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Swallowing problems?


 
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mollysmommy
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PostPosted: January 16 2004, 11:58 PM    Post subject:
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My daughter is 6 months old and has not had any medical problems. She is a happy, chubby, little rollie pollie. That is why I was so amazed that when we went to our 6 month DS appt we did not leave the hospital for 5 days. And when we did leave, we took her home with a feeding tube. I had explained to the nurse that she had not been nursing very well, some respitory problems, and had not had a BM for 14 days. She immediately said we needed to do a swallow study. The results showed that she was aspirating my breast milk into her lungs. They tried to thickened the milk with rice cereal, but she would not even touch that bottle. (never liked bottles) They admitted her to the hospital and said my husband and I needed to be trained on a NG feeding tube. I was devistated. Then when they looked into the lack of BM, which initially they thought was low input, means low output. The xray showed she was packed with stool. Many tests later, they were convinced she had Heirsprungs (sp)Disease and would need surgery to remove the inactive part of her large intestines. Luckily the final biospy showed she did not have the disease. Thank goodness. Anyway, back to the feeding tube....We have been feeding her through the tube and 1/2 ounce thickened with the bottle to try to teach her to swallow properly. We go back Tuesday for another swallow study to see if she can be removed from the tube. Has anyone had swallowing problems and how did it turn out. Not sure if this is something temporary. I have been very lucky with a healthy child, but this really through me for a loop. Emotionally I am a reck. She is a trooper though, never cried or complained one bit. Looking to hear from anyone who might have had a similar problem.

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Peggy - Mother to Marisa 9, Shelby 7, and Molly (DS) 19 months
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Terri G
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PostPosted: January 17 2004, 12:36 AM    Post subject:
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MC was on a feeding tube after her abdominal surgery. We had to get trained on that as well. She was in 3 weeks but was taking bottles again by the time she was discharged. I don't know if that helps. I have to thicken her bottles with rice ceral as well. She has big time problems with reflux (they think as upper gi yesterday showed no blockage). I was unable to breastfeed. I know MC has had problems with aspriation with the bottle. There is something called a swallowing test they're going to do on MC at some point. I don't really know what's involved all involved with your daughter but hope it comes out okay.
terri
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LoveMyLivi
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PostPosted: January 17 2004, 12:39 AM    Post subject:
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No experience to share...just wanted to say that I hope it all turns out well. Thank goodness that she didn't need any surgery (for Heirsprungs Disease).

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Veronika

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& my social butterfly...Olivia Lianne (11/22/02-DS) :)along with her faithful sidekick York
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mollysmommy
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PostPosted: January 17 2004, 12:47 AM    Post subject:
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Terri,

Yes, Molly is getting the OX Swallow Test again on Tuesday. It is a video xray of her drinking from a bottle and they can see where the liquid is going. It was very interesting to see. The doctors made it sound like it was something she would grow out of. He neck grew, but the flap that covers the lungs did not???? Still very confused by the entire thing. Thanks for you input.

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Helen
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PostPosted: January 19 2004, 7:49 AM    Post subject:
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Can't help really, but just hope that things settle down a bit, and Mollie can get back to being her usual happy rollie pollie! Thinking/praying for you - it's a lot for you to take on. Anyway, really hope she's got that BM out by now!!!!!

Helen

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mollysmommy
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PostPosted: January 21 2004, 3:33 PM    Post subject:
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Back from our second swallow study and Molly is still asperating into her lungs while she swallows. They suggested that we get a g-tube which is a feeding tube put into her belly. Not sure yet what we should do, still waiting to talk to the surgeon. I guess all this swallowing stuff is because of her low muscle tone. They don't think it will be long term, but do not know. They want her to continue to eat baby food and a small amount from a bottle so she continues to work those muscles needed to swallow. They will recheck the swallow study in 6 weeks. Any input from anyone who has been there would help. Thanks.

She was rechecked for the whole poop thing (large intestine problem) and that is all okay. She is pooping daily and the doctor was pleased with the way her intestines were shrinking back to their normal size. Thank goodness for some good news.

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vonda
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PostPosted: January 21 2004, 4:14 PM    Post subject:
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That sounds scary. Wouldn't she be at a higher risk to develop a lung infection or pneumonia from all that going into her lungs? Vonda
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mollysmommy
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PostPosted: January 21 2004, 4:35 PM    Post subject:
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Vonda,

The amount going into her lungs now is very small. They don't feel it is enough to cause an infection or pneumonia. The body can absorb some fluids. They want to continue the thickened formula and baby foods because that keeps her swallowing more than just saliva and it is not as likely to go into her lungs as straight breast milk or formula. The thinner the fluid the more in the lungs.

