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update on my baby

The liver is more serious than the GP understood. I has huge fatty deposits causing swelling in the liver, causing pressure. We were 100% vegan for her first 4 or 5 years, and although e now eat eggs and the occansional piece of lean meat and when I'm real bad a kebab (not doner meat) or Indian, being gluten free, dairy free and allergic to so many additives means we have always been and are restricted on processed stuff, so unlike lots of British kids she has never had chicken nuggets or cheap sausages or anything out of the convenience freezer section at all! It's not fair! and until we get an appointment with the specialist dietician we are to have no fat, salt or sugar at all. WTF!!! All gluten free breads are loaded with salt and sugar. What do I give her for packed lunch? Does tofu have fat? She doesn't eat fruit but the doctor said no fruit juice as the sugar turns to fat.

The doctor also said no more ibrofopen - it has been the only think getting her to school, paracetamol doesn't work, aspirin not allowed. Is codeine okay for a 12 years old?

She (the doctor) also is putting her on extremely strong, addictive medicine for stomach acid/ulcers - I think, but she talked about weaning her off. Anti-depressants by the back door? Don't know. This is a see if it works approach to the pain, so I think it is something to do with stomach acid/ulcers, but she said something something suppressors or something. This is to put off the endoscopy, that will be in 3 months if these meds don't help. It's a avoid putting the autistic kid in surgery think that I've been told about.

And then there is a refferal to a child clinical psychologist. This was because BK said about the feeling suicial. she almost changed her mind when I said I'd been paying for weekly therapy sessions since she was 10 and CAMHS were happy with him but I thought, hell, ammunition to get her to the autism base? Doubtful now, probably look at the wheelchair and focus on how she 'feels about having to help' crap!

I'm torn. Half of me wants to push her to school until the next TAC, scared of prosecution, lack of understanding and social workers but the other half wants to protect my baby, already struggling with a huge school (2000+ girls) with not that much understanding that people on the autistic spectrum don't show pain or stress in the same way, who is now going to have to face it every day with no real pain relief. The earliest I can see the GP to sort the meds is Monday. Should I keep her off until Tuesday? Neurologist on Thursday. TAC a fortnight today.

I want to get her into an autism base and want to home school her until I can, or at least flexi school her, although I know this is hard. I could smack the next person who mentions the importance of 'making friends' - she's not made a single one she didn't have with someone for years before secondary school, and those who she was freidnly with she backed off becasue she doesn't get the shrieks. "Why do girls have to shriek so much mummy? And go around in packs? And wear so much stinky Lynx and Impulse?"

Howeverm how can I? Look what happened last time, and I've not been able to afford a solicitor to sort out all the misinformation (lies) that the assessing social worker wrote about me. And another warning to students - don't take part in a psychology study, who knows how it will be distorted nearly 20 years on, suddenly you become a long time attendee of a psychaitric hospital! Having said that, having a mental illness 20 years ago shouldn't have any bearing on the decisions you take as a parent 20 years on, anyway. But I didn't, I was recovering from bowel cancer, had IBS and was recently diagnosed with coeliac disease and this guy was looking into the mind and the gut. But there it was, 16 months ago, along with the denial she had high functioning autism and i'm scared to protect my baby. Sending her in feels cruel.

On happy news, Henrietta the powered wheelchair has had her battery transplant and is all better now :)


( 18 comments — Leave a comment )
Mar. 7th, 2012 11:26 pm (UTC)
Thinking of you both

Mar. 10th, 2012 08:15 pm (UTC)
Thank you. AM x
Mar. 8th, 2012 12:25 am (UTC)
Much love to you both, and if either of you want to chat/offload, you know where to find me :)
I don't know what to suggest but know that you have my support, for what little that means, whatever you decide.
Hooray for Henrietta being all better!
*hugs and prayers*
T xx
Mar. 10th, 2012 08:15 pm (UTC)
*hugs* back tightly.

Thanks for the prayers.

BK messaged you herself, she needed to speak to someone more. I don't know what she said, so I hope it was okay.

