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)
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)
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.
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