- This topic has 4 replies, 1 voice, and was last updated 13 years, 7 months ago by Anonymous.
March 21, 2007 at 12:52 am #28019AnonymousInactive
I’m so sorry to hear about your ordeal. I also had/have a child with a LOT of sleeping issues due to reflux and multiple protein intolerances. I’ll just make a list of my thoughts so I don’t forget anything:
1. In your shoes its absolutely essential to know your meds are working. I wouldn’t mess with the compounds at all. I’d try for using the solutab like Lori suggested, or if possible, look into other ppis. My son is on Zegerid– after a lot of misery on compounded prevacid we tried zegerid and it’s worked wonders for us. It’s expensive, so you want to make sure insurance can cover it, but I would highly recommend it.
2. Lucas took a turn for the worse when we started solids. At the time, I didn’t quite realize what was going on cause we didnt’ have his reflux meds sorted out or any of his protein intolerances identified. I would DEFINITELY WAIT with solids if you are noticing that things are worse. If he’s hungry then at least you know he’ll eat the bottle or will nurse. I know this sounds unsympathetic to him drooling over your food, but at seven months he doesn’t NEED solids….he would be fine without them. If you are nearing the end of your rope, as your messages sound, then backing off solids is a fine thing to do temporarily. I stopped all solids when Lucas was 8 months (after having introduced them and after he loved them) adn nursed exclusively until he was 10 months old so I could try to sort out what was going on. It was too much for me to think about was it his food, my food, the meds, which meds, which dosage wasn’t high enough, etc. etc. He caught up just fine with eating and I at least had some time to try to figure things out. I needed to remove as many variables as possible to try to narrow down what the real problems actually were.
3. There are other reflux meds to use in conjunction with ppis. We used mylanta cherry supreme in the night a LOT. Some folks use a H2 blocker like zantac or pepcid at night but the ppi during the day. We also tried carafate for a brief time when teh sleeping was very out of control (waking every 45 mins all night). It’s an older med and coats the stomach “like teflon” — it seemed to help for the time we were on it. He took it only at night before bed. There are non-western meds that work like meds….like liquid aloe vera. We tried that too and it helped a lot. If you are open to this kind of thing, do a search and you’ll find my posts. Liquid 100% organic Lily of the Desert was our brand.
4. We had a ph probe done, the results really gave us a picture of what was happening and helped me to feel like I wasn’t losing my mind. We found out he was refluxing an average of every ten minutes all day and all night. Imagine if you found out this kind of info? I mean, it at least let us know that there was a solid REASON behind all of this horrible behavior. I think it gave me more sympathy and definitely helped my husband to understand and to get us on teh same team/page with responding to his discomfort.
5. If you realize after looking at the MARCI kids meds calculator that he’s on a low dose….BEG your doctor to change it. Print out the info, contact MARCI kids, talk to your doctor and tell them that you aren’t exaggerating. Keep a diary of when he wakes up for a few nights. I still have two pages of scrawled writing in a list of the times I was waking up for a few nights in a row. If they flat out refuse to listen, GET ANOTHER SPECIALIST if at all possible. We switched specialists and I was TERRIFIED to do it, but she refused to change his dose, refused to change from compounded prevacid and told me that I needed to “get used to him waking up– that’s reflux.” We are much happier now with our new specialist.
6. Are you doing all the behavior associated things like sleeping him elevated, upright after meals for 30 minutes that kind of thing? Have you tried getting him to sleep in a exersaucer or jumpy thing? Probably not the safest thing but Lucas slept so much better upright. I once noticed he slept so well in a borrowed Kelty frame backpack that we walked to get him to sleep and took the backpack off and propped it up on teh floor and left him to sleep there. Have you tried tummy sleeping? Lucas at 7 months was sleeping with me in a queen sized bed propped up on pillows. I mean, the kid was WAY propped up. But he couldn’t move much at that age so at least he stayed propped up.
7. Lucas didn’t crawl until nearly 10 months. My neice who is completely normal and no reflux or anything just started crawling and is 11 months old. Their doctor isn’t concerned in the slightest. Some kids are later with these things.
8. What Lori said about time is so true. Time will really be the best medicine. But how to get from here to there? Do you have family nearby? I kick myself for not begging my family to help, as they live a long way away and would have had to fly out to see us, I didn’t push the issue. But when you are completely DONE and too tired to function, can dh help, or is there a family member who is willing to really help? I don’t mean come over and eat and question you about what you’re doing “wrong”– but really help with the baby so you can take a nap?
9. Sleep whenever you can. Hopefully this is your first, and you don’t have other kids to take care of. I couldn’t imagine doing what I did with Lucas with other children (he’s our first, thank goodness) and I respect the moms on here ten-fold who had refluxers as #2 or even #3…or #9! So, again, sleep WHENEVER you can. Let the house rot, you need your sleep and your baby needs you more than the dishes, the floors, etc. My house was a disaster, and I really mean it. I’m not exaggerating.
10. Look into probiotics. They make them for babies– do a search on this site for our discussions of it– but a lot of us use them with our refluxers. They are great for the gi system. It’s the healthy bacteria we’re supposed to have in our systems that we often don’t have enough of….They make an infant powder, I mixed it with water and gave via syringe. It’s really helped. Our brand was Nature’s Way Infant Primadophilus. It can be mixed with formula.
