Jump to content

Did your Prem have "floppy airways"?
Tracheobronchomalacia


  • Please log in to reply
12 replies to this topic

#1 nayjay

Posted 19 December 2009 - 01:25 PM

Hi all.

Our DD (now 10.5mth) was diagnosed through bronchoscopy with tracheobronchomalacia 4 weeks ago.  I was just wondering if others have had this diagnosis or similar and how you coped with it (especially with respiratory infections etc).  Also wondering (if your prem is older) if it got progressively better or worse? Thank you.


#2 mumto3monkeys

Posted 19 December 2009 - 01:40 PM

Hi, I saw this in recent topics and while dd was full-term (38.3 weeks) she did have tracheobronchomalacia (floppy throat). It became most evident about 6 months with a persistent seal/bark-like cough. In her case it was more the trachea. She would cough to clear the little pouch in the trachea. She is now four and has no lingering side effects.

FIL and dh are both medical. It was explained to me as the trachea not fully "hardening" before birth.We had it checked out to rule out anything more sinister.

She did have croup a couple of times in her first year but has been fine since. (That could have been a coincidence.) She grew out of the bark/cough by 2 years. I don't remember when ... jus tsuddenly I realised she wasn't coughing constantly. From my understanding it is something that they do grow out off. I would guess it would be the same for your ds.

What I found really annoying were little old ladies who would come up to me and tutt-tutt that my coughing daughter was out of the house. I would explain it wasn't contageous etc etc. Our paed had one stay-at-home dad who asked for a letter to carry with him as he had so many people assume he was a dead-beat dad who wasn't looking after his child and abused him!

#3 Neonatal Diabetes

Posted 19 December 2009 - 05:19 PM

Nay

Ive got no experience with the condition, Im just really happy for you that you have got an answer.

With the chest infections though, Sarah is currently on Bronchiolitis # 10, so fingers crossed for you that the recurrent respitory infections this season were in part due to her first ex prem winter iykwim (Im certainly holding onto the hope that next winter has to be better than this one xmas_tongue.gif )

#4 Guest_jaicorbe_*

Posted 19 December 2009 - 05:40 PM

OP my DS#2 (born around 5 weeks prem) has Laryngomalacia which is similar, but of course, the larynx is where the weakness is. His was pretty severe and a couple of times in his first few years of life he stopped breathing and turned blue and we had to call an ambulance.

When DS was first dx'd with it he was a couple of weeks old. He had very noisy breathing. I as told that it usualy resolved itself at about 6 months old. When he was about 8 months older we were told that some resolved themselves between 12 and 18 months and when that didnt happen we were told some children dont outgrow it until they are in their teens. I have since read that some adults with muscular conditions never outgrow it and I am guessing my DS is one of those.

He suffered badly from croup up until this year and he has chronic asthma which isnt totally controlled by meds. I dont know if that is in any way connected to his laryngomalacia, but it all put together is a bit of a mess. We have a constant supply of predmix in the fridge but its dangerous to use for any length of time. I think all this has contributed to the fact that he also has a high pitched and breathy voice and has to stop mid word a lot to catch his breath.

I guess our experience is at the more severe end of the scale though and I hope you dont have to worry about anything anywhere near this sort of thing. Best wishes to you and your bubba.

#5 nayjay

Posted 19 December 2009 - 09:16 PM

Thank you for your replies.

mumto3monkeys -  
QUOTE
It was explained to me as the trachea not fully "hardening" before birth.
  Yes that is what I have been told...the cartilage hasn't formed properly.  Did you ever get an explanation of why it might happen? Did your DD require any treatment? So far our DD has only had 2 admissions plus an admission for her bronchoscopy.  As soon as she gets sick she is on Augmentin Duo & 3-4 days of steroids.  She also has ventolin twice a day, hypertonic saline (3%) through the nebuliser, and we do chest percussion a minimum of 2 times a day.  Because of the floppy trachea...we can hear what I call her reverse snore...a noise as she exhales (like a stridor) and because of the floppy bronchial tubes she also has ongoing cough and wheeze because the bronchial tubes trap heaps of mucous, etc in the lungs. She can't cough it up properly. She always has recession in the ribcage. We get the same comments "That's a nasty cough." "Is that your baby breathing?" etc etc....It is nice to hear that your DD grew out of it by 2.  The specialist said "We hope that around 2 we will see an improvement." SO I am hanging out for that.

