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Original poster

floppy larynx

24 replies

bamboozleslover · 10/07/2006 21:55

my ds was diagnosed a few days ago with floppy larynx but i don't know much about it. has anyone else lo had a floppy larynx and how has this affected them?

OP posts:

Jeepers · 10/07/2006 22:08

my dd was diagnosed with this. When she was born all she could do was make odd croaking noises instead of crying. She was packed off to the baby unit and scarily enough her oxygen levels dropped a couple of times when in certain positions. But after a few days when they had excluded other problems and she was feeding well she was discharged. For several months when she cried / got upset her cry was odd but that was it. A quick check up by apaediatrician at 2 months and they were happy with her and now at 10 months nothing! Generall it is something they grow out of and can be linked to the size of the baby ie larger babies are more prone to it. hope this is reassuring

MuddlingThru · 10/07/2006 22:12

ds had a floppy larynx (I didn't realise that larger babies were more prone to - ds is 98th centile for both height and weight). Never seemed to bother him. It meant that we could always hear his breathing on the monitor (sounded like we were keeping tabs on Darth Vader!) but I always found that quite reassuring. DS is now a year old and has grown out of it, can't really remember when that happened, I would guess that from about 6 months the Darth Vader sound effect just gradually faded.

Jeepers · 10/07/2006 22:25

Yes it was reassuring listening to her at night! On the (very) few occasions when she slept quietly dh and i would hang over the crib trying to listen for her breathing. Generally this resulted in one awake baby.....

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Original poster

bamboozleslover · 10/07/2006 23:00

oh..my ds is having trouble feeding cos of it and has lost weight. i thought that would be a common thing, but maybe not!

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Jeepers · 10/07/2006 23:36

I think it is not uncommon. When dd was in special care there were three other babies in there with it too. I found it stange that the staff were so blase about it all, i mean at the time it sounded that dd was choking everytime she breathed but they were right and now she is fine. DD had a little touble feeding at first, the docor explained it that as she was having to work extra hard to just breathe that when she had to suck on top of this too it was too much work for her and she would stop eating before she should. But as they reassured me the cartilage part of the floppy larynx toughened up and this improved.

Original poster

bamboozleslover · 10/07/2006 23:38

was your dd underweight? ds had gained his birthweight last wed but when weighed today he has lost 2 oz.

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hunkermunker · 10/07/2006 23:39

bamboozleslover, was he weighed naked on the same scales that were used last Wed? Was it a spring balance scale or a proper one?

Original poster

bamboozleslover · 10/07/2006 23:43

on wed he was done naked but on a spring one. today it was on proper ones. he was weighed last monday on proper scales too and has gained 2 ounces since then, but still 3
under birth weight.

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Jeepers · 10/07/2006 23:45

No not underweight. But its difficult to work out because for a while she was fed by a tube ontop of bf so she was always topped up. Doctors also mentioned that things can deteriorate a wee bit if they have cough/ cold etc as that puts extra pressure on their airways. has your ds been well otherwise?

hunkermunker · 10/07/2006 23:45

I think you can discount the spring balance one - they're notoriously unreliable.

Original poster

bamboozleslover · 10/07/2006 23:51

yeah. GP checked for infections and he hasn't got any..

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Chandra · 10/07/2006 23:52

DS had also a floppy larinx, and as other have said we had our little Darth Vader as a lodger. The stressful thing was only about having to run and change his position everytime he started chocking. Just flip it on the other side would do the trick. He was booked for an operation to correct the problem but by the time we got the appointment the problem had almost corrected itself, unfortunately... after the opperation he had lots of problems keeping the food in and he didn't gain any weight in 2 months.

Regarding the scales.... DS was 75% when he was born, then he lost some weight after a few days and a couple of weeks later he went down a few more Oz. It all turned out to be a problem of using different scales. HV set the scale on a not very firm surface the day of the worst reading which was inaccurate as we confirmed one day afterwards.

Something that I have noticed about percentils is that they can stress you much for nothing, sometimes the difference between a 75 and a 50 percentile is just less than 10mm in lenght which can account possibly to baby folding his knees, head slightly out of border etc. Sometimes I think that part of my worries during the first year was about getting DS back to 75 percentile when he was possibly measured wrongly on the day of his birth...

Original poster

bamboozleslover · 10/07/2006 23:56

can someone explain to me all this centile business i don'treally get it. ds is on the 2nd centile i think the HV said.

