PDA

View Full Version : We're castless!


andrea
19th September 2007, 12:52 PM
Hi all

I don't often post updates, as nothing seems to change with us, but thought i'd do one today as we've just come back from Stanmore without a cast. Unfortunately, it's not because of good news, it's just that the skin breakdown under her last cast was so awful Mr T wouldn't put another cast on top of it. So we're now at home waiting for it to heal up. They've dressed it and I have a pile of dressings so that I can change it. It really is quite grim.

Contrary to what I expected, Erin hates being without a cast. Initially she thought it was great, but now she's tired and struggling to support herself so it's not much fun anymore. Seeing the state of her back made me think that rods really wouldn't be that bad an option, but Mr T won't recommend them at this stage (perhaps he will after today!) so we're stuck with casts.

I have a week to try and fatten her up - any suggestions apart from 24 krispy kremes a day?

I'm not having much luck at Stanmore recently......

Hope everyone else is doing well
Andrea xx

tonibunny
19th September 2007, 02:25 PM
Oh. bless her. I don't think I ever had a problem with sore skin like that when I had casts, it sounds horrible :-( The top layer of skin used to rub off my hips but that was it. Did she complain about her skin hurting before they took this cast off?

As for fattening her up - have you tried those high calorie/protein milkshakes they give people in hospital to get them to put on weight? I can find out what they are called for you if you like. I had to drink loads of them after my fusion when I was 18 as I'd gone down to five and a half stone (I'd only been 7 stone to start with!).

Oooh, and would you like to come over sometime so you and Erin can try my new digital piano? You can see what you think of it, and if Erin likes messing about on it :D She can try all the other instruments we have again, as well.

jennie
19th September 2007, 02:43 PM
so sorry to hear about erins' skin. :squeeze: emily has a constant battle with weight, as her jaw bones didn't form properly,and she can hardly chew... and at nearly 13 she's nearly 4 stone. We go to the dietician at the local hosspital and the gp and get Fortijuce and fortishake which come in lots of flavours, she's also been on scandishake for years, which is a powder you can add to cereal and cakes. Also look out for clotted cream ice cream which is much more calorific than ordinary ice cream, and ambrosia custard in a tertra pack... I spend my life trying to fatten em up! Also milkshakes with fruit and extra creamm! Cheese sauces are good too,can;t think of anything else at the mo.. been to ikea and feel brain dead! all the best.. jennie

michaelsmum
19th September 2007, 05:00 PM
Sorry to hear about Erins back, hope it heals quickly.
Poor wee thing.

Thaleias spirit
19th September 2007, 05:17 PM
Originally posted by tonibunny@Sep 19 2007, 02:25 PM
As for fattening her up - have you tried those high calorie/protein milkshakes they give people in hospital to get them to put on weight? I can find out what they are called for you if you like. I had to drink loads of them after my fusion when I was 18 as I'd gone down to five and a half stone (I'd only been 7 stone to start with!).


One of them is called Ensure I think, there are other varities and flavours also. Our local pharmacy stocks them, not sure if you need a prescription to go get them but you could chat with someone in their to find out if they would be suitable for someone her age ..

only advice I have about them is they are better when they are straight froma fridge!

jfkimberly
19th September 2007, 05:22 PM
Andrea, toni and jennie are on the right track. Nutritional shakes (Slim-fast for weightloss and Ensure for adult nutrition in the US) that are meant to replace meals can be used in addition to meals to significantly increase caloric intake and add extra nutrition. I'm not a fan of real milkshakes, much less the ones that come in a can, so I haven't tried it, but it is an option if you can get Erin to drink them.

Also, I try to add some kind of high-calorie sauce or dressing to *everything*. I eat a lot of foods that are well complemented with sour cream. Just keep fixing the food she loves so she's inspired to eat more. My mother had a real challenge with keeping me gaining while not putting my dad in the cardiac unit (she failed on my dad's count... triple bypass at 42).

Oh! I watched this brilliant show on Discovery Health channel last night where they looked at what factors cause kids to eat more. One of the things they found was that if you allow kids to portion their own servings, they will eat less than if you plate their food and put it in front of them. So use that to help Erin eat more... put the food on her plate and it is a silent encouragement for her to consume it.

I'm really sorry the cast has caused her skin ulcer. I know you hate to see her go unsupported, even for a week, but it's important that she have a chance to heal.

I'm surprised they're not considering growth rods yet. *frown* She seems like an ideal candidate to me. I know you don't want to see your little girl undergo major surgery any sooner than she has to, but it must be better than what they're doing now. If I was in your position, I would be so torn between wanting to treat the scoliosis as aggressively as possible and trying to hold off surgery for as long as possible... it must be one of the the hardest decisions a mother can face. And when the consultants aren't even giving you the option, it's that much more frustrating. *hugs* Hang in there, Andrea.

