Mom on the edge of insanity — Help

[hellbennt]

Hello all. I am relatively new to this board, although I have been lurking for a while seeking information and help. I have recently attempted to seek help from a reflux expert, but I also feel that parent input can often times be more valuable than even some medical opinions. While I am waiting for a response, I was hoping to post some of our story and ask for your input and your help. So here goes. Below are portions of my mail (it seemed senseless to type all this twice). This may seem lengthy but I wanted to make sure I included details… Thank you all in advance. Also, I would have visited the MARCY-kids website to seek this information, but it states that the website is currently under construction. L

My name is Jaclyn. My family and I reside in a suburb of Pittsburgh, PA (Latrobe). I am 32 years old and my son, Mason, is my first child. My pregnancy was quite uneventful. Labor and delivery was another story. After 36 hours of labor and finally a c-section, Mason was born on April 29^th, 2010 weighing 5lbs. 15oz. He was full term.

Our trouble began roughly when Mason was 3 weeks old. It began with Sandifer-like symptoms… strange movements, arching, stiffness, fitful crying that would last hours. I called my pediatrician and she told me that Mason was probably going through a colicky phase and that this is typical… it would pass. Roughly a week later, the projectile vomiting began. He vomited what seemed to be everything that he consumed. After a doctor visit, I was told not to worry as Mason was gaining good weight. Another week went by and the projectile vomiting continued and I was beside myself. Finally, I forced my way into the doctor’s office and demanded a closer look at my son as I suspected reflux. The doctor concurred and prescribed Zantac (1ML 3x daily). This seemed to be a blessing… shortly after a few doses, my son was no longer in pain and the vomiting ceased. Needless to say, this was very short lived.

Basically, Mason would outgrow his dosage within about 2 weeks. His doctor wanted to be very conservative and would often refuse dosage increases. After several long weeks, I made my husband call the pediatrician. Immediately, she increased his dosage and he was doing well again. Short lived again, but this time, the pediatrician recommended that we see a GI specialist at Children’s Hospital in Pittsburgh to manage Mason’s reflux. I called Children’s that day for an appointment.

Mason was seen at Children’s on 8/2/2010. Unbeknownst to me, our appointment was with a CRNP. (Please don’t get me wrong, but I have nothing against CRNPs but I am somewhat old fashioned and expected to see a doctor.) I was told that I could not see a doctor unless my pediatrician called and requested it and that they considered Mason’s case non-emergent. This appointment was the biggest waste of our time… the practitioner did nothing. Basically, she implied that Mason was gaining good weight and that he could not possibly have reflux issues. He must not be vomiting as much as I was stating. She also implied that I had Post Partum Depression and that Mason’s symptoms would disappear once I sought treatment. I packed up and drove the 2 hours back to Latrobe even more desperate to find Mason help. My first call was to Mason’s pediatrician.

After hounding her for weeks and listening to my son cry and cry (the Zantac was really doing nothing now) the pediatrician prescribed Prevacid (15mg Solutab, ½ tablet, 2x daily). I began the Prevacid immediately. Within 24 hours, my life would be severely altered. My son began not sleeping. He was never a great sleeper thanks to the reflux, but now he was only sleeping 2 broken hours over a 24 hour period. This went on for over 2 weeks. Finally, I gave up on the Prevacid and went back to the Zantac. (Not only did the Prevacid give Mason insomnia, he was vomiting, screaming, inconsolable, as if he wasn’t even medicated… I have many videos of these episodes.) I, again, forced my way into the pediatrician and with the help of our nanny, managed to get her to call a GI specialist.

Mason was seen by an actual GI doctor on 10/22/2010. This was one of the greatest things that could have ever happened. This man was awesome. He looked at my son and saw that there was a problem. I didn’t even have to try to convince him. He put Mason on a new regimen and our family has followed it diligently. We have had some success with this. Here are the exact orders from the GI:

Please begin giving Prilosec. Give 2.5 ML by mouth once daily ½ hour before breakfast feeding

Please continue giving Zantac Liquid. Give 2.4 ML by mouth twice daily ½ hour before lunch feeding, and ½ hour before dinner feeding. Please increase Zantac by 0.1 ML per dose every 3 weeks due to growth. Please make sure Zantac and Prilosec doses are at least 4 hours apart.

Please begin giving Hydroxyzine. Give 5 ML by mouth once daily at bedtime.

