He's had it since day one. I took him in last week for a upper GI barium swallow exam. There were a total of 5 medical professionals (techs, docs, ect) in the room and after the first swallow and watching the screen they all said aloud and almost in unison "WOW! He DOES have really bad reflux!" Thanks, I knew that! :) It was bad too. On the screen you can see the barium being swallowed and it immediatly comes shooting back up. We've tried EVERY type of formula after we switched him off breastmilk at 3.5 months. He's 5 months now. He been on three different reflux medicines. He is SO extremely fussy ALL. THE. TIME. he has his "moments" where is a complete doll, cooing and smiling and just wonderful but he will scream every day for hours and hours on end. We've tried gripe water, baby massage, more food, less food, food more often (but NOT less often as he screams even more), baby wearing/playing/holding, different positions, rice cereal with formula mixed in and given by spoon and also a tablespoon or more of it in his bottle. We've put him in his bouncy seat vs on his tummy or in his crib. He does like noise we've found. BUT I refuse to use the vacuum because it will kill his hearing over time. I do have this sound machine that came with the bouncy seats and it works for several minutes...usually. Any other suggestions? I think I covered most but I'm sure I'm leaving something out. Oh and we're now on EleCare hypoallergenic unflavored formula...only by rx! Seriously? prescription formula? I didn't even know that exsisted. Too bad our insurance DOESN'T cover it and it is $58.99/14 oz can. We will be paying about $550 a month at that rate! He goes through a can in two to two and a half days. And the other thing we've tried is A.R. formula...added rice...for thickening it up. We've used all level nipples too for faster/slower flow.
The doc on Monday for our GI consult was like well have you tryied xyz, you know. I looked at him and said "if we hadn't tried everything we wouldn't be here. THAT is why we're here." Quincy was actually screaming at the time and all I could see/do is watch the doctors lips moving-unable to hear a single utterance that came out of him mouth. lol. He's a little stinker. I think he's got a combo of SEVERE reflux (you should have seen the x-ray) and hypersensitivity. He does like dark and quiet, thus the basement for napping sometimes but I hate to do that TOO much. We do have a nice finished basement but he needs to be with his sisters in his bed more often than not. Poor guy!
Quincy the day I took him in for his upper GI.
Everyone in the waiting room and hospital employees were having fun with Q. He was in a good mood for the test (thank goodness) and everyone said "oh, he's so cute!" and "oh, he's such a good baby!" ;) I just shook my head yes and smiled. He CAN be good, really! He is so sweet and I hate that it has taken even this long to try to get to the bottom of his pain and terror screaming. I really hope this new formula works. If it does it will be worth every single penny.
On anothe note Adelyn woke early from here morning nap and I have her in the baby bjorn right now and rocking her side to side as I type. She is usually a great napper, not sure why she woke up but right now she is so stinkin' cute! I can see her in the reflection of the computer falling asleep. Her eyes are heavy and she just dozzed off! What a sweetheart.
Fortunatly all our babies are super sweet and absolutly adorable. The girls cry when they're hungry or too sleepy-sometimes not even then. They've learned to suck their fingers and wait for their food most of the time (Quincy? Well, poor little man is still working on that. He pretty much screams bloody murder every 1 1/2 - 2 hours after his feedings as if he's already hungry again. No self-soothing there.) The have also learned to just hang out and fall asleep on their own while playing at their play mat/jungle gym, bouncy seat or jumperoo! I will often be holding one baby and look over to see Adelyn or Ellie drifting off. I try to get them in their beds before they fall asleep though. Just trying to form good habits. They are really good about going to sleep in their cribs now. Ellie will suck her two fingers (it is SUPER cute!), Adelyn will suck her hand or fingers and Quincy likes his thumbs. Okay, got to go put this girl down and see what I can accomplish before the next feeding!
We're taking suggestions/things that have worked for you. Meanwhile we're trying to argue with our insurance company and somehow get the formula partially covered. Online by the case we can get it for closer to $35.00-we just hate to buy it by the case if it turns out not to work and we're stuck with hundreds of dollars worth of formula gold.
The doc on Monday for our GI consult was like well have you tryied xyz, you know. I looked at him and said "if we hadn't tried everything we wouldn't be here. THAT is why we're here." Quincy was actually screaming at the time and all I could see/do is watch the doctors lips moving-unable to hear a single utterance that came out of him mouth. lol. He's a little stinker. I think he's got a combo of SEVERE reflux (you should have seen the x-ray) and hypersensitivity. He does like dark and quiet, thus the basement for napping sometimes but I hate to do that TOO much. We do have a nice finished basement but he needs to be with his sisters in his bed more often than not. Poor guy!
Quincy the day I took him in for his upper GI.
Everyone in the waiting room and hospital employees were having fun with Q. He was in a good mood for the test (thank goodness) and everyone said "oh, he's so cute!" and "oh, he's such a good baby!" ;) I just shook my head yes and smiled. He CAN be good, really! He is so sweet and I hate that it has taken even this long to try to get to the bottom of his pain and terror screaming. I really hope this new formula works. If it does it will be worth every single penny.
