Author Topic: Fussy Feeders - Dysphagia - a possibilty other than reflux  (Read 93494 times)

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Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #60 on: February 22, 2006, 08:18:22 am »
colenliam what your doc said was true for our DS ;D
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Offline xxxkizzixxx

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #61 on: February 22, 2006, 08:19:50 am »
Thanks everyone for the hugs and good wishes. It tells you something when people on the internet care more than the people around you and who are paid to look after you.

We have had a couple of good days ( I say good meaning for us )

Maybe we should move to the US :D as the docs there seem to be better clued up on all these issues. :)

Only time will tell at the moment. every body keeps saying maybe she will grow out of it ! I can live in hope lol

This site is a god send to all us mums and the people who have replied to my posts have given me the extra hope to continue with all this

THANK YOU :)

Karen

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #62 on: February 24, 2006, 22:38:22 pm »
Hi Karen,

I hope she's still doing well?

Just thinking of you.
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Offline xxxkizzixxx

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #63 on: February 28, 2006, 09:11:12 am »
Well things are not too bad i suppose as far as her drinking is going..... sometimes she will sometimes she wont. Im giving her some time to do as she wants and not what the docs say she should do etc

If we could just get her to sleep at night. Last night i got a tatal of 2 hours sleep :'( and havent even spent a night in my bed since before Xmas!  I was in tears at 3 am this morning as im so tired due to DD waking every 40 or so minutes and her waking my 2 year old.
 Sleep has been a hard thing to get sorted with her due to her not having much of a routine due to the bad feeding etc

Im at my wits end now  and havent even got the brain cells working enough to think anymore.

Karen

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #64 on: February 28, 2006, 09:51:57 am »
Glad she is taking some on and off. What's the solid routine like?

How many teeth has she again...do you think it could be her teething?

What are her symptoms now hun?


Do you give Calpol or anything?

Silly Question probably butI found two things with my DS he has asthma only diagnosed a month ago . was such a bad sleeper always awake on and off, since the pump sleeps right through unless he has a tooth coming. Also I give Medised a paracetamol based medicine helps him sleep with teeth or cold what do you thing about DD?
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Offline xxxkizzixxx

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #65 on: February 28, 2006, 10:05:03 am »
Hi

she is teething but the top 4 are just about through. All coming at once poor thing.
This isnt the problem with her sleep as she has been like tis for months.
She wont sleep in her cot will only sleep in her bouncer! Tried last night in the cot and after trying to settle her for 15 mins she was VERY sick all over the cot ( thats what she thinks of bed ) lol

I give her medised or calpol maybe even nurofen but as it says 3 days use bit hard when its going on for months.

When i do get her to sleep she fusses in her sleep , figits tosses turns alot etc and wakes up. She will wake just about every 40 mins.

As far as symptoms go shes just the same still gags alot on milk and solids which still have to be puree. Its pot luck as to if she wil have a bottle . She will only drink after about an 8 hour gap between feeds / or Im still having to dream feed her!

The medised doesnt seem to make her sleep better even though it worked with my other DD who slept 12 hours solid the first time she had it  :o

I dont know about the asthma line ???? Hope not as my mum died of that and wouldnt be able to cope with all that!

Karen

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #66 on: February 28, 2006, 22:39:55 pm »
I was going to swear, I  >:( can not believe your circumstances.

Ok so the Asthma line is something you can look out for, child asthma sounds can be different from adults and my ds was a night time wheezer (not lemonade/bottle drinker I wish) LOL.
check out this website.   http://www.rale.ca/
Asthma would deffinetely keep her awake.

How's the Bupa and your DH job?

Not sure where you are in the Uk, but if all else fails London and Barts is the place to take your DD.

The sleeping issue is getting out of hand for both your sakes....

How much does she weigh?

How much did she weigh at birth?

