Fund raising

Hello, just a quick update while I'm up with my coughing children!

My husband graham is raising money for Sturge Weber UK by doing a triathlon "iron man" event in June 2013. He has a just giving page on www.justgiving.com (type in Hallie Davidson and you'll find him) - donations welcomed please :oD

I'm also trying to do as much as I can too to raise money and awareness for the charity - I have a stall at my son's school Christmas fair on 6.12.12 - I'm going to be selling Christmas cards, raffling a very special cake donated by a very kind friend Hazel and I'm going to raffle a big cuddly bear : ) marlcliffe school have also kindly agreed to ask a few pupils to design special Christmas cards which will get printed up hopefully next week so I'll be selling those on my stall too along with the Sturge Weber UK wristbands and sweeties and children's wooden jewellery too : )

I'm also organising an Usborne book party for 1.12.12 for all the parents in my son's class YR DR and 10% of book sales will go to Sturge Weber UK - any parents who are interested please contact me ASAP as at the moment I don't have enough to hold a party unfortunately : ( - I'm planning on providing wine and food as a thank you for coming x

I've spoken to Jenny Denham this weekend just gone about my fund raising ideas - she is the first person I have chatted to from the Sturge weber Facebook support group and she is the chair of the committee of Sturge Weber UK - it was lovely speaking to her and I'm so glad there is a support group and the Internet in general these days as it provides such a useful and supportive resource for me and parents alike to share experiences and offer guidance. I know people criticise emails and texts as being impersonal but I find them a godsend for asking quick questions and getting instant answers - even from consultants!

Anyway, as the coughing seems to have died down now in our household I best try and get some sleep! Night : )

Neurology appointment finally!

After spending the last four weeks worrying about what the scans of hallie's brain might show, today we got a proper chance to view the numerous scans and put our questions to the neurologist. Although to be honest I don't feel I have learnt much more about hallie's condition other than where on her brain she has the birthmark (patch of blood vessels/stain) whatever you want to call it!

Hallie has a patch of blood vessels on the right side of her brain, underneath where the port wine stain on her scalp is. You can't really see the port wine stain on her scalp because of her beautiful mop of hair : )

The neurologist then did a few physical tests on Hallie to rest her reflexes and how she used each side of her body, particularly her hands. Hallie wasn't that co-operative but that's not surprising since she woke up with a stinking cold this morning. He said he wasn't too worried about how she was using her hands at the moment but she would need to be checked regularly as these things usually become more obvious as a child reaches 12 months.

He didn't really put a plan in place and said the usual "it's a case of waiting to see" which is extremely frustrating. I wish I knew exactly what was going to happen Hallie and when.

Now we have the Great Ormond Street appointment in December to look forward to - I am looking forwards to meeting the consultant at their Sturge Weber Clinic as my friends in the Sturge weber UK Facebook support group have sung her praises many times and I'm hoping she will provide us with a lot more information (which will hopefully make things a lot clearer as I feel a bit fuzzy at the moment)

Thanks for reading : )

Nightmare

I had my first nightmare about Hallie last night. She was sat in her high chair and I thought she was cold because she looked like she was shivering uncontrollably but then I realised she was having a seizure and her face looked really distressed and I couldn't soothe her : (

Still haven't heard from the neurologist regarding the details of Hallie's MRI scan on her brain - I'm eager to know exactly where the stains lie on her brain and what the next steps are for treatment etc. we have an appointment on 15 November to discuss the brain scan but I had actually requested that the consultant phone me before then - he's obviously too busy as I've left him three messages! Hmm might phone again today and leave another message for him..

We've got Hallie's eye appointment on 1 November so hopefully that won't be too traumatic for her and her eyes won't have worsened.

X

Sturge Weber Syndrome

I thought I'd try and write a post to say a bit more about Hallie's diagnosis (if my two mischievous sons will allow me!)

Last week Hallie was diagnosed with Sturge Weber Syndrome (SWS) - this was not a complete shock as we had been forewarned the week Hallie was born by the neonatal consultant who came to visit me at my bedside.  He had written it down on a piece of paper and told me briefly a list of possible complications Hallie may have if she did have SWS. 