I was so happy. I had a long term plan for my son. Our first weekend with the Prilosec was difficult as the pharmacy did not compound it – they handed me the capsules and sodium bicarbonate and I was to do it myself. (This is when I first began research on the drugs used to treat GERD and the first time I read about BufferBabies to help with the administration of said drugs.) I spoke to a nurse with the GI office and asked if this is what I was intended to do (play pharmacist). She told me that she would call in a new prescription and that I should pick it up later that afternoon. I did, and my introduction to suspensions was official. We gave Mason the Prilosec as directed and waited for what seemed to be an eternity for it to “kick in” (it was closer to 2 weeks). But sure enough, we saw the signs of improvement and continued thinking that we had finally made a breakthrough and that maybe Mason was finally through suffering. Wishful thinking…

Mason is now 7 months old and as of November 30^th, 2010 he weighs 16lbs 12oz. The Prilosec seems to have stopped working several bottles ago (I originally had it filled every 14 days reading that the stability was questionable, and now I have it filled every 6 days as it is flavored… Mason will not take it any other way). After several calls to my GI office we are stuck. I am miserable having only slept 3 hours over a 5 day period (my husband is a driver for FedEx and I try to let him get as much sleep as possible… his safety and the safety of others depends on it) even more horrific, my son is the worst he has ever been and there is nothing I can do but watch him day after day, suffering. We can’t continue like this… so I am reaching out for help…

Here is the predicament that we have been facing: I believe that a PPI will work for my child, however the regimen that he was on worked briefly because it is not enough. I believe that there should be a dosage increase with the PPI and that I should be able to administer it several times a day. Daily, we follow the same pattern:

8:00 AM Mason gets his Prilosec

9:00 AM Mason eats breakfast

12:00 PM Mason gets Zantac

1:00 PM Mason eats lunch

4:00 PM Mason gets Zantac

5:00 PM Mason eats dinner

7:00 PM Mason gets Hydroxyzine

8:00 PM Bedtime

For the first two weeks after the initial dose of Prilosec, it appeared as though this medication was not doing anything. The third week into it, there was drastic improvement with his formula consumption, eating, and most of all, sleeping. He would sleep from 8:00 PM straight through until 8:00 AM. This only lasted for about a week. Then everything gradually reverted back to his pre-Prilosec days. However, there is something that has become disturbingly bad… his overnight sleeping. I cannot put him down. He cannot sleep flat in his crib. He becomes uncomfortable quite quickly and awakens screaming in pain. It has gotten to the point that if he falls asleep while I am holding him and I try to place him in his crib, the moment that his bottom touches the mattress, he is screaming bloody murder. Sincerely, it is a scream that would stop your heart. Furthermore, this behavior is carrying over into the waking hours. Nap time is a disaster and now, he won’t even play with his toys without being held upright. I don’t need to tell you this, I am sure, but we don’t ever leave the house anymore.

My attempts at contacting the GI doctor were fruitless. As politely as I can put it, I must speak to a nurse when I call the GI office for help. I am certain that this is standard procedure. However, I feel as though this one particular nurse has taken my son’s case into her own hands and has pretty much told me that there is nothing that they can do as Mason is “on a good dose”. (Sure it’s good… but that was several weeks ago.) She told me that Prilosec is failing and that there must be something else wrong with my son and that there is nothing that they are willing to do. In short, I disagree with all of this. This is why I am reaching out. I think that several things could be done and I was hoping that someone could provide me input or provide me with what your experiences are in regards to these questions. And by all means, if I am going about this in the wrong way, I was hoping that someone would point that out too. I’m not going to lie… I am so emotionally, physically, and mentally exhausted. I certainly need a fresh mind to provide input.

1. I am certainly confused about the Prilosec and how it is mixed/compounded. It is 20mg Prilosec Capsule dissolved into 5mls of 8.4% Sodium Bicarbonate and to take 2.5ml once daily. To my understanding, this is mixed/compounded at a 4:1 ratio (4mg/ml). I thought that 2:1 ratio (2mg/ml) was best? Furthermore, isn’t this dose quite low for once a day? This would mean that my son gets 10mg Prilosec daily. How is that supposed to make him comfortable for 24 hours?

2. Adding to the previous, shouldn’t a child with severe GERD benefit from multiple PPI doses daily?

3. On Mason’s current schedule of 8AM, 12PM, 4PM for medication there is nothing in his system to help control Nocturnal Acid Breakthrough? Clearly, I believe that my son has major issues with this. But if I try to space out the dosages, his discomfort is greater. I am not certain what to do.