PLUS.....one thing your already a good mum to one other child, you know her signs, and you know what is roughly normal for babies, (I don't think there is a standard thing for children) but what Karen do you think is wrong hun?...write it down here sometimes you even need to admit things to yourself, try throw caution to the wind and just type whatever comes into your head....sorry I don't mean to sound pushy just trying to help out  ;).
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Offline xxxkizzixxx

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #67 on: March 01, 2006, 08:21:01 am »
Hi

Thanks for all your replies. DH started his job monday so abit soon to attack bupa maybe?
Keely weighed  5lb 6oz when she was born, 4 weeks early. She spent about 3 weeks in special care as she had really bad jaundice ( above the transfusion level ) Then for 4 months had to have blood tests etc due to low heamoglobin. Poor thing didnt get the best start to life and has been poked and prodded ever since!

Shes now 10 months and weighs 18lb 6oz approx which is a good enough weight. We are all skinny.... my eldest daughter 10 is so skinny i wonder if she ever eats lol

Its so hard to think what is causing all Keely s problems. My other 2 girls were such big eaters and good sleepers ( lee anne would sleep from 6pm through to 8 am!) ;D

I spent most of yesterday looking at homeopathic remedys etc and have found some that might just fit the bill to sort out the sleeping. I can hope lol

Last night was the first good night in months. I put her in the cot at 10.30 after her dream feed and she only woke up about 6 times till 4.45 we got up and at 5.30 she drank 4oz!!! Sounds bad but was good for US. First night in my bed for months :o

Ive been told by some people that maybe i just have a very fussy baby ha ha no kidding
She does have a REALLY bad attachment to me and screams etc when i so much as leave the room or DH holds her. She goes mental when you get her changed etc  ( never known a baby like it ) have to really fight to change her!

Think Im starting to waffle lol so best end it there  :-\

Oh  I live in sussex near hastings !

Karen

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #68 on: March 01, 2006, 22:51:54 pm »
Brilliant...for last night really pleased for you, hope tonight is just as good or even better. LOL

My Ds is having a rough night keeps waking every hour since going to bed....not sure what he's up to, had a low temp for the last 3 days...I keep posting hear about teething....then I think he might have a cold as he has a runny nose.......rash...cough......just don't know at the moment...all the other babes in nursery seem to be doing the same and I was talking to one of my friends her baby is only sleeping for 2 hours a night at the moment....... :( and she's pregnant again!!!

What I was saying about the London and Barts, if she is getting worse not better as she was, then I'd get in the car and pop down to thier A & E...might sound a bit far fetched but if this continues for all your sakes....including your other children you must be really tierd, they have some of the best Gastro docs in the county.......they'll find out for you what's going on. If you get to the tube stage again that is!


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Offline Calypso

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #69 on: March 21, 2006, 16:37:08 pm »
Hi there,

Just wondering if anyone knows where I can get a MBS done for my son in London, UK...... he has reflux and we are finding the hospitals to be very unhelpful. Everytime we mention that we think he needs a swallow study , they just keep dismissing the idea even though he is constantly gulping whilst drinking. This has now led to milk refusal and we struggle to get even 300-400 ml down him a day (and that too is fed with a syringe). We have decided to take matters into our own hands and have the MBS done privately , even if it is just for our own piece of mind.....

Any help would be most appreciated as we are at our wits end now. We have suffered this problem for the last four months and it is now getting unbearable. He has been on all the meds for the entirety of this period but they have made no difference at all. We are also thickening his milk and although this has reduced the gulping , its still there and still prevents him from taking more than 30-40 ml of his feed.

Thanking you in advance!


Offline L™uren

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #70 on: March 21, 2006, 17:01:41 pm »
Calypso, sorry to hear about your problems, I am not sure where you would get it done. Have you tried BUPA or somewhere private?

Is your own doctor refusing to refer your LO for a MBS?
« Last Edit: March 21, 2006, 17:05:49 pm by Calums_Mum »
Lauren x


Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #71 on: March 21, 2006, 22:11:08 pm »
Hi all,

Well it was his teeth.