For those of you that read my blog because you want to know more about SWS - here comes a detailed explanation taken from various resources (including my head)!

Sturge Weber Syndrome occurs in the first weeks of an embryo's life.  It is an abnormality of the central nervous system (I think) and is not hereditary.

Symptoms of SWS include:-

•  A Port Wine Stain of the skin (usually around the eye and forehead area as this is near the trigeminal nerve which is connected to brain activity). 
• A layer of blood vessels touching the surface of the brain called an angioma (these blood vessels can irritate the brain causing seizures).
• Glaucoma - raised pressure in the eyes caused by increased level of blood vessels in the back of the eye.
• Developmental delays and learning difficulties - this is more likely to occur when a child with SWS has the epileptic seizures.  When the blood vessels on the brain (angioma) are on both sides of the brain this is more likely to cause severe learning disability.
• Sometimes the child will have weakness of limbs on the opposite side to that which is affected by the angioma on the brain.

Hallie is due to go back for her second eye appointment on 1 November - her eye pressures measured at 16 - 19mmHg in her right eye (the one completely covered with PWS) and 12mmHg in her left eye on her first appointment aged 4 weeks old.

An appointment has been pencilled in for Hallie to be seen at the specialist SWS clinic at Great Ormond Street in December.  We will hopefully get a chance to chat to Dr Aylett, the specialist who is very knowledgeable with the syndrome. 

Hallie is also pencilled in for her first laser treatment in January at Leeds.  I haven't changed this as a few parents on the Sturge Weber Facebook Support Group have reassured me that Hallie would be treated in a children's ward which made me a little happier.

I have found it invaluable having the SWS support group on Facebook and am so thankful for modern technology - I would feel so alone and helpless without the internet and Facebook and the numerous people I have become connected to via support groups.  The same can be said for the autism support groups I am connected to on Facebook too (that's another story though!)  Contacting the consultants is so quick and easy and I can get in touch with a few of them via email and get reassuring replies a few hours later.  All this support and information helps keep me calm and collected which allows me to continue fighting for Hallie's referrals and appointments etc.

I still haven't seen the neurologist regarding the results of Hallie's MRI brain scan.  He has been away.  I am hoping to contact him this week and ask where on the brain Hallie has the angiomas.  I am guessing it isn't extensive otherwise her behaviour wouldn't be as it is - but I don't know how it all works.  I am under the impression the parts of the brain where the angioma touches are the only parts that are affected when the child is having an epileptic seizure - which is why sometimes a child can carry on playing normally whilst having a seizure... this worries me and makes me anxious I will miss a seizure or not notice her first one straightaway (if she has any at all that is)  The symptoms above do not all occur in every child with SWS. 

Most symptoms occur in the first year of life.

Epilepsy:

approximately 80% of people with SWS have epilepsy - in most cases the epilepsy starts in the first two years of life and if by age 5 Hallie has not had a seizure she isn't likely to.

I am to watch out for twitching or jerking of the limbs on one side of the body, or jerking involving all limbs with loss of awareness.  Absence seizures (where child appears "not there"), drop seizures where the child will drop to the floor and episodes of limbs becoming stiff. 

The seizures I am worried about are the subtle ones where the child may just have a change of breathing or just a slight twitch of the hand or foot for example.

{I have taken a lot of this information from a booklet on SWS written by Dr Sarah Aylett from GOSH}

PLEASE SEE www.sturgeweber.org.uk FOR MORE INFORMATION ON SWS AND HOW TO SUPPORT THE CHARITY.

Diagnosis

Today Hallie was diagnosed with Sturge Weber Syndrome. We have had this in the back of our minds since she was born but it was confirmed today after her MRI brain scan last week - have just about stopped shaking now.

I am yet to speak to the neurologist regarding the details but will post again once I know more x

Give your support :)

www.changingfaces.org.uk

Hallie before theatre, after and at home with Bearlinda