Nate coughing - heart defect - bronchomalacia

[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.

[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.

[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"

[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]

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]

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]

Hunter has had 1RSV, 6Pneumonias, 6Bronchitis' & 15Crups. I wonder if we hadn't used Xeopenex if he would have had so many URIs. Atrovent kicks out the illness' thus far. This has been a very good year for him. Did you get the H1N1 shot for your son? Flu shot? Please check out y a hoo for a great support group for Laryagomalacia, Tracheomalacia, BronchomalaciaTracheobronchoma­lacia. Google Ya hoo Groups then put in LMTM_Babies. Plus there is a new support group on Face book.

[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!!

[3in38months]

I am also Huntersmom38 I forgot the password so I created a new id. Hunter is 11 -he was dx as a baby via bronchoscope w/Tracheomalacia. But when he had his tonsils/adnoids removed at 10 they did a sedated bronchoscope. Finally realized he had Trachebronchomalacia w/Innominate Artery Compression. They told us he would have to have heart/lung surgery to repair it. They discribed the 4 different types. But then the MRI showed the compression was only 10-15% so they decided to leave it alone.

[3in38months]

I am trying to post it will not let me. Visit me at the y a hoo support group called LMTM Babies or Face book -Bronchomalacia

[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.

[wesmarvan]

My daughter was recently diagnosed with the same thing...we are in the PICU in Tulsa, Oklahoma. She is intubated right now. I am just glad to actually know now what is happening. We were on Xopenez and pulmicort at home too...you're right they don't help.

[3in38months]

@wesmarvan I wanted to make sure you saw my posting on Nate's site. Our son has Tracheobronchomalacia with Innominate Artery Compression. Try Atrovent instead of Xopenex or Albuterol. We too used Xopenex for yrs. With yrs of URI's. But they switched our son to Atrovent and it's amazing. Atrovent is used for ederly patients with COPD it works wonders. Check out support grou on yahoo for LMTM.

[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.

[Monicasdestiny]

Ohhh gosh poor little guy. Listening to that ust brings tears to your eyes.

[Huntersmom38]

dontbossme The Pulomary Specialist switched my son from Albuterol to Xopenex and Pulmicort which did not help much either. But recenlty he is on Atrovent and Flovent. It's wonderful.

[snoopyandsnowy]

poor guy that is a big cough for a little person tell me what the doctors say because i am a doctor to and i have a patient that might have something similar to that and we can not figure out what it is (is his voice normal?) when he is coughing like that?

[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

[dontbossme]

11 Doctors MISDIOGNOSED everything, misread diagnostic tests,denied the impact on is body.

He endured

3 cardio-thoracic angiograms,

intubated 8x,

dzn bronchoscopies,

untold biopsies,

heart surgery,

then emergency lung surgery...after the fact they said he'd had approx 12-18hrs to live. The surgeon came out and asked what made me keep pushing after 4 docs said he was okay.

My answer? I just knew. Listen to your own voice.

Fight for your child. You're the only advocate they have.

[dontbossme]

So far this year[2009], he hasn't been sick. Diagnostics again at Cincinnati Children's Hospital later this year, will help see if the compression on his Right Main Bronchus has improved as he grows.

Thank you for asking about him

[dontbossme]

After steering clear of antibiotics,b/c of overuse in the medical community, we relented and 3 courses of antibiotics in the fall/winter of 2008 cleared 3 different infections that had lasted more than a month each.

For now, all we can do is 'sit him out' from activities, esp when its cold. His preschool teachers know to stop him from playing with the other kids...to do something quiet and have sips of cold water.

Last few months, he hasn't been sick.

Knock on wood.

Thanks for asking :)

[dontbossme]

His heart defect causes the bronchomalacia and meds help treat symptoms that sometimes cause him to go down the dark path that begin these. n the best cases. -the meds stop nasal drainage, cough meds reduce or subdue coughs that triggers it. At one point we discussed the use of Lidocaine, that would numb his throat (and everything else on the way down) to stop the body's coughing trigger. Obviously that is extreme and have avoided that.

[dontbossme]

He was sick on/off through 2008. When he is sick, it lasts 4-8 weeks and develops into significant respiratory infections. Drs dismissed it because he 'didn't have a fever' but head/sinus CTs showed extreme sinus infections developing. The worst they'd seen.

At the end of 2008, his coughing episodes were so severe we realized he was learning how to stop his breathing to try to make them stop.

Albuterol, Xopenex, Pulmicort and other inhaled steroids and anti-inflammatories don't help him.

[Nantytam]

Poor little guy!! Will albuterol help him?

He must be miserable. How is he now?

[lookyouabigailkriby]

he wot you son call