So knowing what we now know. The ketogenic diet that I've always wanted to try for Hope is one of the first courses of action. Unfortunately there's a 3 month waiting list in Oxford.
But knowing what we now know, I can't continue to feed Hope foods that are quite literally doing her harm :0(
I called our local dietician and explained, and said that I know she can't help us with the ketogenic diet (it's complicated and requires a hospital stay, starvation and very a careful monitoring in hospital, then lots of monitoring afterwards), but I can't continue to feed Hope the way we have been, so I'm going to start restricting carbs, and would really like to start the modified Atkins diet or a low GI diet (both of which can be started prior to the ketogenic diet if something needs doing ASAP, and don't require a hospital stay and aren't anywhere near as complicated. I asked for her advice and support. She declined!!! She doesn't 'believe in those type of diets for children'. Which is all very well... But Hope NEEDS a diet like this to maintain her health. I'm so angry at this dietician and I Hope our paths don't cross in the near future.
In desperation in turned to the Internet. Not even sure now what I was looking for.. Or how I came across it.. But I struck gold!! The Daisy Garland- a charity set up in memory of a little girl called Daisy, who had Dravet's syndrome, and died aged 6 from SUDEP (sudden unexpected death in epilepsy patients).In tears from reading Daisy's story, and my own distress, I called the number, not even really sure if or how They could help. It was Daisy's mummy who answered my call. Through my blubbering I think she understood my desperation, and said they might be able to help. The charity funds ketogenic dieticians in several hospitals. She felt that if we couldn't be seen by our local ketogenic centre (Oxford), we should be able to be seen sooner by one of their dieticians. Possibly in Derby or Nottingham, or maybe even Bristol. All I'd need is a referral from Hope's consultant.
......... (2 weeks later)................
Simple? Except this is the NHS we are taking about. All to do with funding. Swindon would rather we be seen by their partner hospital Oxford. Oxford were seeing what they could do- if Hope could be seen as an 'urgent' case. 2 weeks later I called (yesterday) to be told that Oxford has a 3 month waiting list, and to refer us to the Evelina @ guys hospital London. All this time waiting for people to refer.... Is time being wasted for my precious Honk, who needs to start this diet NOW.
The Evelina is far from convenient, London is not easy, but I would travel to the end of the Earth. But now, and we still haven't even been referred there!
The Oxford dietician rang today to tell me what I already knew (from chasing up yesterday). She said she hadn't realised the urgency of the situation and that I'd been waiting so long, but she does already have 10 children on her caseload (that's her maximum) and a long waiting list.
She told me to ring Swindon and get them to explain the urgency of the situation to Bristol. So I did. Straight away. To be told that the referral needs to come from Oxford. I think what this boils Down to, is whoever refers her, has to fund her. Different hospitals have pots, and no one seems to want to dip in their pot to get hope funded elsewhere.
So now I'm waiting again. I hope that the Oxford dietician has taken this case more seriously now. She seemed surprised by how much I knew. she was going to speak to her line manager... I don't know why. I'm hoping they are reconsidering. I hope she doesn't keep me waiting too long. I hate this waiting :0(
I have received continued support from Daisy's lovely mummy. She was kind enough to send me a DVD of a film made about the keto diet 'first do no harm', and some lovely daisy coin key rings, plus lots of information regarding the diet. She's also kindly offered to fund the gram scales (an essential item for the diet), and also a SATs monitor for Hope if I want one. As she pointed out, if she'd had one, her precious Daisy would still be here today. So if anyone is feeling charitable, and has a few pounds to spare, this really is a worthy charity. Or you can even donate without it costing you. By going through their site to amazon, amazon will donate to the Daisy Garland without it costing you a penny :0)
It was back in June Hope had the muscle biopsy, I'd almost given up asking if there were any results, and was happy to bury my head in the sand. Certainly for the remainder of this year. Get Xmas out of the way. But on Wednesday, I opened a letter, addressed to Hope's consultant R, detailing the results and asking for him to break the news. No need since we seem to have unintentionally have been copied into the letter . Oh well
Anyway, it's not good. And that's a serious understatement , but I'm writing this update quickly whilst I'm not feeling too heavy hearted. She has a neurodegenerative mitochondrial disorder. The same one that I've mentioned so many times. The one I feared. The one that I was led to believe had been ruled out already. But the one that she just ticked ALL the boxes to:
Pyruvate dehydrogenase complex deficiency (PDCD). It's bleak. But she's here. She's doing ok. There's no cure. But 'therapeutic' options have been suggested.
Ironically the main one being the ketogenic diet! The same diet I've been asking her consultant about since she was one. The same diet, that after constant nagging on my part, her consultant finally agreed to referring us to the specialist in Oxford to discuss (his reluctance was based on how well hope has been doing without it). Fortunately I'm
Well armed with knowledge, I've bought the 5th edition of the ketogenic diet medical book and read and highlighted already.
Unfortunately my curiosity over the last 2 years has led me know too much about this disorder. But already I've gained a bit more positivity from a support group for parents of PDCD kids. I'm inspired by a little girl L and her mum. L is 9!
Her mum has fought hard to keep her. So will I!
She's called Hope for a reason. I won't let go!!!!!! I can't :"(
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.