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Holy crap, that's a lot of meds *Update 9/1


Forum: Children With Asthma

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  #1  
August 24th, 2011, 05:38 PM
~LaurenNoel~'s Avatar Platinum Supermommy
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I've posted in the GERD (reflux) forum. The docs are not completely sure what is going on with Ruby. She is 6 mths old, and she wheezes, coughs, and usually snorts like a little piglet. The GI reflux specialist has her on Zantac 3 times/day and Budesonide 2 times/day in the nebulizer. The pulmonologist said he thinks she is refluxing, and the acid is dumping into her lungs. He added on Bethanechol (prevents refluxing) 4 times/day, Singulair at night, and Albuterol 2 times/day in the nebulizer. I spend all day long giving her meds. She still sounds terrible. She has had an upper GI, but is now going to have a Rehab Swallow study, which will show if some of her formula is dripping into her lungs as she eats. At 6 months, she will only eat 3-4 ounces at a time, and it is a fight. She starts sounding really congested as she eats.

I have no idea what is wrong with her, but it is really stressing me out. I barely sleep because I am afraid she could choke and die. Since she is on some meds that are related to asthma, I thought someone else might have been through something similar....
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///...........................Lauren, wife to Jay, mom to Wesley and Ruby

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Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11

Last edited by ~LaurenNoel~; September 1st, 2011 at 08:19 AM.
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  #2  
August 25th, 2011, 01:30 PM
momto3brazils's Avatar Mega Super Mommy
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wow that is alot of meds, Im new to all of this but my heart goes out to you I know you are worried about your little girl. I hope they get it figured out soon so you can have some peace of mind.
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  #3  
August 25th, 2011, 02:15 PM
JessP's Avatar Lovin life and family
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That is a lot of meds. Poor little thing. Sorry we haven't been through all of those symptoms. DS did have acid reflux but he wasn't diagnosed with asthma until the age of three and the reflux was as an infant. One thing we did do for him to help him was put him to bed on his belly. I know all the books say not to. However it helped with gas build up and he wasn't in as much pain. We talked to his dr and even got a note for daycare. We had reflux meds he took along with the belly sleeping. It made a big difference for us.

Welcome to the board. Please feel free to post any questions or concerns you might have. I hope she starts feeling better soon and they can get everything under control.
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  #4  
August 25th, 2011, 04:30 PM
~LaurenNoel~'s Avatar Platinum Supermommy
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Thanks momto3brazils. Jess, congrats on your rainbow baby on the way! Ruby was our Rainbow baby. I lay her on her belly, but she turns on her side. She sleeps that way, with her mouth wide open. She drools everywhere. She was also put on a steriod today that she has to take for 4 days.
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///...........................Lauren, wife to Jay, mom to Wesley and Ruby

...............................

................ ...

Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11
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  #5  
August 25th, 2011, 09:36 PM
momto3brazils's Avatar Mega Super Mommy
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They put her on prednisone?
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  #6  
August 25th, 2011, 11:07 PM
Adriana's Mommy's Avatar I <3 my kids
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I'm sorry your going through all of this.. My advice to you is to get an allergy test done, I'd request a blood draw. You never know, she may be allergic to something she's eating or breathing in..

My son has had asthma problems since he was 12 weeks old and was on ALOT of meds (topical steroids, asthma/allergy meds, and antibotics). He never had reflux problems.. Only time he would spit up was during an asthma flare up. He would also loose interest in eating.. Babies won't drink if they can't breath..

I wanted to add: You may have to insist on getting a allergy test done.. I had to do this with my son.
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Last edited by Adriana's Mommy; August 25th, 2011 at 11:25 PM.
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  #7  
August 26th, 2011, 07:40 AM
momto3brazils's Avatar Mega Super Mommy
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so true on the not drinking Bella will throw her sippy cup wants nothing to do with food or drink.
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  #8  
August 26th, 2011, 09:34 PM
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We are familiar with this...not all from experience but lots of testing to see if this was the issue. Danny would have projectile vomitting 12-15 times per day and had chronic wheezing, upper and lower respiratory infections, frequent ER trips, etc due to the respiratory side. He had a few tests done to make sure he was not refluxing into his lungs and after they confirmed that it was a long road of allergy testing. Allergies were a lot of our answer..including to the infant "reflux" as an egg allergy. He does have reflux now and his asthma has been horrible. He goes to the GI Tuesday and I will ask her about a possible connection again but I think he should be too old for that...but we will see. Right now Danny is getting the same slew you guys are. He is on Advair, Flonase, Singulair, Xopenex, Prednisone, and Augmentin...those are just his resp meds...not any of the GI ones... We were doing Pulmicort too but when we started the prednisone it was too much steroid. You can have 2 out of these three...Advair, Pulmicort, Prednisone...but not all three. Different combo's work for different people. I really hope they get everything figured out for your LO... I hated the not knowing stage.

For the night issues.... I set Danny up in a bassinet or pack n' play right beside my bed so that if he had any weird noises like gagging or choking type sounds I woke up. He was a respiratory wreck for almost 2 years...then he straightened out a bit...now he is really bad again... Anyway... the night time thing I can 100% relate to. You need your sleep to be there for your LO...if you are open to it cosleeping/bedsharing is something we also had to do for a while. If Danny's breathing was really bad he slept between my x-Dh and I so that one of us was no doubt going to hear something that could be off...
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  #9  
August 27th, 2011, 06:22 PM
~LaurenNoel~'s Avatar Platinum Supermommy
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Yes, it is Prednisone.

The Singulair right before bed and the steroid seem to be helping quite a bit. She has been eating more, but I think steroids usually cause increase appetite. She had been losing weight, so maybe she can gain some back.

