bed for a baby with severe reflux?

[Pamela H in Texas]

Since the Hive knows EVERYTHING....

 

Squishy is five months old now.  He is a little delayed, but not much and is getting strong.  He has SEVERE reflux and will NOT turn his head when lying down (so will choke).  So he has been sleeping his his rock and play (http://www.fisher-price.com/img/product_shots/BHV55-yellow-rock-n-play-sleeper-d-3.jpg) since birth.  Now that he is getting stronger and is no longer swaddled during sleep, I worry about him sleeping in it.  But I can't put him in his crib because I can't have him flat and I can't prop the mattress enough (without him rolling down).  I saw one little reflux wedge, but that was way  not propped enough.  I saw a HUGE wedge with a sling, but having him held where there would be pressure on his bottom and g6nit@ls all night did not make me feel comfy. 

SOMEHOW I have to get this kid into something more appropriate.  Am I missing some great idea?  Doctor says to have him on a 30-45 degree incline.

[Ellie]

Since the Hive knows EVERYTHING....

 

Squishy is five months old now.  He is a little delayed, but not much and is getting strong.  He has SEVERE reflux and will NOT turn his head when lying down (so will choke).  So he has been sleeping his his rock and play (http://www.fisher-price.com/img/product_shots/BHV55-yellow-rock-n-play-sleeper-d-3.jpg) since birth.  Now that he is getting stronger and is no longer swaddled during sleep, I worry about him sleeping in it.  But I can't put him in his crib because I can't have him flat and I can't prop the mattress enough (without him rolling down).  I saw one little reflux wedge, but that was way  not propped enough.  I saw a HUGE wedge with a sling, but having him held where there would be pressure on his bottom and g6nit@ls all night did not make me feel comfy. 

 

SOMEHOW I have to get this kid into something more appropriate.  Am I missing some great idea?  Doctor says to have him on a 30-45 degree incline.

 

:grouphug: 

 

Alas, I have no knowledge about that, but I wanted to ask he's eating. One of the symptoms of dairy allergy/lactose intolerance is spitting up. If you're bottle-feeding, have you tried different formulas? The one most often prescribed for babies with food allergies is Nutramigen. If you're nursing, the recommendation would be to eliminate all dairy from your own diet (because everything you eat, the baby eats). And it can take up to a month for all the dairy to be completely out of your system (and his).

 

If you've already tried what I suggested, then never mind. I hope someone can help with the bed. :grouphug:

[prairiewindmomma]

You want a medical grade reflux wedge AND meds. Prevacid solutabs are crazy expensive, but untreated reflux can cause issues.  If it's medically necessary, it's covered under insurance. ;)

[prairiewindmomma]

FWIW, the Res-Q wedge is orthopedically designed to protect hip alignment, etc. His parts will not be under pressure. ;)  You can also use it as a side wedge if you don't want to sling, but for a 30-45 degree angle in an older baby, the wedge/sling may be your best bet.

[applethyme]

When ds had reflux so bad we medicated with prevacid solutabs, changed formula and he slept most of the time in his swing.  Instead of using a wedge to elevate the head of the bed we put books under two of the crib feet to get the elevation we needed.  Changing his formula helped most of all but he did end up having surgery to stop his reflux because it was not enough.

[imagine.more]

Our second son had severe reflux (aspirated and needed to be on apnea monitor) and we inclined his crib mattress to almost 30 degrees. We dropped one side down and screwed it in to a lower setting and left one side on a higher setting. We also used a SnuggleU to keep him secure in place and happy. http://snuggleu.blogspot.com

 

This is a pic of how we did our crib: http://www.planningonit.blogspot.com/2011/02/finished-nursery.html

 

ITA with the others that it might be worth looking into what else could be done from a medical side of things either with diet (dairy and soy free diet is helpful) and medication (my son was on Prevacid which worked wonders and needs to be given unmixed and on an empty stomach 2x a day to be effective). With diet and medication our son was able to sleep well by 12 weeks (sleeping 11 hours a night undisturbed and napping well during the daytime) and we dropped the incline slowly starting at 5 months and ending by about 7 months. By 11 months he was almost completely recovered, just needed a soy and dairy free diet but otherwise was a happy healthy child. 

