TRACHEAL MALAYSIA?

[anxiousmomof3]

My son when he was born made a loud sqeaking noise when he drank his bottle. Actually he made the noise when he slept ,drank, ate and I was concerned so I insisted on a referral to an ENT. After the exam it was determined he had Tracheal Malaysia. He was 2 months old, and I was told he would grow out of this condition and the only reason for further treatment was if he was having trouble eating and drinking. It has gotten much better and he's 2 years old now, but he still sqeaks loudly when he sleeps. Has anyone else out there had any experience with this. It doesn't bother his sleeping nor does he have problems eating or drinking but I wonder if he will ever grow out of this condition completely.

[Hunters_mom]

Hello All,
My son is 10 (he will be 11 in May) was also born with Tracheomalacia, Asthma and developed Failure to Thrive.

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)

[SashaTRS]

My new daughter was diagnosed with tracheal malaysia at about 4 weeks old.  She went in initially for the virus that causes croup, and after nearly 3 weeks of admission, the ENT fund the malaysia.  If, as in my baby's case, the malaysia is causing severe issues with eating (she was working so hard to just breath that she didn't have any energy left to eat and was therefore given an NG tube) they can surgically fix the malaysia.  She just had surgery to trim some of the floppy tissue this afternoon so I cannot tell you how it worked just yet, but I'm hopping.  I feel that I should also mention that my baby also has a VSD (a heart defect), but that her doctors do not feel that her heart is a big issue at this time.  She is now 6 weeks old, and I cannot wait to be able to bring her back home to be with the rest of her family.

[Hunters_mom]

Best of Luck with your daughter.

I am on a support group on Yahoo for Tracheomalacia (which is the correct spelling).

There are two other mom's on the support group with children with heart defects too. I urge you to check out the support group. They are my life line.

LMTM Babies"

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

[xtin]

Hai.... Shasha,

having read your situation, I also want to share my experience, my 4 month old daughter was also diagnosed with laringomalasia and she also has small VSD and PDA, she had been hospitalized since she was born until she was 2,5 months old, it was a horrible experience for us.Thank God, now she is home with us. She still struggle just to breathe, we feed her through NGT. Your situation is almost the same with us. How is your baby  now? We hope she's doing OK, and how about the surgery? our doctors still suggest the conservative way that doesn't include surgery. Can u share your experience after the surgery?
Many thanks

[Hunters_mom]

Thanks for adding me as a friend. How is your daughter doing with her Laryngomalacia? What is "small VSD and PDA"? I am not firmilar with that. I am assuming heart issues. Lots of times the babies/children with Laryngomalacia, Tracheomalacia and/or Bronchomalacia have other health issues such as; heart issues, sleep disorders or apnena, feeding disorder or failure to thrive, Large tonsils or adnoids, most have a stridor (a loud noise while breathing). There are some good videos on you tube to check out the stridors sounds. You tube is also a good sourse to view retractions -warning they are scary. Hunter is doing well. His new pulomary thinks Hunter's 15 Croups were actually Bronchacia mis-dianosed. They chenaged his meds from Advair 2xs daily to Flovent 2xs daily and Xeopenex as needed (PRN) to Atrovent PRN. Hunter has been well for 7 months! Miracles do happen!
I wish you and your baby well.
Colleen
mother to
Dominick (13) Hunter (TM 11) and Jennifer (soon to be 10)

[Shelly325]

I have a 6 yr old who had Laringo Malaysia as a baby and was on an apnea monitor until she was a year old. She also has a small VSD. At 6 years old, she has a low raspy voice. We have been doctoring for abdominal pain for the last year with no answers. So we are going to try a homeopathic route. Does anyone else out there have an older child with this same past and present conditions. In particular, we are interested in getting her help for her stomach pain.

I was really suprised to see the connection between the Laringo Malaysia and the VSD's just with the people in this forum.

Michelle