4. How can I get the GI to help my son instead of ignoring me? Do I need to take matters into my own hands (following recommended dosing guidelines without the help of a doctor)? Would an OTC be better? What about capsules and BufferBabies?

5. My son is in pain. Is there anything more that I can do?

6. What is the purpose of the Hydroxyzine? Does it help with congestion? I don’t think this is serving much of a purpose other than making Mason gag and spit it out. But the nurse at the GI office insisted we continue to give this. I can’t figure out why. Why give a medication that doesn’t seem to help as opposed to give more of another that does help. Am I crazy?

7. I hesitate to switch PPI’s when I know that there is potential for this to be effective and I hate the thought of having to “start from scratch”, but would my son benefit from Zegerid? I still have a script for Prevacid solutabs. Maybe he would have a better reaction this time?

In conclusion, I have seen what my son is like when he is feeling good and as his mother, I will do anything to help him have that all the time. I don’t think it is right to have this small child suffer like this when clearly there are lots of options. In my humble non-medical opinion, my son suffers from GERD. If it was something other than that, would he have improved on Zantac and Prilosec?

Thank you all again for your time and attention. Just being able to post this gives me hope.

[Anonymous]

Okay I am going to try and respond as best as I can, I have only skimmed your post b/c of children! Being on compound is where I would be weary at first. Check out Laura’s group intro and there is a prevacid 101 link. You could try a different form of prevacid as I have heard that compounded prilosec tastes horrible. You may also want to look into something like Zegerid. You do need to give the PPI more than once a day b/c of how quickly babies metabolize meds. The zantac needs to be spaced at least 4hours apart from the prilosec or it won’t work properly.

You can try mylanta cherry supreme at night if you need something else if it works then you have proof that you need more. Sorry to cut this short dd is up from her nap and “asking” to be freed from her crib!

[hellbennt]

Prevacid 101 (last post on the page) and read all about PPIs (prilosec, prevacid):

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

I am not adoctor and I can’t tell you what to do. I can only tell you my own experiences and all that I’ve learned by being on this board for seven (7!) years now…

zantac: figure out the proper dose and TELL doctor (do not ASK). From this link, you can learn proper dose and HOW to ASK pharmacist about it. then, you can TELL dr.

don’t just take my word on this, read here:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

mylanta cherry supreme is safe for even newborns. it should be this ‘kind,’ whether it’s the actual mylanta brand or a store brand equivalent- it should not have aluminum listed in the ingredients. there are many varieities, but there IS one kind that does not contain aluminum.

the dosing for mylanta is give in 1ml increments, up to 5ml over the course of a 24hr period. if you see loose stools, back off.

you can give the mylanta mixed along in with the zantac, or give it close to the zantac, but you MUST NOT give zantac or mylanta w/in 4hrs of the prevacid.

you really SHOULD give the zantac until you get the prevacid figured out.

it can take up to two weeks for you to see the full effects of the prevacid and if there isn’t any zantac, too, then it’s as if your baby isn’t on any meds at all! I learned this the HARD WAY. my baby screamed/shrieked/howled for 24hrs straight (we stopped the zantac to start the prilosec) and he LOST HIS VOICE.

as for your ped GI, I (we!) have learned that sometimes it’s better not to ask, but, rather, to TELL.

as for the compound:

take it and give it for two weeks and, in the meantime, FAX YOUR DOCTOR to TELL that you want it a different way. Personally, I’d go buy Bufferbabies and make your own compound; that’s what I did.

have you read through Prevacid 101?

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

Give the prevacid 2 or even three times a day. Personally, I’d research from the above link, Prevacid 101, and also http://www.marci-kids.com

and then TELL doctor.

FAX FAX FAX the dr

don’t wait for a call…

start off with a THANK YOU

keep it short & sweet

stick to the FACTS (no emotions and ramblings)

state current meds, doses & symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to tell them fax was sent

call again laterto discuss requests made in fax, ie:

have you called in increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxingthe doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

[hellbennt]

Thank you all for the quick replies and attention. After some much needed re-grouping, I believe I have at least decided on a course of action. First, I sincerely apologize for the length of my post… very long winded. Furthermore, my spelling was atrocious! I guess that’s what happens when you compose an e-mail at 1:30AM and are suffering from sleep deprivation. J Today is another day.