 

Reflux is a beast to deal with, and I know the pediatricians aren't super helpful a lot of times. If you find a good specialist they're sometimes better but even then you're often left to figure out the practicalities of how to get a 30 degree angle on the bed all by yourself. 

[MiMi 4under3]

At five months can he sleep on his belly with a smaller wedge under the mattress?

[zoobie]

:grouphug:

 

Alas, I have no knowledge about that, but I wanted to ask he's eating. One of the symptoms of dairy allergy/lactose intolerance is spitting up. If you're bottle-feeding, have you tried different formulas? The one most often prescribed for babies with food allergies is Nutramigen. If you're nursing, the recommendation would be to eliminate all dairy from your own diet (because everything you eat, the baby eats). And it can take up to a month for all the dairy to be completely out of your system (and his).

 

If you've already tried what I suggested, then never mind. I hope someone can help with the bed. :grouphug:

Yes, this! I would bet his reflux improves an incredible amount if you remove dairy (and likely soy too).

 

Super helpful forums: http://infantre.nextmp.net They're not active currently, but the back archives are amazing.

[momto10blessings]

Did the dr not have any suggestions for beds? Odd of him to tell you what incline baby should sleep at but not offer where to find such a bed.

[SparklyUnicorn]

We had a very large bouncy type chair.  Sometimes I used the car seat or swing.

 

 

[BusyMom5]

My DD2 had a lot of issues like this.  I removed all dairy from my diet (nursing) and it did help, but she still had issues.  She was like your son, if she spit up, she would choke on it.  I swear if she did not sleep beside me she wouldn't have made it!  One night she was thrashing around, but not making a sound.  She was completely choking on spit up and Ibelieve if I had not heard her hitting the side of the basket she would not have made it!  I had her in a Moses basket propped up on text books to get the right angle (what my Dr. recommended) even when she was 6 months old.  I wish they had a wedge thingy back then!  You can also incline the bed, put one end on one setting, and the other end on a lower setting to make the angle.  I still would keep him in your room, so if there is an issue at night you will be able to hear!  It's so scary having a baby with choking issues. 

[bethben]

My friend's daughter has had severe reflux for all of her 4 years.  She recently started adding enzymes to her dd's diet and she has been weeks without reflux.  Her daughter wasn't able to produce the enzymes she needed in order to break food down so she could digest it.  This could be in the form of a green drink or just adding a powdered enzyme.  I'm not sure how you would feed that to a baby. I would agree with trying to find out if what he is eating is causing his tummy to be upset.  

 

You also said he was delayed?  Is there more going on there?  Sometimes muscle delay can also cause slack muscles inside which would make the muscles surrounding the esophagus not work properly.  My ds had this issue and needed surgery it was so bad.   You might want to ask questions about the threat of aspirating.  I would get a medical grade sling like those suggested above and not worry about squishing anything.  I'd rather squish a baby than have them aspirate.  

[Ottakee]

We used the car seat for quite a while.  Doctor approved.

 

Meds and changing formula also helped.  My one with severe reflux had delays, etc. Has he seen a neurologist or gastro?  Those might help as well.

[SparklyUnicorn]

At five months can he sleep on his belly with a smaller wedge under the mattress?

 

I can't imagine this being good.  If he is puking a lot, he'd end up face down in his puke.  That would not be fun. 

 

I had a puker.

[Lawyer&Mom]

What are you afraid of with the Rock'NPlay? We had a custom wedge from the hospital and I hated it. She would flop sideways all the time. We switched to the Rock'NPlay and it was a godsend. She was in it until 5.5 months. The only reason we took her out was because she was hitting the height and weight limits. If he still fits the Rock'NPlay, I'd stick with what works.

[MiMi 4under3]

I can't imagine this being good.  If he is puking a lot, he'd end up face down in his puke.  That would not be fun. 

 

I had a puker.

 

Yeah I thought of that, but it's going to be all over him anyway. A wedge might help the spit up to run down instead of accumulating near the face. 

