Posted By Posting
Jul 25, 2005
Henry's mom(thesignshop@nicoproductions.com)
4 month old pulled PH probe out!!!! What next?
Our four month old pulled his PH probe out this evening. Has this happened to anyone else? What can I expect to happen next. This was a tramatic experience for our young one let alone us both. He cried most of the 6 hours it was in. We really need to get to the bottom of his diagnosis. We've been battling his reflux since he was born. And I thought things couldn't get any worse. The thing that scares us most is that he has episodes where he can't breath because of the regergitation. Any that can help? Thanks. Amy
Jul 28, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Hi, Sorry you are having such a rough time, but you are in the right place if you want others that can relate to you!!! I assume you chose to get the ph study done to find out the frequency and duration of the reflux episodes and to know how acidic they were (I am guessing you already knew he had reflux and you already had him medicated!). Maybe they can get at least some idea with the 6 hours that were recorded, or you could always choose to have it done again (ugh). You could request an endoscopy. It is easier in the sense that it does not last for 24 hours--the actual test is 15 minutes, and he is sedated, so there is no protesting on his part. But he is sedated and that is scary for parents and it does not give you the same informaton that the ph probe does. The ph probe is considered gold standard for diagnosing reflux--if you already know he has it, it may not be important enough to you to try doing it again. If you are looking for a mild, moderate, or severe label to the reflux, the ph probe is the way to go. The endoscopy does give you useful information that can help you piece together the severity of your son's reflux without having the ph probe redone. You can know with certainty if he has a hiatal hernia or not (reflux can't be outgrown if there is a hiatal hernia present), biopsies can be performed to see if he has eosinophillic esophagitis or gastritis (which can accompany reflux or be separate from it but mimic it), and biopsies can be performed to test for esophagitis (inflammation in the esophagus) or gastritis (inflammation in the stomach), it also looks for other structural abnormalities from the esophagus to the intestines. You can know that the medicine you are using is effective if no inflammation is present. What meds is he on? Has the doctor suggested anything to minimize what comes up in order to help minimize the blue spells? My 3 year old still stops breathing during reflux episodes, as a matter of fact, she did it just two days ago. My 3 month old started doing it too. It is scary but the most reassuring thing I can tell you is that if he is with you and it happens, hold him upright and pat his back. He will clear it and start breathing again. My daughter has done it more times than I can count. It is always scary but know that the airway closing off during an episode is a natural protective mechanism. When liquid threatens to enter the airway, the body's natural response is to close off the airway. It is really good that it is there because it keeps liquid out of the lungs. So once the liquid moves out of that spot, the airway opens up again. I keep my 3 month old sleeping upright in the fisher price papasan chair and put the chair in the arms reach cosleeper so he is always right next to me and is always upright. He chokes when he is upright--laying flat is too dangerous for him. If you lay your son flat on his back and leave him alone, I would reconsider doing that for now and talk to his doctor about alternatives to keep him safe during this time of his reflux. If sitting up in a chair wouldn't work for him, you could consider the tucker sling. You incline the mattress of his crib and use the sling to keep him from sliding to the bottom. You can keep him on his back but he is high enough to minimze what comes up and he is better able to clear what comes up from his airway. My son's ped said when my son turns 4 months and can roll both ways, we may want to start laying him on his stomach because it is the safest way to lay to keep from choking. Definitely ask his ped before deciding what to do though. I hope things get better for your little guy!! Take Care, Carla
Jul 28, 2005
Amy
Mommy to Emma - 2.5 years old
No more probe... more tests...
I really appriciate your information!!! I don't know how you found the time to respond. Well, just to update this story, we didn't do the probe again. He just disliked it way too much. They were able to get some information. It was only in for 4 1/2 hours. It was amazing that they got anything off it. The nurse just left a message for me, I'll talk with her tomorrow, but they did notice whatever is coming up is non acidic. Monday we do a gastric emptying study. I'm going to ask what exactly they'll be looking at with this. Our options after that sound like reglan or the endoscopy balloon procedure to stretch things. I'm not sure I like either, but we can't keep going on like we are now. How do you deal with sooo many breating episodes?! It causes a patch of gray hair on me every time! Luckily, we just got a sleep apnea monitor. What a godsend! At least now I can take a shower and not have to worry if I'm leaving him. Not to mention that we sleep much easier. He does sleep on an incline or in the carseat. Now it's a bit easier due to putting him in the johnny jump up or his saucer walker. Right now he's only happy if I'm holding him. This is a tough time. I can't hold him 24 hours. When he's feeling good, he is content just to play on a playmat by himself and he'll fall asleep on his own for naps and bedtime. I've got to rock him to sleep every time when this is at it's worst. It's a lot of strain "having" to do that instead of wanting to. Allthough, he's only little once, but even so. The doc had him on Previcid and Pepcid. Now, he just takes .7ml of Pepcid 2 times a day. Have you ever heard of sleepiness as a side effect to pepcid? It seems like when the dose goes up, he's sleepy for about a week. Strange. We also give him an antacid 3 times a day. It seems to help him burp. He just screams and arches his back after gets done with a bottle. It's heartbreaking. I'm hoping to be informed enough to ask the right questions and get some answers. I just want my little guy to stop being in pain. Thank you sooo much for taking the time to help me!!! Amy
