Posted By Posting
Dec 11, 2011
baileys mama
I need a reality check mums pleeeezz!!!
Hi mommies out there with babies controlled or not controlled. I need a reality check and give permission for you to be cruel to be kind. I need to know realistically where I am up to from your experience with your little ones. I need to know from Baileys current state whether my son is 'really' likely to be able to manage/alleviate his symptoms and start living a stress free, great night sleep and great quality of life. For me, when I know the reality of what will/should improve and what wont, I can better cope without wondering 'will it get better or not'. Bailey is 9 months old and on 1ml x3 day ranitidine and 10ml x 2 day omeprazole and clearly not controlled. He cries fequently at night, tossing and turning excessively, smashes head hard on cot, sleeps with bum up in air, but all this with his eyes closed. If left to long like this he wakes and is quite distressed and im up for a couple of hours before I can get him to go back to sleep. When hes up hes fine (hes crawling and standing). Even when I go in to rock him back to sleep his eyes remain closed but hes distressed, crying, pushing me, arching his back, sometimes hiccups, coughing, choking. Its extremelly hard to settle him, even our bed doesnt halp anymore. He hates the carsea 9even though we distract him contsantly with toys). Will go in it it but after a certain time 5-15 minutes he becomes distressed, pushing his tummy and chest against the restraints. Within maybe 1 minute he goes from winging to crying to coughing to choking to projectile vomit. Its very quick so travelling is something I rarely do anymore. Nappy changes are still really hard but a little improved with use of pillow and many toys as distractions. He will never lie on his back and is obsessed with standing anywherre he can. Hes still refusing to swallow solids even though weve seen a speech pathologist (reccommendation from paed and hes also starting to refuse his milk and I am having to work hard to get it into him. He sleeps better in day than night and doesnt seem to have restlessness during day. He sleeps all his sleeps in his cot and sometimes in the pram when going for a brisk walk but never will sleep in the car so my window for getting out is pretty much minimal. S in realist guys from your experiences as I understand now there problems are associated with his reflux will this all just go away when he is on right doses and combination of meds? Or are some of these things just gonna be here forever? Also with night sleeping whhat is the reality I should hope for? Is the 10-12 hours no fuss sleep ever going to hapen? This 1-3 hours since birth and all the crying and fuss breaks my heart for him but im absolutely exhausted
Dec 12, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Some questions for you...

Have you seen a GI doctor? Have you had any testing done (like an upper GI)?

What formula is he on? How are you spacing out the meds? They can't be given together.

I'll just give you some background on my experience. all kids are so different. For my first refluxer....he was on prevacid since one month. At 6 months we realized he was allergic to cows milk due to projectile vomiting when I attempted to supplement with the BFing. I cut out dairy and he was a new child that actually slept. Before that, he never, ever slept. Cried all the time, threw himself stiff as a board. At one year, we discovered he was allergic to soy. I continued to BF and cut both out of my diet. These helped immensely. His sleep improved at 7 months. He is 4.5 and still on reflux meds.

My second refluxer had a feeding aversion and I never gave her dairy/soy through my BM. She never slept either and would be up for hours on end at night. I saw our GI doctor and did an upper gi...it showed her anatomy was not right and her stomach was not attached properly. she had surgery at 9 months. By 10 months she was finally sleeping and eating better. She was also on zegerid. Both my kids also slept upright on a seated wedge made by an occupational therapist til 10 and 11 months. They could not lay flat at all and would wake up immediately.

I've been told that reflux peaks between 4-6 months. If you are still having so many issues at 9 months with very little sleep, very poor eating, I would seek more help from specialists. I am sorry you are having so many troubles.