 

DS had reflux. We never put him on the meds he was prescribed, but at night he went to bed face down, mattress elevated, and a towel under his torso, tucked under the mattress. Sometimes I'd change the towel in the middle of the night, other times I'd just move DS to another spot, depending on the severity of the spitup.

[Pamela H in Texas]

Thanks for all the answers so quickly!  

 

Squishy is still technically a foster kiddo (and will be a few more months).  That limits what I can do a little bit.  For example, I *might* consider putting him on his tummy if he were mine, but I absolutely cannot put a child down on his tummy.  Also, I wanted to try donor milk, but I can't do THAT until he's mine (by which time, he'll probably be off milk, though maybe CPS would give me permission once THEY are the only legal "parents.").  

Anyway, but he won't/can't move his face if face down either.  When he has fallen asleep in tummy time, he does so face down, not turned to the side <sigh>  So that might not help the drowning in spit up thing.

 

Squishy is on medication for reflux. We've tried a few things, but he is on two medications currently.

He also is on formula #7 (which is why I'd like to try donor milk).  
He saw GI doctor, upper GI series was good.  

 

His delays seemed quite significant at first.  He is making good progress and is only a little delayed now though he does have some strange gaps.  Neurology has tentatively discharged us (as long as MRI next month is clear).  He *can* roll both ways, doesn't push up on hands though, is low on motivation and endurance :)

 

I think dr wasn't worried about the bed issue as he was fine with me swaddling him in the rock and play. Now we need to graduate to something else.  I really wish I had picked up the ResQ wedge at the just between friends sale instead of putting it back once we got in line!  

 

Both babies are currently in our room.  :)

 

[magic]

We elevated one end of the crib and, later, tne bed for our son.  We first used a 2 by 8 under one end of the bed to have the end elevated a bit.  Over time we increased the heighth but adding books or boards to find what seemed to work best.  Once we found the best heighth, we bought large cedar blocks that we had cored out so the legs would rest easily in them.  My niece had severe reflux and we did the same for her when she would stay over.  She had a pack n play here and we would elevate an end with books for her. 

[Ottakee]

Ask about the car seat.  Our foster care rules allowed that with the doctor's note.

 

One thing to keep in the back of your mind is mitochondrial issues.  The weird gaps, low endurance, etc. all fit in with out mito history. You might ask your neurologist about running a mito panel now before you get to the adoption (just for extra help in the future if needed).

[zoobie]

Thanks for all the answers so quickly!

 

Squishy is still technically a foster kiddo (and will be a few more months). That limits what I can do a little bit. For example, I *might* consider putting him on his tummy if he were mine, but I absolutely cannot put a child down on his tummy. Also, I wanted to try donor milk, but I can't do THAT until he's mine (by which time, he'll probably be off milk, though maybe CPS would give me permission once THEY are the only legal "parents.").

 

Anyway, but he won't/can't move his face if face down either. When he has fallen asleep in tummy time, he does so face down, not turned to the side <sigh> So that might not help the drowning in spit up thing.

 

Squishy is on medication for reflux. We've tried a few things, but he is on two medications currently.

He also is on formula #7 (which is why I'd like to try donor milk).

He saw GI doctor, upper GI series was good.

 

His delays seemed quite significant at first. He is making good progress and is only a little delayed now though he does have some strange gaps. Neurology has tentatively discharged us (as long as MRI next month is clear). He *can* roll both ways, doesn't push up on hands though, is low on motivation and endurance :)

 

I think dr wasn't worried about the bed issue as he was fine with me swaddling him in the rock and play. Now we need to graduate to something else. I really wish I had picked up the ResQ wedge at the just between friends sale instead of putting it back once we got in line!

 

Both babies are currently in our room. :)

Donor milk won't help with protein intolerances, unfortunately. If it's an MSPI situation, even Alimentum may not be hypoallergenic enough. Have you tried Elecare or Neocate? I can't remember which is the "most" hypoallergenic. Good luck!

[sbgrace]

My son had mildish low tone (metabolic condition affecting mitochondrial function was finally found when he was 3.5, keep metabolics in mind/the screens don't catch all of it) and severe reflux.