Sarebear - HI!
QUOTE
next winter has to be better than this one
I hope so!!!!! It is great to have an answer...as now we have a treatment that is specific to her needs.  She is sick at the moment which is why I posted this...I really want to see a light at the end.  As soon as she is sick everything is tense...you would know what I mean.  Today her temp was over 40 and it took ages to get it down. Always seem to be off to the Dr.  

jaicorbe - THank you for sharing.  It must have been so scary.  We have had a few blue episodes and we are on the watch for apneas as she has had a few times in her sleep where I have caught her not breathing.
QUOTE
He had very noisy breathing
  That is like my DD.  I hope that your little man does show imrovement as he gets older.

#6 mumto3monkeys

Posted 19 December 2009 - 09:42 PM

Hi Nay,

DD didn't require any admissions or treatment. (We just went in for a barium swallow to check it wasn't anything really serious ... i.e. tumour or growth.) From what was explained to me it was just a case of timing. The child of the stay-at-home-dad I referred to in my previous post was also full-term so it certainly isn't just a prem thing iykwim. DH and FIL weren't concerned about it once we knew what it was. (And FIL tends to be very very attentive to his grandchildren's health ... more than he ever was with his own kids. rolleyes.gif )

As for the other treatment your dd is on, they are probably being very cautious because prem babies do have more respiratory issues. (My ds was five weeks early). DH is very concerned whenever ds starts coughing as he does get asthma and, as dh says, it is more "brittle" than full-term dd (depsite her now-resolved malacia.).

He puts it down to ds arriving early. (He was a great weight and only needed NICU for 24 hours but did have croup and severe broncialities in his first year). He is almost 3 now and we do find we rally have to get him on preventer medication in the cold-flu season to keep his asthma under control.

Goodluck



#7 nayjay

Posted 20 December 2009 - 08:47 AM

Thanks mumto3monkeys.  I have tried to google as much as I can and from what I have read it does seem to be congenital and not necessarily prem related...I was just trying to see if it was more frequent in prems.  I probably overthink it all too much but I would like to have a reason.  I go over and over it in my head wondering what I have done wrong, if it was a medication I was put on while pregnant, etc, etc. Our DD works hard to breath.  She can't breathe without the treatment especially when she is sick.  Then the secretions get trapped in her lungs and she gets sicker.  It is awful to see. She also has granular bronchitis (lesions in her airways) so maybe there is a secondary issue. Her airways are still very tiny as well. You're right being prem does aggravate things more.
Another question (sorry)...did your DD have growth issues at all?  The Paed has told me that because DD has to work so hard to breath she burns more calories than usual, hence her small weight gains.

#8 Neonatal Diabetes

Posted 20 December 2009 - 10:31 AM

QUOTE
I go over and over it in my head wondering what I have done wrong, if it was a medication I was put on while pregnant, etc, etc.


Oh Nay - I know this feeling all too well sad.gif , hang in there, hopefully as she gets bigger things will become a lot easier

QUOTE
The Paed has told me that because DD has to work so hard to breath she burns more calories than usual, hence her small weight gains


As you know we have had a battle with weigh gains here as well. Sarah has multiple conditions that are likely to be contributing (Malabsorbtion, Diabetes, Heart Defect etc) but our New Paed has said her recurrent bronchiolitis is probably the biggest issue, she works quite hard to breathe during episodes of it hence burns alot of calories in doing so, she gets rid of one bout of it and a few weeks later she has picked it up again.

We are giving her "shots" of Polyjoule just to add some extra free calories into her feeds, can you talk to your Paed about maybe adding polyjoule to her diet?

What is her weight now? Since we started adding Polyjoule sarah has gone from 5.1 kgs to 6.2 kgs in 6 weeks, our best ever weight gain

#9 nayjay

Posted 21 December 2009 - 05:53 PM

Hi Kat - How do you give the shots of polyjoule?  Do you just sprinkle it into her food?
At our last Paed visit the Paed recommended that I start polyjoule or simply add margarine or cream to her food.  He also suggested that we switched from breastmilk to formula (starting with A I think..can't remember) which I disagreed with so he wrote a lovely message on the chart about "mother will not consider starting formula..." rolleyes.gif .

