Mom on the edge of insanity — Help

[hellbennt]

dee1028: Thank you for weighing in with your thoughts about the meds schedule. I have certainly considered what you are suggesting and that makes complete sense. I am absolutely taking that into consideration. My only hang up is — when Mason was taking only Zantac 3 times a day, I had assumed that meant 3 times in a 24 hour period. So I dosed him accordingly. When I was discussing this with a nurse at the GI office (yes, The Nurse) I was “corrected” and told that dosing meds was to be done during “waking hours” only and that whatever I gave him before bed should “more than last through the night”. Obviously, from prior posts, I do not always agree with The Nurse and I often hear conflicting information. So, I figured, why not ask the leading authority in children with reflux: their parents. That has led me to this forum.

As for the bottle in the middle of the night problem, my son has slept from 8pm until 8am plenty of times while his reflux was under control. So I doubt that he is actually hungry, but I believe that his discomfort is begging him to comfort feed. Could that have established a habit? Sure. But this happens irregardless of the time that he goes to bed. For example, the other night, my son fell asleep at 7:00pm. He had missed a nap earlier in the day and was exhausted. I opted to let him sleep as long as he possibly could and with that, I did not give him his third Prilosec dose of the day at 8PM. Instead, he woke at 12:00AM. At which point, I gave him the Prilosec and a bottle and he was back asleep by 12:30am. Sure enough, he was awake at 6am… and not just awake for the day because he had a good-nights-sleep, but irritable and cranky. When he wakes up crying, there is a problem. When he simply wakes and coos, things are good. Fitting with the pattern I was going with 8-2-8, he was waking at 2AM. It has just been a constant that 6 hours after his last dose, he is waking. I doesn’t matter when he fell asleep, but when the last Prilosec dose was. It has taken me about a week to figure this out. So tonight, his last dose was at 8:30PM. Let’s see what happens, eh? I am hoping against hope that since I put this in writing that my son will want to prove me wrong and sleep the entire night. J

Next, in my attempt to not endorse a product on a public forum, but only inform you of what I am purchasing, Google Comfy LiftBed. This item seemed suited best for our child and his needs. Furthermore, it will be covered by my insurance relieving me of the large out-of-pocket expense. However, everyone thought I was nuts for paying $129.00 for a piece of foam (my Nap Nanny), but ask yourself this… can you really put a price on your sleep? The Nap Nanny worked for my son. He has outgrown it. We needed to find a better solution and this is the item I think will help us in our situation. I cannot attest to it as I don’t even own one, but do some research and see what will work best for you. I certainly wish you great success with the BufferBabies. It was certainly worth a try in our household.

hellbennt: Good to hear from you. So, in short, I am going to repeat some information to make sure that I am on the same page with you. My ped is ½ correct about the blood in the stool issue. There does not need to be blood in the stool for there to be an intolerance. If blood was in the stool it could mean intolerance and/or allergy. So then, would having the blood draw on my son finally answer the intolerance question? Not only is this an ordeal to have done, but I am not going to put him through even this discomfort without being able to come away with some answers. I was told that this was the only way to find out for certain. But still, I believe this to be a possibility. Please weigh in if you can.

As for the Zantac… I am certainly willing to incorporate the Zantac back in. I believe I read an article referenced by Dr.P about Nocturnal Acid Reflux Breakthrough where it is suggested that Zantac before bed would be more beneficial than a PPI in these severe cases. Yes, I think Mason fits this category. So to answer your question — Mason was prescribed Zantac as follows: 2.6 mL 2x daily. The Ranitidine Syrup is 15 MG/ML. So your calculation would be correct. His maximum daily dose (which I think it is worth stating that ever since we have been on the Zantac, Mason was always at the maximum end of the weight scale) would be 5 ML and he was taking 5.2 ML.