 

I used a Tucker Sling and wedge when he was little along with PPI medication. I didn't feel the sling squished his parts.http://www.tuckersling.com/

 

He still sleeps with the head of his bed elevated significantly at 10.

 

[SeaConquest]

We used this with my puker:

 

http://www.kanoe.us/

 

 

[HS Mom in NC]

My daughter had what was labeled colic and reflux.  A chiropractor who had experience with babies solved that problem within a couple of weeks.

[RKWAcademy]

My twins were preemies with severe reflux. Prescription meds, which might have been liquid Prevacid, helped. For the better part of their first year, both of mine slept in a chair like this: http://amzn.com/B00CWN3FRS

 

When they were in cribs, I did like previous posters and lowered one side of the crib to make an incline. Wedges we bought were worthless. Hang in there!! It is so frustrating but it will get better when they get bigger - even though it seems growth is impossible with all the throwing up!

[kathkath]

Prop up 2 crib legs on bricks.

[SparklyUnicorn]

I am truly baffled by the tummy suggestion though.  I have acid reflux myself and the absolute worst position I can think to be in would be on my stomach.  It would just be horrid.

 

Sorry...had to put my 2 cents in there!

 

 

[Carrie12345]

Can you ask for a referral to a pediatric gastro?

It took a LOT for me to finally get that referral for my youngest, but the gastro had him pegged and on the mend quickly, all things considered.

Angling may help the distress, but it doesn't address the real problems.

 

ETA: Just saw he saw a GI. A scan will not necessarily rule out allergies/intolerances, though. I'd want a second opinion.

[zoobie]

Sorta off topic but we used Alimentum with ds (colic, probably due to protein sensitivity) and considered it recently for dd. dh found some Similac product labeled for colic. He was horrified by the ingredient list. Not sure what they were before and if this is their new version of Alimentum but first ingredients were HFCS and sugar??

Are you sure it wasn't corn maltodextrin? From the Similac website:

Corn Maltodextrin (35%), Casein Hydrolysate [Derived from Milk] (18%), Sugar (15%), High Oleic Safflower Oil (10%), Medium-Chain Triglycerides (10%), Soy Oil (8%).

 

That's the broken down corn protein. They have to use some kind of shelf-stable protein, and corn is used in the allergenic formulas. The soy in this definitely wouldn't work for my DD, or most MSPI babies. Sugar is in all formulas.

 

The additive for colic is a probiotic whose name is slipping my mind... It's supposed to work very well and is hard to find on its own, especially not derived from dairy or soy. I suspect they added it to their premium formula to sell more of it rather than sell the probiotic separately which would be cheaper.

 

Probiotic: Lactobacillus reuteri

https://www.gerber.com/products/product/gerber-soothe-colic-drops-probiotic-supplement

[Caclcoca]

We also propped the end of the crib up with our reflux baby (13 years ago).  We used books and a piece of wood.  I think we did that until he was about 15 months old.  He started turning himself over to sleep on his side at about 6 months.  The doctor told us not to put him to sleep that way, but if he was putting himself in that position it was ok.  Good luck finding something that works.

[Incognito]

Do you buckle your baby in the rock n play?  You can stop swaddling the legs and buckle in the regular way and he'd likely be secure.  I understand if he is getting too big - I don't remember when that happened but if you aren't there yet, you can use it  longer.

 

[Pamela H in Texas]

GI said milk intolerance, said to stay on Alimentum though Squishy hates it, said to use Beechnut rather than Gerber rice cereal.

WIC nutritionist said to try Nutramigen, that it is the same without the nasty smell/taste.  Asking GI dr in morning.

He has gained weight on Alimentum but he fights eating and I have to feed him while he sleeps. 

 

He didn't gain on soy.

 

 

[zoobie]

GI said milk intolerance, said to stay on Alimentum though Squishy hates it, said to use Beechnut rather than Gerber rice cereal.

WIC nutritionist said to try Nutramigen, that it is the same without the nasty smell/taste. Asking GI dr in morning.

He has gained weight on Alimentum but he fights eating and I have to feed him while he sleeps.

