Nate coughing - heart defect - bronchomalacia

for our doctors: a brief taping at the end of one of Nate's coughing episodes to prove it was actually bad.
Finally determined: this is considered a mild 'episodic croup' attack beginning. It is caused from the aorta compressing the right-main-bronchus.. Starts and mimics something that is mistaken as an asthma attack. However, physiologically, it is nothing like asthma and asthma medications do nothing to improve his condition.

Category:

Education

Tags:

• nate
• asthma
• child
• cough
• coughing
• sick
• pulmonary
• heart
• defect
• bronchomalacia
• pediatrics
• respiratory
• infection
• croup
• episodic
• pneumonia
• bronchitis
• sinusitis
• pediatric
• compressed
• bronchus
• lung
• right
• aortic
• arch
• tracheomalacia

[3in38months]

Oh I forgot to say our son has a heart defect too ~ it's called Innominate Artery Compression.

[dontbossme]

interesting.going to look that up.our bodies are all so different. speaks to the importance of the RIGHT DIAGNOSIS -not assuming asthma.

Our docs were confident they would see an improvement by 4-5 yrs old, as his bronchi grew larger and stronger. They were surprised to not see any change this last time. I can't find any 'case studies' to use as a guide, so I feel like we're flying blind...and although we have the *best* doctors, we're kinda alone in this and don't know what will happen to him.

[3in38months]

This video stopped me in my tracks -Nate is like my son when he gets sick. Our 11 yr old son has Tracheobronchomalacia. There is a great support group on yahoo for LMTM. STAY AWAY FROM XOPENEX IT HAS A MUSCLE RELAXER IN IT Instead try Atrovent ~our son is doing wonders on it.

[dontbossme]

I'm so sorry to hear about your son. He's 11? When was he diagnosed?

Like my story said, Nate was finally determined to have a heart defect at 1yr, after waging a relentless battle with all of our doctors to convince them it was more than asthma. At 3yrs, & a bigger, longer battle w/doctors, we had to go out of state, and they FINALLY diagnosed his pulmonary problem correctly! since we had a correct diagnosis, we could take him off the xophenex, pulmicort, orapred and stop the monthly head CTs!!

[dontbossme]

i can't believe how many meds & *steroids* we were giving his little body, to treat "asthma" & "reactive airway disease" which he never had

nate's diagnosis of a pulmonary compression from a heart defect was @~3yrs. We return for diagnostic scopes every 6 months to monitor the compression. its invasive and i hate him going through it, but i feel more confident making the day-to-day judgment calls about his activities/school and potential meds for acute symptoms.

[dontbossme]

*Our tremendous appreciation goes to Dr. Paul Boesch, Dr. Michael Rutter, Dr. Ajay Kaul, and Dr. Thomas DeWitt at Cincinnati Childrens Hospital

At this hospital, doctors from different specialties work in teams to evaluate and treat children. In our case:GI/ENT/PULM. They believe a child's health problem doesn't always affect just one part of the body. It often crosses multiple organs/functions. With departments working together,my child had the best chance.

They listened and they got it right

[pittapatta36]

hi hope nates doing ok now. ive just got back from the hospital were my son had a broncoscopy and was diagnosed with broncomalasia. he is only 4 month old and has had complex heart surgery when he was only 3 weeks old. doctor said his lung will get better with time. im sure my mrs will look on the facebook group....

[3in38months]

"Don't Boss Me" How is Nat doing? Have you checked out the support groups, fro Tracheobronchomalacia on Facebook? I am addicted to them -Hope all is well.

[ermoney14]

lol

[3in38months]

dontbossme, I hope Nat is feeling well. I've written to you before. I am Hunter's mom. Hunter is now 12 still having breathing issues. I just sent the link to your video to educate another mom about malacia. There are 2 really outstanding videos on youtube yours and "Andrew he's my son" I can't thank you enough for educating us all.

[3in38months]

I have so much to say and you can only say a little bit at a time here. Join me on face book at "Bronchomalacia & Tracheomalacia Support Group". I am Colleen

[3in38months]

God I wish I had only knew before. I highly recommend the support groups on yahoo and facebook. I can't tell you enough of how they help us.

[3in38months]

10 months -try 10 years! Sorry you still have a long hard road in front of you. I wish I could tell you otherwise. Pulmicort is great. But I think you will need it less if your daughter is on ATROVENT instead of Xopenex or Alburterol. Atrovent kicks the illness' right out -it is like a miracle drug. I wish I too had know about it. Our son was orginally dx with Tracheomalacia at 10 they changed it to Tracheobronchomalacia and changed his meds.

[3in38months]

Have you joined the support groups on yahoo or the 2 on Facebook? You should loads of information. yahoo groups then LMTM_Babies. on Facebook it is "We Hate Tracheobronchomalacia" and "Bronchomalacia & Tracheomalacia Support Group"

[wesmarvan]

Thanks so much...they finally started using Atrovent instead of Xopenex and it works so much better....she is in the hospital now for RSV for the second time in 30 days. She had her long stem tracheostenosis repair done using CORMATRIX...she was the first patient anywhere to have her repair done with this material.....so far so good with that...there is no scar tissue at all....the docs are writing medical journals about it. hope it helps somebodies child.

[wesmarvan]

Wow...I wish we would have known about Atrovent before....our daughter had long stem tracheostenosis and tetrology of fallot as well as laryngomalasia...boy has it been a rough 10 months thus far. My question is: what about pulmicort? They have her on it twice a day.