tracheal malaysia

[nursedlp]

My son was a 24 week micro-preemie. He was intubated for approximately 5 weeks before graduating to bi-pap. He ultimately was able to come home after 100 days and required no supplimental oxygen. After being home for approx. 3 months he developed an inspiratory stridor with some retraction. He has 2 hemanginomas so ENT did upper scope to R/O one in the throat. They saw nothing. He was presented to the ER when his breathsounds worsened and it appeared he was in distress. He recieved xopenex tx, however, I believe the calming car ride did more wonders. His O2 sats did not go below 97% and his chest x-ray was clear. Lung sounds also have been clear. My concern is that his breathing continues to become noisier and when upset he appears in distress. He feeds ok, however appears fatigued with the effort to eat and breath. He now wheezes cont., even sleep. I am frustrated because noone seems concerned with this except for my husband and myself. He has a pulm consult coming up... Is their any concern that this started when he began his synagis injections. Does tracheal malaysia appear so long after intubation? What is tx. Is it life threatening.He is a twin and brother is symptom free. Please help because info. is very limmited. Thank you

[Hunters_mom]

Check out:

LMTM _ Babies @ yahoo groups . com

It's a support group for parents that have children with either Laryngomalacia and/or Tracheomalacia and/or Bronchomalacia. If the site doesn't work goggle yahoo support groups then put in Tracheomalacia. You have to be a member to see everything. Just write a brief story about your situation, it gets viewed and they you get accepted. It's a wonderful support group with 58 member around the globe. The malacia's are rare and not much is known about them. Doctors try their best.

Colleen
mother to Dominick (12) Hunter (10 TM) Jennifer (9)

[Hunters_mom]

Hello All,
Funny, when our son was a baby the doctors in MO misspelled it to me too.

My son is 10 (he will be 11 in May) was also born with Tracheomalacia, Asthma and developed Failure to Thrive. He out grew his stridor by 3.

He still suffers from continued Upper Respiratory Infections. He has had RSV, Pneumonia x6, Bronchilitis/Bronchitis x6, Croup 15x. When he was a baby they simply told us he would out grow it too. I wish you all the best of luck. He had a lot of trouble sucking a bottle and developed Failure to Thrive. He is on the small side now but not too small.

When you take your baby/child to the ER they ask all kinds of questions to find the "trigger" that caused the illness. Know the answers. Clean his/her sheets on certain days. Dust every other day. Vaccuum the days you don't dust. The biggest advise is to --Keep a diary of his/her health issues along with a list of meds -with you at all times. Keep a bag packed for you and your child ready to go to the hospital -it helps.

You can see my thread under Tracheomalacia still at 10.

I hope that helps.
Colleen
mother to Dominick (12) Hunter (10 TM) and Jennifer (9)

[nursedlp]

Thank you for your response. I am thrilled that you were able to provide me with the correct dx. The nurse at urgent care wrote that down for us and i was frustrated being unable to find and info on  that. Thank you for the clarrification because we have found much more supports. I am just heartbroken because, we have actually watched him to struggle to breath for his life in the past and whenever he is in distress, it takes us back to those scarry days. Any other helpful advice is greatly appreciated and we bless you for your time.

[tomsant]

Was a diagnosis of Tracheomalacia made in your child? (It is not tracheal malaysia, it is tracheomalcia, meaning softening of trachea.)

Since the tracheal cartilage is soft, the windpipe tends to collapse on respiration. But tracheomalacia usually resolves with time, while any infections may have to be treated.

I am sure you will find help. Anyway at the consultation with pulmonologist you can ask in detail.

Hope this helps.

Best rgds,

Thomas Antony