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Jeepers · 11/07/2006 00:00

Its really hard i know but try not to focus on individual weights. The most importaant thing is the overall trend and whether that is heading in the right direction., As others have said scales and measurementsw can be unreliable. Whats your gut feeling about how your ds is doing?

Chandra · 11/07/2006 00:03

HOw much did he weight at birth?

Jeepers · 11/07/2006 00:08

The charts have been calculated by looking thousands of babies to examine the so called normal weights and weight gain at different ages. The 50th centile is an average weight for a child whilst the 98th centile is above the average e.g. out of 100 chilren only 2 would be expected to be above that weight. the 2nd centile is below this average weight and again out of 100 children 98 would be expected to be above this weight. Please note that normal is a range and your ds's weight trend is more important

Original poster

bamboozleslover · 11/07/2006 00:09

HV was pointing out something about the curve to MW. will make sure to look tomorrow to see if it is ok. i actually wish he would cry more. then i would know oh he cries when he's hungry so if he's not crying then he can't be hungry. but the thign is he only cries very occasionally so i don't feel confident that just cos he appears happy he is okay iyswim. i really don't think it is normal for it to take up to 2 hours to get him to eat or for him to go 6 hours between feeds and sometimes even up to 9!but he doesn't seem distressed at all.

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Chandra · 11/07/2006 00:13

Bamboo... after all that mess and scares with the scales I decided to feed DS every 3 hours, if he was sleeping I woke him up and tried to keep him awake while feeding (otherwise he did just doze and forgot about eating). And he was fine, didn't have problem to go to sleep afterwards. He was rather chubby when he wnet for his op.

Jeepers · 11/07/2006 00:18

It must be very stressful for you. The big proviso about dd coming home from hospital and in fact whether she needed to have more tests was that she was feeding well and that the floppy larynx wasn't stopping that. All the follow up after hospital was to make sure this wasn't happening. It sounds like it maybe affecting your ds. Do you have a follow up appt with a paediatrician in the future? can you bring this forward?

jabberwocky · 11/07/2006 00:32

Ds had a mild case of this. Other than being a noisy breather, it didn't seem to affect him and he grew out of it after a few months.

TheLadyVanishes · 11/07/2006 14:05

My dd who is one has this, she goes to the hospital every six months for checks as normally it goes away on its own (hers hasn't tho) first time i noticed it i thought she had had a fit and rushed her to A&E as her head was jerking to the side and the noise she made was very bizarre, dd hadn't put on much weight as it had affected her feeding too (tho she did have reflux which didn't help either) she is still on prescribed milk. Its only in the last week that i've notice an improvement as yesterday she fell and scatched her face started crying badly but no stridor (another name for it) yet four nights ago she woke up crying and it was there. She used to snore and was a noisy breather but come to think of it that has improved too. Tbh i'm pleased they left it, she got referred to another hospital to see if further checks were needed ie camera down the throat but luckily the doc thought it would improve on its own.

Original poster

bamboozleslover · 13/07/2006 16:18

well i looked on his growth curve and he is slipping off it a bit. went to the paeditrician at the local hospital and she has referred him to birmingham children's hospital as she wants him to have a camera down his throat and has to be put under anasthetic (sp?) which they can't do at our hosp. he choked while he was asleep for the first time yesterday, he usually just does it while feeding. now they aren't sure it is floppy larynx they think it might be something slightly further down, as i happened to mention that he hardly cries and when it does it isn't exactly very loud.
also found out he should have had a thyroid test when he was born as i have an underactive thyroid, but he wasn't given one. he had to have it done today - was horrible to watch!paed wasn't happy about that i can tell you as she said that could be one of the reasons he was so sleepy and not feeding, which i told them the day he was born yet they still discharged him! well after a shoddy start in maternity i can't fault the children's department. they got us an appointment with them in 2 days and an appointment at birmingham in less than an hour. hopefully they will tell me to get lost when i go tomorrow and say he is fine lol.

OP posts:

foxinsocks · 13/07/2006 16:23

oh good - I think I posted on another thread for you. Well done for taking him back - they are normally fantastic with tiny babies once you are in the hospital system so I'm glad they are taking this seriously and hope everything turns out ok. Let us know what they say. Hope you are managing - I imagine it is draining to keep going back and forth to hospital and deal with sleepless nights!

Jeepers · 13/07/2006 17:30

So glad that you and your ds are getting the medical input that you need. Good luck with everything

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