Dec 12, 2011
baileys mama
Hi Manqoqal, Thanks so much for your response. You have really had an extremelly rough time and 2 children with diferent issues but both extreme, I dont know how you survived :-). Bailey has been seeing a paeditrician that the GP referred us to only 10 days ago. The GP kept trying to fix Bailey but I eventually said this is ridiculous I want to be referred to a specialist. Since seeing the specialist 10 days ago he switched Bailey fom a lactose free formula to an anti reflux formula. He introuduced omeprazole 20mg day (2 x 10mg day) and he remains on ranitidine 1ml x 3 day (since 5 months age). He saw a speech pathologist a couple days ago as he wont take soids since the beginning but the strategies I have been giving arent working and the speech pathologist did tell me her work wont really work unless he is controlled. My understanding now is that omeprazole can take up to 3 weeks to work and hes on a high dose as it is but there really hasnt been improvement and infact I think in some times nights and days he is worse than 2 weeks ago. I have been giving the drugs seperately but its too hard to space them out as they should. I have to give omeprazole 12 hours apart and ranitidine 6 hours apart but this isnt possible with all the sleeps hes doing in the day and messy nights and trying to get this baby to start solids. Just in the last 2 days im even finding it harder to get him to take his milk. The only way I can get the drugs into him is via milk as he vomits if anything (including pain relief) is put into his mouth and he wont take more than a sip of water so I ant get it into him via water. The specialist and pharmacist said its more important you get it in him so if its in his milk and thats all you can do then thats all you can do. My understanding is you cant give it to him with milk as has to be empty stomach. I also tried giving him just a little and then try to wait to give rest of feed in half an hour but he goes ballistic!!! because hes hungry and if I give him a biscuit to suck on to make him wait for his milk he then wont take a feed. I just dont know what to do. Every minute of our lives is mapped out to trying to get medicine into him, try to get solids into him, to to get him sleeping, etc etc. Right now he crashed because hes so tired and Im still yet to get a dose of ranitidine and omeprazole into him and Im likely to have to wake him to do this which I dont think I should be waking an already tired baby. Its just so dam frustrating and upsetting. Ok vent over sorry
Dec 12, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Hugs to you. I'm sorry. It is very hard dealing with all of this. Changes take a while to see if they are helping. I would focus on getting the omperazole in him on an empty stomach. My DD hated zegerid at first but then came around to like it. I think she realized it was helping her. I want to say I have heard to give zantac 2-4 hours apart from the PPI. I don't think you can honestly space all that appropriately and get three doses in. When we were switching PPIs. I did zantac just once a day and cherry mylanta supreme as needed. Have you had an upper GI done? Yes, it does take a few weeks for the PPI to work and see results.

I lived on a yoga ball with both of my kids. It was the only way to get them to sleep or calm them down by bouncing. It was incredibly difficult and we all shed a lot of tears. Hang in there.

Dec 12, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
One more thing...I'd try a medication schedule like this.

6 am (or whenever baby wakes up for the morning, 7 or 8 am, etc)..Omperazole on an empty stomach

12 pm (lunch time) Zantac

5 pm (before dinnertime) Omperazole

9 or 10 pm (if baby is up late or wakes up at night) Zantac

I'd say the goal is to drop the zantac as that medication rarely offers much relief. I have also done mylanta at bedtime instead of zantac. Not sure what baby's sleep schedule is. My kids were all over the board when they were refluxing bad. My DD would never go to bed before 10 or 11 at night. I'd try to seperate your meds more. When do you follow up with the specialist again? Good luck!