She was 5.8kg at her last weigh...but she is sick again now and the meds that she is on are going straight through her so who knows what that will do to her weight.

QUOTE
our New Paed has said her recurrent bronchiolitis is probably the biggest issue, she works quite hard to breathe during episodes of it hence burns alot of calories in doing so, she gets rid of one bout of it and a few weeks later she has picked it up again.
Sounds like our DD (minus the other issues).  


#10 Neonatal Diabetes

Posted 22 December 2009 - 10:18 PM

With the Polyjoule you can sprinkle it in her solids. It is both Clear and tasteless so she wouldnt know its in there.

For the "shots" we make it up as follows

6 scoops of polyjoule and add hotwater to make up to 40mls. Shake, shake shake. It will look cloudy, but let sit for 30 mins and it will settle and turn clear. We then give her 5mls by syringe before each feed, but you can give up to 10mls.

The formula they are more than likely talking about is called Alfare. It is a semi-elemental formula which contains 50% MCT's. MCT's are Meduim Fatty Chain Acids and they are absorbed in a different part of the intestines. We have trialled it in the past but I imagine you would have the same issues as us in that the taste is horrible and Sarah flat out refused to drink it, most babies on Alfare are NG or Pag fed and this wasnt something that we wanted to consider - so they just made the same notation on our notes xmas_tongue.gif

You can purchase Polyjoule from a chemist without a prescription. Its about $15.00 for a 900g tin xmas_wink.gif

Has she been labelled as FTT yet? There is a thread in the kids with disabilities and special needs for FTT babies

#11 nayjay

Posted 23 December 2009 - 06:32 AM

Thanks for the info Kat. Will head to the chemist.  The Paed called me yesterday and she is going into the hospital tomorrow for yet another lot of blood tests and a B12 injection as her last lot of BT showed a deficiency.  Yet another reason why they are trying to push the formula...."more vitamins than breast milk" huh.gif On the other hand we have the Respiratory Specialist saying "Thank goodness you breastfeed." Hopefully it will only be a 30 minute "admission".  They said they have to monitor her after the injection.  (Our last baby had a B12 deficiency also.  At one point we were told he had MMA, a metabolic disorder, but then they decided it was just a deficiency...we still haven't had a definitive answer.)

I thought that we had avoided the FTT label (our 2 boys were diagnosed FTT from birth) but last time the Paed diagnosed FTT sad.gif.  Thanks for the info on the thread I might pop in there later on.

Edited by nayjay, 23 December 2009 - 06:41 AM.


#12 Neonatal Diabetes

Posted 03 January 2010 - 03:47 PM

HI nay

Just thought Id pop in and see how things are going?

How did the B12 Shot go?

#13 nayjay

Posted 04 January 2010 - 07:21 AM

Thanks for asking, Kat.  All went well.  She was admitted for a few hours instead of minutes though....not because of a reaction but it took forever to get a urine specimen rolleyes.gif .  They took blood from her ankle this time...and (even though I still feel like vomitting at the thought of it) it was the easiest she has ever bled and I was able to cradle her while they did it.  Now we wait for a month and do it all again.

Her breathing is really bizzarre at the moment though.  You know the sound when you are drinking through a straw and the fluid is almost gone (only way I can think to describe it)...that is what she sounds like. Despite that though she has more energy than she has ever had... I think a combination of the high dose iron supp and the B12 has given her an energy boost...getting her to sleep is an issue now..it never has been before.

Hope that all is well for you and your family and little Sarah.  Thinking of you often.

Edited by nayjay, 04 January 2010 - 07:24 AM.





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

 

Tot meets his heroes, falls apart with excitement

Two-year-old Quincy finished his potty training last week, and as part of his reward he was able to meet his idols.

Beautiful in our eyes: Georgia's story

I will never deny the fact that grief has a place when you give birth to a child who brings a set of circumstances very different to what you imagined. Because for nine months, I thought I knew my Georgie.

