BPI families - lung information that may be important

[Joann in PA]

Francine, I was wondering what the course of action is now that you know about Maias lungs. This is of interest to me. Since Joey was a baby I have always known there was some inherent problem with his lungs. Took him to a ped. pulmonologist at a well known medical center east of of us and he told me maybe he has acid reflux...give him a tums before bed! Great medical advice there! The child was passing out during crying because he couldn't take that gasp of breath when he would cry for goodness sake! Anyway...the I took him to a ped. allergy spec, a ped. ENT, they couldnt find anything other than saying he had asthma brought on when he gets a cold so we treat him with the nebulizer when it crops up. The passing out stopped after he had the primary surgery at age 2. I personally think there was something happening with the phrenic nerve that was relieved when scar tissue was removed. Anyway, he seems fine now but I am wondering if it is something we should look into. Is Maia now on meds to help her breathing when the peak flow meter shows she is having trouble? I was also wondering what the name of the ped. pulmonologist you took her to is. I assume he's in Philadelphia. Perhaps Joey's secondary ins. would cover him going there. We have to go to the other facility with our prime ins. and I definately don't want to take him back there! Thanks! ~~Joann

[francine]

Hi Joann -

I've been thinking about this all weekend as you can imagine. Now that I know that Maia is a full time asthmatic things just take on a new light and I have to be "aware" on a daily basis...not just when she has a cold.

here's what she's on....


DAILY:
- Nasonex (nasal corticosteroids - 1X per day)
- Pulmocort 1X per day in a nebulizer treatment
OR Flovent in a space tube (same type of corticosteroid)
- Proventil in a nebulizer treatment

FOR SPECIFICS:
- Zyrtec syrup
- Claritin
- Elocon &/or Ellidel

we're doing this for a month and then goes back and does another pulmonary function test to see where we're at. We're looking at tree allergies and seasonal stuff as well- and we're going to do allergy testing next month.

I'm assuming that in time when she's a bit clearer we'll she'll be off the meds, doing a daily peak flow and treating with proventil as needed. And then treating with corticosteroids if there is a bad allergy season.

For now she is being treated heavily so that she can just get some good air into her and her lungs can open up. I'm not an advocate of long term corticosteroids so I have to research this much more. There's genetic issues with corticosteroids for us.

I am going to research "breathing exercises" and I am thinking that part of Maia's daily plan will be daily breathing exercises and relaxation techniques. I'm going to call my colleagues today and find a breathwork therapist that can work with a child and have a conversation. Strengthen the diaphragm just like we strengthen their shoulders and arms...makes sense to me. But for now we have to just open the lungs and get her breathing better.

And she's already seen our homeopath/accupuncturist and I believe that we can strengthen her lungs from this viewpoint as well. I had hayfever all my life and after 3 months of the right homeopathic remedy and some acupuncture, my hayfever was gone and has not returned. It's been 11 years now for no hayfever.
So I will be working on both ends with Maia.

The docs name is Dr. Robert Anolik, He has offices all over the place - so ask and maybe there is one closer to you?

Robert Anolik, MD FAAAAI
Stanley Forman, MD
Eva Jakabovics, MD
Mark Lepore, MD
Mark Posner, MD
William Spiegel, MD FAAAAI
Allergy & Asthma Specialists, PC
470 Sentry Parkway East #200
Blue Bell, PA 19422
Ph: (610)825-5800
Fax: (610)397-0980

http://www.asthmainamerica.com/newsreleases/nov98.htm

Also - I can tell you openly that my sister in law didn't like Dr. Bob (her baby is a severe asthmatic) and she found who she thinks is the "best" doc - so I'm giving you his name, too. Dr. Wodel - his office is in King of Prussia and Ardmore 610 642 1643

When and if you come in town let me know and we can meet if there's time.

good luck,
francine

[Kathyb]

Wow francine, i never connected conors breathing problems to be a possible part of this injury. I have had him tested for allergies and he was positive for dust and mold. We treat him with proventil via nebulizer as needed and claritan and flonase everyday.He has had a pulmonary funtion test and also a fluroscopy to check his diaphragm all which they said were normal but i never pushed about the bpi injuries affect i am going to look into this the next time we go thankss again for all they great info kathyb

[admin]

Francine,

This just looks like spider veins in her cheeks. Allison has very few spider veins in her checks but she has had them since birth. Her O2 level was ok in the hospital. I think she is fine but thanks for sharing this info. Now we can ALL be aware of this. how is little Maia doing? Ohhhh I have to brag... lol

Yesterday morning Allison was crying to get out of bed and when I went in her room there she was standing up in her crib. She use to just get up on her knees but now she is pulling herself up to standing. HURRAY for Allison.

Melissa


Melissa

[francine]

Just want to update you - Maia went to PT today and I informed them about the breathing issues and they are putting a plan together for when we get back from Texas. It'll include breathing exercises and specific exercises to get more lung capacity.


http://www.amazon.com/exec/obidos/tg/de ... ce&s=books

this is the book that I read years ago and have to find it in the archives somehow..... maybe I'll be able to find it in a library somewhere.... it was an excellent book - ALL about exercises for asthma...

[danar]

I was wondering, Sabrina seems to always get a really bad cough with a cold, like it goes to the lungs or throat area. Also, she seems to get croup really easy. Has anyone else seen this in there children?

[Ruth]

Francine,

I was wondering does Maia take a long time in recovery after sugery before she gets off the oxygen? Robby seemed to take an extra amount of time in recovery until his lungs could oxygenate his blood. I am going to watch him more closely. Good luck with Maia, your family will continue to be in our prayers.

Ruth

[Joann in PA]

Thanks for the additional info Francine! It sounds like Joey is on some of the same stuff as Maia so I feel a little more relieved now that even though his issues were probably not addressed for the right reasons they are none the less getting addressed. The breathing exercises for asthma sound like a good way to go too! Thanks again! love, Joann

[francine]

hi danar - my eldest was a croup child and spent many weeks throughout the years in the hospital for it. It was treated with a nebulizer treatment of pure epinephrine. Boy was that scary. They said it was viral but it always happened with Fall weather - cold and wet. Maia had croup once but we had the nebulizer system so the treatments helped. She also had whooping cough early on - and that is just the opposite "sound" of croup. Croup can really stay with you throughout adulthood (like asthma). And actually they are beginning to take note in adults that sometimes what they have diagnosed as asthma is not actually their lungs - but throat closing. I remember having croup as a child and I remember it being painful - my throat really hurt from it. My mom used to give me honey in a spoon to suck on. It made 'her' feel better. LOL