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Did your Prem have "floppy airways"?
Tracheobronchomalacia


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#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.





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