Cooper’s mom (Beth): Thank you very much for taking the time to reply. I couldn’t imagine having more than one child. I have the utmost respect for moms of several… how do you do it? In regard to your advice… Yes, I have gone through the Prevacid 101 thread. There is such an abundance of good information in there. Putting it to use can be extremely overwhelming, though. Sometimes it’s tough to decide where to start.

hellbennt (Laura): Thank you also for taking the time to respond to me. I am sure you get tired of repeating the same information over and over again. Your efforts are heavily appreciated.

Both of you had made several of the same suggestions, and I intend to follow as much as I can, but I need to say that I am aware that neither of you are providing medical advice, just your experiences. That is certainly all I am looking for – how other parents successfully got through this. And if there are things I shouldn’t do, things you’ve had bad experiences with, I would love to hear those too!

First, I plan on addressing my GI. I really do love this man, when I can see HIM and speak to HIM. Getting around his staff is a mission all its own. I called today and scheduled a follow-up appointment. It is still several weeks away, but I do plan on speaking to him. I am also planning on sending a fax. What a fabulous idea. I never would have thought of that. (I did read that recommendation somewhere else in this board, but I must have been so out of it…) However, my hang up on that is leading into the second issue…

The MARCI-kids website is currently down and being rebuilt (according to my computer). I am certainly unable to access any of the information provided there. I feel as though (becasue I can’t access their recommendations) I am entering into a battle unarmed, so to speak. Since the website is inaccessible, does anyone have anything that they could provide me? Studies, dosing charts, recommendations? I was able to get several items from this forum, such as a dosing chart found here:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2668

Is this information still good? Is this the current recommendations? Next, I have an explanation about PPIs that I found here as well as an article from the Journal of Pediatrics in the same post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=6026

Is there anything else? Next, I really wanted to try the Mylanta out. So, out to the grocery store I went today… four stores to be specific. I could not find that Mylanta anywhere. Shortly after I got home, I found this:

http://pediatrics.about.com/b/2010/12/01/mylanta-recall.htm

Totally figures that it would be recalled when I was attempting to use it. Any other suggestions? Is there something else similar? Everything that I looked at today had aluminum in it, so I didn’t even bother.

As for the Zantac, I am pretty good at the dosing as we have been doing that since he was three weeks old. Furthermore, I mailed an order for BufferBabies today. I figured, worst case scenario, if my GI won’t get on board, I would go OTC and find a GI that will. I am taking a look at the “finding a GI” thread next. From other information that I’ve read, BufferBabies has made all the difference whether it was used with OTC or not. I would certainly consider Zegerid but I am hesitant since the Prilosec has already been in his system for over a month now. With that being said, another question comes to mind and I have heard conflicting information on, but if there is an increase in the current Prilosec regimen, do you need to wait to see the effects of the increase as you do when you first start the medication?

So far, I have followed some of the MARCI recommendations, but it is difficult for me to get the full picture as the place with all the information is inaccessible. I have seen some small improvements, but it is certainly far from good. I am happy that he has some relief… it’s better than nothing.

If anyone can offer anything else, I would be so appreciative. Thank you all again!

[hellbennt]

the charts are still good/up to date

you can always email dr philips or call him and he will contact/communicate w/ your dr if need be:

you can call them & email dr philips -he will even contact your dr for you!!! (he is a PHARM D not a MD- his knowledge is PHARMACEUTICALS, ie PROPER PPI dosing in infants)
Philips<phillipsjo@health.missouri.edu >
Office Phone: (573) 884-0672

I would still give mylanta- I read about the recall & it’s for a small amount of alcohol that MAY be in some of them- I don’t think this would deter me? hard to say= but it was a GOD SEND for BOTH my refluxer AND my non-refluxer! for us, in casa hellbennt, we rely on this stuff much like the father in My Big Fat Greek Wedding relied on his Windex, LOL!!!!

personally I think I’d skip the zegerid and just go for bufferbabies, with a dr’s rx and, if it’s not high enough, I’d add in my own from OTC…

it can take a day or two or, at the most three, to see the effect of a dose increase of a PPI. OR, it can be immediate, LOL.

[Anonymous]

I had the same problem with the mylanta. finally found some cvs makes a generic cherry supreme with no aluminum. just got it yesterday. sorry for the poor typing i am doing it with one hand on my cell phone lol.

