hi lisa, g.o.s.h have been great with Holly, she has been treated by them since she was 9months old and was amongst the first few to by diagnosed with c.i.n.c.a syndrome there. we are under prof woo but see lisa macan quite allot she is fab, have to say they all are fab. prof woo and her team have done a lot of research with Dr prier(not sure of the spell in)in Paris who was the Dr who first diagnosed c.i.n.c.a. Holly is doing really well under them, she was the first to have the anakinra trial.and is doing brill with very few hic-up. there is always down sides to every drug, but am not looking for a miracle just some quality of life for her while we still have her.i would definitely say that fynlay would by given every chance to thrive and live life to the full with gosh.

glastonbury_02 <glastonbury_02@...> wrote:

Hello everyone, and thankyou so much for all your messages we are
overwhelmed by the response that we have received and all so
confused, very confused!!!!!!!!!!!
We have had are meeting with Dr Hull after his trip to the vienna
conference, where he learnt a lot more about CINCA/NOMID and also
spoke to the NIH about fyn.  We are apparantely now going to be
referred to GOS at long last, how long that will take i dont know,
there are trials there under Professor Woo and Professor Hawkins for
both children and adults.  But we still are unsure if he will get
the Anakinra there due to his age.
We have been told about the possible side effects of this drug which
is, it can make them perceptable to infections that can be fatal and
also there may be the risk of malignances. which obviously has
scared us a lot. Has anyone been told of the possible risks with the
Anakinra and side effects like this or others, if so please could
you let us know.  His age is a problem here i think, for getting the
Anakinra.
Anna from the NIH e-mailed me what tests would be carried out at the
NIH to get a base line assessment, which i showed to DR Hull and now
fyn is getting an MRI scan here on the 2nd of sepetember.  I also
insisted that he should have a regular blood test to monitor his crp
which i think is important and i have now arranged for him to be
weighed monthly so his weight will be monitored consistently as his
weight and growth has stayed static since april and before then he
had only gained one kilo in 6 months. I dont really think it should
be me insisting on these things i think this problem is due to the
fact that we are not being seen by doctors who are familuar with
this syndrome and therefore there is no team work or consistency
with his care, or knowledge of this illness.  Infact the only doctor
we see who has any knowledge of it at all is Dr Hull, who thank god
had heard of it and after assessing fyn diagnosed him very quickly. 
We can not thank him enough for this and we have expained to Dr Hull
the frustration going to all the doctors and specialists for fyn to
be examined and not one doctor has even heard of it.  I have to sit
and explain to them what CINCA is and they still are not sure what
to look for.  This is why my baby should be at GOS or NIH
immediately. 
We thought that we would wait to see if Great Ormond Street would
offer us the Anakinra before flying out to the NIH to go on the
Protocol there, this is only due to the fact that geographically it
would be easier for us.  Are we doing the right thing???? we would
appreciate your opinion's on it.  As we to think time is of the
essence and fyn is having regular problems with severe pain from the
cerebal irration at night, still has episodes with fevers every two
weeks which are just suppressed and manged only to a degree with
steiods, voltarol, paracetemol and morphine.  His mouth  constantly
has thrush and ulcers, he does not eat although we try with him
every day. his hands are twisting up more and more, we think due to
joint inflamation.  Even last night fyn whimpered in pain all night
and neither him or myself have had hardly any sleep, the pain has
continued through this morning and colin has not been able to put
him down he has had his usuall voltarol and steriod and now we have
had to give him morphine to relieve the pain.  This is not an
episode he had that last saturday and it ended wednesday.
We are a very close nit community in Portsmouth and the whole town
has started Fund raising for fyn so that finances and costing of
what ever he needs in the future will not be a problem, we and they
know that London or Washingon will be costly and are going to make
sure that he has a trust fund that will pay for this.  But once we
have got fyn on the trials in London or Washington and he is more
stable. I will help in any way i can to start up a Charity or fund
raising for our children and also i think we must and will raise the
awarness of this syndrome, as when there is no recognition of it in
doctors, specialists, and local hospitals, our children are put
through unnecasary pain and can be in danger, It also causes such
terrible frustration as i know that you have all been through and we
are still going through with fyn. If we raise the awareness other
children and there parents may be saved from this and the children
helped sooner.
Thankyou so much kate for talking to the NIH on fyn's behalf we are
strongly considering coming to Washington, life would be so much
easier if we lived in the states and not the UK, and perhaps we will
get what we need at GOS i dont know if we are making the right
decision hanging about here?  Kate, i have been trying to contact
you since march when we got the diagnosis but i was e-mailing you
and others from the NOMID web page and must have just been doing it
wrong, but i know i was definately  not thinking straight, as im
sure you can understand.  At least we are in touch now and we feel
like we know you all already, after reading the personnal stories
and seeing the photos.  we have posted a few pictures on this yahoo
group website so you can see fyn and his brother harrison and
isabella his sister.  I would like to post Fyns's story on the web
page perhaps we can arrange  to do that at a later date. 
Hi to Dori and Karon durrant, Karon moore the Hand family in
Australia Sherri and Miranda Putvin, Mel and holly and Colin bailey
debbie and tilly and all your families and Hi to everyone.  We hope
you are all well and am sorry we have not e-mailed you all back
individually but as you can see fyn's hasn't been to good and im
still battling to get any where we are emotionally and physically
exhausted, but still determined to get the Anakinra.  And to get him
to specialist care and with the support and advice you have gave us,
we know we will get are beautiful baby sorted soon so thankyou all
again.  Please reply if you can and i will keep you all informed of
what progression we make.  Sorry for the spelling mistakes i am so
tired.  we would appreciate any advice you can give on the Anakinra
and its risks
Hugs and kissess to you all love lisa, colin, harrison isabella and
fynley xxx