Help with daughter. (Full Version)

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adamw1 -> Help with daughter. (May 2 2008 22:23:49)

I have been thinking about posting this for a while because help can come in the places you dont expect it sometimes.Sorry for the long post but i spend most of time on the diet forum and some of you guys offer superb advice backed with personal knowledge so i thought maybe someone can offer some advice.

I have a daughter with cerebal palsy and various problems one of those probs is she cant chew food so everything has to be pureed(she is 3 years old).Her consultant is kinda baffled which is often the case with cerebal palsy and anyone working within the NHS knows that speech therapists appointments are like gold dust.Lately She suffers a lot of movement problems and lately she is getting really frustrated within her self and its difficult to know why this is.

My personal opinion is her diet is a lot to blame because she is restricted in a small way as to what we can actually get down her we try and vary her diet as much as we can but as you can appreciate it is difficult. Everything is blended could this mean her system is processing everything too quickly so she is frustrated as she is hungry? Another problem could be her medicine losing its affect as she gets older/heavier but her doc says she is on max level.

We are just lost as to where to go from here and these sleepless nights are killing us.....and i look at her and something isnt right i just cant put my finger on it.

I dont know what im expecting you guys to say but honestly in past something so simple has helped so much so you never know do you . Thanks for the guys/gals who take time out to read this anyway its really appreciated if you need any more info just ask.Thanks guys.


Ak_88 -> RE: Help with daughter. (May 3 2008 10:10:33)

I'm not 100% sure but i think ginasmg (you'd find him most often in general) may have a child with the same condition, might be worth asking him bud.


Lucky_jim -> RE: Help with daughter. (May 3 2008 10:32:00)

sorry to hear that - i hope you find the answer you are looking for



adamw1 -> RE: Help with daughter. (May 4 2008 9:45:47)

One of her problems is epilepsy and i came across this thread earlier so im gonna try it as best i can considering i gotta blend everything,i know this issue doesnt relate to 99% of people here but hey if it helps one!

http://www.muscletalk.co.uk/m_2683391/tm.htm


H20 -> RE: Help with daughter. (May 4 2008 10:53:11)

Hiya Adam, good luck with finding an answer mate, sure someone will be able to give you some advice at some point.
As AK has said would be no harm in contacting Ginasmg in any case whether it be for advice or just sounding some thoughts off and support, he`s a really approachable fella and I`m sure he`d be more than glad to help [sm=thumbsup.gif].


adamw1 -> RE: Help with daughter. (May 4 2008 11:41:03)

Yeah thanks guys i will contact him any help is appreciated aswell .Thanks again.


James -> RE: Help with daughter. (May 4 2008 13:43:50)

I have a little experience with cerebral palsey, but it is minimal and I'm by no means an expert. I do however had considerable experience with swallowing problems from my clinical days.

Is there not dietetic involvement? Can you not request a speech and language therapist (SALT) appointment? I assume the SALT is looking at muscle control for the swallow? Is there not a multi-disciplinary out patient clinic involving all professionals?

It's both hard and unethical to advise too much without proper medical notes, therefore my advice can only be minimal. Also it's imperative that NO MEMBER who is unqualified in clinical nutrition posts here for legal reasons.

Few questions:
1) Has she been on a pureed diet all her life?
2) You mention that her food is blended too. Is it blended or pureed? Big distiction - and I assume you do mean the latter, if so to what consitency and with what thickener? Do you use food moulds?
3) Does she have any nutritional supplements?
4) Can you lay out a typical day's nutrition for me?
5) What is her energy expenditure like?
6) What's her weight like - both in the sense of change and distribution?


adamw1 -> RE: Help with daughter. (May 4 2008 16:35:05)

Thanks for your reply James the problem we have is because of her age and there are legal issues she has not been diagnosed with cerebal palsy as this is a blanket diagnosis so although she is been treated for it and all the health proffesionals involved accept what it is the consultant will not diagnose this.

So she is been treated for congenital dystonia,epilepsy,and she has gross development delay and learning disabilities.She has 6 monthly Ruth Griffiths assesments the last one coming in at 23% of her 42 months and she has also been having the multi-disiplinarys mostly without a speech therapist as there is none available,the last one was a locum who left in Jan.

We literally are flying solo with the feeding issues the dietician is no help whatsoever everything is pureed or mashed to the point where she can just swallow because she cannot chew and this has been since she was weaned.With regards to thickner there was one prescribed to help with help with fluids from an open cup but its not something she is capable of yet.

We were concerned with her weight gain about a year ago so we were prescribed with paedisure plus weight gainer shakes but at the moment her weight seems to be average but we do give her the shakes because nutritionally we know whats in them,she does have a lot of abnormal movements but is unable to walk so i think the energy expenditure could be that of an average toddler.

I will outline a rough days food intake but lately her appetite is terrible and she is refusing food

She has Her medicines 3 times a day crushed into a Fromage frais yogurt.

Breakfast - 11/2 Weetabix

Lunch - It varies a lot but we try and include veg,potatoes,meat anything that can be mashed finely so she doesnt gag.

Tea - Again same as dinner really can also be soups with bread and butter broke into it

We also also include 2 of the shakes a day and as much liquid as we can,its difficult as there is no communication with her and she cannot snack/finger foods like an average child.The only fruit she will take is a mashed banana and lately she dont want that i guess she dont like bananas lol.

All we have touched upon with a SALT is trying to encourage her to chew by placing foods in her mouth to the side etc but this doesnt really help at the moment.

