Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 Sheryl, When my son was an infant and suffering from reflux, we did the following: Slightly propped up his crib mattress by placing a telephone book between the mattress an springs. Then when I got up for a middle of the night feed I fed him half a bottle, burped him, then gave him the rest of the bottle and burped him again. Then I would sit in a rocking chair with him either head laying on my shoulders or put a pillow on my lap and " sit " him up at a 45 degree angle for about 15 or 20 minutes. Mind you, I kept all lights off so he would be sleeping during the holding part. Then I placed him back in his crib. He was (and still is) a roller in his sleep, so we put one of those preemie inserts from a car seat (which sort of craddled his head) in his crib with one of those double foam squares you can buy to keep a baby from rolling in his sleep and he would lay in between the foam squares. I think they are sold in babies'r us. This kind of of kept him in place, so in combination with the mattress at an angle it worked. Dalia is bigger than Jake was at that age, so not sure if this will help or not, but just wanted to pass along what we did. Alison > Hi all, > > It was great to meet so many people at the convention who have so > much in common! I learned so much and can't wait till next year! > Mainly that Dalia does not have RSS, but SGA and overfed (never > thought that could be possible, but go figure)..and I know that the > treatment is the same..I also realized that her reflux is much more > severe than I ever imagined. > > My question is this: How do you handle the problem of keeping the > child elevated for 30-45 minutes after eating when you feed them in > the middle of the night. I mean at 2:30am the last thing I want to > do is hold her at a 45 degree angle until 3:30am. Also, she rolls > around her crib a lot, so propping up one side of the crib won't > help. > > I have been just holding her upright for around 10 minutes, burp her > and then lay her back down. She always seems ok, but now I wonder > if I'm harming her even more. > > (I tell ya, I can find something to worry about at any moment > time...I'm great at it > > BTW, I posted some pictures in the Dalia folder. > > Sheryl (mom to Dalia, 8 mos, 13.25 lbs, 24.75 in, not RSS, SGA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Dear Sheryl, Some babies can sleep very well in their carseats for a few hours. Maybe that would work for that middle of the night feeding. Feed her, strap her into the carseat and go back to sleep until early morning. As a person with severe GERD myself, I can tell you that I would rather sleep sitting up than to suffer with reflux when it is bad. And a reclined carseat doesn't look all that uncomfortable to sleep in. Conny > Hi all, > > It was great to meet so many people at the convention who have so > much in common! I learned so much and can't wait till next year! > Mainly that Dalia does not have RSS, but SGA and overfed (never > thought that could be possible, but go figure)..and I know that the > treatment is the same..I also realized that her reflux is much more > severe than I ever imagined. > > My question is this: How do you handle the problem of keeping the > child elevated for 30-45 minutes after eating when you feed them in > the middle of the night. I mean at 2:30am the last thing I want to > do is hold her at a 45 degree angle until 3:30am. Also, she rolls > around her crib a lot, so propping up one side of the crib won't > help. > > I have been just holding her upright for around 10 minutes, burp her > and then lay her back down. She always seems ok, but now I wonder > if I'm harming her even more. > > (I tell ya, I can find something to worry about at any moment > time...I'm great at it > > BTW, I posted some pictures in the Dalia folder. > > Sheryl (mom to Dalia, 8 mos, 13.25 lbs, 24.75 in, not RSS, SGA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 hi sheryl, when christopher was a baby my mom use to laugh because he slept in an infant seat (it was a cradle rocker seat by fisher price, that you could keep stationary and up right looks very simialar to an infant car seat) or his bouncer seat!! this is all he was able to stay comfortable in, he rarerly spit up because of this. give it a try and see what happens!! good luck!! jodie (nicholas-6 nonrss, christopher-3 1/2 rss 25lbs 1oz 34 3/4 " periactin, ght genotropin (on hold 3 more months), ADHD(possible), assmentry(left side 1cm), johnathon-1yr nonrss) > > Hi all, > > > > It was great to meet so many people at the convention who have so > > much in common! I learned so much and can't wait till next year! > > Mainly that Dalia does not have RSS, but SGA and overfed (never > > thought that could be possible, but go figure)..and I know that the > > treatment is the same..I also realized that her reflux is much more > > severe than I ever imagined. > > > > My question is this: How do you handle the problem of keeping the > > child elevated for 30-45 minutes after eating when you feed them in > > the middle of the night. I mean at 2:30am the last thing I want to > > do is hold her at a 45 degree angle until 3:30am. Also, she rolls > > around her crib a lot, so propping up one side of the crib won't > > help. > > > > I have been just holding her upright for around 10 minutes, burp > her > > and then lay her back down. She always seems ok, but now I wonder > > if I'm harming her even more. > > > > (I tell ya, I can find something to worry about at any moment > > time...I'm great at it > > > > BTW, I posted some pictures in the Dalia folder. > > > > Sheryl (mom to Dalia, 8 mos, 13.25 lbs, 24.75 in, not RSS, SGA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Jed (non rss, but reflux) always slept in his swing ... Never spit/threw up in there...as long as it wasn't moving... Although he did like it to move once in awhile... .. Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04 and Jed (11 years old) Tourettes, CAPD,SVT. SW Orlando FL **Push for Bush 'cause Kerry is scary** Check out my group: http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 , You can't necessarily tell at three months whether or not a child has mito. My son showed no signs that we recognized until he was ten years old. I showed no signs until adulthood. Think about all the healthy moms with mito kids. The kids got it from the moms. My kids both have reflux. My daughter had severe GERD that required a Nissen fundo. She has a g-tube. Still has GERD. Son has esophageal erosions. Prevacid and the like don't stop reflux. They just increase the gastric pH and make it more comfortable when one refluxes. Reglan is often used to speed up peristalsis and make the food go through the gut more quickly. This means there is less food in the tummy to reflux. Do you have a GI? You need one. I'd ask about reglan/prilosec (or some other proton pump inhibitor). I'd also ask about thickened feeds (which sometimes help). GERD is very painful and can make for a very grouchy kid. Think about how you'd feel with hydrochloric acid poured on your mucus membranes. It feels like torture. Most kids outgrow GERD by the age of one. Almost all others outgrow it by two. If not, your docs may consider surgical intervention. My sister's kids have had it as infants. They've taken zantac and reglan and outgrown the reflux by one. They were mean, grouchy kids until they were medicated. Nice kids on medication. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 As for the bm's, don't worry. It is perfectly normal for a nursing baby to go that little as long as he doesn't seem to be constipated. Several of mine went that often, others went more or even less frequently. The reflux issue is a little more concerning and I would definitely treat with the previcid to see if it helps. Mito or not, if there is reflux to treat, why not use the best to hopefully treat is quicker. The crabbiness sounds just like Zipporrah. Have you considered the possibility of gastric emptying problems? (It could also alter the BM's) If he is having any sort of irregularity (too fast of emptying or too slow) then he could experience tummy pains or discomfort, excessive gas, etc. All make for a crabby baby. Does the baby seem to sweat extra much during or just following feedings? Zipporrah had blood sugar changes due to the dumping and it caused the tummy pains, sweating, and the crabbiness. Speak to Grace's GI doc for more help. She may have some good advice as well. Zipporrah needed to drink much more frequently like your little tike due to the dumping as well. Because the tummy emptied too quickly, she got hungry sooner. You can have a combination of too fast and too slow gastric emptying so even if you have food leaving the stomach too quickly, you could still have the slower motility in leaving the body. Lastly, how is your milk supply? If good, is the baby having one of those fun growth spurts that cause need for extra food, thus causing them to nurse more frequently to increase the milk supply. As long as she seems to be getting what she needs in that area don't worry. How is her nursing going? Any loud swallowing, gagging, couching, abnormal sucking issues? Sorry I am asking so many questions. Just unfortunately had tons of experience with all you are talking about (with Zipporrah). Hope some of this helps you. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) reflux question > Hi all, > I am stumped on our little one, so I come to the experts to see if you > have any advice. > (our three month old) was diagnosed with reflux when he was about > 6 weeks old. So far he is showing absolutly no signs of having mito, like > his sister did. We did the Pepcid thing with no success so we stopped it > after a month. He is still vomiting alot and lately he has been really > fussy and wants to eat every two hours or so. (He is breastfeed.) I'm > trying to decide if he is in pain from reflux or just a crabby baby. I'm > not sure if I want to go the route of the Prevacid, and all of what we > used for Grace since he is not mito affected and will most likely grow out > of it in another month or so. > I did try giving him some rice cereal, from a spoon, after he ate to see > if that helped. It did stop the vomiting but he was actually more fussy > afterwords. Also he still wanted to nurse after an hour, and I could tell > it was for comfort not for hunger. Any suggestions? > > O.K. only one more question. Has anyone ever heard of a baby who has very > few BM's? is only having a BM about every other day or so. It > does not seem to be what is making him crabby either, since he is crabby > if he has a bm or not. Also, the BM's look completely normal for his age, > so I'm not convinced he is constipated. Maybe I just have him spoiled. > > I know he is not a mito kid, but I am lost. Any ideas greatly appreciated. > Thanks in advance. > > > > -------------------------------------------------------------------------------- > Find files on your PC instantly with the new MSN Toolbar Suite - FREE! > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Great advice Darla, thanks. I never even thought about idea of gastric emptying, maybe I should look further into it. Can that make for more vomiting, without it being reflux? I'm asking this because he really only has the vomiting part, he does not ever arch his back or straighten out like "typical" reflux babies do. I have not really noticed sweating though. Well, maybe a few times but it was most likely because I love to swaddle him all up when nursing. That on top of body heat can be a good reason for the sweating. As far as my milk supply, that has been no problem. I was wondering if maybe I did not have enough so I tested it. I tried pumping between feedings, and was easily able to get a good 8 oz. out so I'm sure he is getting plenty. As far as his suck goes, it varies. Most of the time he has no problems, but there are times when it is odd. Sometimes he will only suck for a second then pulls off to swallow then latches back on for a second, and repeats this cycle during the entire feeding. Also sometimes it seems as if he is gagging on the milk. I think this may be the flow coming to fast, as this only happens on the side where I produce the most milk and the flow is very strong. Do you think his normal pediatrician would have an idea on this? I will not be going to Gracies GI for awhile (hopefully) and I don't want to run him there if his regular ped. can take care of it. Thanks for the tips. Much appreciated. Find the music you love with MSN Music – tracks are just 99c! