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ELLA22
4th May 2007, 12:12 PM
They squeezed us into the clinic on Monday to try to get to the bottom of Cerys' pain. The x-rays showed no movement to the side or the front which was good. Dr Freeman seemed to think that she may have a cervical rib which is causing nerve pain. We have to have a shoulder x-ray in 6 months when we go back to check. Until then I've got to carry on with the medicine everyday which I don't like doing really but it's better than her being in pain.
Reading up on the cervical rib, it does fit in ith the pain and the weakness in her left arm. She also has 2 ribs which stick straight up and past her collar bone which can't be helping matters.
Dr Freeman has said he wants to try and hold off doing surgery until she is 5 and has done some more growing. I feel much better about things now I have some time scale. He also said that her bones in the cervical region are a "jumble". Bless he couldn't think of another word to describe them!
She also had a blood test ordered by her geneticist to confirm her syndrome as she has only heard of one other family which also has the spinal problems and they were much more mild than Cerys'. She'll end up starring in a medical journal yet!
Hope you all have a good bank holiday
Love Ella

tonibunny
4th May 2007, 12:16 PM
That all sounds quite positive Ella, so I hope you're feeling OK :hug:

Do you know the name of Cerys' syndrome? We may be able to find other families with children who also have it.

Toni xx

Amazed Jean
4th May 2007, 05:55 PM
Ella, Sorry your daughter is in pain. Give her a little extra cuddle from me. I think you doctor sounds like he is trying to do the best thing for her. That's great and oh yes, Great job Mom. Hang in there. Hugs for you too.

sins
4th May 2007, 08:36 PM
Hi Ella,
It's good news that you got a productive appointment and finally some answers.At least there seems to be a definite plan of action and I hope you can manage the pain for her and life continues as normal.
Sins

titch
4th May 2007, 11:00 PM
I'm really glad you finally got to see Mr Freeman and actually get some answers! It must be a relief to have a plan of action, and also while it doesn't lessen the pain of it, to know why there is pain has to be a relief too.

andrea
5th May 2007, 09:44 AM
Glad to hear the appointment went well Ella, although it's so hard to see them in pain isn't it? Hopefully you'll manage to keep that as low as possible with the meds. How tall is she now? Are they hoping she will get to a certain height, or is it more a case of development rather than height gain before they want to do surgery? It must be a relief to you to know they have a plan and you're in good hands.

Our bank holiday plans have been scrapped due to Erin vomiting since her hospital visit on Wednesday. Thankfully she's stopped now, but am too scared to go out with her just yet! Have a good one.

Andrea
xx

ELLA22
5th May 2007, 09:53 AM
Hi all
Thanks for your kind words and hugs! We do feel much better knowing we won't have surgery in the immediate future and her pain is being managed with calpol during the day and medised at night which helps her sleep.
It was good to see Dr Freeman and he put my mind at rest a bit. I've just got to put my trust in him which becomes a bit easier when he isn't just a name on a letter!
As for the syndrome, she has Branchial-oto-renal syndrome. This has caused her hearing loss, a branchial sinus, mild craniosyntosis and a couple of other minor problems. The geneticist is getting her x rays sent over to see if there is a connection with the scoliosis or if they are 2 unrelated problems. It is extremely rare for the 2 to be connected but with Cerys, everything we come up against is rare!
The most strange thing that the syndrome has caused is that she crys when she eats as she has salivary tissue in her tear ducts (especially if she has chocolate). We do get some funny looks then!!
Anyway I'll keep you updated on any developments
Love Ella

andrea
5th May 2007, 10:03 AM
Bless her. Crying over chocolate! Glad to hear you're feeling much happier about things now. I've never heard of the syndrome, but as you say it's very rare, so it's probably no surprise.

Thanks for the updates
Andreax

GillyG
6th May 2007, 01:11 AM
Little Cerys is a very special, brave little girl :D

I'm so pleased that you've found a good consultant who seems to know where he's going with her treatment - I agree entirely that trust is incredibly important in these matters. I don't think I could have gone ahead with my own surgery if I hadn't felt so comfortable with my surgeon. It must be so much harder when you're making those kinds of decisions for your daughter.

I hope you continue to stay so positive, I think Cerys is lucky to have such a caring mum.

:squeeze: (for Cerys)

:squeeze: (for you!)

Gilly xx