On anothe note Adelyn woke early from here morning nap and I have her in the baby bjorn right now and rocking her side to side as I type. She is usually a great napper, not sure why she woke up but right now she is so stinkin' cute! I can see her in the reflection of the computer falling asleep. Her eyes are heavy and she just dozzed off! What a sweetheart.
Fortunatly all our babies are super sweet and absolutly adorable. The girls cry when they're hungry or too sleepy-sometimes not even then. They've learned to suck their fingers and wait for their food most of the time (Quincy? Well, poor little man is still working on that. He pretty much screams bloody murder every 1 1/2 - 2 hours after his feedings as if he's already hungry again. No self-soothing there.) The have also learned to just hang out and fall asleep on their own while playing at their play mat/jungle gym, bouncy seat or jumperoo! I will often be holding one baby and look over to see Adelyn or Ellie drifting off. I try to get them in their beds before they fall asleep though. Just trying to form good habits. They are really good about going to sleep in their cribs now. Ellie will suck her two fingers (it is SUPER cute!), Adelyn will suck her hand or fingers and Quincy likes his thumbs. Okay, got to go put this girl down and see what I can accomplish before the next feeding!
We're taking suggestions/things that have worked for you. Meanwhile we're trying to argue with our insurance company and somehow get the formula partially covered. Online by the case we can get it for closer to $35.00-we just hate to buy it by the case if it turns out not to work and we're stuck with hundreds of dollars worth of formula gold.
Hi, My name is Kate and when I was pregnant I was looking for blogs about pregnancy and babies and somehow came across yours. I have been following your blog ever since as I think your story is amazing! Anyway my son born 10/8/10, has severe reflux and the cows milk protein sensitivity as well. He was diagnosed at 3 weeks old. He is now 8 weeks and we are finally getting on the right track. What has worked for him is Neocate (same as Elecare), prevacid, axid, oatmeal thickened cereal (doesn't cause constipation) and sleeping swaddled on a acid reflux wedge (Tucker sling) and also in a dark, quiet place. I also play this on my iPhone to put him to sleep
ReplyDeletehttp://www.youtube.com/watch?v=NDVSqq_BkFg
it is vacuum and hair dryer sounds which he likes!
Our GI suggested the oatmeal as it is better than the rice constipation wise. And we noticed the change once we switched from Alimentum to Neocate.
We had a choking incident last week which landed us in the hospital and thus brought in the GI specialist. My son had a pH probe study which confirmed severe reflux.
It is hard to see them in pain and especially knowing that they can be such cute babies when they are not refluxing!
I don't have much to offer for suggestions--poor little guy (and mom!) My daughter did have reflux too (and the constant spit-up with it), but it sounds like Quincy's is more severe. Her's was somewhat better with Prevacid, but we didn't see much for real improvement until she became fully upright and started eating solids. She was a bit of a chunky baby and didn't even roll over until she was 8 months old! But she took off quickly from there and becoming mobile was the best thing that ever happened. At night, she could only sleep on her tummy and would wail for hours if I tried putting her on her back. I'm assuming that was reflux related too? Her pediatrician okay'd the tummy sleep, so we went with that--and eventually when she did learn to roll over it didn't matter how I laid her down she always went to her tummy.
ReplyDeleteI think with most kiddos they grow out of it...eventually. In the mean time you just do the best you can and be adaptable. I found too, that just because something didn't work last week doesn't mean that it won't work today.
We didn't get far enough to know if there are other medical options for extreme cases, but I'm sure your docs have gone over possible next steps if the formula and other things you're trying just aren't cutting it. I know it just breaks your heart to see your little guy so unhappy and I know that it is very frustrating and there are times when you just have to put baby down and walk away to regain some sanity :). I hope you see some relief soon.
I know it seems simple and I'm surprised no one has said this, but break a chewable acidophiles in half, put it in a little medicine measuring cup, put in a few ml's of water, and let it set till the acidophiles is also liquid. Then suck it up in a syringe and give it to Q. Totally got rid of my son's colic AND acid reflux- it just helps him so much with all his stomach/acid problems. When he gets super fussy, I realize he hasn't been given my son his acidophiles yet. So give it a try! It might just be the trick! :) Good luck!
ReplyDeleteWe used something like this:
ReplyDeleteusehttp://www.oxfordpramcentre.co.uk/product_Doomoo-Seat-Original_1588_0_index.phpd
It really helped keep his tummy happy more often.
Hi there!! Ive been following your blog for a while, but not sure how I found it! My daughter was on Neocate, which is similar to Elecare, but just a different manufact. I was able to get our Neocate which was usually around $38/can here in Omaha off Craigslist for $20/can.All cans were sealed and in good shape.There is no way we would have been able to afford it otherwise. Our insurance company would not cover it unless she was tube fed, which thankfully we didn't have to do. I think in 9 months I only paid full price for 5 cans total. We also did the solutab prevacid. According to our GI doc, the liquid form doesn't work as well and loses its effectiveness after about 7 days. Same with prilosec. I really hope your little man feels better soon! We spent hours upon hours walking in circles around our house...we didn't ever really get the relfux under control until she was older. She just now at 2 went off Prevacid! Feel free to email me if you have any questions. My daughter was diagnosed with a milk/soy protein intolerance aka MSPI.
ReplyDelete