Any one with any experience of severe laryngomalacia ?

[jusmin]

Hello every one

I would love to hear any information about severe laryngomalacia, especially any first hand experience from any one who has worked with a child with severe laryngomalacia or perhaps any one being a parent or relative to a child with severe laryngomalacia. I would be extremely grateful to hear about any kind of experiences, especially about children who needs oxygen.

I apologize for any errors in my spelling or grammar as I live in Finland and English is not my mother tongue...

My son was diagnosed with laryngomalacia at the age of 5 months. The diagnosis was done through broncoscopy. He needs oxygen during sleep to keep his saturation above 90-95. Without oxygen the saturation stays most of the time above 90, but might also go below this. The saturation is continuously monitored during sleep with oxygen and pulse oxymetry.

The doctors have told me he is likely to outgrow this by the time he turns 2. But he is already 1 year and 7 months and still needs the extra oxygen supply. The amount of oxygen varies between 250 ml to 700 ml. Usually he needs 250- 500 ml. Some nights his saturation stays at 97- 98 without any oxygen supplies. We see his pediatric for check-ups regularly.

I counted his breathing frequency the other night and it was 30, which I think is quite normal for a 1,5 year old ? The breathing frequency used to be 40 -60 when he was a baby.

He has costal retractions and his breathing sounds a little like panting. But he does not have that snorting sound usually associated with laryngomalacia. He has feeding problems with solid foods. As a baby his weight gain was a little below normal, but now he is doing so much better and he is even a bit chubby :). Both his weight and height are actually a little above average now. He still has a hard time with normal solids and still eats mainly baby food. As a baby he would throw up a lot, sometimes several times a day. He would be eating and then just throw up every thing and then after we cleaned up etc he would start eating new food just like nothing had happened. I understand this has to do with the soft larynx. If he found even the smallest bread crumb on the floor it would make him throw up. Also tastes he didn´t like and some times crying would make him throw up. But he is doing so much better on that too now. He is hardly ever throwing up any more and if we give him bread he tries to eat it - without throwing up.

I feel pleased that he is doing better with the solids and that he is hardly ever throwing up. But I am concerned why he still needs oxygen.

Otherwise he is a very active child that has developed normally. He speaks some words, we are a bilingual family and his speech seems to develop on a normal basis. Which makes me relieved as I now there might be lingual problems with laryngomalacia. His motoric skills has also developed very well, he started walking at 11 months, is constantly climbing or running and is much more active than his big sister who doesn´t have laryngomalacia. He is a very cheerful and easy child.

I have tried to find other families with a child with laryngomalacia, but not been very successful and would be very grateful to hear your experiences. Thanks

Jusmin

[XB9S, BSN, MSN, EdD, RN, APN]

I am sorry to hear your son has been unwell, and pleased that he seems to be making some progress with his diet. Unfortunately we are unable to answer the questions that you are asking at allnurses.com as it would be inappropriate for us to give you any medical advice without having any input into his care.

This is a discussion you need to have with your son's health care providers where they can talk through your concerns and answer your questions with the support that you need.

Good luck