Will ring you soon and maybe we can find time to meet. BK is desperate to

AM xx
Mar. 10th, 2012 08:53 pm (UTC)
I've just messaged her back, it was great to hear from her. Whilst she's not a happy bunny, I think she's ok overall.

We should definitely meet again soon. The problem is that I move out for Easter on March 24th and I'm performing the Pirates of Penzance next weekend so I'm not really going to be free much any time soon- unless I can persuade Dad to detour on the way home!
I'm back on April 22nd and will be fairly free after that, save for revision, so it may have to be after Easter :( We'll work something out though :)
Mar. 11th, 2012 09:47 am (UTC)
She's definitely a strong girl. Thanks for being there for her. It's a shame we can't get to you - BK loves G&S! We'll speak soon xx
Mar. 11th, 2012 11:26 am (UTC)
Well, if you did want to come and watch Pirates, our first performance is on the 18th at 2:30pm. I guess the problem is the train. Ah well, I didn't think about that. But the offer stands if you are interested, I think tickets will be £5.
Can you tell I want to see you guys? :P
Mar. 8th, 2012 02:50 am (UTC)
I don't know what to say except I'm thinking of you, will make dua for you and to suggest rice cakes. Lots and lots of rice cakes. And Pa says he's fairly certain tofu is fat free, but watch the marinated and smoked varieties, espeically the ones flavoured with nuts. I've just read all of BK's stuff on AO3, she's good, try to encourage her to write more, not just fanfiction, whatever she likes, to take her mind off it. Sorry, shouldn't butt in, what do I know about kids? Except they are human like the rest of us :-). Love to both of you from both of us xxxx
Mar. 10th, 2012 08:12 pm (UTC)
Thanks for the prayers.

We're doing lots of rice cakes when she feels so hungry. Unfortunately the smoked tofu with the almonds and seseme is her favourite and we have a fridge full :(

We're doing whatever she wants to take her mind off it - barbie and bratz dress design, paintbox on the laptop and I'm reading aloud old Famous Five and making up silly Molly Lewis stories and weird crossovers (eg Peppa Pig - don't ask!)

Hope things are better with your father xx
Mar. 20th, 2012 09:06 pm (UTC)
Whatever makes her happy seems to good to me. I'm devouring the Roman Mysteries - the books and the CBBC ones as I'm thinking of the Counsellor taking Robbie and James to Ostia, if it is okay to use your OCs, the Counsellor's children? Do you think she would like that as a story. I know your other friend wrote a story for her and I doubt it would be as good as that one.
Pa is doing good, thanks. Thnks to your suggestion he now has a community OT visit him once a week. His speech is getting better so he gets less frustrated or angry with himself.

Mar. 23rd, 2012 08:40 pm (UTC)
A timetravelling Robbie and James solving crimes with Flavia et al and Charlotte would be wonderful! If you have time and inspiration. And actually, re AO3 discussion - I did read out her an edited version of the caravan one, so! She liked the ghostly Morse bit.

Glad your father is doing okay and he has an OT. BK not so good. I want to post an update and get back to all my friends here but she is doing half days which mean I get 3 and a half hours to rest before I must pick her up exhausted and in pain and clingy. Left her in bed with Morse and her beads but how long before she creis out for me I don't know.