Aug 11, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Amy
Hi Amy, Sorry it took me so long to write back, now you see I don't always have the time! I am glad that they didn't see anything acidic in that block of time it was in, but I am glad too they kept him on pepcid because a 4 and a half hour time block is not all that accurate! One of my daughter's probe studies showed her refluxing over and over again in the morning at really acidic levels but not at all the rest of the day and night. If it hadn't been in the full 24 hours, we wouldn't have seen that. I don't think it is worth doing it again in your case, because you know he is refluxing. You can treat it according to his symptoms of pain or no pain when he is on medication and when he is not. The only reason it mattered for us is that she was scheduled for a second fundoplication and this probe study was the last bit of confirmation we needed to have it redone. I am assuming maybe they took him off the prevacid after the probe study? Has he seemed to get worse without both prevacid and pepcid? Have you seen a difference without prevacid, good or bad? Don't let the ph probe rule his treatment because it wasn't the full 24 hours that is considered the gold standard in diagnosing reflux. Do they say what they think was coming up? Do they suspect delayed gastric emptying? That is what the gastric emptying scan looks for. If the contents of the stomach take too long to empty, it can cause reflux. Reglan would make the stomach contents empty faster and therefore minimize the reflux. Reglan can also have dangerous side effects so make sure you are aware of what to look for if he starts the medicine. Which antacid do you give him? Do you think he screams and arches because of gas pain or because of reflux pain? Is he formula fed or breastfed? Have you considered looking at food intolerances that could be contributing to his tummy troubles? Milk and soy are the most popular at this age. Many foods aggrevate reflux--regardless of whether or not he truely has reflux or the reflux is secondary to another problem like delayed emptying-- or even a food allergy. Some people find their child doesn't need the reflux med anymore after removing offending foods from their diet. Or at the very least, they find the reflux more manageable. It is common for treatment to take more than one approach to be successful. Write back if you want, I will help you figure out what questions to ask your doctor! Carla
Aug 12, 2005
Amy
Mommy to Emma - 2.5 years old
Hi Carla
Thank you sooo much for writing back! Your input has really helped. If it's easier, you can email me at thesignshop@nicoproductions.com we do have gastric emptying problems. minor luckily. they started Henry on reglan. it got worse before it got better! we're on .6ml 3x/day. still on .7 pepcid 2x/day. no difference whatsoever without the previcid! we're going on day 4 of good moods. that's quite amazing for us! thinking of neocate. not sure yet. did order one case just to try possibly. started #1 jar food. that's helping. green beans last week and squash starting today. have to go get Henry. write more later....
Sep 22, 2005
khammons
Delaney's Mom
Amy, any updates?
It sounds like we are going through the same thing you went through. Any updates? Maybe a miracle treatment - that is what we need right about now. Hope things are better for you.
Sep 29, 2005
henrys mom
Amy-mom to Henry 3/1/05 silent refluxer MSPI --- Lucy-8/23/06
update on Henry
Hi! It's strange that I even saw this on here. I was looking for an old post(that I never found) and saw this. It seems like such a long long time ago this happened. This was my first post. Out of desperation of course! The docs got enough info from the probe to know there was non acid reflux. We suspected as much with his symptoms. At this point(7 weeks later), the reflux is not under control whatsoever, he's on an apnea monitor at night, and we've switched ped docs and gi docs. Sounds neourotic? I feel neourotic! You know, I'm just trying to get some answers to fix my baby and help him feel better. We're working with a lung specialist as well, and trying to keep him from getting asthma. I think, by the signs, he's very close to that. It's scary. We try the new gi doc in a couple weeks. Hope to get some answers. SO TELL ME<<< What's going on with you and Delaney? How old is she? Are you having a similar experience? You can start a new post if you want. Amy
Oct 12, 2005
lansima
Marsha
Son Logan Born 7-2003 with EA/TEF
Henry's Mom, My son was thought to have apnea because he would "gasp" for air when I laid him on his back (he slept on his stomach from 2 weeks old to 20 months old and never had any problems). I have read that it was his Tracheomalacia that was causing the apnea-like spells. Tracheomalacia is a floppy trachea (normal trachs are hard and rigid). You may want to ask you son's docs about it.
Oct 20, 2005
henrys mom
Amy-mom to Henry 3/1/05 silent refluxer MSPI --- Lucy-8/23/06
thanks
That's sooo nice of you to give me that info! Since I've written all this, I'm finding out a lot about reflux and how Henry ended up with it. My mother-in-law, remembers when her boys were young and one projectile vomited 5 feet and the other had to have drops 1/2 hour before he ate just to help him keep things down. The docs didn't call it anything way back then!?!? The reflux history is sooo intense in my husbands family that unfortunately for Henry, he'll be dealing with this for a lifetime, I believe. I hope we are only dealing with just the reflux and not anything else. Henry is 7 1/2 months old now and learning how to cope with the reflux spells, so now, instead of choking, he just coughs. He hasn't choked in about 3 weeks... knock on wood!! I'll defitely keep the trech info in the back of my mind:)
Aug 29, 2006
mrsmutmuttley
Mom of Lilith, age 4 and William, 3 months
Family vomit history
odd question.. your mother-in-law said one of her son would projectile vomit... was that after he ate or just when he vomitted he projectiled? The reason I ask is my daughter has reflux and I personally am a projectile vomitter (that was weird to say). I wonder if there is a connection between the two. My daughter never vomitted though. Before she was diagnosed she would just scream.. but we found out she is an asperater (not sure that is spelled correctly).. the food and acid goes into her lungs and cause instant and long lasting pnuemonia.. sometimes i wish she would vomit instead.. lesser of two evils i guess. Thanks
Check with your
doctor first!