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Hi there,
I dont really know where to start, you can see my little boys posting on the nomid site set up by John and Kate Barton.
Our little boy is 3 next week, and had the rash from 4 days old, however apart from the rash he has alway defide the doctors as his development is normal and he has always grown at the correct pace.
He was put on predisolone last May so has been on it for a year now, and we started him on 10ml / 10ml alternate days, moving it down now to 10ml / 2.5ml alternate days and now he is on 3ml / 2.5ml alternate days and 3 colchicine tablets.
Charlie is very mild, his bloods used to be very high - ie esr 81, crp 50 but now he is within normal boudaries and we get his bloods done at a hospital near us every month, then drop his steriods another ml to eventually get him off of them.
He is under Professor Woo at Great Ormond St in London, we live in Ruislip just outside of London, where are you?
Charlie is not eligable for the Anakinra trial as his bloods are so good, however we are back up there in August and I think she is keen to get him onto it, so we will see.
Charlie is also a germ magnet, and is often very ill in the winter, he tends to have episodes where he cant walk for 4 days, and high temperatures that for him lead to filbrile convulsions, of which we have had 2 (which is probably not that bad considering what these children have to go through)
I tend to over react with everything, as you do put any illness down to the Cinca, however as I said he is very mild, and not showing any of the genes / genetic info in the bloods that they normally show, neither is myself or my husband carring the gene.
We have just had another boy Max, who is fine, is now 10 wks old and not showing any signs of Cinca thank goodness.
It would be good to get Fynley referred to Professor Woo at Grt Ormond St as she seems to be the top person in the UK on this subject, maybe you have already seen her?
I remember how we felt Charlie was only 10mths old when we finally got a diagnosis and your world has just fallen apart, it will get easier I hope for you as the Anakinra sounds perfect for him.
Speak to you soon
Karen, Ian, Charlie and Maxwell Moore
glastonbury_02 <glastonbury_02@...> wrote:
glastonbury_02 <glastonbury_02@...> wrote:
Hello everyone, please could you take a minute to read are e-mail as
we are new members.
Our names are lisa and colin, and we have a son of 14 months who has
nomid/cinca we live in the uk and are desperate to contact parents
who are in the same position. fynley our baby was only diagnosed 10
weeks ago and we have been struggling to come to terms with it,
first disbeif and confusion as to why! as i am sure you all have
been through, youselves. Now we are trying to be positive and find
the best possible route for fynley, with his quality of life and
illiminating the severe pain and suffering he goes through being the
most prioritised reasons. We have already spoke and are in contact
with Karon Durrant, seth's mummy and already she has helped us
immensly. Just being in touch with kind people who know what we are
going through and have expeirenced simular situations is reassuring
and comforting. As the world becomes a different place from the day
you get the diagnosis, we have felt like we are so alone.
Thanks to karon we have now contacted the NIH and spoke to both
scott and anna who are all quite happy to have fynley, in the nomid
project and the opportunity to get a full assessment of fyn's
symptons and a base line assessment on what presents.
He's daily medication now is voltarol every 8 hours, ranitidine
morning and night. prednisolone 10 mg a day, oral morph for the
chronic meningitus when needed and 250mls of paracetemol for the
temperature when needed. He has regular two week episodes and
although the medication has dampened down the rashes and joint pain,
still his head pain is very severe. He is not presenting any eye or
ear problems at the moment. and he does have a few days every
fortnight when he is well. He is a germ magnet and has also had
phneumonia, croup, rota virus, constant flu like symptons. He
rigors a lot when on an episode which last for a few days and has an
extremely high heart rate when this happens with heart beats of up
to 240 a minute, we are wondering if this sounds familar to any of
you? We are desperate to get him on the anakinra, but in this
country it seems he is to young. So we may be going to the NIH to
go on the project has anyone got children this young who are already
on it? can you let us know and how they are doing? and what country
do you come from, has anyone travelled from outside the USA to do
this? as we are thinking of doing.
We would love to here from you, please if you can E-mail us or
contact us in any way, our e-mail address is
Telephone 07766318189
E-mail Glastonbury_02@...
We wish you all well and take care form lisa and colin x
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