So this leads me to my next question: Say for example that I give one very big dose of Zantac at bedtime… say 5 ML. Wouldn’t a 5ML dose leave his system at the same rate as a 2.6ML dose? How can a bigger dose get him through the night? I have to admit that I am somewhat ignorant to this and I am probably not understanding how this larger dose would help. On the flip-side of this, I do know that my son has always had to have the bigger doses to get through the day and Zantac was a lifesaver in this house for several months. I am just wondering how this will help our situation. Forgive me again for saying this, but I hesitate to dose big without knowing the benefits first and I’m just not clear as to what they are… that’s why I’m here. You all do a very good job getting this information across. So thank you so far. Again, to answer your question… the current dose is 2.6ML 2x daily (5.2ML per day). This dose was given on November 30^th, 2010. And please see the prior post… he has not gained weight since then. So this dose would still be good. I have not given Mason the Zantac since we began the BufferBabies on 12/18/2010.

Please let me know if you need any further information… I will do all I can!!! Thanks again!

[hellbennt]

about the zantac & one huge dose:

everything is trial & error, unfortunately…

you can try the big dose and see if it helps.

or, what you could do, is make the dose into two doses, but make them

into uneven doses & give the higher proportion of zantac at night

w/ the zantac, you have to spave it 4hrs from the prilosec. To be honest, my ped GI told us 2 hours and that did work for us. However, the majority of ped GIs say anywhere from 2-5 hrs to space the meds, so when I ‘tell’ people, I err on the side of caution & say 4 hrs.

you can try many different configurations…

is the first thing in the a.m. bad? maybe give zantac then, & then the prilosec the three ‘other’ med times and then the other zantac dose at night?

personally, I would continue w/ the zantac for a good two weeks…

another thought: not to make you more crazy, but since weight gain seems to be an issue…

carafate.

This is a medicine that is not a long-term solution at all. It is a ‘band-aid’ solution, but definitely helped my son at times. It’s like a teflon coating (it’s NOT teflon!) for the esophugus to help it heal- once it’s healed, he may eat better? It can’t hurt, that’s for sure. However, there are timing issues- you’d have to do a search to find out how far apart from PPI & zantac it needs to be given. But, we DID use it for jonah when we were trying to get everything all figured out…he didn’t have weight gain issues, but he SHRIEKED/HOWLED non-stop, poor thing. Once we got the meds ‘right’ he was so much better!

Maybe try carafate at night (again, this is short-term – baby can’t be on this for a long time- I forget- maybe 2 weeks?)

As for allergy testing: truly, it’s not reliable until baby is 12 or really 18 months and, from what you’ve written, you most likely are dealing w/ intolerances (if anything). I don’t know if there is an intolerance ‘test?’ Most figure it out by gastric and reflux issues. For example, they switch to nutrimigen and see a difference. Your baby has ‘so much’ going on right now, that I might get meds stable first then, if you think things could be even better, you could try alumentum/nutrimigen or even neocate/elecare.

Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815

more thoughts: when son wakes crying, give zantac?…you can mix w/ some mylanta to help soothe him? he might just take the zantac fine, ‘plain’ but if you did want to try mylanta, it can be given along w/ zantac. it cannot, however, be given w/ the prilosec.

have you tried some mylanta to settle him down & see if he’ll go back to sleep ‘just’ w/ that? that’s an idea. sorry to keep throwing things at you, but really it’s so hard- you ‘just’ gotta keep on trying different things… hellbennt2010-12-30 13:07:38

[Anonymous]

My heart goes out to you. Please keep us updated.

Praying you get some relief soon.

[Anonymous]

is mason having any painful gas from the bufferbabies it seemed to upset leigha…but im not sure if it was the bufferbabies or just a rough patch???

[hellbennt]

dee1028: Mason has always been gassy, per say. I read that you could get the CaraCream Max which helps to reduce gas. I just chose to stick with the BufferBabies because I hadn’t read many parent reviews on the CaraCream Max. But, to answer more specifically, yes. The first few days, I certainly noticed more gas. But not painful. However, your LO seems much younger than Mason and I suspect her age might have something to do with it. Her digestive system is so “immature”. Very delicate. Maybe Mylicon would help? I don’t know… Laura? Can you confirm Mylicon use with Prilosec and BufferBabies?

More to come from me soon. Have much to share.

