violetmarie-2004

iVillage Member
Registered: 04-16-2004
violetmarie-2004
3
Sat, 05-01-2004 - 9:19pm
My son has Bronchomalacia. He was diagnosed at 3 months after having had a lobectomy (part of his right lung removed) due to a congenital condition. They diagnosed it with a bronchoscopy. First they treated him for reflux, then they did a barium swallow and saw that he was having some swallowing problems and reflux, we treated those things and saw no improvement in symptoms so finally a bronchoscopy was done and the found out about the bronchomalacia. My son sees a pediatric pulmonologist at a children's hospital. I would recommend that to you. Talk to your ped and if they are not willing to help you you need to find someone who will. Someone who will work with you until you find the problem. You as a mom know your baby and know something isn't right I know it is exhausting but you have to keep pushing those doctors. I am so thankful that my ped is so wonderful at pushing for answers. It was work for me too but she was great. So I wish you luck and will pray for your answers and strength. Where are you located? I know of some great places for babies with breathing problems. I will find the names of the places and see if you are near any. Feel free to e-mail me randynrebecca@comcast.net
iVillage Member
Registered: 02-11-2004
In reply to: rebaryry
Mon, 05-03-2004 - 7:38am
My daughter has gotten better. Im not sure if it was the reflux or a formula switch, but she is not doing that stridor noice anylonger. She even got a cold and it did not come back. So I have switched her formula and she dosnt spit up anymore! So I stopped the zantac because I just hate to give unneccesary med/ and she is still doing great. Her hands and feet have stopped turning blue, and she is doing everything on target. I dont know how a baby can have such severe symptoms, and just get better like that but she did. So I thank every single prayer that was said for our little princess, and I just hope that when she goes back we will be dismissed. I just didnt agree with the doctors at the time,"my baby had very scary symptoms," but I guess as hard as it is for me to say it, "mabey they were right. I have a problem trusting doctors. My sister lost her baby boy due to trusting a dr. that didnt know much. But I have to get past this, and remember its not in our hands. So, as long as she is doing this great, I guess Im trusting the dr. Did your son have a stridor?? Thanks for all the advise, and I'll keep it all in mind if any symptoms reappear. Thanks again!

Violet

iVillage Member
Registered: 04-16-2004
In reply to: rebaryry
Mon, 05-03-2004 - 12:25pm
I am so happy for you. It is great to see things like that (children getting better)!!

My son sometimes has stridor but mostly with a severe cold. He constantly wheezes and retracts(pulls in around his ribs) looks like he's working hard to breathe. He too however is doing better as he gets older.

Rebecca

iVillage Member
Registered: 02-11-2004
In reply to: rebaryry
Wed, 05-05-2004 - 3:27pm
What did they do for your sons brochiomalacia? I was told that because she only had a stridor with a cold that that was a good sign that it was not anything major. So she has had a cold with no stridor now, but not a real bad cold. So that has got me wondering. Just as I told you she has not had a blue episode today she had one. I had to say it. I dressed her in summer clothes, it is warm here today, but she got chilled, and her legs and arms, hands and feet turned. Now Im not talken about the blueish redish spidorey look, but an alarming look. Did your son do that? Alot of people think Im talken about htat look some babies get, Mostly fair skinned babies, but this is different. She goes for a check up on Friday, and I'll bring this up again. It is so hard, because this is not something that many people have went through, so its hard to find someone to get ideas from who has been here. So Im glad to be able to ask you some questions. I am feeling like she has a lot of little things, that arnt real common, and not so serious, but stumping all of us. I say that I dont think they are serious because she wouldnt be doing as well as she is. 22 lbs at 9 months, and so active, alert, and just the happiest baby you' dever see. Well I guess I'll see what they say about the blue episode coming back today, but she was chilled. Thanks for the advise/

Violet