'It's been phenomenal': widower dad of quads thankful for support

There was nothing Erica and Carlos wanted more than a baby.

Vin Diesel names daughter after actor Paul Walker

The actor said there was "no other person" he was thinking about when he chose the name.

How midwives can help women who experience domestic violence

More than half of women who live with abusive partners experience violence during pregnancy.

Mum describes giving birth during Cyclone Pam

A new mother was told she must flee Port Vila hospital with her baby as Cyclone Pam bore down.

6 signs you're done having babies

There were a few signs I'm never going back to the land of maternity jeans, breast pumps and bassinets.

Marta Dusseldorp reveals breastfeeding cost her an acting job

Australian actress Marta Dusseldorp has revealed she was forced to withdraw from a Sydney Theatre Company production because a director did not approve of her breast feeding.

Female celebs (or their babies) with traditionally male names

Looking for a name that's a little bit different for a girl? Turn to names that have been traditionally used for males, as these celebs (or their parents) did.

'If you're anti-immunisation ... take a look at this picture of my son'

Greg Hughes is "an absolute shell of a man" as he and his wife Catherine struggle to come to terms with the loss of their newborn son Riley to whooping cough.

How an extrovert can raise an introvert

Introverts are often misunderstood as shy, and sometimes even rude. A timid child can be difficult to build rapport with, but it's important we nurture their sensitive natures.

Sheryl Sandberg's advice

'Choreplay': Help out at home to get more sex, Sandberg tells men

Forget foreplay. The new and improved route to intercourse is "choreplay" - it's good for your spouse, good for your house, and comes with the imprimatur of feminist du jour Sheryl Sandberg.

How to play with your baby

The first time your child learns a new skill at playtime is very exciting - for both you and your baby! Play is important to your child's development for a variety of reasons - here are some simple ideas for you to try at home.

I'm a single mother by choice

For me, being the best mother I can be means being a mum alone, at least for now. Thinking of my friends with inadequate partners, I wonder why more people don’t choose single motherhood.

Awkward wedding photos

Weird poses, surprise photobombs, bizarre editing: these are the wedding photos that should have never seen the light of day.

Four-week-old baby Riley Hughes dies of whooping cough

The mother of a four-week-old Perth baby who died after contracting whooping cough says her family has been left devastated by the loss of her "gorgeous, sweet" son.

Win a Ben & Holly's Little Kingdom prize pack

To celebrate the April 1 release of Holly's Magic Wand on DVD and Digital, we are giving away five DVD packs featuring the newest installment of Ben & Holly's Little Kingdom Holly's Magic Wand and many more hours of family entertainment! Enter Now!

Oh boy! Video shows family's reaction to baby surprise

Little Peyton Williams thought she was getting a baby sister named Charlee. But the two-year-old has had to settle for a doll dressed in pink after her baby "sister" turned out to be a boy.

How to help build up your baby's immune system

We all know that having a strong immune system is the best way to stay healthy – but what can we do to help it along?

'Nick, you need to call an ambulance': home birth mum's tragic death

A Melbourne mum who died after the home birth of her baby pleaded with her husband to call an ambulance because she felt she was going to die, the Victorian Coroners Court has heard.

When dads believe their baby doesn't 'like' them

Q: My two-month-old baby doesn't like me. He's perfectly content with my wife, but when I try to hold him, he gets upset and cries. I've backed off a little, thinking that he just needs a little time to get used to me, but that doesn't seem to be working. I'm starting to think I'm just not a very good dad. Is it too late for me to build a relationship with my baby?

When was the last time a stranger praised your parenting?

Wouldn’t it be great to get some nice feedback every now and then? After all, everyone likes to hear positive praise, particularly when it comes to parenting.

Special Ticket Offer, Save $8!

The Essential Baby & Toddler Show is back this April! Save $8 off the door price for a limited time only!

15 names on the verge of extinction

If you're looking to revive an older name, or don’t want anything near the top 1000 list, check out these rare monikers for your unique baby.

5 characteristics of great dads

It’s great to see a generation of dads who are more actively involved with caring, nurturing and loving their kids.