[hellbennt]

ngarcia: Thank you for the kind words… we could use all the help we could get (man made or divine).

hellbennt: Thank you very much for the information. I will answer some of your questions last, but would like to begin with an update… a lot of what you are looking for will be included here.

The evening of my last post, my son awoke at 3:30am as predicted. So the following day, my husband and I implemented some changes to the dosing schedule. Somewhat along the lines of hellbennt’s suggestions, we changed the BB and Prilosec times to be closer together to accommodate a larger Zantac dose before bed. BB and Prilosec @ 8am, 1pm,4 or 5pm and a big Zantac dose @ 8 or 9pm of 4ml. If he wakes later in the evening, we will give the remaining 1.2 ml of Zantac and some Mylanta. The first night that we tried this, Mason woke briefly around midnight and was quickly back to sleep having found his pacifier. Neither I nor dad heard from him after that until about 6:30am. A little earlier than I would like, but he did STTN. Maybe we are onto something here… thanks Laura. We are going to stick with this routine and see where we end up. Also, to try to compensate for any intolerance issues, we’ve switched his formula to Similiac Sensitive. Sure, it’s not as good as the Nutramigen or the like, but Mason didn’t tolerate those very well and we thought something partially broken down was better than what he was on. It might not be the best for intolerance, but we’re going to try it. I would love to get my hands on Neocate, but we can’t afford it and the insurance is not going to cover it despite my attempts. So, this is going to be our routine for a bit. I’ll be sure to add an update as we go. Please feel free to weigh in and comment or add ideas. The more the merrier.

On a better note, I can’t say enough how pleased my husband and I are with Mason’s progress on the Prilosec and BufferBabies. All within a few days time, he began progressing and doing more. Sitting alone, pulling himself into a standing position, going from belly to sitting with ease, clapping his hands, and finally, reaching for us to pick him up. His laughter has been long overdue and I can actually see the two bottom teeth that cut through since he is smiling so much. I really do attribute all of these things to the marci dosing and BufferBabies. So, I am very thankful.

Laura… you are so right. We do have to keep trying anything. You have no idea the hoops that we have jumped through, the ideas we’ve come up with, and the total failures along this journey. And we will keep doing it until Mason is comfortable. So keep throwing things at me! It’s a HUGE relief to know that someone understands AND has to knowledge and experience. Doctors and nurses only provide some… sometimes, I get the feeling that they just don’t get it. They don’t understand. Thank you!!! Lastly, I need to answer a few of your questions, so you can better assist. Mason’s best time of the day is usually first thing in the AM. Weird, I know, but true. That’s why I want to dose the Prilosec right away and keep a good thing going. The longer I wait, the worse his entire day becomes. Before the BufferBabies, he started going downhill at about noon, 4 hours after his dose. BB + Prilosec has extended that length to 6 hours. I’m just going to dose before 6 hours. Next, I’ve tried to give just the Mylanta when he wakes at night. It works to a degree… he goes back to sleep but after about 2 hours, he’s awake again and we repeat the entire process over again until about 8am. It gets tiresome. We are trying your suggestion of Mylanta+Zantac. Totally makes sense… get immediate relief while waiting for the Zantac to neutralize. Nice. We are going to hang on to the Carafate suggestion for now. You mentioned that before… I’m hoping it isn’t necessary, but now we know that if we need something more, that is it. Thank you again.

I’ll be sure to update how this all works out. I’m very optimistic at this point. We have had so many positive changes, I pray that they continue.

Thank you all so very much for your help.

[hellbennt]

Quick Update: Since the introduction of Similiac Sensative a few days ago, things are much worse… he is now spitting consistantly and is very irritable. Re-evaluating and coming up with new game plan. I’ll post when I know what that is, but the Sensative is going.

[Anonymous]

have u tried thegood start formula my son transitioned very well from alimentum to good start.

[hellbennt]

dee: Tried the good start already. He took it for a while and then quit. We could always try again… I’ve been thinking about the Similiac Go and Grow stuff for babies 9-12 months. Older Infant formula. Back to the Advance for now. He went to bed comfortable at around 830 tonight, but he’s been up a few times but only brief wakings… More research I guess. Thank you… more to consider.