Sealy
19th September 2007, 05:26 PM
Poor Erin! I hope her skin heals soon. When Deirdre was in casts though the summer months she had a lot of skin breakdown but luckily we never had to go castless - the prospects of general anaesthesia was a real fright for me.

I've heard the brand names Pediasure and Sandishakes for calorie boosters?

jfkimberly
19th September 2007, 05:41 PM
Yes, Sealy! *smacks forehead* http://www.pediasure.com/pedia_ben.aspx

"PediaSure® Complete, Balanced Nutrition®
Pediatrician Recommended!

When your child needs additional calories or nutrition, PediaSure drinks can help. They're a complete, balanced source of nutrition providing the extra calories, plus the protein, vitamins and minerals needed for healthy growth."

GillyG
19th September 2007, 06:15 PM
Oh Andrea, I'm so sorry to hear about Erin. I hope she feels better soon.

I was under the Children's Hospital for years when I was young as I was always so small and underweight. I had to be weighed, measured and plotted on a chart. Eventually, they realised that I was following the same growth curve as 'normal' kids, but just off the scale!!! Things were a bit different in those days though - I had to munch my way through jars and jars of gloopy malt extract!! :P flavoured milkshakes sound far more appetizing. :-)

Perhaps at your next appointment you should try and get her consultant to discuss with you the pros and cons of bringing her growth rod surgery forward. At least then you'll be armed with useful information which might make the chosen route easier to rationalise.

Sending hugs for both of you!

:squeeze: :squeeze:

Gilly xx

Amazed Jean
19th September 2007, 07:09 PM
Oh. Poor little thing. I hope you can sort out the sores quickly for her sake as well as yours. Here there are lots of those Ensure type drinks. Some taste better than others and definitely try each flavor. Aidan and Jenna are both pretty underweight so the pediatrician has both of them starting everyday with an enriched drink. Jae switches up those with homemade smoothies. She puts in the blender bananas, frozen berries etc. with whatever else she can think of and whips it up sometimes with ice cream or frozen yogurt. They are both almost now able to keep diapers on their skinny little bums. Jae was really thin as a child. Allen and I both were too. Nothing we ever tried put weight on any of us. Unfortunately at about 40ish that all ended. Now we have to go the other way and try NOT to gain weight.

andrea
19th September 2007, 09:41 PM
Thanks for your support and suggestions! I'm not sure Pediasure is available over here but will see if i can source some kind of shake. It would help if she wasn't so bloomin fussy. Honestly, I think i have the fussiest child ever!! She's asleep at the mo, but it still complaining she can't get comfy and everything feels weird. She also nearly fell down the toilet earlier as she rests the cast on the toilet seat, and forgot she didn't have one on. I guess a period of adjustment is to be expected. Just as she gets used to it, we'll have it put back on and have to go through it all again.

Toni - she said the cast was a bit sore, but nothing out of the ordinary. She didn't start to walk strangely or not want to be active, which is what they say to look out for. Even now, she says it's not sore so i wonder whether the area is just a bit numb considering she'll complain for days about a paper cut that you can't see, but won't utter a word when a considerable amount of skin has worn off on her back. We'd love to come round and check out the piano. I've been listening to the sample on the yamaha site and i will admit that i might be coming round to the idea. It would be great to see it in the flesh. I'll pm you tomorrow with some dates. It will have to be a weekend or half term - hope that's ok.

i think i need to revisit the idea of growth rods with the consultant again. My dh took her to the appt last time and didn't ask all the questions i would have done, but came out with the opinion that he was happy to continue with the casts until such a time when we switch to a brace (now, if erin had her way). Growth rods seemed to be off the agenda as it wasn't felt that they would give us anything the cast wasn't. Not sure about this one though, so need to sit down with him again. In a way it will be interesting to see what the curve does in this week, seeing as we have no option but to go without support.

Sorry, this has turned into a ramble. Thanks again for all your messages.
Andrea xx

titch
19th September 2007, 09:53 PM
Nothing useful to say or add, but *hugs* :squeeze:

ELLA22
20th September 2007, 07:15 AM
Hi Andrea
So sorry to hear about Erin. I hope that her skin heals soon. Sending her a very gentle hug! :squeeze:

jfkimberly
20th September 2007, 06:56 PM
Andrea, I was looking at the Pediasure website and clicked on the link to their recipes. If you find a similar product over there, try using it in the recipes on Pediasure's website to add extra calories and nutrition. They had things like Hot Cocoa, waffles, banana-chip muffins, etc. I'm pretty sure you can entice Erin to take those things, if not the shakes themselves.