Callums mum - I looked on the internet they have a facility for a MBS below - deffinetely call Bupa they cover my DS for £20 a month....brilliant and this was even when he had been diagnosed with reflux already. However.......

PPS. you can go to a bupa hospital for a routine appointment with a bupa GP which costs approx £15, without being referd by your GP, it's how the rich go to the doctors I suppose..... :-\, then they will refer you privately if your GP wont.....Beat the system!. List of bupa hospitals' at the bottom...HOpe this helps let us know how you get on {hugs}, keep fighting for your babes x

The Royal Marsden NHS Foundation Trust
Fulham Road
London
SW3 6JJ

The London site is located in Chelsea, close to the centre of the city and near to first class hotels, museums and the shopping areas of Knightsbridge and the King's Road.


Travel by underground

The nearest underground station is South Kensington which is about seven minutesí walk away through Onslow Square. South Kensington station is served by the Piccadilly, District and Circle lines.


Travel by bus

Several buses run past the hospital or stop nearby.

Numbers 14, 414 and 345 pass the hospital.

Numbers 11, 19, 22, 70, 74, 211, 319 and C1 have stops within easy reach.


Parking

Please note that the hospital is unable to offer car parking facilities and that apart from a few metered bays and some disabled bays in Dudmaston Mews, on-street parking is strictly prohibited. Cars illegally parked are likely to be clamped. Cars parked in 'Resident Only' bays in Chelsea Square are likely to be towed away. Patients and visitors are strongly advised not to travel by car to the Chelsea site.


Useful numbers

London Travel Information (trains and buses): 020 7222 1234

London County Buses: 01737 242411

National Rail Enquiry Line: 08457 48 49 50

London General Transport Services Ltd: 020 8646 1747

South London Dial a Ride: 020 8784 6016

Rail timetables are available on the National Rail Enquiries website.

Speech and language therapy
The Speech and Language Therapy (SLT) service at the Royal Marsden Hospital is staffed by state registered specialist SLTs skilled in assessing, differentially diagnosing, treating and managing people who have communication and swallowing difficulties. These difficulties may be caused by the cancer or its treatment, and may be long-lasting or temporary. 

SLT intervention may be appropriate at any stage of the disease process and may include:


Provision of information on  swallowing and communication within the context of the patientís diagnosis and treatment 
Assessing a patientís swallow function at the bedside or using videofluoroscopy (modified barium swallow)
Providing and monitoring exercises to improve and maintain muscles used for speech and or swallowing
Assessing patients who have delayed language processing and provide strategies to help them speak with and understand others
Providing and adapting practical strategies to help others communicate with the person with speech or language difficulties
Being an advocate for the patient who has difficulty communicating their needs or concerns
Referring patients on to local services, if appropriate.

Patient referrals

Patients must have a hospital number to be seen by the speech & language therapist. Referrals may be written or verbal and are accepted from the patient, carer or any member of the multi-professional team.

The Speech and Language Therapy Department is open between 9.00a.m and 5.00 p.m
Monday to Friday excluding Bank Holidays. All routine referrals are dealt with during these times.


Staff

Helen White, SLT Team Leader, Surrey
Patsy Allan, Specialist SLT, London


BUPA

Gatwick
BUPA Gatwick Park Hospital
Povey Cross Road
Horley
Surrey
RH6 0BB
Telephone: 01293 785 511
Fax: 01293 774 883
Email: cservice-gp@bupa.com

Ilford
BUPA Roding Hospital
Roding Lane South
Ilford
Essex
IG4 5PZ
Telephone: 020 8551 1100
Fax: 020 8709 7804
Email: cservice-rd@bupa.com


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Offline gemz

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #72 on: March 29, 2006, 19:04:03 pm »
Hi Everyone  :D