[hellbennt]

Hello all… Opening again, I apologize for the length of this post. I want to keep all that have been assisting me updated, and I want to be sure if someone in my situation reads this (my trials, successes, and failures) it will help them. Our progress has been slow going if not halted at this point. Again, so many positive things have happened thanks to BufferBabies, but there are still several things amiss and I was hoping to figure this all out. I’ve said that the answer could be right in front of me and I would never know it…

After reading thread after thread and re-reading all of hellbennt’s information and references (over and over) we have decided to attempt to rule out MSPI. hellbennt, all of the information that you have provided screams similarities to my son. Sure, I’m certain that Mason has reflux and always has, but is that the real underlying issue? Maybe not. After reading, I figured that there is obviously more going on here than meets the eye and I would be stupid to not consider everything seriously.

After husband/wife discussions, we have come to the conclusion that Mason’s discomfort and “flare ups” are directly associated to his formula consumption. We have been watching and waiting for a week at least, and have determined that one way or another, formula is an issue. I won’t lie… I’ll even go as far as to admit that I gave Mason 2 bottles of whole cow’s milk, just to see (would it help or hurt). I can imagine getting flamed for that, but he did not explode/implode, bleed from any orifice, or stop breathing. What did happen was his reflux was certainly aggravated. Still not the worst episode we’ve ever seen from him, but clearly there were comfort issues, arching, coughing some, and that evening, congestion while he slept.

While we evaluated this, my husband and I have had several discussions/arguments about what Mason’s real issue is. Clearly, there are many things that could be causing the intensity of the reflux despite the great dose of medications (which I do believe we have a good dose and schedule now). I have been told numerous times by 3 separate medical professionals that these issues were not intolerances. Everyone had the same basis for this… no blood in the stool. And for a very long time, I took this at face value. And why shouldn’t I? These doctors knew what was going on, right? I feel really stupid now, and I should have done the research earlier and joined this forum sooner.

For the last several days, I have been trying to get my hands on Neocate to do a trial. I called 1-800-NEOCATE and spoke to a customer service representative. She stated that if I could get approval from my pediatrician, they would send me free samples to see if the formula would indeed help my son. That way, I would not have to purchase an entire case or begin to fight with the insurance company about coverage before I knew it was what my son needed. Great. So I proceeded to beg, plead, and hound my pediatrician about giving approval for the trial. It took three days, but I finally got the approval today. I didn’t ask, but I suspect that she hesitated as she also insisted that this was not a tolerance issue… so why approve such a formula. In this instance, the squeaky wheel got the oil. I really do think that she gave the “ok” to shut me up… and I am just fine with that. Now that she has said ok, even to a trial, and there is record that we have tried other hypoallergenic formulas without success, my insurance will cover the cost if Mason responds well to the trial. Hooray.

Immediately, I called the Neocate people back and verified all of the “prescription” information (they did call my doc to verify while I was on the phone with them) and after this intake procedure, I was connected to a Neocate Nutritionist. My discussion with her was to determine what products would be tried and what products would benefit Mason. I was very satisfied with this conversation (the nutritionist spent over 40 minutes on the phone with me) and we determined that Mason would be trying the Neocate Infant Formula with DHA & ARA as well as their Rice Cereal (I did not see this item on the website). She stated that she would send me several cans of the Neocate and the Cereal in order for me to thoroughly do an elimination trial. She stated that these items would ship out today (1/06/2011) via UPS and that they should arrive in 4-5 days. Seeing as though these items are shipping from the Washington, DC area to PA, I know that I could have them as soon as tomorrow and no later than Monday (let’s just say I know a lot about the UPS hubs and how long it takes for service). Waiting for the BufferBabies to arrive was like torture to me as I had my hopes set on it working. I see myself doing the same here… could salvation be around the corner?

Before my call to get Neocate… I had switched Mason’s formula to Similiac Isomil (Soy). The Similiac Sensitive made him spit up alot and we did not want to go back to the Advance for too long. I found myself standing in the isle of our supermarket staring aimlessly at the formula selection deciding what Mason had not tried. Funny thing is, out of all the formulas available, soy was one he had yet to try. So, I figured, why not? What could we possibly have to lose? I realized that if we were dealing with intolerance, the likelihood that soy would also be an intolerance issue is pretty good. But I also knew that I was trying to get the pediatrician to see things my way… maybe if we tried the soy and had a not-so-good outcome, she would be more likely to give the approval for Neocate. Besides, the GI appointment is in February and I wanted to be able to say that we tried this. (I could just see us going to this appointment with no improvements and the doc saying, “Well, you haven’t tried soy yet. Switch formulas and call me in 8-10 weeks.”) So here we are, waiting for Neocate and trying Soy. Not what I would call ideal, but things could be much worse.

Furthermore, I am running into a “road block” getting Mason a Comfy LiftBed. The DME who was going to order this for me has refused to order it based upon their discussion with the manufacturer. The manufacturer states that they do not recommend this product for children under the age of 1 (Mason is 8 months old). Despite the fact that Mason meets their weight requirements, I have gotten full insurance clearance for this item, and his doctor agrees with me that this is a necessity (at this point), the DME will not order it for me and bill my insurance. So, clearly I am looking for another way around this issue or another product similar to this (Tucker Wedges and ResQ are not a consideration as Mason cannot be “strapped in”). I think I’m going to strike out. However, if Mason gets Neocate and he responds well, I was told that he may not even need the mattress. We’ll see. I’m not giving up yet, but I’m going to remain hopeful that Mason really won’t need it.

hellbennt: as for the Carafate, my husband thinks that this is necessary now. I’m slightly hesitant, but I will go with it. He asked the pediatrician for it and she requested that we speak to the GI’s office first as she feels that they would have more knowledge about this drug. It is something that she has never prescribed. So, per your advice, we have composed a fax that will be sent tomorrow. Keep your fingers crossed. But I am insisting that my husband deal with the GI and “The Nurse”. At this point, I am truly unhappy with my progress with this office that I fear I could explode and say what’s on my mind, permanently compromising our doctor/parent/patient relationship. Part of me would be ok with that and part of me is concerned that we will not find another GI. So, my husband has more patience than anyone I know… so this is his duty.

Ok. This is my update for now… comments, questions, concerns? I will be certain to give the outcome of the Neocate trial and whether or not DH got the Carafate. Thank you all again…

Before I conclude, dee1028: How is your LO doing? Can you update here too since we are having some similar issues? Maybe we can compare notes!

[hellbennt]

next question, lol:

is Mason eating solids? are you looking at all of the ingredients?

it’s probably in here, somewhere, but I’m (as usual) in a rush…

if he is I would monitor it closely- look at ingredients, etc…

[hellbennt]

hellbennt: Yes… if you consider solids food other than formula. He has been on mostly Gerber Stage 2 foods since he was a little over 4 months old… mainly fruits and veggies (all kinds, he has yet to refuse any). Just recently (durning this drama) did we begin introducing other proteins… chichen mostly, also Gerber Stage 2. And yes, great idea. Would want to keep some very close tabs. I never realized how many foods contaned soy.

Will do!!!

[hellbennt]

proteins: you might want to hold off until you get everything settled? it’s not THAT big of a deal…we didn’t introduce proteins until 9 months…not telling you to cut them out…just to keep it in mind…

[Anonymous]

mason’s mommy–i don’t have time to post right now—but i will get back to you..my daughter had a severe case of reflux and actually was one of the few thaqt required surgery. i’ve got to go join my family for dinner—i’ll be back.

[Anonymous]

masons mommy: leigha has been doing well overall. very busy week….I went back to work, she recieved her 1st round of vaccines, and caught a cold! so she hasnt been sleeping well buti do not think it has anything to do with the reflux. this week we also saw a ped gi who agreed to officaly up her dose of prevacid! i also started her on probiotics which already seem to be helping with digestion. as you know i felt the bufferbabies were giving her painful gas. I decided to try the caracream max i gave the first dose an hour ago so we’ll see how it goes. if it doesnt work at least i have a rx for a higher dose of the solutabs if need be. i will be keeping my fingers crossed that the formula solves most of your problems!!

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