Dec 12, 2011
baileys mama
Thanks so much for you help and advice. Baileys sleep is ridiculously all over the place and there is no routine. I have had to keep an in dpth sleep, feeding, behavioural chart for the specialist to see and I will have done this for 2 weeks when he sees us again on fri. When I look its clear there is no routine, meals are not consistent, sleep times or durations are not consistent, either are night wakings. The last 2 days Bailey has only taken 800ml a day which is 200ml less than the 1000ml day he was taking. Now he starts screaming and arching his back when I present the bottle to him (after hes had an initial feed, he never finishes a bottle and i always keep offering the milk for the rest of the hour and he usually get throught it but now hes acting as if im torturing him). So im letting him go but he wants to feed at night now cause hes not getting enough in the day. He wont take this solids and now hes pulling faces if i offer like its poison or something. I think something is going on with the omeprazole. Bailey was on the tablet form first and for the first 2 days I thought he seemed happier and a little more settled and was hopeful and then it just turned into nightmare and was worse than ever in terms of his behaviour, night wakings, winging, crying and I thought it was the drug so I called the dr crying and said im not giving him this stuff and the dr said its not the stuff doing it. we then thought that because the tablet dissolves poorly that maybe he wasnt even getting the drug and it was his reflux coming through at full strength (he was on ranitidine but stopped it to take losec). So i went back to giving bailey only ranitidine for another week until the specialist started seeing him. the specialist told me to get the omeprazole in liquid form and since weve seen him baileys been on both meds. It seems like the problems I had before have returned and im thinking it must be the omeprazole and im wondering if hes not tollerating it well. hes also again been alot more aggressive than usual and really clawing at our faces especially when hes upset. I know this stuff is babies in general but its excessive both times hes been on omeprazole so im not sure if there really is a correlation. Im going to drop a ranitidine dose until we see specialist on fri so i can space the drugs out better and ill work by best towards epty stomach like you have suggested. I know you have had it worse with babies only sleeping on you which is really ridiculus that life has to deal that to you but im struggling so much with this I cant resettle him at night, i feel terrible for him and basically im shit scared of the problems hes having with lack of solids. Without him controlled he wont take solids because hes in pain when swallowing (so the speech pathologist has said). I guess Im also scared to wait the 3 weeks for omeprazole to take effect because hes been getting worse each day so I have little hope for it and with xmas approaching and drs off on holidays I may not get to see this guy again until mid-late january potentially on a drug thats not working. sorry for vent again im just so frustraed and want answers. Im also a little pissy that bailey has never been tested for anything!!! all these drugs and trialling stuff with him and not tests to confirm or rule out anything, i find this odd and im gonna ask this dr about it on fri.
Dec 13, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Feel free to vent! It is hard when you are trying to help your child and all you do is see them in pain. Don't worry about the solids right now. Focus on getting the fluids into him. I'd definitely ask about more testing. What formula are you on again? So many kids have intolerance/allergy issues. It made a world of difference in our house. Have you tried hypoallergenic formula? It's good you are keeping a journal. I found my journal with my DD with some of her worst days I wrote about. I don't know how we all survived! It is tough but it will get better. Do you have help? It's hard when the household is sleep deprived. Again, hang in there.
Dec 13, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
one more thing...when we switched to zegerid (which has omeperazole in it), my DD had horrible, horrible gas. I gave mylicon drops around the clock. Is he having gas issues?
Dec 13, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I'm going to just chime in with a couple of additional things to consider based on my son's experiences. He had a vicious cycle going on of reflux, sleep apnea, weakened immune system, sensory processing disorder, post traumatic stress syndrome, and I can see now -- though we never pinned it down during the worst of things -- various food allergies and intolerances. What happened (and continues to happen to a lesser degree) for him was, all of these things were inter-related, so as soon as one would flare up, all the others would follow in rapid succession making it almost impossible to tell what started things. For example, even though we had his reflux pain under control by the time he was 9 months, the sensory processing disorder caused him to react terribly to even non-acidic reflux, which caused episodes of sleep apnea and aspiration, which led to medical interventions which, because he had sensory processing disorder (we didn't know that at the time) led to post traumatic stress syndrome, which created a state of extreme stress on his body and caused the reflux to flare........and on and on and on it went.

He is four and a half years old now. It was hell until he was nearly four. It took us that long to put all the pieces together and figure out what paths to take in terms of helping him. Ultimately, we opted for alternative approaches -- intensive treatments in Chinese Medicine, Cranio-sacral Therapy, Occupational Therapy and Somatic Experiencing (a technique for working with the PTSD). There are still pieces of the puzzle falling into place -- the allergies, possibly Asperger's Syndrome and definitely very cognitively gifted. I guess what I've learned is that, sometimes there is no simple solution, no one diagnosis and one fix, and to see a child as a whole being requires years of observation and responsiveness which can be physically, emotionally and financially very draining. That all probably sounds pretty bleak, and certainly there have been many times when I felt at the end of my rope, when I just wanted to crawl out of my skin and run away from my life, my often total lack of sleep, my feelings of isolation and confusion and fear. But now, having come to understand so much of what has been troubling him, and having found methods of addressing those things that work well for him, I see all of his challenges as something of a gift. They all now act as a barometer for his stress level and his well-being. The moment I see signs of some element of his challenges flaring up, I know that my job is to do everything in my power to reduce the stress on him, to seek the treatments that have worked for him, to do what I can to stop the downward spiral. And mostly, it works. He is blossoming into a healthy and happy little boy -- maybe not a typical little boy, but a happy and healthy one. He will likely always face challenges but my goal is to help him learn to identify his own needs and to respond to them, just as I now do for him.

I guess the main thing I want to communicate to you, in addition to putting out there a few other issues that sometimes occur along with reflux, is that you need to learn to trust in your own observations and intuition (no matter how exhausted you are -- and believe me, I KNOW exhausted -- that mama intuition is a gift that is with you always), and trust that you are the best advocate for your child. Trust yourself enough to question -- to demand -- when the medical establishment tells you that there's nothing more they can do, or that there isn't a real problem, or that you so not understand your son's condition. And get any rest you can, any time you can. Had I known that I was not going to sleep for more than four out of 24 hours for almost four years, I would have made a much greater effort to do anything to get a little help and a little rest...

Dec 13, 2011
baileys mama
Thanks so much guys for your words and experience. I havent really noticed any more gas than usual I think. Hes not crying while passing so Im assuming thats all the same but sometimes when I do pick him up during a night crying bout he breaks wind so he possibly is gassy or maybe its just usual baby breaking wind. Im going to ask the specialist to change the omeprazole brand because I am feeling confident its the drug thats making him much much worse. Just like you said Lorenzomama its mama's intuition. My husband is saying 'hes always like this, crying, waking at night, hard to resettle, car probs etc' but im with him 24/7 and im seeing the difference. Also today both when my husband took him for a walk in the pram and when we both did this evening he just screamed the place down, arching his back and trying to get out plus hes been super clingy to me and wont let dad hold him and only wanted me to hold him. Hes not clingy like this normally and certainly not this much. He never would go in the pram b4 but we have worked really hard to get him to like the pram and now every 2 days he goes in the pram around our neighbourhod for one of his sleeps. All of a sudden hes back to resisting it and I think hes sitting there uncomfortable and in pain and the fact he only wants mum is just for comfort. Usually the days are much better than the nights but the last 3 days all ay hes crying and winging at everything, so something is just different. Anyway I could obviously go on forever! Although I know nothing about the future I feel something telling me that this is going to last some time before we get real relief. I dont feel very confident that in 1 week or 2 weeks hes suddenly controlled which is making me think there are other factors at play besides just the reflux (such as milk intollerance, etc). Also I know everyone says omeprazole can take up to 3 weeks to take full effect but I just dont believe from my own experience with medications in my life that you can get progressively worse for 2 weeks and then all of a sudden on the last week everything is amazing. I would expect over the past 2 weeks to at least had some improvement that gets a little better each day until its much better. The fact hes on the highest dose I dont know what it means for us and Im hoping the specialist this fri relieves my concern and suggests tests or another method before I have to basically put pressure on him to do so. Im sure you can see that I dont have alot of faith for some of the medical personel in australia. I have been questioning medical people about my son pretty much since he was born and have always been dismissed that 'all babies are like this'. Because he gains weight and is a relatively happy baby whose motor skills are striving its never taken seriously in my opinion. I think we get labelled as 'first time mothers who overreact'. I will fight for my son like you poor ladies have had to also do and hope that son he can live more comfortably and then maybe just maybe he will eventually sleep restfully through the night and be happy to travel in the car and we can actually go somewhere, even to a sporting match as a family for the first time. I will kepyou guys posted for friday, thanks again for all your ideas, I feel well equipt for friday and all the questioning Im gonna have for this poor time deprived specialist :-)
Dec 14, 2011
dcd
Hi, I am running out the door so I can't read through all of this but PLEASE try a hypoallergenic formula. You can start with either Enfamil Nutramigen or Similac Alimentum. If you do not see enough of an improvement, try Neocate or Elecare (elemental formulas). You can call Neocate customer service (for the number, visit www.neocate.com) and ask them to send you a free sample. While you're on the website, read everything under the "Parents" tab.

Milk-soy protein intolerance (MSPI) is not uncommon in babies. MSPI (and/or food allergies) often go hand-in-hand with reflux. The conditions mimick and complicate each other, making it difficult to tell what is really going on.

At 7 months old, my daughter refused the first feeding of Neocate I tried to give her. 6 hours later, she drank it and never looked back. After ONE feeding she was finally SLEEPING - after being up every 30 mins to an hour SINCE BIRTH, she was sleeping 6-8 hours at a time. Her feeding aversion went away. She stopped crying, arching her back, and squirming with bottles. She completely stopped spitting up - and this was a baby that would go through 2-3 outfits per day because they would become soaked in spitup. She was finally able to "settle" and be calm - I could tell she was finally comfortable.

Her MSPI was pretty severe. When we finally figured it out (no thanks to her doctors, I might add), I figured "Oh, it was MSPI all along, now we can get rid of the reflux meds." Wrong. She had MSPI *and* reflux. After the switch to Neocate, it took me another couple months to get really consistent with her Prevacid, and when I did, all her related issues were really just, resolved. Once she was drinking Neocate and taking 27 mg Prevacid per day (split dose), everything seemed so much clearer than when I was there in the trenches trying to figure it out.

She is 21 months old now and she finally outgrew her MSPI enough to get off Neocate and switch to whole milk about a month and a half ago!!!!!!!!! We are hoping to wean her off Prevacid and are down to 18 mg per day. She's an awesome sleeper and a happy healthy girl.

PLEASE try a hypoallergenic or elemental formula. It may make all the difference in the world.

Dec 15, 2011
baileys mama
Hi DCD, thank you so much for your post. Your poor daughter has been through so much but Im really glad she finally got there in the end although at such a cost to both her and your sleepand sanity really. There have been a number of mums now suggest cows milk protein intollerance which I find really interesting and never once has it been mentioned by any health care professional. It seems yourself and many mums on the internet had to go months before any dr (or themselves in the end) made the switch to neocate or an equivalent to finally see a difference. I was planning to bring this up with the specialist tomorrow and to tell you honestly if he throws his face with this I am going to try it anyway. Can I get this in Australia myself through the chemist or does it need to be on script? From what I have read online Im sure bailey doesnt have the allergy as he does not present with the extreme symptoms but maybe he has an intollerance and maybe thats why it seems as though the meds are not working. Seeming bailey is on the higest dose omeprazole that is usually presecribed by specialists and still on ranitidine and seems to be worse there must be something else in the equation. The thought of ever getting to where you are now would just be wonderful so I really hope it all gets figured out and we can get some sleep and even get to go in the car and go places would be a dream. Ill give you all an update after we see the specialist tomorrow with hopefully some positive news on how to go forward. Thanks so much everyone for giving the time to just help me out. I have felt very alone with this since the beginning but finding this forum has been really helpful as I dont feel alone at all. xx
Dec 15, 2011
dcd
You're not alone. Our first pedi was no help at all. She knew nothing about reflux and certainly nothing about MSPI. (How this is possible, I don't know. It is not that uncommon a condition. I think what happens is that a lot of the babies who have this condition end up spending the first few years of their lives crying, not eating well, and not sleeping well until they outgrow it, and in the end no one ever figured out what was going on. Clueless doctors will tell their parents it's just normal baby stuff, or colic, or they need sleep training, or whatever, so everyone just suffers. But in our case, even though Kylie is my first and only child, I KNEW in my gut something was not right so I just kept searching. I do not accept that a baby cries, refuses feeds, and wakes up all night long when they are clearly exhausted for NO REASON.)

Eventually we saw a pedi GI, who I really liked but still wasn't much help. Then an allergist, who was an absolute quack and told me Kylie was allergic to like 70+ foods -- which is complete BS and really threw me off track for a while. (We later found out he has a reputation for manufacturing allergies in his patients.)

And then we switched pedis. I love our current pediatrician but the sad fact is, in all this I ultimately just figured it out myself. I would read and research for hours and then take my ideas to our doctors and basically get them to "sign off" on them.

PPIs are very effective in treating reflux. If you are administering the PPI correctly (empty stomach, 1 hr before feeding) and are giving him a high enough dose (many pedi GIs will prescribe a higher-than-recommended dose for babies because babies metabolize the drugs so much faster than older kids and adults) -- the reflux should be under control and you should not being seeing these kinds of symptoms. If you are still seeing symptoms, there may be something else going on.

In our case, we were getting the PPI right and I was still seeing symptoms, much like you. The very, very disturbed sleep. Crying with feeds, letting all the milk just trickle out of her mouth when I gave her a bottle, sometimes refusing to drink. She always seemed restless and uncomfortable. It seemed to me that her little tummy was just always upset. I could tell something was not right.

But the doctors just dismissed me. They said she did not have a milk allergy, period - if she did, we would've seen blood in her stool, or loose or mucousy stools. She would have diaper rash. She would not be gaining weight. She would be in distress.

And so they never took me seriously because she did gain weight, even though she was on the small side. And she was always a very happy and alert baby. She never had diaper issues of any kind.

When I started researching MSPI - which is not a true allergy, but an intolerance, so it makes sense that we didn't see a lot of the symptoms traditonally associated with an allergy - I found that the symptoms look A LOT like reflux. And that A LOT of MSPI babies also have reflux. So, on my own (but with the knowledge of our doctors), I switched her to Alimentum. There was only a very slight improvement. So I decided to trial Neocate. Her doctors were completely skeptical and told me only really sick babies need Neocate. I know they thought I was being CRAZY. But I could tell Kylie was legitimately uncomfortable. I could tell. And as I said, Neocate was our "silver bullet." In 12 hours it was a complete turnaround. I can't explain what a relief it was to watch her finally be able to rest comfortably. Of course she wasn't resting before - her stomach was always upset from the milk.

I think something like 90% of babies with MSPI will tolerate Alimentum or Nutramigen. My baby was in the other 10%. Her MSPI was very severe. If you haven't, please go to the Neocate website and learn about what MSPI is and how elemental formulas work.

You should follow your instincts and the advice of your doctor, but I will tell you that even if my doctors had said not to try Neocate, I would have. There is absolutely no harm in it and by that point, I honestly felt I was more educated on what was going on with my daughter than they were.

You can order Neocate from www.neocate.com. You don't need a script. If you're going through insurance, you would have to call and see what their rules are. Here in the states, a lot of insurance companies won't cover it. It is expensive. And it tastes terrible, so it may take a while for your son to accept it/get used to it. I put off trying it for so long simply because I knew these two things. Then when I saw what a difference it made for Kylie, I spent a long time kicking myself for waiting so long to try it. In the end it was an easy fix. I am still very resentful at the medical establishment for not helping me get there - but, now I know that I have to be my daughter's fiercest advocate and I will never question my mother's instinct or give up. Before Kylie, I had sort of a blind faith in doctors. Now I'm much more questioning and cautious. They are the "experts" but you know your kid better than anyone else. If a particular doctor is not listening to you, find another one who will.

I don't know if your son has MSPI, but a lot of babies do, and his symptoms seem to fit the profile. I do think it is worth trialing Neocate. Every baby is different; my daughter is a classic example. She never presented with the severe allergy symptoms that would have led a doctor to recommend Neocate, but it turns out she needed it all the same. Please keep us posted and good luck to you!

Dec 16, 2011
baileys mama
Update
Thanks again for everyone who has been posting supportive messages to me. Today we saw the specialist and I told him I was concerned that Bailey was not tollerating Losec well because he has been more irritable, more trouble sleeping, whingy and seems a bit violent and aggressive. He agreed that these are signs of the medication dosage being too high for bailey and has dropped the dose slightly. We also discussed the possibility of milk protein intolerance and he suspects as well that this could be the missing link. He said he wanted to drug drug relief only at first to be sure it wasnt just that and was going to discuss the intollerance today if Bailey hadnt improved. So he gave me 3 cans of neocate to trial and 6 months worth of scripts which is great because there is noway on this planet that we could afford it privately. So fingers crossed that Bailey will actually take the neocate and we get some relief, relief i am desperate for. I think what is hard is that bailey is striving, dr was impressed that at 9 months hes standing unassisted for about 20 seconds and walking across furniture and crawling fast that he reminds me of a spidr sometime ;-). Hes also gained weight well but I know its because ive have persevered so much with him. Its funny because to the 'world' Bailey seems fine, hes happy, healthy and striving and confident. What people dont see is the reality. The reality that my husbands and my whole life revolves around the comfort of this child. We go nowhere, we do nothing, we just stay home. My niece is coming from melbourne to visit family for xmas and its her bday monday and the family want to celebrate at a restaurant we always go to and we have had to say we can only come for an hour max whether it fits in with dinner time or not we cant say because baileys sleepis so all over the place we never know. I also have to make sure the minute he wakes from his last sleep we have to get in the car, distract him all the way there, do our pleasantries and be back in the car and home at least 30 minutes before his next sleep or we wont make the car we will have a screaming fit and vomit all through our car. Our window for everything is 2.5-3 hours between sleeps. This to me is just ridiculous and these are the things noone sees we have to do in order to just live. I guess the point I am trying to make is just because he seems to strive, look healthy and happy does not mean life is bliss. If I didnt revolve my life around this baby I think i would have a cranky, sad, irritable, angry, tired and underconfident baby. What kind of mother would i be if i let this happen just so i can have a social life. I think ive decided the longer i become a mum that i dont give a shit anymore about what other ppl tell me to do with my child in rregards to living my life. They dont live this or understand and im a little sick of being told 'well you just have to control cry him u cant keep rocking him to sleep' or 'he just has to learn to go in the car'. At the end of the day I dont even care anymore im just going to do wha is right for bailey and our family. So thanku everyone for giving me the strength to feel like im not the only one dealing with this and that what im doing is right for me son. On a side note the specialist although I am relatively happy with today he is still saying that he thinks bailey has a car phobia and suffers from night terrors and that us rocking him during the night during a terror will make him dependant. Im not buying this crap. I still think baileys problems are physical and not clinginess.
Dec 16, 2011
baileys mama
I tried the Neocate and made sure he was right on time so he would be hungry and he took to it like normal. Hes only had about 25% of the bottle but this is normal for him anyway and then I always spend the next hour getting his milk into him. I was so nervous that he would start refusing to feed because I know this stuff tasttes bad, so hopefully he will finish his bottle today.
Dec 16, 2011
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Oh my, I could just reach through this computer and ((HUG)) you -- what you describe about Bailey doing as well as he is because you have dedicated every aspect of your life to him -- that is EXACTLY what my experience was. It was crazy making to try to get people to understand it. And for those inevitable times when you feel drained and assaulted by the unwanted input and lack of support from others and you wonder if you're really doing the right thing, I will tell you from my perspective four years down the road -- YOU WILL PROBABLY NEVER DO ANYTHING MORE IMPORTANT THAN WHAT YOU ARE DOING RIGHT NOW. You are creating the foundation on which Bailey will live for the rest of his life, and the foundation you are creating is an incredibly strong one.

I can't overstate my opinion of the importance of supporting babies and young children with everything we have as parents. It matters SO much. It is clear to me, in my own situation, that the difference between Lorenzo being diagnosed with Autism, and simply having many autistic tendencies which never quite coalesce into diagnostic evidence, comes from the support he has received from me and from the incredible alternative health care providers who work with him. It is clear to me because the one time I allowed myself to get so overwhelmed and exhausted that I couldn't keep up the level of support I'd been giving, he retracted so quickly and deeply into such a dark place -- physically, emotionally and behaviorally -- that it was unmistakable. And he came back out and blossomed so readily when I returned to myself. It was a painful and beautiful lesson in love and the depth of connection between parent and child.

I am so glad that you have the confidence and insight to be exactly who Bailey needs you to be....

Dec 16, 2011
baileys mama
HUGS to you to lorenzomama youre my inspiration:-) I think its when we start raising our child the way other people think it should be done is when we loose our direction as a parent and become un happy. I listened too much in the first months of baileys life with uneducated and educated people telling me that what was happening with bailey was nornal and that all babies do these things. This is why it took me till 5 months before I got him checked because I believed other people who in the end have no experience or knowledge of this. I was criticised for picking him up every time he cried and criticised for rocking him. I was also criticised for feeding him too many bottles because he would never finish one and was told by medical staff I was creating a snacker. Whats so funny is now I understand those things were cruicial for Bailey that I listened to his cues. If I forced the big feeds or force him on his tummy or back or left him to cry for hours I would have basically been ignoring his signs that he was in pain. The only person who has supported me all along has been my mum and thats because she was told she was a paranoid mother of a 16 month old daughter who had a behavioural problem and there was nothing wrong with me. She perservered through 3 specialists who wrote 'paranoid mother' in their notes but finally at 16 months after a trip to the hospital with gastro a registrar diagnosed congenital heart disease. After a major heart operation I survived and my mum was told I would have died if undiagnosed within a month or two. So my mum saved my life. She has been the only one that has said something is not right with this baby so keep pushing till you get answers. I know baileys problems are not life threatening and I know they are not as severeas some of the mums have had to deal with on here, including yourself but if I can improve his quality of life then I believe thats my job as his mum. I dont see why I should allow a baby to have disturbed sleep, be in pain/discomfort and inability to start solids although very interested if I can keep searching for anwers and just try things. On a positive note bailey took his second feed of neocate with no trouble at all. I feel so lucky that he is happy to drink it and lets hope it assists in helping him. It certainly wont harm him so I have nothing to loose and alot to gain. xx
Dec 17, 2011
mangogal
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
Hugs to both you Mamas. It's inspiring to read these stories. We all have our own experience. We have been through so much with our children. None of their cases are straightforward or by the books. As mamas, we must tap into our intuition and listen to our guts. Bailey'smom, I am glad you have strength from your own mother that went through so much with you. I hope things improve soon with the changes your specialist has recommended.
Dec 30, 2011
sebastian
Sebastian's parents. Baby stopped eating at 4 months.
