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  1. #1
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    Default Hypotonia/ GDD/ Feeding issues - help

    Hi

    I have never used or joined anything like this before so please excuse my ignorance but i am desperate for some help and advice and medically have just hit wall after wall so figured that some mums that have been where i am or are there may be able to help.

    My beautiful baby girl is now four months old. She is on home oxygen and has a NG tube, despite MRI and other tests she has undiagnosed reason for global development delay, hypotonia, bilateral wrist drop.

    She was on ECMO immediately after birth and in NICU for first 5 weeks of her life. We are desperate to get some advice about trying to encourage her to feed from a bottle so that we can move onto solids and avoid getting a Peg if possible and that maybe helping trying to get some strength in her back may also assist with this?

    Gosh there are so many issues ...... does anyone have some advice please ??

  2. #2
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    Hi Welcome.

    My daughter is now almost 6 but sounded like your daughter a while ago.
    Alex (DD) was born full term, but had cardiac and ent issues that required surgery. She was ng, hypotonia, GDD, FTT etc etc. She's classed as 'undiagnosed genetic disorder'.

    I'd love to say theres a magic answer. DD went from ng to peg to Mic-Key button. She had gut issues which stopped her absorbing anything, so she flat refused to eat/drink. She was on TPN for a short while.

    Getting over the oral aversion was HARD! very hard and stressful.

    Try giving your daughter a lot of oral stimulation, with a dummy, chew toys, bottle teats etc so she can use her mouth without food/drink at 1st. See how she goes with that, and if she takes to it, try introducing water, then formula. It's a very slow process.

    Where abouts do you live? The RCH brisbane offer speech therapy services and feeding clinics.

  3. #3
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    Oh, 1 more thing, try a bumbo for core strength. Also sitting her on a gym ball and moving the ball slightly will engage her core muscles. Same with a skate board. Other good ideas are sitting her in a bumbo and making her reach for things to her sides, that will stregthen her up

  4. #4
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    Hi there
    We had similar with our DS GGD/hypotonia and born prem with the ng tube. Just a quick reply I will come back later. What is ur daughters response to feeding will she refuse the bottle or just not interested. As pp suggested try oral stimulation and a dummy if she will suck one. Another idea that may help google tube fed kids- it is an Australian site which supports parents of tube fed kids from around the world and makes suggestions on how to help with transitioning to oral feeding. We escaped a peg just and DS oral feeds now but will come back and write more later. Big hugs to u

  5. #5
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    Hi and welcome I am back now DS is finally in bed. I have just reread your post to make sure I make some sense to you and I will tell you alittle more about our story. DS is 2 and half and as I said previously born prem he spent 8 weeks intially in hospital (caught meningitis at 5 weeks old) and was discharged with a feeding tube (ng tube for top up feeding) as he wasn't quite taking full feeds. Fast forward 4 weeks and he was 100% dependant on the feeding tube due to reflux and oral aversion to the bottle. It took us til he was 10 nearly 11 months old to get him off of the tube. Ash has GDD/hypotonia, epilepsy, recently diagnosed as mild cerebral palsy but now drs are looking at a genetic/metabolic disorder as well. He also has a missing part in his brain that didn't develop properly and that is what they think is causing the epilepsy and cp. Anyway my saviour was finding the website that I mentioned above- I read other parents stories of kids stuck on a feeding tubes who could eat but didn't due to medical stuff that happened int he beginning or failure to thrive. The trauma of having multiple medical procedures unfortunately can cause babies to develop and oral aversion to feeding as they associate it with unpleasant things that have happened to them in the past such as being ventilated, surgery, oxygen therapy, suctioning and the list goes on. Anyway I discovered parents who were in the same position as us with the feeding tube who were trying to find a way to transition to oral feeding. This is where we discovered about hunger based weaning where under medical supervision the babies feeds were reduced up to half and oral feeding was attempted in a positive way with a bottle or sippy cup or just by spoon feeding purees. This is how we weaned our DS off the ng tube (the short version and under supervision of our paed) it took two weeks of reduced feeds, no vomiting for him to accept some solids off the spoon and the drinking came a few days after the tube came out.
    Suggestions that I'm hoping will be helpful:
    Have a look at the website google tube fed kids the support there is invaluable.
    are you seeing a speech therapist? Are you doing any oral motor exercises with your DD will she allow you to put you finger in her mouth and gently massage her gums? Does she gag if things go in her mouth? Will she take a dummy and suck at all on it? Try and make her facea positive place lots of kisses on her cheeks, touching and playing with her. Encourage her to put things in her mouth hands, blanket anything she likes the feel of.
    I'm guessing you guys might be seeing a physio? The bumbo idea is a great one we also did this with our DS, he hated tummy time. If she hates being on her tummy try lying her over you legs to improve her strength and carry her over your shoulder, play row row the boat and humpty dumpty to encourage trunk strength.
    If she is really sensitive to having her face/mouth touched try and get an Occupational therapist on board as she may have developed sensory issues due to the medical experiences she has had in the past. They should be able to give you some ideas to work on this.
    Goodluck I really hope this helps- I remember being in your very situation 2 years ago and the feeling of despair that my DS would never eat orally. Big hugs