PDF with the recipes in English and Spanish: http://www.pediasure.com/pdf/PediaSure%20recipe%20flier.pdf

andrea
20th September 2007, 07:04 PM
Thanks Kim (and everyone else). It seems mad that when the whole of the UK is worried about obesity, there are a bunch of us trying to put on weight. It's a shame things can't even themselves out.

ScoliJess
21st September 2007, 09:55 AM
Nothing more to add or recommend, just wanted to say I'm sorry to hear about Erin's skin problems, the poor thing.

:squeeze: :squeeze: :squeeze:

Rachie
21st September 2007, 10:51 AM
So sorry for Erin's problems.

Rachie x

BeckyH
21st September 2007, 06:47 PM
that sounds awful :( i'm sorry you're having a rough time. though i wish i had to put on weight! after years of being thin i suddenly went outwards and need to go back the other way! i know how tough it is to put weight on a young growing person. does she like cheese? and of course white bread has loads of sugar in so it's a lot worse than brown/granary/wholemeal.

andrea
22nd September 2007, 09:23 AM
She says cheese is too cheesy! However, she will eat it in a cheese sauce (as long as it's not too cheesy). It's so hard to strike a balance betwen trying to bulk her out a bit, but not with junk food. She'd happily live on doughnuts and chocolate if I let her.

I'll try and remember this time when she's my age and overweight!

jfkimberly
22nd September 2007, 07:34 PM
Well, why not let her have her doughnuts and chocolates... as many as she can eat after her balanced meals. The only reason we withhold those things is they're "empty calories"... they're not bad for her. Empty calories are precisely what she needs... on top of her regular nutrition, that is. I think it's one way to go.

Amazed Jean
23rd September 2007, 01:13 AM
I agree with Kim. If you get her to eat whatever - go for it! There are days when I feel like eating the cookies first and leaving only a little room for a sandwich. Jae's pediatrician agrees - getting them eating and slide the good for them stuff in here and there. Just to make meal time more fun for them sometimes helps. Now, that I 'm thinking about it I think I'll have an ice cream sundae for dinner instead of veggies and meat.

andrea
28th September 2007, 06:57 PM
Thanks everyone for their help and advice. Erin is now back in a cast and I'm breathing a rather large sigh of relief (I'm sure that sounds really odd to some people). Her rib hump had significantly worsened during the week, and i was glad to get it back in a cast, and hopefully under control.

Our consultant is leaving Stanmore, so I have no idea who we'll get next. Perhaps this might be the time to discuss how the last 3 years have gone and what options are next. All consultants seem to be different in their approach to treating infantile scoli, so it will be interesting in a way to see what someone else says.

Thanks again :squeeze:

GillyG
28th September 2007, 07:44 PM
Glad you've got her back in a cast at last - it sounds a bit ominous that her rib hump had worsened in a week :-?

What a shame that your consultant is leaving Stanmore. Still, like you say, sometimes it's nice to have a fresh perspective. Let us know how everything goes, Erin looks such a gorgeous little thing. :squeeze:

Gilly xx

michaelsmum
29th September 2007, 03:40 PM
Thats great news!
No doubt I will be hounding you for advice shortly on how to cope with casting, and weight loss etc. Michael has got so thin recently its scary and his back appears to be worsening, but im hoping it just looks this way becase of the weight loss - he rarely has his brace off!!!
All the best
Lisa

DylansTrust
9th October 2007, 12:25 PM
Andrea, sorry to hear about Erin's skin.
Did it heal ok ?

Does she still need "fattening up" ?
If so i believe in a good, balanced diet,

A chocolate bar in each hand !!

Is she happier now that she's back in the cast ?

hugs from
Warren, Shel & Dylan :squeeze:

andrea
9th October 2007, 01:08 PM
Hi Warren

Her back healed amazingly quickly - a bit of air did it the world of good. Yes, she's much happier back in the cast, but is missing her hideously long baths that she would have before bed and i'd never have the heart to tell her to get out.

I like the idea of your diet - and i'm sure she would too. Yes, she's still a skinny bean, but then i think so many of the scoli kids (and teens/adults) are, so perhaps it goes with the territory.

Take care
Andrea x

GillyG
9th October 2007, 02:20 PM
Originally posted by andrea@Oct 9 2007, 12:08 PM

I like the idea of your diet - and i'm sure she would too. Yes, she's still a skinny bean, but then i think so many of the scoli kids (and teens/adults) are, so perhaps it goes with the territory.


I wouldn't worry too much Andrea, I think it's far better for her to be skinny than overweight. My physio complained to me that I'd ruined his most successful therapy for back problems by being so skinny - ie. telling his patients to lose weight!!!! :hammer: :hammer: