Tracheomalacia questions

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Hello, I would be greatful for any information reagarding tracheal malasia. I am a grandmother of a 5 mth old grandson with this problem. He was treated for a snuffly nose and possilbe sinus infection. Given 3 different types of antibiotics, nothing seemed to help. He had thrush so bad his mouth was bleeding, the dr treated him for that. He was taken off mothers breast milk and put on Neutramegin formula. He has had broncholitis and respitory distress and hospitalised once. Now using nebulizer and having treatment 3 times a day. He doesnt seem to be getting any better. He is just being treated for lungs wheezing and congestion. tomorrow he is going to see a doctor who specialises in alergies and breathing problems. This is very frightening for the parents as they are both deaf and using all of their energy taking care of him. Do you have any advice on the subject.

Thanks Floss

Specializes in NICU, PICU, PCVICU and peds oncology.

Floss, how do you know that your grandson has tracheomalacia? Has he been bronchoscopied to visualize the trachea to find the soft, floppy spot or are they assuming that is what he has? Sometimes the symptoms can look like sinus or upper respiratory infection, and unfortunately, the antibiotics he was given are what caused him to get thrush. What kind of med is in the nebulizer? If he has tracheomalacia, the only thing that will really do any good is Vaponefrin (racemic epinephrine) by decreasing inflammation in the airway. Ventolin (albuterol) isn't much help in the upper airways. The "wheezing" associated with tracheomalacia sounds much different from the wheezing heard in bronchiolitis, asthma and foreign body aspiration because it is coming from a large, mainly rigid airway and is a result of the softened area flopping around. It's more of a sputter than a wheeze. I'm confused as to why the doctor changed his diet. Nutramigen is an elemental formula, basically predigested and low-allergy, but breast milk is too. Tracheomalacia can occur in a child with allergies, but not exclusively. The only good thing I can tell you about tracheomalacia is that most kids grow out of it. Some will require a tracheostomy to get them through to that point. Good luck. Let us know what happens.

Specializes in Community Health Nurse.

One of my grandsons has tracheomalacia, but seems to be outgrowing it now that he is two years of age. He had the exact same symptoms and signs that Jan speaks of too. He also used to have night terrors (which I'd never heard of before), but those have pretty much stopped. He's little for his age, and is a poor eater...difficult to feed. He is finally starting to feed himself chicken nuggets, fries, and other finger foods, but stays very picky about swallowing most foods, or even allowing other foods in his mouth. His teeth are slow coming in, too. Seems like his entire development has been slow, but just in the past several months, we've noticed some positive growth changes and eating habits with him. Some children just have a hard time getting past a certain age in life, but once they do it seems they start developing at record speed. I hope your grandson starts to get better soon, Floss_50. I know we were worried about our little guy a lot too. :kiss

Specializes in NICU, PICU, PCVICU and peds oncology.

Cheerfuldoer, the swallowing issue comes from the almost complete obstruction of the airway that occurs when the bolus is passing the weakened spot. The kids feel like they're choking, and who among us likes that feeling? So they are reluctant to swallow solids. Since your wee lad is now swallowing better, that's a good sign that his trachea is growing and "firming up". (The weakened area doesn't grow, so when the rest of the trachea does, the weak spot gets proportionally smaller as time goes on.) Great news. Keep the faith, Floss_50.

Specializes in Community Health Nurse.

Jan........thanks a lot! It's nice to read post where nurses are sharing of their expertise the way you are. Please continue sharing your nursing knowledge with us. :)

I'm going to email this thread to my daughter so she can read your comments. It is a relief to know our little guy is finally getting better now. He had a GI series done again the other day to check on the progression of the tracheomalacia. No results yet. He was also a breastfed baby for a year before the pedi doc had my daughter switch the baby to some soy formula. I didn't understand that either since I'm a firm believer in a mother's breastmilk for her baby.

Floss_50...there is a website about this problem. I believe I read it once, and think it is http://www.tracheomalacia.com

Give it a try. :)

Specializes in Community Health Nurse.

I found this on that site, but it's called laryngomalacia:

Laryngomalacia

Laryngomalacia is the most common congenital cause of noisy breathing, or stridor, in the newborn. Laryngomalcia describes a condition where the tissues of the larynx (the voice box), above the vocal cords, are soft or floppy. Because of this, when a baby with laryngomalacia breathes, these floppy tissues may fall over the vocal cords and partially block the opening into the windpipe or trachea. This results usually in a high pitched, fluttery inspiratory noise. It can be worse when the baby cries or eats.

Laryngomalacia is believed to represent an immaturity of the tissues of the larynx. Diagnosis of this condition is most easily done by a flexible laryngoscopy in the office. A small, flexible, fiber-optic telescope is used to visualize the larynx and the vocal cords to see if there is any collapse of the tissues just above the vocal cords.

In the majority of cases, laryngomalacia resolves on its own without any specific treatment. The tissues of the larynx become more firm as the child grows and the stridor usually resolves slowly over the child's first 18 months of life. The stridor may be worse with feeding, because of the increase negative inspiratory pressures associated with sucking, and it is suggested that feeding be done slowly and allow the child frequent rest periods. In small percentage of children with laryngomalcia, the obstruction caused by the collapsing tissues is more severe. This can result in poor weight gain because the baby is unable to eat without developing airway obstruction so they won't eat. It can also cause severe oxygenation problems and even heart complications. In these more severe cases, surgery may be needed to trim away some of the collapsing tissue.

©2002 UENTS Inc.

Thank you all so much for sharing your information with me. My grandson was taken to an ear nose and throat specialist My daughter said he inserted a tube into his ( nose or throat ) and she was told that the condition is tracheomalacia. His pediatician has also told us that is tracheomalacia and nothing to worry about it, he will be fine ! This was in Sept. 2003 . He was taken to see an alergy/asthma specialist on the 01/16/04 and he as already had blood tests for alergies, CBC, Cystic Fibrosis (DAA Prob), IBT Lab stat. 01/19/03 upper GI series. This is frightening!

Medication ORAPIED 1 tsp x 3 days. Three quarters tsp x 3 days, half tsp x 3 days.

ALBUTEROL 1 Vial every 2-4 hours until finnished.

In 0ne week begin PULMINOT 1 vial am and pm. He was taking this medication in the nebulizer until yesterday with all the others.

All other medication continue as directed

NYSTATIN for thrush again.

ERTHROMY/SULFISX 2ml 4times a day.

Since Dec my grandson has had Bronchiolitis and resperitory distress hospitalised for 3 days

pneumonitis

He isnt getting better. Lets hope this specialist can find out some things and then we can fight it.

Did we do the right thing by forcing the pediatrician to refer us to another doctor, specialist in this field? I think so!

Floss

Specializes in Community Health Nurse.
Originally posted by Floss_50

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Did we do the right thing by forcing the pediatrician to refer us to another doctor, specialist in this field? I think so!

Floss

You most certainly did do the right thing by seeing a specialist! Doctors can only treat patients that entrust their lives to them, so never apologize for selecting the best doctor you feel comfortable with for yourself and your family members. Afterall, you butter the docs bread, he doesn't butter yours! ;)

Keep us posted on your grandsons progress. :kiss

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