She was sleeping in the bed, but she prefers her crib. I want to sleep with her crib right next to me, I think we will move it tomorrow from her room to ours. She can't be in a bassinet since she is very mobile for being so young. I need some sleep. I'm running after a 25 month-old too. I am just burned-out from all of this. My son had severe reflux and food allergies that caused him to poop blood. That was scary, but breathing issues are just sooo much worse. I am a wreck.

Thanks everyone!
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///...........................Lauren, wife to Jay, mom to Wesley and Ruby

...............................

................ ...

Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11

Last edited by ~LaurenNoel~; August 27th, 2011 at 06:26 PM.
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  #10  
August 28th, 2011, 09:20 AM
Adriana's Mommy's Avatar I <3 my kids
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Hang in there..

I do believe one of the side effects of prednisone is weight gain.. Which is nice when they are loosing weight.. My son slowly dropped from the 75th to the 7th percentile. I hate giving him steroids in fear it's affecting his growth. He's a tiny guy now (height wise too, 3rd percentile).. And I can relate to a older sibling. My daughter and son are 24 months apart.. I remember the sleepless nights and then going to work for 10 hours.. I don't know how I did it.. I'm just thankful for FMLA!
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Last edited by Adriana's Mommy; August 28th, 2011 at 09:24 AM.
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  #11  
August 28th, 2011, 10:46 PM
JessP's Avatar Lovin life and family
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Lauren how is she doing?
My first two are 22 months apart it's rough. Jeremy first started showing signs at 6 months that he had asthma and we had to do the nebulizer. Thats hard on a 6 month old . Hopefully you guys are going to get some allergy testing done soon. Thanks for the congrats on the rainbow baby .
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  #12  
August 29th, 2011, 04:19 AM
~LaurenNoel~'s Avatar Platinum Supermommy
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I'm not sure if/when they are doing allergy testing. The pulmonologist said she was too young to test her for anything yet. I'll ask the GI doc about it too.

She is not wheezing, but still coughing quite a bit. The steroids were only for 4 days. She's done with them now, and stopped eating as much. I expected her to be small, if she is anything like Wesley. He's only 23 lbs and 31" at 2 years old. He's like 3%. We'll see.

Thanks for all the support ladies.
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///...........................Lauren, wife to Jay, mom to Wesley and Ruby

...............................

................ ...

Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11
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  #13  
August 30th, 2011, 10:12 PM
Adriana's Mommy's Avatar I <3 my kids
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You can test early but you have to insist on getting one.. I went to the allergist/asthma doctor without a referral, luckily my insurance allowed it. For some reason doctors don't like to do allergy tests so young.. Trust your mommy instincts..
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Last edited by Adriana's Mommy; August 31st, 2011 at 04:40 AM.
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  #14  
September 1st, 2011, 08:19 AM
~LaurenNoel~'s Avatar Platinum Supermommy
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He doesn't want to do allergy testing until she is 6 mths old, but he unofficially diagnosed her with asthma. She got an inhaler of Flovent so that she will only have to do the Albuterol through nebulizer. She will stay on the Reglan, Zantac, and Sungulair.
__________________
///...........................Lauren, wife to Jay, mom to Wesley and Ruby

...............................

................ ...

Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11
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  #15  
September 1st, 2011, 11:07 AM
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Testing for specific allergies isn't that hard but broad testing to try and determine triggers is frequently counterproductive due to the number of false negatives and false positives you get...the younger the child, the more falses you get. By age 3 they are more reliable but still not all that great. You can test for specifics like any pets you have, dust, mold, etc but unless you have a trigger food or enviro thing in mind testing is likely not going to be helpful right now. Testing at home would be better... Don't vaccum around her, keep pets away from her and in a certain area of the house, don't dust around her, etc. If those things help you can figure things out in a reliable, pain free way... Sometimes you have to test and sometimes it does help but even if you find out she is highly allergic to mold and dust...you can't 100% eliminate them. If she is allergic to a pet it will take a few years for the dander to be completely gone unless you buy new carpet and have your air ducts cleaned... I hope this makes sense...
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  #16  
September 1st, 2011, 11:57 PM
JessP's Avatar Lovin life and family
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Well glad that you have an unofficial diagnosis. I hope that helps and she starts feeling better. Hopefully you guys won't have to do neb treatments alot.
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  #17  
September 2nd, 2011, 05:13 AM
Adriana's Mommy's Avatar I <3 my kids
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I hope the Flovent works on your daughter.. My son had a complete turn around when we went from Plumicort to Flovent...

Quote:
Originally Posted by i3ai3ydanny View Post
Testing for specific allergies isn't that hard but broad testing to try and determine triggers is frequently counterproductive due to the number of false negatives and false positives you get...the younger the child, the more falses you get. By age 3 they are more reliable but still not all that great.
Interesting.. I don't know what I would have done if I would have waited until A.J was older if I didn't test for allergies. I think the worst part was the eczema.. That was a nightmare. But we found out what was causing it and he's been fine since..
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  #18  
September 5th, 2011, 02:46 PM
~LaurenNoel~'s Avatar Platinum Supermommy
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Thanks ladies. We live in an older home (rent) and although I clean a lot, I'm concerned with mold being somewhere, and I know there is a lot of dust and animal hair in the air. The landlord had many pets while he lived here. We already replaced some carpet, but we have a dog too. She loves tp lay next to Ruby, and Ruby never sneezes or coughs.
__________________
///...........................Lauren, wife to Jay, mom to Wesley and Ruby

...............................

................ ...

Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11
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