 

He didn't gain on soy.

Is the rice required? My eating rice caused my DD to projectile spit up across the room! I was able to eliminate basically everything to start ruling things out. Maybe they can prescribe an elemental formula to mimic that for you and Squishy?

[Ellie]

GI said milk intolerance, said to stay on Alimentum though Squishy hates it, said to use Beechnut rather than Gerber rice cereal.

WIC nutritionist said to try Nutramigen, that it is the same without the nasty smell/taste.  Asking GI dr in morning.

He has gained weight on Alimentum but he fights eating and I have to feed him while he sleeps. 

 

He didn't gain on soy.

 

About 30% of babies who cannot tolerate dairy also cannot tolerate soy.

 

Since Squishy has some food intolerances, I'm thinking that avoiding anything except the specialty formula would be a really good idea; IOW, no rice. Why are you feeding cereal already?

[Grover]

my refluxers slept in a nature sway hammock.  DS on his back, DD thoroughly wedged on her side.  It was a life saver.  She now (5) sleeps on a raised mattres with a tri pillow under her normal pillow.  Life was a LOT easier once we sorted out the food allergy side of things (wheat and dairy) but she still refluxes. 

[mamakelly]

What about using a Dexbaby Day Dreamer?

 

http://www.toysrus.com/buy/infant-positioners/dex-day-dreamer-sage-dd-grn-29311736

[Pamela H in Texas]

Reflux babies often have rice cereal put in their bottles as a thickener to encourage the food to stay down.  

Pediatrician originally encouraged it. GI dr backed it up.  Just following orders.  

I did worry about it, but would do anything for him to keep more food in him longer.

We don't feed babies baby food at this age.  

[Ottakee]

Reflux babies often have rice cereal put in their bottles as a thickener to encourage the food to stay down.  

Pediatrician originally encouraged it. GI dr backed it up.  Just following orders.  

I did worry about it, but would do anything for him to keep more food in him longer.

We don't feed babies baby food at this age.  

We had to do that too.

 

Also, everyone else remember that Pamela is the foster mom here..........which means, at least for the time being, she has to follow doctor's suggestions, foster care rules, state regulations, etc. and on and on.

 

I had to get the doctor to write down that they wanted baby to sleep in his car seat when he was only 6 weeks old with 4 broken bones.  We needed a doctor's note for alternative immunization schedules, etc. as well.

 

Sometimes you might not agree with something but you have to follow it.  Just another challenge in the world of foster parenting.

[Ellie]

Reflux babies often have rice cereal put in their bottles as a thickener to encourage the food to stay down.  

Pediatrician originally encouraged it. GI dr backed it up.  Just following orders.  

I did worry about it, but would do anything for him to keep more food in him longer.

We don't feed babies baby food at this age.  

 

:thumbup1:

[mom2jjka]

My best friends DD had severe reflux.  She says that this hammock style bed was a lifesaver for them.

http://www.babyhammocks.com/index.php?route=common/home

[Carrie12345]

If it's a milk *protein intolerance, it's entirely possible he needs a step above "sensitive" formulas and those that contain soy.  Ds4 had to be on elemental formula from around 2 months until he passed "food" trials around a year.  It was a complete nightmare to push through private insurance, so I imagine it would be even harder with state!  But it was 300% worth it to get him healthy and growing.

[prairiewindmomma]

We had to supplement my breast milk for a while with my reflux preemie just because she tired so quickly with nursing. 

 

FWIW, Nutramigen is much easier to tolerate than than Alimentum, but the elemental formulas are something I would push if things don't change quickly. They are expensive, but the dairy/soy co-allergies combination is becoming so much more common. I'd also look at the probiotics angle. They have powders you can sprinkle in, or you can just open up caplets. 

 

Also, I'm not pushing solids but I do want to share that the allergy research has changed a bit in the last year or two. Our ped allergist has changed his position and has become an early introducer of some foods whereas before he was a late introducer. We did all fruits and veggies first and then introduced grains. If you have other tone issues going on, I'd for sure look at oral tone, etc. but if you are a couple of months from now and still fighting the calories battle, avocado may be a good idea.