First I just wanted to let you know, you are an amazing mom. This will pass ane everything will be okay over time. I just wanted to let you know omeprazole did not work for us. Even though the doctor would swear it's the same, only prevacid (or generic which is now taken off the market) worked for us. It is very important for the stomach to be empty. We went through the same thing with our son. Still do. Besides dairy and soy, egg, corn, glutens are bad as well. Our son still gets up at night a few times. I really gave up on sleep. Sebastian is on 15 mg of prevacid. 7.5 mg at morning and 7.5 mg at night. Exactly 12 hours from each other. We don't feed him an hour before and 30 min after the medicine. It is sometimes difficult to do but we have been told and it has been our experience that having the medicine on an empty stomach and allowing it to work before feeding is critical. We divide the 15 mg tablet in two, crush the half and disolve it in a baby spoon of water. It taste like strawberry so he likes it. We then give him a few spoons of water (he still won't take a bottle or a sippy cup) to make sure he takes everything. You are an amazing mom, everything will be okay. Also one more note, one of the GIs we saw said that zantac and the PPIs work against each other. I am not sure if it's true or not.
Jan 04, 2012
baileys mama
Update from us
Hi everyone, thanks so much for all your support and kind words. Ive left jumping on for a while to give Neocate a good try, plus everyone is probably sick of me winging aout Bailey's reflux everyday :-) After starting to mix the thickener Bailey stopped vomitting so that was a quick fix. Overall his experience on Neocate and Omep and Ranit in the doses recently reccommended have improved some things but other things have not improved. Hes stopped crying in his sleep and his rolling around all over the cot has reduced by about 50%. So overal the nights are much better, however he is waking at least once a night still and always now wants to feed. He wont take as many mls during the day as he used to and its always a screaming match to get him to drink his milk. This is why hes wanting to feed in the night. Im not sure why he isnt drinking as much in the day, particularly when the formula is so thin and not heavy. I dont know whether this is just the way it is with this formula. He has started spitting up as well sometimes but this could also be because the formula is thin. Im now finding him at times to be harder to put to sleep, he fights it and gets irritable with me and is uncomfortable trying to settle on me (which i never had a prob with b4), but he wont settle himself either. Im not sure if this is purely just an age thing. We have been working hard with getting him into the pram and car and i ran a little experiement myself with the car and just strapped him into his car seat and didnt drive and he sat in his carseat strapped in playing with me and toys for 50 mins!!! no screaming, skirming, choking or vomit!!! then in the car within 5 mins driving we have drama (xmas at both our families ouses 1 hour away were a nightmare and our car is now very used to projectile vomit). I think he gets carsick as well as everything else. Weve started driving short trips wth the front passenger seat down so he has clear view of the traffic out front rather that seeing cars go past to fast out the side windows. It seems to help a little and we are going to keep trying to go further each time but he in no way wil sleep in the car. He just goes mental when hes tired so we are so so restricted with any kind of life outside home, its kind of ridiculous. I have been having trouble giving him the omep exactly 12 hours apart. He aways refuses the nighttime feed at the time I need to give the omep. He also wont take things by spoon so its impossible to give it to him any other way besides in his milk (even via shryinge he spits it out or vomits it). I spoke to the paed about this and he said you have to get it into him any way you can, so yeah I have to mix with milk. Im sure this isnt helping. Apart from that hes striving in al mental and physical aspects so i cant complain at all really :-), hes turning 10 months late this week and hes been walking unasssted for the last week. well baby baby steps - hes up to 6 steps - so cute!!! So I guess I just have to keep waiting longer to see whether he starts to sleep through the night and doesnt winge (still getting epidodes of him arching ack and crying or winging for no real reason - kinda out of nowhere) as much and things, oh and eats solids - this area is still no happening for him either.
Check with your
doctor first!