I know maybe reading this doesnt paint a very good picture but she is such a happy child but there is so much frustration in her presently and we have no idea where its coming from and i hate to say it but it feels like the medical proffesions just wash there hands of cases like this because they just dont know what to do but obviously this doesnt help the parents,I will say though her physiotherapist is absolutely brilliant and she wouldnt be near where she is now without her.

sorry for the long post i have tried to make it easier to read but i type to fast and lose track lol but thank you if you take the time to read this it really is appreciated.


James -> RE: Help with daughter. (May 5 2008 18:00:45)

quote:

So she is been treated for congenital dystonia,epilepsy,and she has gross development delay and learning disabilities.She has 6 monthly Ruth Griffiths assesments the last one coming in at 23% of her 42 months and she has also been having the multi-disiplinarys mostly without a speech therapist as there is none available,the last one was a locum who left in Jan.

We literally are flying solo with the feeding issues the dietician is no help whatsoever everything is pureed or mashed to the point where she can just swallow because she cannot chew and this has been since she was weaned.With regards to thickner there was one prescribed to help with help with fluids from an open cup but its not something she is capable of yet.

Bad news about a SALT, there must be something legally you can do about this as it's imperative

It the need for pureed meals due to her inability to chew or an inability to swallow. This is very important as I can't help. Do you thicken the pureed foods? Indeed the term 'pureed' will mean to a specific consistency, so I need to be able to know exactly what's going on in order to help. Thickeners are not just for fluids they are for foods too.

What does she do for fluids?

Weetabix - with milk? what sort of milk? Sugar? When giving me info, please try to be detailed to save me asking again!

Does she like porridge?

Have they prescribed any glucose polymers, eg Maxijul?

So, let's be clear: her weight is ok, her activity is ok, it's just her behaviour which is an issue?



ginasmg -> RE: Help with daughter. (May 9 2008 23:35:40)

hi mate,
im realy sory for the late reply but ive only just read my mail,yes i have a daughter in the same situation with cerebal palsy (all associated problems)
i have sent you mail with some advise on it,please feel free to contact me anytime you feel you need to mate, im only too willing to help.all the best regards
mark.keep your chin up mate there are many things you can do to make the situation more comfortable.anyway have a read of the mail i sent you and see if things help at all.


adamw1 -> RE: Help with daughter. (May 10 2008 12:27:37)

Sorry for the late replys guys we are in the middle of moving house and had connection probs.Thanks for your email it really helps knowing others go through the same and i will be in touch soon as we can settle down.

James im not sure there is anything we can do legally about the SALT we had issues with our local NHS trust regarding lillies original consultant so we moved her care to another area although everything other than her main consultant care is local so thats 2 areas we cannot get a SALT or are on a waiting list for etc. Its got to the point where i am seriously considering going back to college to train to become one!

Ok her weight is fine we have no real issue with it other than being a bit consious as to whether she is hungry or not its just difficult to judge. I suppose Lillies activity and behaviour go hand in hand she doesnt seem to be frustrated at anything she seems to be trying to tell us something i know that may sound a bit silly but she is very restless always wanting to be in your arms and the thing with this is she wont just sit there and let you cuddle her,tell her stories etc. She just clambers all over you trying to get inside you it seems and we just think is there something we are missing.Its liilies inability to chew thats the problem when food hits her mouth she will just swallow(this is why we mash/puree the food so when she just swallows she will not choke),we try and put food to the side of her mouth etc but it pretty much goes straight down.She does get constipated but in general her toilet habits seem fine aswell.

Her weetabix is done with a tiny bit of water to soften then semi-skimmed milk and half a tea spoon of sugar,we have tried pretty much everything but weetabix is the only thing we know she will eat at the moment,we try and vary it but i think like the rest of us she just gets bored.

She drinks diluted squash through the day although not as much as we would like she will just turn her head at it and her peadasure milkshakes twice a day which she seems to like.

We havnt been prescribed anything for her diet other than the thickners a while ago by her consultant but i think there still in the drawer as she cant hold a cup properly yet to drink from(which im sure they where for) my girlfriend is convinced that puree/mashing her food isnt enough for her im not so sure the consistency would make that much of a difference.Maybe its her age and something she is going through im not sure but have to try find out and as she cant tell us if we can rule a few things out then we can say that.

I will list her meds see if this can help

Carbamazepine(Tegretol) 150mg 3 times daily.

Trihexyphenidyl(Broflex) 9mg/8mg/8mg morning/midday/evening.

Thanks once again

Adam.


Growler -> RE: Help with daughter. (May 10 2008 16:25:00)

Hi Adam,

I have some clinical experience working with patients with similar conditions as your daughter. Hunger doesn't tend to be a major issue in such cases, whether the diet is of a modified consistency such as your daughter or with liquid feeds. As you say her weight is currently fine, she is most probably getting adequate nutrition. The body is actually able able to very acuratley regulate appetite to mach its needs and especially so if the food consumed is fairly unvaried.

I wont offer any specific advice for the reason that James already mentioned (I'm one exam away from being a fully fledged dietitian) but I'd just say to use her weight to guage whether you need to adjust the amount of food. As I'm sure you can imagine, weight gain can become problematic with day to day practicalities.


James -> RE: Help with daughter. (May 12 2008 21:31:11)

Hi Adam

She needs a SALT - demand one from either your GP or consultant. It's their responsibility to organise an ECR (extra contractal referral) if they cannot access one locally. At worst this will mean you travelling to another hospital.

It's needed then I can advise more on the appropriate consistency.

There's a difference between liquidised, mashed, pureed and soft you see - all are terminology. If it is pureed, then you need to liquidise food, then add thickener. This can then mouled by moulds you can get free from the thickener companies. This will make her food more enjoyable and, for example, chicken, potato and peas can appear as three separate foods on her plate, and indeed resemble chicken, peas and potato individually.



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