[hellbennt]

Again, thank you for the responses.

hellbennt: If I am able to get my hands on a bottle of Mylanta, I would most certainly use it. The problem is finding one in my area… however, I will most likely try CVS tonight as dee1028 suggested. So thank you dee1028 (Diane). I do have a CVS nearby and there are several on my husband’s truck route, so hopefully we can locate what we need. Thank you for taking the time to post!!! Now that’s talent if you ask me… I’m lucky if I can dial my cell phone, let alone type sentences!

hellbennt: I have already e-mailed the good doctor. Some of what is posted above is what he has. I sent that e-mail earlier this week. I was able to locate his information in another one of your posts. I certainly do not expect to get a response… I could only imagine how busy he is. I am also certain that there are so many people that mail him and need his help. How could he possibly get to everyone? I am just thankful that I was able to locate some of his work and information through this site. If he responds to me, I would consider myself very lucky… if he was able to communicate to my GI, that I would consider miraculous!!!! And I sincerely believe that my GI’s office could use some of his information. Based on a discussion with “the nurse” today, I am really starting to question this process with them. Really, I am not trying to insult anyone, bad-mouth anyone, or insult anyone’s intelligence but I ask questions about my son’s care and medication and I’m the bad guy. On top of that, I’m spoken to like I’m and idiot. Really, I didn’t realize that “new mom” was equal to “stupid”.

So to add an update here… my conversation with “the nurse” was sparked from a message that was left at their office by my husband. Like me, my husband had decided that enough was enough and he called requesting an increase in the Prilosec. He did this on Monday. I chose to post here and send an e-mail as I knew that he wouldn’t get very far. Well, he did better than I would have… the GI doc increased the Prilosec to 3ml once a day from 2.5ml once a day. Needless to say, I think that this is still not enough. Based on this information, he probably isn’t even getting what is going in:

We also do not recommend that you give less than 3.5 mL of a PPI suspension at any concentration. This is because doses smaller than 3.5 mL do not provide enough buffer to adequately protect the drug from being destroyed by the acid that is present in the stomach.

This came from one of the MARCI documents about what Proton Pump Inhibitors are. So according to this, the increased dosage doesn’t even meet these guidelines.

“The nurse” called today to follow up (they have never called before to follow up, so this is new) and I answered the phone. I specifically asked what the Hydroxyzine was for. Was this to help with reflux or his nighttime congestion? I specifically asked this as upon reading about Nocturnal Acid Breakthrough (I clearly think this is one of our major issues) the study indicated that giving an H2 before bed would be more beneficial than giving a PPI. I wanted to give a dose of Zantac before bed and wanted to make sure that these meds did not conflict.

Nurse told me that the Hydroxyzine was to help the reflux and the congestion. Furthermore, I shouldn’t give the Zantac before bed as the Zantac is not meant to be an “as needed” drug. It needs to be included in his daily regimen. Also, she suggested that the PPI be given at night instead of in the morning. Clearly, I am confused by this as it is absolutely contradictory to any information that I have read. So, I listened and agreed and mmm hmmm, mmm hmm. She stated that by my doing this, it would make the Prilosec fail. OK. This is the second time that she told me that the Prilosec was failing, so I had to ask… Why do you think the Prilosec is failing? Her response was that since we requested an increase, that meant it was not working for my son. The dose that was provided by the doctor originally should have been a “one time only” dosing. She followed this up with something along the lines of, I’ve been doing this for over 10 years and we have had a lot of success with this. Lovely. The only information that I was happy about getting during that phone call was their fax number.

So now, going to go in search of Mylanta Cherry Supreme and await the BufferBabies, and pray.

Thank you all again!

[hellbennt]

we haven’t addressed mspi yet…but you might just want to wait until baby is on ‘right’ meds…

if you get desperate as you wait, you can always get over the counter capsules of prilosec or prevacid- you open them up. give the beads on an empty stomach, followed by a ‘meal’ 30 minutes later. the beads need to be administered w/ a 1/2 tsp of applesauce…

[hellbennt]

I managed to get the CVS Cherry Supreme and gave it a try this afternoon. Seemed to do the trick. We had a very bad night last night so I knew that today was going to be bad. Thanks again for the tip!!!