Why doesn't Australia have more breast milk banks?

When there’s no question that milk banks are important, why don’t we have more of them in Australia?

Carrie Bickmore announces birth of daughter

Television personality Carrie Bickmore has given birth to her second child.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Sign up to our 30 days of #PlayIQ challenge

Sign up to receive 30 amazing tips and ideas for play with baby during the month of April and submit a picture or tip on our social wall for a chance to win an amazing Fisher-Price prize pack.

Man faces jail after giving woman abortion pill smoothie

A Norwegian man is facing jail after putting abortion pills in his ex-girlfriend's smoothie, causing her to have a miscarriage.

'He's a blessing': family of baby born without eyes

Jordy Jackson was born without eyes. He has anophthalmia, which affects one in every 100,000 babies born.

Win one of 5 Cadbury Easter Hampers

With Easter fast approaching, Cadbury are giving away 5 Cadbury Easter Hampers. Enter Now!

Super fit model Sarah Stage defends her pregnancy body

Model Sarah Stage has defended her pregnancy body after critics claimed her slim figure at eight-and-a-half months pregnant wasn't "normal".

Win a Ben & Holly's Little Kingdom and Peppa Pig prize pack

To celebrate the April 1 release of Holly's Magic Wand on DVD and Digital, Essential Baby and Entertainment One are giving away five bumper DVD packs featuring the newest installment of Ben & Holly's Little Kingdom Holly's Magic Wand and many more hours of family entertainment! Enter Now!

Why I post breastfeeding photos online

I love to take pictures of my children. In some of the pictures, my younger son is nursing.

The day I broke my baby

There are things I wish I didn't know. I wish I didn't know that companies make tiny braces, small enough to hold necks no bigger than a wrist.

The place just for dads of multiples

When a couple discovers they're expecting multiples, the dad can sometimes be almost forgotten in all the excitement and preparation. But one group offers a space just for dads of twins and higher-order multiples.

Brave mum calls for domestic violence law reform

A brave mum of two has shared details of the harrowing attacks she suffered at the hands of her partner in a bid to help other victims of domestic violence.

Why I had the new test for Down syndrome

Early last year I turned 35, and having just found out I was pregnant, I opted to have the new test for Down syndrome.

Geeky baby gear

If your family is more into Star Wars, gaming and the periodic table than most, you might want to check out these geek-chic baby items.

2015: the year of the sheep

According to the Chinese zodiac, babies born in the year of the sheep are creative and enjoy spending quiet time with their own thoughts.

Breakthrough genetic testing now available in Australia

Pregnant women will for the first time have access to locally analysed, accurate, non-invasive pre-natal genetic testing when the first Australian clinic to offer the services opens its doors next week.

Grandbabies: the babies born looking old

Not a day under 65 and a lifetime of struggle! That's the look of these newborns, who look adorably older than their real age. Social networking site Reddit recently featured user submissions of adorable grandbabies, here are our favourites.

Family kicked off flight after toddler seatbelt drama

An entire family was kicked off a Cathay Pacific flight when a misbehaving toddler refused to put his seatbelt on.

Stolen baby found after 17 years

A baby stolen from her mother's arms shortly after birth has been found through an astonishing coincidence.

53 creative pregnancy announcements

Announcing that you're expecting can be a time to express your creativity, sense of humour and imagination. Check out how other parents and parents-to-be have broken the news to friends and family.

IKEA hacks for the nursery and kids' rooms

Are you one of those that know the whole IKEA catalogue by heart? Love their stuff but want to personalise it? Here's some inspiration to help you realise the potential of IKEA furniture and fittings.

36 baby names inspired by food and drinks

A French court may have ruled out Nutella as a baby name, but that doesn't have to stop you from taking inspiration from the supermarket (or bottle shop). See what parents in the US have chosen for their delicious little ones.

Clever breastfeeding products

Check out this range of products designed to help make your breastfeeding journey more enjoyable, manageable and convenient.

 

Sign up now!

30 days of #PlayIQ challenge

Receive a daily email from Essential Baby during April with great play tips and ideas, then submit your baby at play photos to our Playwall, Instagram or Twitter for your chance to win.

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.