11. You ask how we coped…I was very fortunate in that I didn’t have to be at work each morning so although I took on all the night duty (and I mean ALL of it) and nursed round teh clock and hardly slept….I didn’t have to rush off in the morning. Which was good cause I noticed I was in a fog most days until about 1 pm. I was on the elim diet so I couldnt’ have caffeine or coffee or chocolate or lots of things that help you wake up. Take it slow if you can. If you are at home with him, take it easy on yourself and go slow. We had a lot of days in pjs until 2 pm. It just isn’t possible to function like the rest of the world and you shouldn’t expect yourself to be able to. On the other hand, getting out always made me feel better so a balance is nice. Just be kind to yourself. If you are working….then hats off to you. I think I would have had to quit or take a leave of absence or something. I honestly could hardly function some days.
12. Are you using a sling or baby wrap or carrier? This saved me cause I coujld keep him upright and carry him around and have my hands. At 7 mos I used a ring sling of cotton fabric and used it every single day until he started walking which was around 14 1/2 months…but even then I still used it a lot until maybe 16 months.
13. Use this site and pick our brains. I’d say for me, this site was more of an emotional mooring than many other people in my life (and I consider myself to have healthy friendships, strong female friends, friends with kids, a good marriage, etc.) NO ONE understood, except for these mothers. NO ONE got what was going on and the best of friends with good intentions just didn’t know what to say. We were a mess I was scared of not knowing when it would end and what was really wrong and losing hope….and these women really helped me keep my sanity. If you have a friend with a refluxer– bond with her! But for me, all my friends with refluxers are on this board. And trust me if any of them lived within striking distance I would have been in their living rooms FAST!! Seriously, you have found a wonderful circle of women.
13. Write a list of things you can remember, what age he started what med and what dosage, when it changed, when exactly you started solids and what happened, etc. etc. It will help you remember cause it starts to get confusing and it will help if you ever switch docs or end up with an allergist or what ever. Also, food logs are great, for what he ate, what time it was that he ate, when he slept, for how long, etc. etc. A sleep log too, when he goes down, when he wakes up, and HOW he wakes up, was it screaming, crying, happy but awake, etc. These logs are invaluable.
I’m out of suggestions for the moment, but it seems like there is a lot you can do, which is always good news! It might seem unsurmountable, but it’s NOT. Hopefully one of these ideas helps in some small way. Sorry for rambling. I have a lot to say about not sleeping!! It’s rare that I see someone like you on the boards with a similar story line. Hang in there.March 21, 2007 at 9:11 am #28034AnonymousInactive
First of all I am so sorry that you have to experience these issues with your little one. It’s hard enough being a parent without these obstacles. While I can’t feel all of your pain I do understand a lot of it. My little one had terrible eating issues and until he was given a high dose of Prevacid, he ate unwillingly in pain every time. He would try to eat and just cry out of pain/frustration. Luckily we found a wonderful GI at Georgetown Hospital that taught us that babies/children metabolize medicines 3-4x faster than adults. I’m sure you’ve heard this before. One thing that may help is a H-2 blocker at night like Axid to help keep the acid down. Sleeping in a swing might help keep the acid down as well. We added 1-2 tsp of rice cereal per ounce of fluid for each bottle to keep it in his tummy…that seemed to help. If he can’t tolerate the rice cereal there is a product called “Thick-it” that can thicken foods well. I believe you can find it in the grocery stores and if not then call a local Occupational Therapist office and see if they can direct you to where you can purchase it.
I was told that you should dress your refluxer in clothes that do not bind around the belly. No waist bands. Lots of burping becuase air gets in the tummy just from crying. So, burp before you’re going to feed. Try a softer spoon. My son didn’t have any interest in the solid foods until I used a spoon that had a rubberized feel to it instead of hard plastic.
Have you tried to have your child in bed with you at night? I know it helps my son when he feels sick or is upset to just be close to me/my husband. I think even our smell calms him.
I know that my suggestions are simple and that your child MAY have larger issues but even the small things help sometimes. Because of our larger Prevacid dose my son went from only eating in his sleep to eating awake and getting interested in solids. He’ll still only eat 4x a day but he seems to be eating without pain now.
I think your main goal right now is to find a doctor that is cutting edge that isn’t afraid to dose your child higher. You might contact the marci-kids website to see if they know of any doctors in your area that comply with thier study or research. Much luck to you.March 21, 2007 at 9:20 am #28036AnonymousInactive
Hi Aiden’s Mommy,
Glad to hear that the endo came back normal but can also understand where your frustrations must be!! I am struggling with the potential that they won’t find anything on Corinne’s endo either and I’ll just say to myself “Now what?!?!” Keep faith though, it’s always trial and error with our lil’ refluxers! I will keep you all in my thoughts!! Take care!March 21, 2007 at 9:22 am #28037AnonymousInactive
Aiden was on Axid as one of his first medications and it didnt help AT ALL and then after he was on prevacid for awhile a dr. thought maybe it wasnt working and tried Zantac but that didnt help either. I hate to double a medication for him but I know he is hurting. When we had the upper GI done it showed he had 3 reflux episodes within 3 minutes. So basically every 3 minutes he was refluxing while eating. That was with being on the prevacid. So that tells us something right there. Im considering maybe we need to change his medication. Im going to check marcikids. I want to thank all of you for your comments and suggestions and your stories they have helped me tremedously just knowing that there are others out there going through the same thing. I do have a friend actually that has a child with the same issues though he is 2 now. That is actually how I found this website. She told me about it. Im thankful that she is there to listen as well as all of you.March 24, 2007 at 7:43 am #28362AnonymousInactive
Well Aiden’s Biopsy came back and showed inflammation in his intestines. The dr didnt seem to offer many suggestions–he said the only treatment really is for him to be on neocate which he is already on. Anyone else get these type of results, what was the outcome?
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