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TRACHEAL MALAYSIA?
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TRACHEAL MALAYSIA?

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.
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Per the NLM: "Congenital tracheomalacia generally resolves on its own by the age of 18-24 months. As the tracheal cartilage strengthens and the trachea grows, the noisy respirations and breathing difficulties gradually stop."

Consider "... heart defects, developmental delay, or gastroesophageal reflux" since these can be present in children with this problem.

Ask you pediatrician about it if it lasts past 2 years of age

Enoch Choi, MD
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My son is only 6 weeks old and was diagnosed with the same thing. No worries. I only hope it disappears like you say...stay strong, if its improved almost completely theres a good chance that in time it will be gone!
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My daughter was 3 months old when she was diagnosed with tracheal malaysia. You should consider yourself lucky if you haven't had any trouble from it. She is 6 months old now and has been hospitalized 6 times. The past 6 months has been filled with sleepless nights of worry and fear. She also was diagnosed with laringo malaysia, which is where her airways are also floppy. She has had a chronic cough since she was born, has had episodes of turning blue, and aspiration during feedings. The doctors have also told me she would grow out of it. At this point i am just looking for the light at the end of the tunnel
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My  15 month old son was diagnosed with both tracheal and laringo malaysia at 6 weeks. We have been dealing with a horrible cough and runny nose for two months now. He is on his 4th batch of antibiotics. My mother works at a hospital and the Pedi there told her that I should expect this until he is 5/6. That kids with this have trouble coughing and sneezing effectively so they have a hard time getting rid of infections. He has never turned blue completely but his lips and tongue are often blue. It is fustrating because I don't know if I should be relieved by what the dr said or worried.
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my 2 month old son was just diagnosed with tracheal malaysia and i was also told he would grow out of it, but not only does he have the squeaking sound but at times it seems as though he struggles to breathe
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as someone else posted associated heart conditions with tracheal malaysia, I would be concerned about a heart condition if you have noticed blue lips. I am a nurse practitioner and this resembles a heart condition.
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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)
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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.
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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)
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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
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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)
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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
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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?
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my case is like some of all of your but my son was just dignosed at the age of 4 hes had a cronic (chronic) 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
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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.
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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
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The malaysia children is very cute and tracheal in one or more information in the many apps.Thetamil languageis one of the popular language.TheTamil lettersusing the read,written and speak  is easy to language.more using the many places in tamil.
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The malaysia children is very cute and tracheal in one or more information in the many apps.Thetamil languageis one of the popular language.TheTamil lettersusing the read,written and speak  is easy to language.more using the many places in tamil.
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my son is 7yrs old and they didnt find out he had this til he was 2 and he still hasnt outgrown it. he also suffers frm asthma. he looks like a normal kid(hes a big boy) bt is really loud when he breathes and coughs a lot. ppl look at me and him like hes sick and just ignorant for not coverin his mouth bt he does it when he cant catch his breath. i wish there was more help and a support group for parents of kids wit this near me.
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My 18 year old daughter has Tracheal malaysia...as a symptom of her genetic disorder. She also gets that awful seal bark, wheezing, air way obstruction, pneumonia and frequent respiratory infections.
We usually have a protocol when this starts happening..we give her a narcotic- vikodin or a coedine to relax her vocal cords and trachea.. we also have to put her on predisone- and sometimes antibiotics to prevent her getting pneumonia..we also put her on Flovent and singulair when she was little.(from lung specialist) usually this works great for her and she soon gets better.
However this past month she's been real sick and obstructive airways- and medicine isn't working- so lung specialist said it is time for her to be evaluated for her airways and a procedure to fix it. appointment is next week.
Things that cause a trigger for the swelling- spasming- obstruction, and coughing for my daughter is..exercise, laughing, perfume, cats, household cleaners, hot sunny days, colds and illnesses, and emotional distress.
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I wonder if anyone has had any proximity with someone suffering from tracheal stenosis particulary in the more elderly age group [not child or paediatrics but adult ].

The reason I post this is because I would like to track patients who sustained tracheal stenosis due to an earlier surgery or ICU experience wherein a Kendall curity endotracheal tube was used. This particular tube was reported to have been highly suspect of requiring excessive pressures to seal within the trachea and many were sold to hospitals . Unfortunetely the defective product cannot be easily tracked unless patients or their families come forward and discuss or disclose their problem.