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carolyn
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PostPosted: January 21 2004, 7:40 PM    Post subject:
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Mollysmummy, what a difficult time for you. That sounds very dramatic since she has obviously been doing fine otherwise. My son keir had an ng tube from 5 days old to about 8 months old. There was no real diagnosis about why, the consultant just felt he wasnt consuming enough while in hospital after he was born due to general muscle weakness and difficulty coordinating breathing sucking swallowing. He is fine now and eats everything and it meant that during those very early days when the brain is developing still that he got the nutrition he needed. It just took us an awful long time to get him off it once he had started on.

he was always at risk of fluid getting into his lungs even from the ng tube. sometimes if it had worked up his oesophagus and we put milk down he would immediatley start choking, poor tot. I hated having to manage the tube it is a brutal business putting it in etc and the skin on his face would get sore with the tape used to secure it and then of course he began tugging at it and in danger of pulling it out! but we just persevered and he grew and he luckily took to thickened liquids and then solids quite well. Just like Molly he found them much easier to manage than liquid which is so volatile. I remember thinking I would never here him glug from a cup..well now he glugs..! free flowing liquid ..it used to be such a problem for him.

We also had to work hard to help him keep his mouth muscles working when he was tube fed as the same muscles are used for speech. A speech therapist helped us with this.

Best of luck with it all, keep us posted. I will keep an eye on this thread in case there is anything specific you want to know more about our experience ( our e-mail is on the blink)

carrie

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mollysmommy
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PostPosted: January 22 2004, 10:07 AM    Post subject:
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Carrie,

Thanks for the information on your son. It helps put that fear aside that she won't be able to drink normally. Did they ever suggest that he get a g-tube instead of the ng-tube? They suggested that we have the surgery to put the G-tube in place in her stomach. We are still waiting on the surgeon to discuss the entire procedure and why they feel she should get that instead of keeping the ng tube. She has developed a horrible cold and it is so hard with a runny nose to keep the ng-tube properly taped in place. She is a trooper though. Mommy could sure use some of her strength.

Peggy

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carolyn
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PostPosted: January 23 2004, 7:26 PM    Post subject:
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Hi Peggy,

no, a g-tube was never suggested for Keir. Presumably the Consultant didnt feel it would be a long term problem (although 8 months felt like a pretty long time). I think as long as the ng-tube seemed to be working and manageable for us and Keir was getting his nutrition and progressing he just left it in. I did often wonder if the tube didnt create its own problems (in addition to the sight of it and the nuisance of it physically being there and having to litmus test each time before a feed to see its in his stomach still etc..) I know that I put less effort into trying to get him to feed by mouth because I could always just tip it down the tube and when I was tired, or busy that was often what happened. However in the long run there has been absolutely no ill effect and Keir is a wonderful eater and manages all types of food.

We started weaning him at 4 months as I was desperate to get him eating and off the tube. He just gradually took more and more by mouth and we had Thick and Easy to thicken his water with so he didnt dehydrate. We added his thickened water to whatever food he was eating so he took his water largely by spoon. Thick watery yoghurt was a common feature! We tried milkshakes and Angel Delight and milky puddings (rice pudding) and custard as ways of helping him get the milk he needed. We had both a nutritionist and speech therapist helpin us.

But this all started because Keir did not have the strength/co-ordination to suck enough milk from a bottle much less from the breast. It does seem quite dramatic that in your situation Molly seems to have been managing fine for 6 months and then this. I really feel for you. Has a speech therapist seen Molly to give an opinion? There was another Mum on the board whose son had a g-tube for some time. I will try and remember who she was and see if she has an e-mail address on the site.

Look after yourself Peggy. Its amazing what our little ones will put up with. Molly sounds fab. Please let me know how you get on.

Carrie

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carolyn
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PostPosted: January 23 2004, 7:43 PM    Post subject:
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Peggy,

if you look in the members section of this website you will find KnCmamma. She has a website devoted to her family and gives some details of the g-tube her son had. I think he may still have it judging by the site (just had a quick look) but I was really pleased to see that he is also starting eating orally now. She has waited a long time for that. I don't know how useful all this will be to you as obviously each child has a unique set of complications but at least you can know you are not alone in this.

Carrie

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