  6. #6
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    Hello

    Baby G keeps me very busy so not much down time. Thank you for your responses.

    Baby G was born full term, natural delivery no drugs etc. We have done the MRI's, and have seen a geneticist (no testing needed), cardiologist and see a respiratory spec on a reg basis. Waiting to see a neurologist but at this stage looks like wil stay undiagnosed and not even sure of reason why we ended up where we are other than possibly meconium asp. She was given the odds of less than 2 hours to live so we are blessed beyond words to have got this far.

    Before we left hospital (8 weeks old) baby G was tkaing between 40 - 70mls fortified EMB by bottle and NG top ups. After getting home it dropped to between 5 - 10mls. Every feed i offer her the bottle first and then feed her with NG tube. She also has bad reflux and so has to be held up for 30 - 40 mins min after each feed. So each feed takes about one and half to two hours. She does tkae her dummy and seems to have an ok suck on the dummy but seems to be her swallow reflex is not so good as sometimes in the morning she starts while still in bed coughing and dry reaching then ends up with a "rattle" that she sometimes takes her an entire day to clear. Her Resp spec says it is not in her chest but just sits in her upper resp tract.


    She has only been moving her head and has some degree of neck control in the last 3 weeks (is currently 19 weeks). she has no back control so we have a bumbo chair but at present uses a tomato chair when sitting.


    We have seen a few sheechy's at the larger hospitals (not the RCH) and to be quite honest none have been much help as they suggest feeding her lying down, sitting up etc just trivial things but baby G has serious health and feeding issues but no one seems to have ANY idea??? i just find it bizarre that there have not been other babies with similar issues.

    i will look on the net for some ideas also to transition onto solids. Just feeling a bit lost that there isn't more guidence i spose and more of a plan of attack. Feeling a bit overhwhelmed but we will get there.

    thank you ladies for sharing your stories and advice as hearing what you have been through gives me strength.

  7. #7
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    wow, your little one sounds identical to mine. DD started off with meconium aspiration too...

  8. #8
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    You guys have certainly been thru a lot. We had the same trouble with speechies unfortunately. I do have one suggestion have u tried thickening her milk a little in her bottles to make the swallowing easier? Or has she ever had swallowing assessment or study done to make sure she's not aspirating. Sometimes babies can refuse to feed for this reason but I'm sure u have already covered these bases. The thickner can be bought from a chemist it's made by karicare it helped with DS delayed swallow we used to add a scoop to his bottles but check with ur paed about using it. Goodluck and keep trying she will get there.

  9. #9
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    If I decide to use the thickner u will need a faster flowing teat so the teat doesn't block up. Hope this helps

  10. #10
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    Hi again,

    We tried a thickener and gosh she screamed for hours and hours every morning after her first feed then i stopped it and within a day she was back to normal.

    I find our paed very frustrating i have had to force hime to refer for MRI's ect. His thinking is that she has been through a lot so lets just sit back and wait and see how she goes. I asked him multiple times for a ref to see a gastro and he wouldn't so went to another paed for it. I went to see him last week to get spinal MRI results and they were clear then he said we need to have a talk, he goes you know baby G is is not progressing along at the same rate as you would expect normal 4 month old to (this is my first babay but i'm not silly) and then he just said see you again in three months......

    Am in the process of organising a barium swallow and modified barium swallow but not sure if baby G is too young yet ?? Yes i am a bit worried about aspiration.

    We live on sunny coast so will have to see if another paed may be more helpful?


 

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