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Thanks for the advice . Yes, we do have a GI but I am still reluctant to take him (although I do agree I should). I will bring it up to his Pediatrican, and we will probally end up there. I know there is no way of really knowing that he does not have mito, but we are still pretty confident. We also had Dr.Cohen check him out at one of Gracies appointments and he found no reason to even do anymore blood test than what were state required. He had told us that (most likely) if he did have mito, it would present the same way as his sister. She was very ill and not growing right by three weeks. is now three months and in the 95th percentile for weight (no growing problems there.) All of my children has had reflux, so I cannot use that one to compare to mito or not. I think I say it moreso because it makes me feel better. I cannot imaging going through what we have gone through with Grace again. I do hope, though, that they can figure out our family's gene problem so all the children can have genetic counseling when they want children. Thanks again for the insite, it is much appreciated. I'll probally be calling the GI really soon. Find things faster with MSN Search – try it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Yes, too slow of a gastric emptying can result in not being able to hold more food since the tummy is already full. When it gets too full, the food will automatically come back up. Also, some babies can't hold as much as others so they get full easier. One issue Zipporrah has is excessive phlegm production which takes up space in her tummy and then causes her to reflux (now retch since she has a fundo). Keep an eye on the sweating to see if there is any pattern separate from the swaddling, but it sounds like it isn't an issue. I would definitely watch the swallowing, gagging, and latch on issues. Zipporrah's first symptoms were just like that. Some times the latch on would be firm and well done, and then other times the grasp seemed very weakened and she would such a few times only to pull off and either gag or swallow loudly and then try again. For her, it became so frustrating that she would only want to nurse only a minute or two and then stop. She also struggled more on one side than the other, but for her muscle weakness was the cause. Especially after her 2nd month and 4th month strokes, she would really struggle with the more affected side. Weakened tongue or cheek muscles, as well as throat muscles, can really make it much harder to eat and can cause a lot of fussiness. For Zipporrah, she too was in the upper 90th percentile strangely. She struggled so much and yet because I had nursed so many before her I knew to nurse more frequently to give her what she needed. I spent much more time nursing than with the others, longer periods of time (sometimes up to 45 minutes) and much more frequently. If he seems to be having a harder time nursing and you notice more frequent odd behaviors at the breast, I definitely recommend getting him checked by a GI and make sure to mention all these issues. Do NOT let them come back and say, he is gaining so well that there must not be any problems. The feeding therapists we have been to have told us that surprisingly MOST of their patients are a good weight or better. Weight gain is not a good measurement of whether a child/infant has good or bad feeding abilities. Another thing to be aware of is that at about 3-4 months of age is when a lot of feeding problems begin to show up. This is the period of time where the infant reflex sucking pattern leaves! After that point the child has to CHOOSE to suck, rather than having a natural reflexive sucking pattern. So if problems are present, this is the time they show up. Zipporrah began to really struggle by 3 1/2 months and had a NG-tube by 4 months. She just couldn't get her suck, swallow, breathe pattern down and it was just too much work and stress for her. Vomiting became regular as did the gagging, and pulling off and latching back on over and over again wore her down so she almost just stopped trying. She was still hungry though so she kept trying for short periods, but it wasn't enough for her so she ended up dehydrated most of the time until we took action to help her out. I, like , think he may need more intervention, and although a pediatrician MAY help, they also might not realize the need for further help due to the weight issue. Keep watching for sunken in fontanels and other signs of dehydration like urine output and seek help for sure if he continues to struggle. You alone know your pediatrician, so I can't really advice him/her over the GI. Definitely keep me updated and feel free to ask further questions about the nursing issues. He sounds so much like Zipporrah in the feeding arena. Let me know if I can help you more. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: reflux question > > > > > -------------------------------------------------------------------------------- > Find the music you love with MSN Music - tracks are just 99c! > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 I am not sure that most reflux kids arch. Mine never did. I really think that this is something that a GI should handle--especially if you can't fix it with a combo of reglan and zantac. It is perfectly normal for a baby to go as much as five days without a stool. Some go every time they eat and some go a week between stools. Also, it is perfectly normal for a baby to nurse every hour on the hour. One of mine did and the other did not. Reflux is a serious issue. Quote Link to comment Share on other sites More sharing options...
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