I'll PM with all the moans if I feel up to it. I know you have little time too xxx
Mar. 24th, 2012 09:00 pm (UTC)
Yeah, only two clear sex scenes really if your cool with her knowing about trafficking and brothels and that, but she is a pretty radical girl re fair trade etc, so she is probably informed about trafficking anyway, I dare say, and hugely angry. Assure her they were rescued in the raids and immingration was nice to them all and gave them leave to stay :-) And tell her her Morse ghost pieces inspired me :-) I'm going to have a break from Lewis stuff as I've peed of one of the queen slashers - why do I always manage that? I'm going back to my Fifth Doctor/Turlough comfort zone where about six people resd you. It's the writing that is an escape, although with the nice weather I've started on the garden which has had nothing happen in it for a year, nearly. It was Dad's pride and joy. But if I have time I will try something for BK.
Life sounds tough and getting tougher. Hang on in there. PM me if you need, but I think you probably have far more empathetic friends on here than me. But I will let you know when I come into Wallingford or your big out of town Tescos and if you can, we can meet. Not actually seen you for donkeys years!
Mar. 8th, 2012 07:09 am (UTC)
Oh As, I'm so sorry. :( But I fear the doctor is right about the ibuprofen, it can cause serious organ damage and said risk increases when it's taken on a regular basis.
Is there any way at all to coax her into going to school? Forcing her while she's in pain and you have to take away the painkillers just seems so wrong. Can't the doctor excuse her till there's a better treatment for her?
I'll keep my fingers crossed that the psychologist isn't just rooting for the "how does it feel to help your mommy?" nonsense and rather asks her about having to cope with school and being forced to live on that kind of complicated diet. (I've tried cooking vegetarian/gluten free for a while and it's difficult enough... I'm thankful I'm back on vegetarian..)
Can you get her to eat lettuce? Preferably the bitter ones? They might help her liver recover a little. That and fresh onions to decrease inflammation values might be helpful but I know children usually aren't the biggest fans of either.

*hugs* I'll keep my fingers crossed things will finally go uphill for you again - you'd both deserve some luck so very much.
Mar. 10th, 2012 08:08 pm (UTC)
We're seeing the GP on Monday to discuss alternate pain relief and to see if he will write the school a note. I spoke to the school nurse (she covers the whole area, not just the one school, so is quite independant) and she was very sympathetic. I'm also taking advice on how to move her to an autism base.

BK only really eats cooked vegetables and carrot and cucumber. Will it still help cooked, as I hve a nice recipe called Gardener's Soup which uses up old lettuces with cucumber, tomatoes and onions, and we're doing a lot of home cooked soups for lunch.

*hugs* back tightly xx

I hope you are feeling a bit better yourself and the decorating is finished.
Mar. 13th, 2012 07:15 pm (UTC)
Ack, well I do hope that that worked out all right. :/ They sooo should take her off school while she's in so much pain. There's no point in her going while she can't focus at all.
And I hope autism base will be more helpful than the system has been so far. At least they should know better on how to deal with her. :/

Well it's nice that she eats cooked veggies at least, and yes anything healthy that's cooked loses some of its qualities, but not all of them. Even cooked onions are still quite useful, even if fresh ones would be best. - I'm really glad you're good at cooking. It's a huge help enjoying the benefits of vegetables & herbs. :)


My hayfever kicked in and my lungs are rather infuriated by the double-trouble. But yay re the decorating. I'm sure there's more I could do and might do sooner or later, but for now I'm done. :)
Mar. 23rd, 2012 09:13 pm (UTC)
The UK has some draconian school attendance laws. I ws threatened with criminal prosecution on Weds. It took me, my brother,her therapist and the school nurse plus the letter from the GP, which they misunderstood. I had to sign a 'parenting contract' to get her to school in the mornings and pick her up at lunch time to take her sweimming. This is not good for my own CFS/ME pacing, of course, and my daughter is still in pain.

We have a stupid registrar at the hospital that does not understand that the school needs something in writing or the autistic person's inability to show pain! I've left a message this morning demanding to speak tto the consultant.

I'm cooking a lot of fat free veg and pulse soups and making salads based on pulses and pasta, so I hope they are okay. Still waiting for the dietician appointment.

I hope you are okay now. Hayfever is awful. BK and my Mum suffer badly. The tree pollen this time of year is a killer!

*hugs* xxx
Mar. 9th, 2012 01:44 am (UTC)
Oh my. What a horrible load of crap you have to deal with. Hugs to you & BK.
Mar. 10th, 2012 08:03 pm (UTC)
It is horrible. My strength and my faith are having a bit of a wobble. Thanks for the hugs x
( 18 comments — Leave a comment )



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