what would you do? im stuck need a little advice

Mel - posted on 07/09/2009

thanks guys, to Claire - she is safe to swallow. she has had 3 barium swallows one at 4 months that showed she was aspirating one at 7 months in which appeared to be safe but they only saw 2 small swallows and one at 10 months which was ok. this is why there is now no medical reason for her to be on the tube and she should have been weaned last year but they gave me the impression that due to her weigt it could be done. after talking to all the other ladies i believe the email weaning program is the right onw for me, and my mother said we should be happy to pay anything to get her off the tube and that is something other doctors and hospitals have failed to do, and of course we are happy to do that. i believe if they actually knew what they wing about on how to wean then she would no longer have a tube, however i have started taking the advice of the other women who used the Graz Model and am no longer offering her water. I dont think the vomitting would be an issue when the tube is out personally but we will see after that happens. i think its most definately associated completely with over feeding by tube feeding by what i have been told over the hour long conversation the pther night with a lady in Tasmania. she said they over feed the kids til they throw up because they can. Thankyou! I will let you know how i get on.

Lindsey - posted on 07/09/2009

I find that it's helpful for me to have real-life, face-to-face people to interact with when dealing with medical issues. I have not had much experience with feeding tubes, but these tubes are intended to be temporary, so anyone familiar with putting them in should be able to refer you to people familiar with weaning off of them. These clinics might not have the title of "weaning program", but they will definitely know what they are talking about.

Claire - posted on 07/09/2009

Hi There! If Brianna is vomiting after increased feed volumes I would ask for I
A Gastroenterology assessment for reflux as over feeding shouldn't cause vomiting. Reflux can be managed with medication and make the process of weaning off the tube much easier. I would also then ask for a videofluoroscopy to assess her swallow function you can do this through your Speech Pathologist who can then advise and the right textures and consistencies that would be helpful to wean Brianna onto. It is a slow process weaning from the tube but can be successful with the right team and support, I'm off on holiday next week so no computer access but please let me know how you get on and if I can help any further.

Mel - posted on 07/08/2009

thankyou! i have heard they can be yes, but she loves her food. has been eating since she was 3 months, but her skills have deteriorating due to too much milk and not weaning from the tube sooner. she had an endoscopy at 3 months which was fine, for a while i thought she may have it but now i believe after my research it is just because of the fact that tube fed babies are often over fed and do throw up.. she has a dietitian but i need to work on getting a new one becauseher idea helping brianna is the constant milk, she has a speech pathologist, pediatrician, OT, physio and child health nurse. they are from the hospital. Once and if i can transfer to my local team for the next 6 months that consists of a social worker, dietitian, speech pathologist, OT and physio

Claire - posted on 07/08/2009

Has your little girl had investigations for reflux? Often if this is the underlying reason for tube feeding then you will need a specialist approach to tube weaning with a team consisting of a Dietician, Speech and Language Therapist, Clinical Psychologist and Paediatric Gastroenterologist. Who is in your local team? I wish I could help you more and I do really understand how difficult this must be for you and your family, I think from the picture of your little girl managing a toothbrush in her mouth then that is very positive indeed as often children can be very orally aversive! So well done you!

Mel - posted on 07/08/2009

yes. she would throw it up if it was over any less then that but i forgot to mention now they are taking approx 45 minutes, they can be done safely over half an hour but it takes longer then that to go thru when i feed by gravity.



i have read the tube fed babies will throws up especially on bigger amounts but she is ok on the smaller amounts usually apart from today and once the tube is gone at least she will not be throwing up anymore. they tell me (someome who had her child weaned in austria) that the eating does not matter so much it is the drinking we ned to encourage because even after the tube is out the eating can come later. they also said never give water only drinks with calories. this is the exact opposite advice as to what was given from hospital. when they starved her for 48 hours they only allowed her to drrink water or eat food so she became low on energy and fussy and dehydrated

Claire - posted on 07/08/2009

Is she taking the feeds over an hour because she can't tolerate a gravity bolus feed (i.e over 10-15min)?

Mel - posted on 07/08/2009

sorry that was supposed to say 500 millsover night

Mel - posted on 07/08/2009

i agree with your last statement Claire, i have just found this out from the austraian weaning clinc, that cutting out feeds does not work, that they do it by gruadually reducing the amount in each feed by 50% in the first week and i forgot how much after that but by the second week the tube is usually gone. she is having bolus feeds through out the day, since she came out of hospital 2 weeks ago she has been tolerating the smaller amount of milk - down to 180 mills 3 times a day rather then 280 4 times a day. this is because now she is on continuous night feed from 8pm-6am of 50 mills per hour 9500 mills overnight total). prior to the admission to hospital she had no over night feeds since she was 10 months., just the three hour day feeds taking 1 hour 15 mins each

Claire - posted on 07/08/2009

I work in a feeding team in the UK and would advise against the Austrian Clinic and seek help from your local feeding team in the first instance. It is very important that they have a good medical history and can undertake the appropriate investigations to ensure your little girl can safely manage the volume of food she needs to ensure adequate weight gain and growth (following her centile lines) and that she does not have an underlying condition that may impact on her ability to safely wean off the tube. In our clinic once all investigations are undertaken we gradually drop the milk by 50ml (50kcal) which is equal to a biscuit, in our experience cutting out whole bolus feeds does not work. Is she toerating bolus feeds or on a continous feed? I hope you find the right team to help you.

