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.

[sandra5]

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[emmerz2012]

Hello. My name is Emily. I'm 17 years old and I was born with Tracheomalacia. When I was born, I was not breathing at all and doctors had to open my trachea with a tube. They then found out exactly what I had at that point. I was in an incubator for several months after I was born and once I was sent home from the hospital, I had to have a heart monitor on at all times. I had so many complications with my breathing especially when I was sick. Doctor's thought I might not ever be able to speak properly because they weren't quite sure what to make of what I was experiencing. Almost every time I got sick, I had to be in a room with a humidifier (if that's how it's spelled?) Like I have said before, I had many complications and my parents were constantly worried about me. I made that weird "barking" noise all the time too and everywhere we went in public, everyone thought that something was seriously wrong with me or that my parents abused me in some way for me to make such and awful sound. (That was not the case). Eventually, I got to the point where I no longer made the noise while breathing. My Tracheomalacia never affected my speech nor did I have any other complications except for being sick more often. Today, I'm a normal teenager getting ready to start senior year later this month. I still have the ability to make that noise when I breathe in but I have to force myself too do so. I not only proved Doctor's wrong by being able to talk like a normal person, but I am in advanced English classes, I swim for my school, I played soccer, I sing in the choir, and I play the flute in band (and instrument that takes up quite a bit of air) I have no heart problems and everything else seems right. I just want everyone to know my story. I also want to say that I have yet to meet another human being that has Tracheomalacia.... I hope everything goes well with all of the mom's on this page/website and I hope my story helps :) P.S. Sorry for any typing errors

[alerynn]

I also have a some who is 16 months old he has severe Laryngo Malycia. I fought the drs to send him to an ENT and they kept saying he'll outgrow it. Well I fought and fought untill I got an Ent referal and sure enough I was righ he had Laryngo Malaycia. Landyn was so bad he had to have the SupraGlatto Plasty surgery and it helped to an extent. When it gets warm his breathing gets really bad and he was also on a sleep apnea monitor for a while and still is every now and then. Landyn seemed to be getting better untill his breathing got worse again. He has enlarged adnoids and tonsils and just found out he is aspirating into his lungs. We go monday to have the tonsils and adnoids out. He also is FTT and has struggled greatly with his weight. We did speech therapy in where they helped him cope with eating (he also has Oral adversions and Sensory processing disorder)and starting gaining weight finally only to lose it again. The have talked about a feeding tube before he gained the weight and a nissen wrap but avoided it since he had gained weight for a short time. He falls in the 3rd percentile all the way around. If this surgery monday doesnt work they are talking about doing the nissen wrap again. I guess it supose to help him with aspirating. I keep digging and digging untill I get answers. I have a lot of faith in our ENT and he listens. The aspirations though went undiagnoised for over a year though but, found he is a silent aspirator he doesnt show signs of it because of the severe GERD. The list with my Little Man goes on and on. It is a constent struggle and as hard as it seems in the beginning dont give up. Life with drs becomes normal and you just do it. It is scary for sure. Most children do outgrow it but if it affects your child a lot dig and dig hard. Keep logs of what your child eats, sleeping patterns, when the breathing is worse and ask ask ask a lot of questions. My son is not delayed in speech in anyway and appears normal, People dont relize how sick my son is by looking at him and are suprised to hear it. Do the best you can and dont let it get the best of you because your child needs you and needs the strong nurturing only a mother can give.

[christan204]

my case is like some of all of your but my son was just dignosed at the age of 4 hes had a cronic cough for a long time i was alway told it just a common cold but recently i took him to childrens hospital and he had tracheamalicia and bronchomaliacia he has trouble eatting solids and is always thirsty,also suffers from a bad speech delay i was told that he probably had it since birth but hasnt grown out of it actually it has gotten worse so im like what do u do if it never gets better but the only answer i got was he wll grow out of it hmm i dont get but i worrie hope all our children get better its stress and wories but all we can do is give them extra hugs kisses and make the best of thing but i do hpe someday he growes out of it

[marisia3]

hi there i have a 2 month old daughter, diagnosed with moderate laringoamlacia . i'm scared to think that there could be other complications with her health. I have read about kids with this condition, could develop heart problems like vsd?????? what is that? or sider? even if the symptoms of the noise fades ,will this efect her speach? I just don't know enough about this problem. she coughs alot or the odd time chokes on the bottle, but the doctor says she may develop reflux.
parents with children of this condition, how do you cope,? or what do you do?

[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