Posted By Posting
Feb 11, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
Another Flare
Has anyone ever wanted to go back to all the docs that said the famous "when she sits up when she starts walking when shes a year old when shes two" and say so what now. DD is now 4 years old. We are having another flare and we are over a year since seeing her last GI and have another month before we see the new one and since we no longer see a pedi we see a family doc we are on our own. We started adding the zantac back in at the same dose as the old one. She hates the taste of the liquid so we are giving her an otc tablet. It has been hard adding another med in after so long without it. It means changing the whole schedule around again. We are having choking episodes gagging at night crying in her sleep sour burps and tons of hiccups. So now we are doing Prevacid solutabs 15mg in am and at 5pm flovent in am nasonex in am 5mg zyrtec in am and pm atarax supposed to be 20mg in m and 10mg in pm but only getting pm dose since doc screwed up the script and zantac at bed time. along with a host of tums and skin creams. Has any one else noticed a decrease in appetite when getting the reflux back under control? I think Jordyn may be a comfort eater like she eats to push things down. Is this possible. Because it's been about a week since the zantac and she is saying she is full with less than half the ammount of food as usuall. Sorry to go on and on but I am at wits end the last time we were at the allregists he mentioned the possibility of Masteocytosis or eosinphillic disease. He ordered some blood work and said it was perfectly normal. Well I did a little of my own research and it looks like neither one of theese things can be dx'd by blood work alone am I correct and is this something to bring up with the new GI or is there somewhere else we need to get an opinion on this.
Feb 11, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Hi there. I feel for you. My daughter's reflux came back when she was three. She was very sick and in a lot of pain. It took us a long time to get an answer because the wait was so long at our CHildren's hospital.

Turns out all that time we thought she was doing great, she was having silent reflux and the acid caused damage in her stomach and espoghogus. She is doing better now that she is on the right dose of meds to heal her up.

Most answers can only be diagnosed through a scope. I know for sure that EE can only be dx with scope. I will bet that the new GI will recommend this procedure. It can give you so much information for treatment.

Until your appt. I would take her off dairy and all acidic foods. All bland foods until she is diagnosed.

Katie lost a lot of weight when she was sick but since she started the meds she has gained it all back and more.

Good luck at the GI.

Feb 11, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
We already avoid all dairy due to an undiagnosed milk allergy she eats chicken almost exclusively. We have had 2 scopes in the past the first one showing a hernia and bleeding in the esophagus. The second one not giving much more clues. I know what she is going thru I have reflux myself and know what it's like not to sleep soundly but at this point I can't sleep because I am constantly worried about her and the behavioral problems that come along with it are just putting me over the edge. She is constantly crying and angry and I believe it to be the reflux but she still even with wonderful verbal skills dosen't seam to point directly to pain but I am sure just the lack of sleep can cause theese issues. I have effectively turned her into a germ a phob worried about getting sick from a tissue or not washing her hands. There is a major bout of the stomach virus going around and I am trying my best without becoming sutins to keep her from getting that cause the last one landed her in the hospital for a week. So many worries. I havent gotten a school assignment done in months because there is just so much else to deal with.
Feb 11, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
It is so undescribably (sp??) hard. Nobody can understand unless they have gone through it. Just have faith that it will get better.

You probably already know this but just be super prepared for the GI visit. They fly in and out very quickly.

I had to take Xanax when she was really ill. I couldn't function.

Hang in there.

Have you tried Mylanta for the pain. That really helped Katie more than anything.

Feb 11, 2009
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

Did they take esophageal biopsies when she had the scopes? That would have shown if she indeed has a eosinophilic disorder.Most of the time, they take biopsies, but it wouldnt hurt to double check. It cannot be dx by bloodwork, I know firsthand because my son has EGID.

I assume the hernia was a minor small one and nothing serious, otherwise it would have been fixed ASAP. Hernias will certainly make reflux worse.My son had a giant one(the largest the surgeon had ever seen) and was trapped up in his chest , it was very dangerous, he had to have it repaired and reconstruction.

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Has she had any motility testing, like at the least a gastric emptying to check for DGE?Tried any prokinetic meds like reglan,erythromcyin.If not,that is the next step.

Prevacid/Zantac are just the tip of the iceberg, there are many more choices/combos to try.Is she only getting 15 mg of Prevacid per day?? That is pretty low, I would see if you can move up to 30 mg per day.Heck, Brent was on 60 mg per day of Prevacid at on 7 or so months old!(he had severe esophageal/stomach damage/scarring though-he even had it on the 60 mg!) Some times you have to switch PPI's there is also Prilosec,Nexium,Protonix,there's also Zegerid, some also use Axid instead of Zantac.You can do something like the PPI twice per day, and the Zantac twice per day as well.

There is also Carafate, used to coat the esophagus and help with the pain. Mylanta is also very helpful

Feb 12, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hi. I'm a little short on time, but wanted to tell you that e.e. & the like cannot be diagnosed by blood work. The only way to tell for sure is to have an endoscope with biopsy. Eos. lower in the digestive track would require a sigmoidoscopy (I believe). My son, who is almost 3) was diagnosed with e.e. last summer. The thing that really bothered me was his frequent choking/gagging. He has some IgE food allergies (but that isn't necessarily always the case) & has been on Prevacid. Bottom line: I really had to push for further testing. The GI Dr. blew me off & the ped./allergist were not all that helpful/knowledgeable either. I hope you can get to the bottom of it. Ellen
Check with your
doctor first!