hellbennt: I am pretty certain that MSPI is not an issue as I believe that was ruled out with a stool sample and blood work? I could be wrong on the testing done, but I know that we have tried every formula under the sun with the exception of Neocate. At birth, he was on Enfamil Premium. (I was unable to breastfeed due to a past surgical procedure.) From there we’ve done Nutramigen and the AR. We had the best luck with the AR while on Zantac. I had read several articles stating that combo would be ineffective, but in our case it worked. Shortly before the Prevacid attempt, he quit eating the AR… so we tried formulas until we found one that he would eat and reasonably keep down. Gerber Good Start worked for a while until recently the switch was made again to Similiac Advance. Really, he just quits eating them. That’s a signal that things are going south. I think we also tried Similiac’s version of Nutramigen (the name escapes me) and those were the two he tolerated least. Right now, he’s holding on and I believe that he is mostly comfort feeding. For the last two days, I had to make a change in the solids that he’s been eating. With this “flare up” he started spitting up his meals (this is new). He eats the Gerber Stage 2 Fruits and Veggies. I mix oatmeal with the fruits and rice with the veggies. It changes the consistency for him and he seems to like this. However, I quit mixing the cereal in as when he spit that up, he cried and shrieked. I think it was irritating the esophogitis (sp?). So, I am leaving the fruits and veggies thin. That way, if they make their way back up, it won’t be so abrasive. That’s my theory anyway.

Yes, I am just about desperate. Last night, he slept from about 9:30PM until 11:30PM and stayed awake until about 3:30AM. I got him to go to sleep on me, and that lasted until about 7:00AM. He was up for the day then. Napping was nonexistent today. But that is something else that I wanted to ask about… his sleeping arrangements. When he was weeks old (5 I believe) we purchased a Nap Nanny. That is where he slept. He was also swaddled. This last good period after the Prilosec kicked in, we weaned him off the swaddle and the Nap Nanny. He was doing so good that we thought it was a good time. Furthermore, he began sitting up in the Nap Nanny and would be at risk of tipping himself over the edge and getting stuck there suspended by the safety harness. (That was a recall issue, I believe.) We kept a close eye on him and once the sitting up started, we ditched the NN. So he was sleeping flat in his crib. Needless to say, he is sleeping on me or with us in bed. I am not a big fan of this (I think co-sleeping would be great, but I am way too paranoid about rolling on him, etc.) and would like to have him begin sleeping on his own again. But obviously, being flat has become an issue. Any thoughts for this? Mattresses? We tried to elevate his mattress with little luck. He slides regardless how small the angle. Is there some sort of bigger version of the NN? We gotta do something here.

So, I am following the 3.5ML dosing guideline for now. It’s once a day. This will do until the BufferBabies makes it here. Then I’m going Prilosec OTC with BB. Our follow up with our GI is February 2. So, I’ll keep that appointment but we are looking for another GI. My sister is in FL and we are in PA. So I asked her to research her area and we would fly down if that’s what it takes. Really, we would go anywhere at this point to get help and relief. She said that she heard wonderful things about Miami and the university. So I’m hoping she has a lead.

That’s the plan, for now anyway. It may not be the greatest, but at least it’s something toward relief. I hope.

[hellbennt]

I live in Miami! I have a lot more to say, but I’m on my phone.

I’d start Prevacid otc now, why not? Also when we were at our lowest/most desperate, carafate helped. FAX your request. Do a search about it & how to space it from other meds.

Does sound like mspi ? All

those formulas?

More later…

[hellbennt]

Awesome… looking forward to it!!! My sister lives/lived in Coral Springs and Ft. Lauderdale and my family owns a condo in Lauderdale by the Sea. So, not too far away from you at all. When I visit, I always make it a point to spend a day at South Beach.

Although I’m not sure what you are thinking about MSPI, we will try anything at this point. But we can discuss this further. You first. 🙂

[hellbennt]

ok first of all:

go to the top of this page, click on ‘settings’ then ‘edit profile’ and then in the signature box, put baby’s name (if you want or initials or nickname), age (date of birth, can be just month and year), what formula and what meds & forms & dosing

this way I/others won’t have to keep asking you stuff

Ok so what formula is baby on & for how long?

how is poop? regular formula fed baby poop?

peanut butter consistancy?

mucousy (can look like snot, stringy like the strings of the inside of a banana, like jelly, like cottage cheese)?

hard pebbles?

how is gas?

painful? foul smelling?

does baby strain & grunt to poop and then when it comes out, it’s soft?

does baby have excema? rashes?

congested?

