Posted By Posting
Dec 01, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
need advice
Okay, I know that some of you read the post about Adriane's appointment. Here is the pertinent information you will need from it for my questions. They upped her zantac dosage. We weren't able to use prevacid solutabs because it seemed to upset her tummy worse.

She is refluxing bad lately. She is always holding her breathe or gasping, choking, coughing, spitting up. She is 18 months old and I thought the spitting up would get better by now. She was lying in bed last night, once I finally got her to sleep after a dose of tylenol and maalox, I heard her gasping and wheezing all night. Do you think she is aspirating? She has not really done that before but she would always stop breathing several times a night to keep from aspirating. I know that she still has apnea but could this be part of the wheezing. She doesn't have a cold and her throat was affected by the viral infection last week but that was it, from what we could tell. What other meds can we try and what about dosage? She is just miserable and so am I.

Dec 01, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
:( Is she getting worse reflux wise? Have you introduced any new foods or anything that would aggravate her? Mine would have a wet sounding cough when she aspirated and a dry hacking one with asthma issues. Of course, all kids are different.

There are other meds out there besides Zantac or Prevacid. Do you have a rescue inhaler for asthma and does the cough and wheeze stop if you use it?
Dec 01, 2008
amber f
I don't have any advice. Just sending out a huge hug and hope that you find something to help her soon.
Dec 01, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Has she seen a GI yet? Oh, and I CAN NOT believe she got bitten in the dr's office. OHMY!!! Poor dear!
Dec 01, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

It is possible she is aspirating. Has she had a bronchoscopy? Its the best way to see what is really going on. Any aspiration pneumonia?

Asthma would be the other culprit, which may or may not be reflux related.

Is she on a preventative med for asthma, like pulmicort or flovent on a daily basis? It would even be helpful even if the reflux is causing breathing issues by taking down some of the inflammation.That would be the best start I think. As far as reflux goes, the is prilosec,zegerid,nexium,protonix,axid,pepcid, etc, many more choices

Dec 01, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
She is on pulmicort and albuterol at least twice a day, more when she gets really bad. We have had several different tests and we have seen the GI several times but he has written us off because we are going out of state to the children's hospital for all her issues. So, we are working more with her ped and she is doing what she can. She is getting worse. We had started weaning her about 6 months ago and then had to up the meds again. We weaned stopped prevacid and went back to zantac and now we are having to up that dosage again.

We did start peas but that was after we started having the flare. I suppose that could be making it worse. Anyone have that experience with peas.

How many doses of maalox and tylenol is safe for one day for an 18 month old? I am afraid that I am overdosing her! She starts acting clingy and wanting held and when I put her down she just cries, well she is crying even when I don't. I put her to bed and she won't even lay down. She just sits in the corner. She will bring me the tylenol and stuff every 3 hours or so without fail. She has figured out that we keep all her meds in her backpack with her epi and steriods. We turned in her apnea machine and I'm not able to sleep because I am a nervous wreck. She wouldn't wear it most nights but I guess I had a false sense of security and I thought that things were getting better so I was okay with giving it back.

Dec 01, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
You poor thing. I would think if you are having to use Maalox all the time that you need a stronger med to deal with her acid pain. Obviously, I am no DR but it sounds like the zantac isn't taking care of it. :(

I would ask your pedi if one of the meds previously mentioned might be a good next step.

Has she had an EGD? If you can't get this under control with a med change you may want to ask about that and the bronchoscopy. I (personally) would want to know what is going on.

I'd be careful with too much tylenol... it can affect the liver. Check with your pedi on the amount you can give. It is usually better to go by weight not age, especially if you have a "little bitty" like I do. Mine never weighed what the should have for their ages. Can she alternate with ibuprophen or does that bother her tummy?

Oh, and peas... not great here. Reflux flares with peas, especially whole ones but even with the baby food ones. I just gave up on them altogether for my kids.

I am so sorry you are dealing with all of this. I do know what it is like to have a child with apnea episodes. I think I was sleep deprived for a LONG time. Would you feel better if you had one of those angel care ones you can buy at Toy's R'us? I haven't used one but maybe someone else on here can tell you about them. ((HUGS))
Dec 01, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Oh yes... and albuterol 2xs per day?? I was told that that meant the asthma is not under control. Is there another controller they could try? My girls have had wonderful success with Flovent but they are older and I think you need a pulmonolgist to rx it in these little ones. May be worth bringing up. Again, if you need anything feel free to e-mail. I'd be happy to give you a call. I know how stressful this all is!!! RackleyFive@cox.net
Dec 01, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Poor baby! Peas very closely resemble soy. I was always advised not to introduce peas because of her soy intolerance. But I agree with all the other posts....I hope your Dr can help....HUGS!!!
Dec 01, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Thanks ladies. I am feeling somewhat better now. When I picked up Adriane after school today she acted a little better. The babysitter said that she has been clingy today but she hasn't spit up. She is down, hopefully for the night. I am going to take her off the peas and I am still waiting for a call back from the ped to see if we need to come back in or if we should just wait it out. That and how much maalox and stuff I can give her.
Dec 01, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Poor thing. I would suggest seeing a pulmonologist if she doesn't already. One who is willing to look into or work with a GI. We had a wonderful pulmo who helped Cooper a great deal, even with the GI issues. They can do a bronchial lavage and check to see if there is anything in the lungs. That is how we first found out Cooper was aspirating on the reflux. We actually had great luck with peas, even though soy is a major issue. Green beans on the other hand were terrible, so you never know. All kids seem to be different. I also wanted to ment the solutabs were bad for cooper, I think b/c of the lactose and b/c his breathing issues. He always struggled to get them down. We used the capsules and poured the beads on a few bites of food and it worked great. You might ask about that. Hope she continues to do better.
Check with your
doctor first!