BPI families - lung information that may be important
BPI families - lung information that may be important
I noticed something on Maia that started happening to her face -her capillaries were becoming pronounced on her cheeks. In my oriental medical training in shiatsu school - we were taught that this means that the body is not getting enough air. So I made an appointment with her sister's ped. pulmonary specialist and low and behold - Maia's lungs were only working at 40%. She does not cough. She does not wheeze - so the cheeks would have been the only way to tell. Her pediatricians never even thought twice about this. It's C4 and her diaphragm that seem to be in the forefront.
I always thought that Maia had asthma only when she was sick with some upper respiratory stuff and now I am finding out that when I actually "hear" coughing or wheezing - that for her it is way beyond and is at an emergency level and we need to be on hospital alert.
So I guess I wanted to inform you about this to let you know that you should be talking to your pediatrician about this. The 'breathing' test is very non-invasive. This doctor had it all computerized and Maia had to breathe to fly a kite and had to breathe to break down a brick wall, etc. It was an eye opener. It's basically just breathing for one long outbreath into a tube and the air inside is being measured.
He said that this brings Maia's risks for surgery way up there and that she needs to be under treatment for a while and monitored before she should be anesthetized for anything.
He also said that the breathing issues are causing a good portion of the skin issues...it's all compounded. I never knew this.
What a mind blower! And I thought I already WAS an experienced asthma mom. This is all new to me.
-francine
I always thought that Maia had asthma only when she was sick with some upper respiratory stuff and now I am finding out that when I actually "hear" coughing or wheezing - that for her it is way beyond and is at an emergency level and we need to be on hospital alert.
So I guess I wanted to inform you about this to let you know that you should be talking to your pediatrician about this. The 'breathing' test is very non-invasive. This doctor had it all computerized and Maia had to breathe to fly a kite and had to breathe to break down a brick wall, etc. It was an eye opener. It's basically just breathing for one long outbreath into a tube and the air inside is being measured.
He said that this brings Maia's risks for surgery way up there and that she needs to be under treatment for a while and monitored before she should be anesthetized for anything.
He also said that the breathing issues are causing a good portion of the skin issues...it's all compounded. I never knew this.
What a mind blower! And I thought I already WAS an experienced asthma mom. This is all new to me.
-francine
Re: BPI families - lung information that may be important
Hi Francine.
Sorry to hear about this setback for Maia. My thoughts and prayers are with you both.
I think perhaps I should get Sarah checked for this. She's always wheezing but I thought it was just from allergies. At least that's what the pediatrician said.
Hope you're both doing well.
Cherie
Sorry to hear about this setback for Maia. My thoughts and prayers are with you both.
I think perhaps I should get Sarah checked for this. She's always wheezing but I thought it was just from allergies. At least that's what the pediatrician said.
Hope you're both doing well.
Cherie
Re: BPI families - lung information that may be important
Francine, what do you mean by the capillaries being pronounced. Michaelas cheeks get reddened sometimes for no reason at all and it has worried me but the doctors don't seem to think it is anything. We were never told if there was any c_4 damage but Michaela has complained she doesn't like to run in PE because " I don't have my energy", and I can't breathe which I've found unusual for most any child. I 've had questions and asked them but they're being dismissed. Now you've really got me thinking!
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Karen Hillyer
- Posts: 562
- Joined: Fri Sep 06, 2002 1:36 pm
Re: BPI families - lung information that may be important
Parents of children with more severe injuries do need to guard against this type of problem, Gavin was hospitilised for treatment a couple of summers ago and it was a sheer fluke that we even took him to the hospital.
He was complaining that he couldn't take a deep breath and I though it was because he was just " acting up"
his ONLY symptom was a croaky voice - no wheezing, no asthma nothing.
We don't have an out of hour Doctors surgery in my city, so my husband took him to the ER and I fully expected him home in about an hour, as I was convinced there was nothing wrong, at the worst I thought he may need antibiotics for a sore throat.
Well, his SATs were VERY low and he required hospital treatment on a nebuliser and oxygen therapy. he was discharged on steroids to open his airways.
I was TERRIFIED - he had had NO real symptoms and I nearly ignored him.
Today he is the same - a sore throat and difficulty speaking, so we are off to the hospital again, to make sure his inhaler is working.
Keep a watchful eye on your little ones, and above all LISTEN to them if they can talk to you to tell you whats wrong - don't leave it too late, far better to be treated like an over anxious Mother by the Doctor or Hospital, than to risk your childs health.
Good topic Francine - thanks for reminding me
Karen
He was complaining that he couldn't take a deep breath and I though it was because he was just " acting up"
his ONLY symptom was a croaky voice - no wheezing, no asthma nothing.
We don't have an out of hour Doctors surgery in my city, so my husband took him to the ER and I fully expected him home in about an hour, as I was convinced there was nothing wrong, at the worst I thought he may need antibiotics for a sore throat.
Well, his SATs were VERY low and he required hospital treatment on a nebuliser and oxygen therapy. he was discharged on steroids to open his airways.
I was TERRIFIED - he had had NO real symptoms and I nearly ignored him.
Today he is the same - a sore throat and difficulty speaking, so we are off to the hospital again, to make sure his inhaler is working.
Keep a watchful eye on your little ones, and above all LISTEN to them if they can talk to you to tell you whats wrong - don't leave it too late, far better to be treated like an over anxious Mother by the Doctor or Hospital, than to risk your childs health.
Good topic Francine - thanks for reminding me
Karen
Re: BPI families - lung information that may be important
Well my advice to all of you is to find a PEDIATRIC PULMONARY SPECIALIST. Go for the gold. Get the expert. Don't have your pediatrician treat this because they just won't know enough.
Re: BPI families - lung information that may be important
Cheri - I don't view it as a setback - I view it as a miracle that I found out in time before something major was to happen - possibly in a surgery! THANK GOD I had sense enough to get her to this specialist. He's the guy that saved my eldest's life when she was 18 months old and no one could figure out what was wrong and she was experiencing croup AND asthma at the same time. She was in the hospital for 1 1/2 weeks before anybody realized that this was very serious - as he was touted as THE lung doc in PA. I'm so grateful he's still around. (and now he is so modernized - 6 major offices - computers everywhere - machinery so new - like computer disneyworld there!)
Re: BPI families - lung information that may be important
LeeAnne - it looks like tiny spider veins all over her cheeks.
Re: BPI families - lung information that may be important
karen - I hope Gavin is doing ok. Please let us know ok?
-francine
-francine
Re: BPI families - lung information that may be important
I never knew those veins were due to air issues- my son has major asthma and the epdiatrian just uses his inhalers also kaitlyn has a few but they have never heard any lung issues- I will ahve this checked - thanks!
Re: BPI families - lung information that may be important
Francine,
I hope everything goes okay with Maia. I'm glad you caught this before her surgery. I have a question for you also. You can see several of Zoe's veins on her cheeks, is this what you are talking about?? Also, when she eats and when she gets upset she gets red blotchy things all over her face and head. Is this a symtom also?? Thanks for bringing this up. I have asked others about this and was told it was normal but hadn't seen other babies like this.
Kimberly
I hope everything goes okay with Maia. I'm glad you caught this before her surgery. I have a question for you also. You can see several of Zoe's veins on her cheeks, is this what you are talking about?? Also, when she eats and when she gets upset she gets red blotchy things all over her face and head. Is this a symtom also?? Thanks for bringing this up. I have asked others about this and was told it was normal but hadn't seen other babies like this.
Kimberly
