Friday, 28 October 2011

The news from Sheffield

Ive tried to think of 'clever' ways of writing this blog post...but quite frankly I cant write for an audience. I write how I think, what I think and so apologies in advance if it ends up being a bit of a jumble but thats the way it is.

We went into Sheffield Childrens yesterday,the journey up there was diabolical...heavy rain and then a 4 car pile up on the M1 meant that there was no way we were going to meet any appointment time and so I had to phone ahead and tell them we were stuck in a trafic jam. Those who travel to Sheffield childrens will also know how awful...or non-existant the parking is now so the thought of having to arrive in the middle of the day wasnt filling us with glee. On a previous appt David had had to park half an hour away and wait for us because there was nowhere to park so that he could come to the appointment too. We asked friends to pray hard.
We got to the Childrens at 12.00.....and drove straight into the only disabled parking space! we both said 'Thank you God!!' as the likelyhood of that happening was almost zero. I was pleased that both of us would be there for such an important appointment.

When we got there the Consultant had gone but they bleeped him and he very kindly came back up to speak to us. Seraphina was weighed...unsurprisingly she had lost weight again..she now weighs a kilo less than she did at 2 years old and her little ribs are sticking out.

Our Consultant had laised with a gastroenterology consultant in Great Ormond street Hospital in order to get the best plan and outcome for Seraphina.

He was fully informed about Seraphinas condition and took the time to answer all of our questions but the outlook in his own words was bleak for her.

She has a rare (but not unheard of) complication of Rett syndrome which behaves like an extreme inflammatory bowel disease and ends up in complete intestinal failure. He said Seraphina seems to be moving quite rapidly towards this and TPN shortly will be our only means of feeding her but , he is willing to try and hold off by using other medications for as long as possible. He explained the  fact that it looks like Seraphinas Jejunostomy has ulcerated underneath and thats why we have the rawness and begingings of ulcers coming through the surface. This will have to be investigated sooner rather than later but for now we are back on the maximum amount of steroids and he wants to introduce a drug called Azthioprine which is another immunosuppressant to try and get the inflammation down as much as possible.
There are other procedures which she may have to have done but I wont go into them here...just to say they arent pleasant.
He also discused with us disconnecting her large bowel completely and doing an ileostomy but we felt that this wasnt an option at this point particularly as none of the treatments will cure her they will just buy us more time.

At present she is only just about tolerating 20% concentration feed and that is with discomfort and bile...if we cant increase that over the next few days then we will need to go back to Sheffield to be admitted and potentially start TPN. No-one knows why her gut is failing suddenly quite so quickly but agreed with us that even back in 2009 when she had her volvulous that could have been caused by this disease in her bowel and by some miracle of God have managed to keep her ticking over for this long....there are no answers.

So, this is where we are now. To say that we were both in shock last night is an understatement. We both knew that there was no cure for Rett before but we werent expecting to be faced with the very real prospect of losing our little girl quite so soon...the future seems so uncertain right now and although my faith in God is very strong I still...hae to ask 'Why?' as the thought of not seeing that gorgeous smile and hearing her giggle, snuggling those wild curls and giving her eskimo nose kisses seems more than I can bear.

But I refuse to let this news beat me, beat us as a family...if the Rett monster wants my girl he's going to have a fight on his hands.
As long as my girl is smiling then so must we. I dont know what will happen in the future but I DO kow that God STILL has my girl in his care and why I dont understand why He is allowing this to happen, God is still God.
He may work another miracle just as He has with her walking and with her no longer needing oxygen...He may not

Im praying for that Miracle anyway....with all my heart.


Jaz said...

My heart and prayers go out to you greatly. I'm not the most active among Post Pals anymore (pillow case designer here) but I keep up to date with Seraphina and this blog because it truly touches my heart that you can be so honest. It may not feel like it all the time, but you're very strong. You and Seraphina are very inspiring people, I pray God bless you and that you continue to touch peoples lives.
Much love

LuluandJessie said...

I just saw post pals on Russell Howards show, and came to look at the site. I notices Seraphina's site as she's just a couple of months younger than my little girl - then I saw her face and that gorgeous smile! She's beautiful and sounds like a little trooper. I read your blog with a tear in my eye that she's having such a tough time right now. If its ok with you, we'd love to have Seraphina as a post pal, I know my daughter Jessica would love picking things out for her! We'll drop you a line on Monday, but our thoughts are with you all over the weekend. Lucy x

Laura Ann Dunks said...

But even if it can't it may be able to help with the IBD and autism. It is a risk in the sense that you would have to come off all immune suppression, but it may be worth finding out some information from the LDN research trust and taking it to Seraphina's doctor.

I have also been on the Specific Carbohydrate Diet for my Crohn's since Jan 2010 although it also helps people with autism. I don't know if you have heard of that. I basically only eat the things my intestines find easy to absorb. My private doctor who I see for the ME recommended this. When I ate some fudge in an emergency my health went backwards, so I know it works. This site has the legal/illegal list.

I use this cooking book

There are some yahoo groups/mailing lists about the scd diet too.

Further, if you can afford it, there is a private hospital in hertfordshire (Breakspear) that has helped me so much. The have an autism specialist there but they also treat a range of environmental illnesses, and they helped with my ME and Crohns. He saw my sister, but because my sister was already and adult she refused to do anything he recommended like diet, and there was nothing we could do.

It is hard to guess what would happen if you took LDN in Rett syndrome because of the rarity and the lack of trials, but I do think it would be worth researching it and discussing it with doctors to see what they think.

If you want to ask any questions, you can email me: lauradunks at googlemail dot com

Thank you for reading. Still praying.

Laura xxx

Caroline said...

Thank you to all three of you for your kind comments.Jaz, its lovely to hear from you again and so pleased your are still reading.LuluandJessie we look forward to hearing from you.Laura Ann Dunks, I will take a look at your links, thanks :)