Found this site yesterday and am so happy to have read about dysphagia as I am at my wits end about my lo's feeding habits. My lo is 14 weeks and during the first few weeks we did notice he used to gulp a lot on the bottle. We put it down to drinking too fast, but thinking back now it was probably choking. He then developed a tummy bug around 8 weeks which went on for a while and he became extremely windy on the bottle as well as choking at times. The doc said to change to lactose free formula and suggested using gaviscon in his feeds for the wind. This has not resovled the problem and his  gagging on the bottle has gotten worse with bad wind on top. The past 2 weeks have been unbearable to feed him as he not only looks like he is chocking at times, but he has so much air with it that he is now very uncomfortable. He also cries when the bottle comes near him even after he has winded and has only taken half an ounce and we know he is still hungry as how can a baby be satisfied with half an ounce when they haven't eaten for 3 hours. We think his air problem is due to him not swallowing properly and thus gulping in a lot of air whilst trying to swallow. The bizarre thing is that he is a great feeder when sleepy and will take 4-5 ounces no problem. When he is fully awake is when all the problems start and we can take approximately 1-2 hours to feed him 4 ounces. The doc reckons he is just a fussy eater with a bit of wind and as he has not lost any weight he is not worried, but I cannot accept that as why does he feed so well when he is sleepy. I think my HV knows that I am at my wits end and she has promised to talk to a speech therapist about this mabye being a swallowing problem. The only thing is that if we get referred to a speech therapist it will take months to see her
( the good old NHS) and I am now tempted to try thickening his feeds on my own to see if it helps.  I was wondering if anyone in the UK has used the simplythick in their feeds as I read on their site that it is not for babes under 3 years - what to use then in the UK for a 3 month old?

I am going to get him weighed tomorrow and am convinced he has lost this week as he has been really bad the last few days -  wish us luck.

Look forward to anyone's comments on thickening feeds in the UK and any advice would be great.

Monique 

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #73 on: March 29, 2006, 21:25:25 pm »
Hi Monique,

Firstly 17 weeks you can start to wean on baby rice, we did as per our dietician, so please do not worry too much.

Helpfull hints I have found with all the trouble we have had with our DS now 14 months

1) Have you got a GOOD chemist near you? (the pharmacist know everything about the UK brands) take the name of the thickening agent and demand they find you an alternative.

2) What milk is babe on? Ring thier head office, I always found answers I needed from theese people. Cow and Gate were particularly good. The reason being is they have to have qualified Docs/nurses when advising on feeding matters if you ring head office with a general enquiry ie: How much sould baby be taking, you'll get through to a feeding specialist go from there and have a list of questions ready.

3) Find head office number by website & 118 118.

4) Omnio comfort cow & gate is a thicker feed but it does have a resonably high lactose count (not as high as other milks) SMA GOLD being the lowest but it a thin feed.....BUT you could find out your answer to the feeding dificulty ie: baby takes milk better and less gas so the lactose wont be an issue......lactose can cause gas also that's why your doc may have prescribed other milk and gavison is for reflux (sickness in baby to thicken the milk once in the stomach) not to break lactose down. Colief does this.

I hope this helps and is a start.....let us know how you get on good luck, and I typed quick if you do not understand anything feel free to post back and I'll explain in greater detail :)
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Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #74 on: March 30, 2006, 04:21:51 am »
Hi Monique!

Where did you read that about simplythick?  I just got on the website and couldn't find it.  There was a case study on there about premie twins using it though.  My son used it from 3 mos.-2 years with no problem and we recommend it all the time. 

I would definitely research it though.  Try not too stress too much about what you thicken with right now although I really highly suggest finding something better than cereal for many reasons.  If it's your only alternative than do what you have to, but thickening with rice isn't a good idea, even though doctors recommend it all the time.  It's a very inconsistent way to thicken.

I am sorry this is going to be such a hassle for you in terms of being able to see a speech therapist.  I would go ahead and try to thicken on your own in that case, because you really can't wait that long.  I would start with nectar thick and give that a few days and if you see no improvement, try honey thick.  I really hope you are able to see a speech pathologist soon, but in the meantime, hopefully this will help!
Nancy

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