Mel - posted on 07/08/2009

we've now been told the money business can wait shes more concerned about weaning brianna properly and would lke to speak to her doctors.



to Bianca - she has been cleared and is safe to swallow this is the exact question that the prof asked me by email, i am unsure about protecting her air way, but i KNOW she wants to eat. she puts food in to her mouth happily and heaps of it and i feel sorry for her when it comes out lol. Yes they have her on that amount of milk. it is pediasure. they want her to gain extra weight but that is a medical concern and the weaning is much more important then weight gain. i cannot change doctors because everyone in the hospitals in perth knows of brianna and to switch, well they are talk abd have meeting about her so they all have to have the same views and be in agreement on everything. that is why the only people thinking like me, and like the tube weaning clinic are the rockingham feeding management team.



The Prof wants to speak to her doctors so i really hope that she can convince them to give this a go, i would be more then happy to pay the $2000 AUST if it works.

Sandra - posted on 07/07/2009

Properly controlled I see no reason not to try. Seek the advice of her team(s) to ensure that it medically safe to do so via e-mail though. If you can get your child off tube feeding you are helping her one step closer to living a more natural life. What a dillemma.



I believe, if in your shoes, I would personally try whatever it took to give her whatever benefit of natural life I could.....as long as she can handle life effectively without a tube. Obviously there is a medical reason for her to be on the tube in the first place so ensure that being off the tube is in her best interest.



Hopefully on or the other of her medical teams will be of benefit to you in offering support of some kind.

Bianca - posted on 07/07/2009

Did I really read that they have her on MILK and 1300 MLS. WOW! That does not have all the nutrition she need and way to much volume which could be part of the problem with the putting anything else in her mouth. She is soooo full. She should be on a nutritionally complete formula (like Pedisure ) and 4 can covers 100 % nutrition for over 1yr olds and only 1000 mls with MORE calories. Maybe see if you can try that first and you may find her able to eat because she isn't so full she feels sick. Hope this all works out for u with least amount of stress. I can't help but say is again, if the doctor has her on only milk get a new doctor quick. Good luck. keep us updated

Bianca - posted on 07/07/2009

has she been cleared to have a safe swallow? is there the possibility that she wants to eat, but is protecting her airway? That was the case with my DD that is why i ask.

Mel - posted on 07/07/2009

family wants me to try the feeding team and protest like hell to get the hospital away from her and to Natasha yes shes happy to try all her food but she spits most out only a tiny bit goes down and not enough for her requirements. she has 1300 mills of milk a day right now because they want her to gain weight and its high calorie so we really need to get rid of the hospital. we have decided to just hope for the best with the meeting and hope that the feeding team can do it thier way. after the 6 months if we need to we will go with the tube weaning by email program

Misty - posted on 07/06/2009

I think you should research it and talk to you pediatrician. I guess I would do whatever I could to help my child lead the most "normal" life as possible

Melanie - posted on 07/06/2009

Ahhh I get it. I would probably go with the weaning via email as it appears the lest disruptive and easiest to do. You seem uncertain about the success of the feed management team, and having to get the hospital to release your child etc sounds like a nightmare.



So go for the weaning via email.

Natasha - posted on 07/06/2009

You're right, this IS a very uncommon question, however, since babies @ that age seem to always put stuff in their mouths, whether they're tube fed or not; have you tried just letting her lick stuff like popscicles, beef jerky, or anything? If so, what was her reaction? I of course don't know the answer and whatever the answer is, I'm sure it will continue to take a lot of patience on your part but I would think that maybe trial & error may be the key........You have a beautiful baby, please continue keep us posted on her progress!

Regina - posted on 07/06/2009

I'm sorry that you are dealing with this. I'm not sure what I would do, only because every situation is different for everone. What does her father and your family think you shold do? Better yet what are the drs. telling you to do? I'm sure what ever you decide will all work out in time, I wish you all the best

Mel - posted on 07/06/2009

what is holding me back, the only thing is the fact that i have another team willing and happy to take on her case and do it how they want to, but they are a feeding management team, not a tube weaning clinic, but also i have to get the hospital to agree to give care over for 6 months and i am waiting for the meeting on this which is july 22. i have to decide whether to let them try for 6 months and wean her off the tube, and if it doesnt work, then risk it being harder as she gets older, or do this program now since she is already 15 months and its more successful if the child is under 12 months. i hope i am explaining it right!

Melanie - posted on 07/06/2009

I am a compulsive researcher which sounds like you have done. I am also assuming the process isn't an easy one or you would not be having these reservations (a big assumption I know). I guess what you need to do is ask yourself whether the benefits of being tube free are worth the short term costs.



What is holding you back? is it the tube weaning process itself or is the tube your crutch are you worried about what might happen when your child starts eating food? and there is nothing wrong with that you have/have had a sick child you have every right to your fears. It still isn't coming out right.



I am not judging or anything like that, what I have tried to do is put myself in your position and think about how I might feel if it were my child.



No matter what your decision it will be the best one for you and child at this moment in time. That I am sure of.

Helen - posted on 07/06/2009

I think that if you have researched it and talked to other mothers who have done it and gotten their feedback on it and it something you then feel comfortable doing then I would go ahead and give it a try. As long as you know its not going to cause any harm to your child and will actually help them to live a more "normal" life then I don't see anything wrong with it. I don't have any personal experience with any part of your situation but just trying to put myself in your shoes and what I would do in that situation.