for the BD conference in Paris. Booking flights next week. The money is definitely a stress but I feel we have no option. All I hope to do is learn more about this crippling disease and meet the leading specialists in the world. I'm just so scared of leaving Jaida. I hope by September she will be in a better place.

Sorry to go on, I needed to vent.

Michelle

[goodlife]

Michelle,

I really feel for you, I can't imagine how difficult it must be to watch Her suffer so much.

There are lots of medications out there that can act as a preventative. I take a daily dose of Amitryptyline which does make me a little slow to start in the mornings....but stops these dreadful headaches. There are other medications that people mention on here so I am sure she can be given something.

I am going to message you privately, regarding the Bd conference, love Jill

[sian35]

Hi Michelle

So sorry to hear of Jaida'a suffering.

If the infliximab is not working there are other drugs the drs can try. I am on humira, similar to infliximab but without any mouse proteins. (or something like this!). The immunologist, Matthew Buckland, I am seeing at the Royal London emphasied to me that there are lots of drug that they can try out and people respond to them differently. Also, my broither in law is a medical professor who does some work on immune system illnesses and he says that sometimes a drug is needed to 'switch off' the major flare so, in my opinion , for whats its worth I would recommend chasing the drs to try out some more different treatment options.

Hope you can make some progress and hugs for Jaida.

Kind regards,

Sian

[Michja]

Thank you both for the important information. We are going the rheumatologist on Thursday and having a good long hard look at Infliximab.... I will be asking about humira, thank you. I'm lookin forward to hearing from the best of the best in Paris. Feeling so relieved its only a few months away.

[sian35]

Good luck on Thursday

[sian35]

Just another thought - I am still on mycophenolate as well as being on humira. They work in differfent ways so drs want me to have both.

Let us know how you get on

[Michja]

Dear Sian35,

I'm having a great deal of trouble getting the rheumatologist to understand. I'm starting to think its me.....

I do understand its a bad pattern the brain gets into when my daughter can't sleep but I also think its the constant pain in joints & muscles and now 3 migraines a week etc. The problem is only sometimes my daughter have red swollen joints. Yesterday wasn't one of those days, looking at her skin her joints look fine but she flinches in pain when they move joint. Last week every finger joint was glowing red. There seems to be no consistency to BD. It amazes me how my daughter manages to deal with ulcers everywhere, but these migraines are shocking. I feel for you all who get them. I do have BD but have only had a few true migraines, I mainly get bad headaches.

Rheumatologist thinks best to try and get sleeping pattern better. Jaida starting melatonin tonight. We are hopping this will help her depression but Dr also thinks to follow psychologists recomendation.

Didn't talk about humira as Dr seemed to be of the opinion these medicines will help. Fingers crossed and I have all the info on humira. Thank you so much. I will let you know how it all goes.

Michelle

[goodlife]

Sorry to hear you are having such a tough time.

It never ceases to amaze me how a joint can look normal but cause utter agony.

It is especially tough given Jaida's age that she should endure such pain.

My thoughts are with you Michelle.

Jill

[Michja]

Jill thanks heaps. I was starting to wonder if I should put that as a question to all. Does everyone have extreme pain without the redness?

Today is a good day for Jaida at school with a big headache but trying to stay with her mates. She misses them when she's home.

Michelle