I am willing to help piece the information together if anybody wants me to .
John
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I understand completely. My son is 8 he is a big boy and to look at him he is totally normal, but he has severve GERD Tracheal Malacia and asthma. I have tried to make his principal teachers and even his school nurse understand his cough is chronic. There is nothing that we can do about it no matter how often I have to come get him from school because his cough. He is not faking and he can not control it. It hurts me to see him go through this and all I get is he will grow out of it, I am beginning to believe that I am mising something.  Good Luck.
Jessica, Aaron's Mom
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My son is almost four months I alsp took himtp tje clinic because I thought he may have croup or rsv. I was told to take him to his pediatrician. when I told his dr.he has been sounding raspy and cauhing and almost like a grunting noise she was calling it laringo malaysia but told me he needs a refferial to the ent which is like 3,-4 hours from our home.  he was two months at the time still no appointment yet.  I was also told he will grow out of it. He is getting worse thank god he has no problem eating. But he is deffenately striggeling. Most times I have to remove him from excitement he get really raspy and caughs so much. Poor lil man cant even play for tpo long.  I put him to sleep in am upright position amd on his belly. It hels so much.
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MY son was diagnosed with brinchial malasia. He the same barky cough and shortness of breathe. He has croup every winter and when he needs surgery it is very hard to intubate and extubate he gets stridor. Sometimes I think he is struggling to get air in. He is on flovent twice a day that has helped a lot. When he is in distress and we give him albuterol he gets worse that's when I know we need to go to the ER for racemic epi aerosols. That is what finally does the trick. I am praising God that this winter we had no emergency room visits.
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These posts are a few years old, but the only ones I have come across in my desperate search for parents going through or having gone through the same situation. My baby girl has been diagnosed with laryngomalacia, at only 1 day old, thanks to an amazing nurse who caught one of her "blue spells" while weighing her in the nursery. during flexible bronchoscopy they also found that her right vocal cord had paresis. she initially had a very weak cry and airy voice. She now has a very strong, loud cry and her ENT says her vocal cord is much improved as is her laryngomalacia, but she continues to aspirate. She spent a week in the NICU and was eventually placed on continuous oxygen as a means to keep her airway open. She did suffer from stridor with nursing and occasionally at rest, which has improved significantly. She started out nursing, but was coughing at least once with each session. On the day we were supposed to discharge from NICU they performed a swallow study and found out she was silently aspirating, but was able to handle nectar thick fluids so we were able to take her home on oxygen. She is now 6 weeks old and seldom has stridor, has had no "blue episodes", but continues to struggle even with thickened breast milk. My question is if her vocal cord and laryngomalacia is improving why does she continue to struggle with feedings? They told us she would outgrow it and they did not think she needed surgery, Have you had any experience with this?
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Hello mamabre10,
Seems other moms are quite so thought I'd comment.  Depending on the severeity of the laryngomalacia it may take a while to see improvement.  It's generally outgrown by 18 months.  
My son, now a big strapping 24 yr old, had severe laryngomalacia, stidor, gastic reflux, sleep apnea and aspirated, and was diagnosed with asthma after turning two. It was not an easy start with many hospital stays, but he did outgrow the malacia between 18 months - two yrs.  
Keeping these children upright as much as possible helps - my son was carried in a kangaroo type carrier as much as possilbe, and I slept upright against big pillows with him sleeping on my chest for at least the first 6 months.
These children generally have complications with colds and illnesses especially as young babies when they cannot effectively expel phlegm and mucous from thier lungs by coughing.  So infections often result in hospitalization where they get the necessary physiotherapy to clear their lungs.  
My suggestion for feeding issues is to try any and every teat available  including those for cleft palate babies. My son did best on one of the cheaper varieties and I made sure I always had extra's on hand.  
My advice would be to avoid surgery if at all possible, however it is sometimes necessary and the new 'shunt' that keeps the airway open seems like a blessing - was'nt available 24 yrs ago - even breathing monitors were almost unheard of and way unafforable!
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Ask to see Pulmonary and have a sleep study done.  Helped my little girl.  She was diagnosed with sleep apnea due to her tracheal Malaysia and was put on a c-pap.  She grew 2 inches and added 8 lbs in 6 weeks.
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My son was just born with tracheomalacia at a 11days old. I noticed his wheezing and congested sounds whenever he eats or sleeps. The doctor told me he most likely had this and it should heal itself. I am concerned though. Has anyone else's children just be sleeping and gag like they are going to throw up? He seems to do okay when he sleeps on his side or if I have him laying on my chest but being this is my first child I am overly worrisome about it.
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My son was diagnosed with tracheal malaysia and laryngo Malacia at four months. He had severe strider that when we were around people i had to reassure them that he was fine and that this breathing was normal for him. i NG tube feed him at 3 months even thou he wasnt loosing he wait he was only gaining small amounts. Took me ages to feed him. and like every 1 else i have read about we to were in out of hospital for infections due to him asperating all the time.we saw ENT at about four months, had surgery a week later for the laryngo malacia. Hes going on 7months now and he has a peg in to feed him. and is awaiting for a micky button to be put in.  Althou it was a very stressful time for us we had good support from our home care nusres who was our voice when nobody was listerning. what made life a little easier for me was not oral feeding him. coz he didnt asperate any more and hospital stays were no longer for infections. even thou its still early days. and a good support network is important. and i found timeout for myself worked wonders aswell. my time out was going to work for 2 days. doing the night duty at the hospital
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