Hi everyone

Well, we have just been up to St Andrew's University in Scotland, for 4 days, to sort out my daughter so she can do a PhD!!! As we live in Southampton we flew, with special assistance, to Edinburgh!! She starts at the end of April for 3 years.

Her RA is not totally under control... and for those who remember she also has a lung problem (still being debated as to the cause - although I have just found out last week that I also have the same lung problem - as well as the RA!!!). So here is a new chapter in her RA life (She's now 23 years)... and she'll be a long way from home, but it is a lovely place, and I think she'll be well looked after. When she was in Oxford and London, we could get to her when she was really ill, but this will be very different.

She's still on MTX...which her lungs don't like... so final appt is in April before she is handed over to the Scottish team!! Although it sounds like she'll be able to fly home in the holidays... flying on her own as I can't manage the trip too often! I really hope the MTX can hold things reasonably well, so she can continue with her studies. She's just had 2 terms off to recover from major lung problems - which triggered off the RA - but is a little better now and managing working in our local supermarket for 2 days a week, just 4 hours each day!! How she'll manage a full-time course is anyone's guess - but I am pleased she's going to give it a go!!

So if there are any other 'younger ones' out there.... keep to your dreams - even if you have to delay things. She's managed a degree over 4 years in Oxford and one year in London doing a Masters - and now has had the 2 terms recovering. London Smog didn't help at all... St Andrews' air was lovely.

I'd be interested if there is anyone else who lives in St Andrews... just in case!!

Anne

Hi Suzanne

Thanks for your message. I am doing well on humira still, although I am also needing 3 mg of prednisolone.... which may be causing me some liver problems! I am about to re-try sulphasalazine again to see if that will enable me to reduce down the steroids!! Humira has certainly been my wonder drug and has stopped all the knee and wrist problems I had! Just get the odd swelling on fingers when I try to reduce the steroids.

I am so glad it is working for you too. My Rheum nurse said they'd had lots of people with loads of problems on it, so it was nice to hear from me, that I've had no side effects at all.

I'll keep people posted on how he gets on in St Andrews.

love Anne x

Hi Anne I know you must be worried but at the same time so proud of your daughter, she's a real example of how to get ahead when having to cope with so many different health issues. Lets hope St andrews air suits her.
Best wishes
Sheila

Hi Zena

The debate is still on about whether the bronchietasis (lung problem) is linked to the RA!! Rheumatology say no, and Respiratory say no. However to throw the spanner in the works, I was also diagnosed with bronchietasis last week... and they are saying it may be genetic to me!! So we still have no idea, but I might find out more next week when I go to the hospital again. It is known to be a complication of RA though - but is not an immune disorder as such. It's a structural change in the lungs, so they produce too much mucous which can easily become infected.

I have 2 others as well (another daughter 25 and son 20) and so far they are ok. My mum also had RA - so I am convinced for our family, anyway it is genetic; but there must have been a trigger. I think we've had a few debates on here about triggers... but my daughter had been very stressed when she started Uni 5 years ago... and I know my RA started the week my mum died. But obviously we have no idea whether it would have started anyway!

Skype is great isn't it. We use it a lot for my other daughter in London. St Andrews was really beautiful - and lots of fresh air (albeit cold!)

Take care
Anne

Hi Anne - big congratulations to you and your daughter - fantastic achievement! I work at University of Exeter, and they have an extensive procedure to provide support for students who have extra health issues to contend with - I expect St Andrew's will have something similar, so I do hope that she gets any support she might need - the good universities place great importance on encouraging equal access to education, and lots of support is available. It's excellent that she's been able to take some time out to rebuild her strength and I wish her every success in her research. What's her subject?

Best wishes - Sylvia xx

Wow, what a clever girl Anne! You must be very proud of her indeed. The concern is completely natural, comes with the job description of being a Mum.

Two of our children have autoimmune disorders though not actual RA (fingers xxx) but they have done so well in their education and careers. I have a theory that when the body lets us down, the brain works overtime to compensate:-) Not sure if it applies to me though!

Good luck with hospital about the bronchiectasis. I have a friend with this too who has RA. She questions whether it is the RA or the methotrexate.

Good luck and well done to your daughter and yes, Skype really shrinks the miles:-)

Take care,
Lizxx

Hey Anne!

Thinking of you a lot today as I'm off to london
I know you've got the lung appt

I'm so pleased to hear about your daughter

I've done sections of the MA on open Uni over the years and looking to Southampton Uni for my phd
My family local etc puts a spin on things

But very well done to your daughter, and you too for encouraging and supporting her

The bronchi thingy. I've been told once I had it
But since then it went quiet and as I generally don't struggle with breathing it's ok
It's just when I do struggle for a cold or feeling rough with the ra the gp mentions it again

The mtx does affect the lungs and there are alternative meds but none of these choices are easy

Much love
Jenni xx

I did psychology
They'd like me to consider a phd. The thing for me is being reliably well I think.
The ra is dire at time and I'm in and out of hospital...

The subject I'd like to do for the phd is around the education of children who have had extensive early trauma.
There are teaching methods for these kids, now well respected, but its viewed as a niche problem for a few children but I now know through the adoption community how many adoptees have huge issues in education and have little if any support
The reality of the grim results for children in the care system speak for themselves but at the moment children who are adoptive kids in the last 20yrs and suffered very high levels of neglect and abuse aren't counted in this group as disadvantaged in anyway.
This means the avenues of specailst support are often closed to them and their new families.
I'd like a resource for schools to include modern adoptees and looked after kids and the training to be core in schools and in teacher training. Actually I think a lot of kids have had a level of trauma all the way from a loved family pet dying through to the loss of a grandparent, when a parent leaves home etc. there's a spectrum of trauma and I'd like that recognised and catered for in a global way using specific teaching methods.
So for example. A hyper vigilant child who struggles to concentrate in school and is turning around lots at the moment would be sat at the front of the class, like for any child who struggles to focus on teacher.
V
Hyper vigilance, though, means their brains are wired to think "danger from behind" so their periferral vision is much stronger
And they spend their whole time turning around and getting into even more trouble.

Do the thing to do is sit them at the side of the class, back to a wall, facing teaching to one side, window and doors to the others.
Or at the back with a calm adult to sit near and regulate their responses by.

Sorry!
Waffling now but it's such a passion....

Thanks for your "waffle" Jenni - I agree totally with the need for more recognition of the impact of early trauma on children's ability to settle in school. It also applies to children who suffer parental or sibling bereavement - and from when I worked in school, that's quite a big cohort, when taken over the long term. There seems to be a small amount of support when the bereavement first happens, but then is "forgotten" and the child is expected to cope normally. That so often is not the case, as the child does not follow a standard pattern of development.

However, there are no avenues for getting advice or support in managing these differences and all too often the child slips through the net and is further disadvantaged. In my counselling class yesterday, we were discussing how little attention is given to childrens' emotional development in standard education - they seem to be taught that the only route forward is to control their feelings and give no outward indication of distress, and to conform to the classroom rules of behaviour at all times. But what happens when the child is confused and conflicted about their feelings - when do they get help in learning to deal with those aspects?

Oops - sorry to hijack your thread Anne. Wishing your daughter every success in her studies - best wishes - Sylvia xxx