Home › Forums › Infant Reflux Support › Boo-Hoo! I need YOU! › I am done….VENT
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April 10, 2008 at 5:47 pm #50185AnonymousInactive
Christine- he is only doing the endoscopy. I asked about the ph probe and he gave me a few reasons he didn’t think it was necessary. He said that with the scope he could see the amount of acid in his stomach. He also said that the problem with a ph probe is that the amount of acid recorded in the ph probe often doesn’t correlate with the severity of symptoms. He said that in his experience, like a third of infants that have severe reflux come back with normal ph levels, even though they exhibit severe reflux symptoms (gagging, aspiration, stridor).
Also, our GI does not live in the same town we do. He and his PA travel over here once a week from Denver. I can’t remember exactly, but he said that like the ph probe requires short hospitalization and since he doesn’t live here, he can’t do it here. B/C he has to do the discharge and stuff. So if I want the ph probe done I have to have it done in Denver.April 10, 2008 at 7:23 pm #50188AnonymousInactivethe scope will show whether or not there is any damage, which is probably more helpful to you at this time. some kids can have a ton of reflux episodes, but the overall % of time is not long, so there isn’t much damage. sylvia had 97 episodes of reflux, but she had several episodes that were considered prolonged episodes, i think that these are the ones that cause damage. sylvia’s longest episode of reflux lasted 44 minutes—-and it was while she was sleeping. also, i could watch the monitor and see that she was refluxing—the numbers were indicating acid, and she would not even flinch. i think that in her case, it was all she had ever known.
at 8 months her esophagus was already getting ulcerated. her overal % of reflux was almost 25% of the time. (29% when she was upright and around 19% when she was lying down.)we were 3 hours from the hospital, so we had to stay overnight for the probe.hopefully you will get some answers from your scope!April 10, 2008 at 7:33 pm #50190AnonymousInactiveThat’s awesome that they let you be there. I am not sure if I can or not, I didn’t remember to ask. I hope I can though. Things like that fascinate me; I actually went to school for nursing for 2 years. Didn’t stay long enough to graduate though. Stuff like my kids getting shots and my son’s barium swallow never bother me. I’m kind of a science nerd.
Did they also take biopsies when they did your daughters? Did that show anything? Also, did you get a med increase following the scope once the doc saw all the damage? The reason for our scope is I want a med increase (to marci-kids) or a med change and the doc wants to rule out other stuff first. We’ll see what comes out of this.April 11, 2008 at 8:22 am #50207AnonymousInactiveWow, so it gets worse at 4-5 months. Now I am really scared. My Isabella is 2 months old and I am already praying every single day for God to give me the strength to get me through. My husband leaves at 6:45 am and doesnt get home till 7:30pm, I have no Mother (she passed 6 years ago), my sister is pregnant and tired all the time, my MIL lives 1 hour and 20 min. away and it is REALLY HARD. And you feel like no one understands you. You hear from people “All babies are hard”. WHATEVER! They have no idea how much harder it is when you have a baby with reflux that is in pain all the time. People think they have all the answers. Like let the housework go —- OK, go where? It will still be there but then even worse and I will just have more work to do. That makes no sense to me whatsoever.
I have ALWAYS been the ROCK for my friends, for my family, etc… This has been the one thing I feel defeated in.I have been through more in the past 6 years then most people go through in a lifetime – My Mother passed in a car accident, my Dad screwed me with money, with our business together, married a young girl 4 months later, didnt come to my wedding; My husband lost his business got sued by tons of clients, we lost our dream house our Merecedes, Porsche, etc…; my cousin who was like a brother to me died;My husband went into the mortgage business and the market went to sh*t and we lost that business too; we moved and I had to pack everything by myself when I was 7 months pregnant and spent 10 hours (5 hrs a day) cleaning the new place b4 we moved in; hmm, what else… BUT, the funny thing is I was OK with all that. I still had a positive attitude and was happy.But this, this has been the one thing in my life that has broken me down mentally and physically! That is how hard this is!I have never been a person to turn to drugs but I am not going to lie, to get through I take Wellbrutrin and I take Zanex at around 6pm to get through the rest of the night. It helps a little at least.April 11, 2008 at 11:31 am #50212AnonymousInactivekristin, i did not stay in for sylvia’s scope—i don’t think they would have let me with a child that young—i think it upsets them too much because they would want mamma. i didn’t see kassie’s scope either, but when tianna had hers, i jokingly said,”i think you should let me stay and watch,” and the ped gi told me i could. he even had me stand right next to him and hold on to tianna’s hands so that she would keep them away from her face during the procedure. she was out of it and didn’t remember anything, but she still would try to move her hands towards the scope. they took biopsies on all the girls. they have to take biopsies because they can’t diagnose with the visual eye with a scope. things might look good visually, but the real diagnosis is made on the molecular level. there is some bleeding when they take the biopsies and he said that kind of bothers some parents.
when i had my scope done (by a surgeon, not a gi, not a good idea) i had to ask him whether or not i needed to be taking meds. he looked at my lab report and told me it said i had severe reflux esophagitits. i didn’t think that my symptoms were bad enough to merit a SEVERE diagnosis, but the surgeon couldn’t tell me how they came to that conclusion. i asked our ped gi about it, and he said they base the diagnosis on molecular changes.once the doctor realized how much damage sylvia had and how high her % of reflux was, we were sent to the ped surgeon. the ped gi’s quote was that her results were, “pretty darn abnormal.” i think that after 11-13% reflux is when they consider surgery, but sylvia was also anemic and failure to thrive and already had alot of damage—-and she was on prevacid and carafate. surgery looked like the best option. i had someone try and talk me out of it, but i trusted our ped gi——and when they went in to do her surgery, the surgeon discovered she had a good size hiatal hernia which had not shown during two upper gi’s and a scope. hiatal hernias are common in older people, but i think it is considered a birth defect and not overly common when a baby is born with one. we could have medicated her to her eyeballs and she would not have gotten better. her surgeon told us that his first impression of her was that she was either a preemie baby or a reflux baby.i’m fascinated by medical stuff, too. i considered going in to nursing years ago, but then i got involved in having my kids. now that sylvia is just a few years away from school, i have been thinking about getting the prerequisits done so that i can be ready to try and get into the program when sylvia goes to school. the program here is kind of hard to get into. the tell me there is a two year wait for the RN program, but only a semester wait for the LPN program. i think i may start with the LPN program, because you can get advance placement into the second year of the RN program—sounds like it might be a little easier to get in that way, but even if it isn’t, at least i could work part-time for a higher income for awhile. plus, the college rep told me that there is a shortage of LPNs in our area, so it has driven up the wage.kevieb2008-04-11 11:32:43
April 13, 2008 at 12:46 am #50265AnonymousInactiveOh my gosh, I feel exactly like you do. I’ve been taking Tylenol with Codeine to rid of my migraines that I have all day long. Even then, I still have a dull headache. I walk around in a fog all day. I try to be in a good mood but it is so hard. I hope that things get better for you soon, I am living with this horrible reflux situation as well.
April 13, 2008 at 1:26 am #50266AnonymousInactiveI WISHHHH I could take something with codeine! Too bad I am allergic. But Valium’s sounding pretty good right now LOL!
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