MSPI ‘Main’ page: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

Next: do you have any zantac or tagament or pepcid or axid from before the prevacid?

[hellbennt]

Hello all. I apologize for the delay in posting. With Christmas and the start of our new medication regimen, things have been quite tight here and this is the first opportunity I have had to reply and update. I also apologize for length.

hellbennt: We have considered MSPI many times. Yes, he has problems with most items in your list without excema and rashes. I brought it up again to our Ped. She still seems to think that this is a big ‘No” as Mason does not have blood in his stool. She stated that 90% of MSPI patients have blood and that is their first indicator that MSPI would be a culprit. She also stated that the only sure way to determine this is for blood work. I have to admit that I have a standing order to have Mason’s blood work done but have neglected to follow through (mostly because all of the draw labs in our area do not like to draw on children and have referred me to the Children’s Hospital. We have not been able to get in there). This is still being talked about and evaluated and not out of the question. I definitely see your point.

As for my update and more questions, here goes.

We began Prilosec OTC and BufferBabies on Saturday, December 18^th, 2010. I followed the dosing recommendation provided with my order based on Mason’s weight (7.6 kg). This dosing is as follows (I will update my signature after this post to reflect this):

“Give 3.8mL (7.6 mg) 3 times per day. Concentration 2mg/mL One dose contains 7.6 mg omeprazole”

I mixed the BufferBabies per the instructions and began administering. Within 48 hours, we began seeing an improvement in many areas of Mason’s behavior. To date, the screaming, squirming and rolling have ceased. He is certainly not as uncomfortable as he was prior to this new dose. Furthermore, a few weeks ago, our pediatrician stated that she thought that Mason would not be sitting on his own as it was too uncomfortable with the reflux (putting pressure on his abdomen). Needless to say, within 72 hours, he began sitting on his own and playing with his toys. Coincidence? Maybe, but this mother thinks not!!! His attention span has improved massively and he is generally happy. Relief. Thank you BufferBabies.

With all of this positive behavior going on, there are still a few things that are worrisome and I was hoping someone could shed some light on this for me. I am certain this information can be provided by Reflux Solutions, but I am sure that someone out there has had these issues and the answer is somewhere in this forum… I wanted to ask here before I email.

I am to understand that the “full effects” can take a week or more to be apparent, but I believe that we are on the right track here and might need some “tweaking”. I noticed that after about 6 hours, it “seems” as though the Prilosec dose wears off. It is especially noticeable at night. It is clockwork with my son. Six hours after his last Prilosec dose, he’s awake and unhappy. I am dosing the Prilosec 3x daily as suggested but at these intervals: 8am, 2pm, and 8pm. After his last dose, he is up at 2am, without fail. His reflux has always seemed worse at night, but that might be my interpretation as we are all sleep deprived in this house. In order to get him back to sleep, we give him a bottle (Similiac Advance) but that seems to make matters worse… formula and reflux don’t mix. We have tried just giving Pedialyte instead of a bottle, but this doesn’t help as that is not helping hunger. He is just awake again in another hour. We have also been using Mylanta Cherry Supreme as needed, but the relief from this is also short lived… he is back awake after 2 hours. Then, the entire cycle repeats. In addition to this, we have discontinued use of Zantac. Although this was a very useful medication to us, it seems as though it simply no longer has an effect on our child. There has been no difference while off of it as when he is on it. With all this being said, I am currently in the process of ordering an inclined mattress for Mason as he has always slept on an incline and I feel that this would be beneficial regardless. However, this process is slow going as I have to go through the insurance company and they work pretty slowly. So, at this time, we are working with what we’ve got.

On Tuesday, December 28^th, 2010, Mason had an appointment with our pediatrician. Please keep in mind that I began the marci dosing without her knowledge. I was asking her lots of questions about Mason’s sleep issues. At this point, I proceeded to inform her of the medication changes I had made. To my utter shock and surprise, she is fully on board with this. She had stated before that she prefers to take a more conservative approach as GI is not her field, but certainly feels comfortable with this dosing as she feels Mason is a pretty severe case. I was so relieved. Ultimately, she believes that it will take up to 3 weeks for Mason to see the full effectiveness of this regimen and suggested that we check back with her then. If he is not any better, she is going to contact our GI and get us an appointment sooner than our standing appointment in February. Furthermore, Mason has not gained any weight. This is the first time that he has not had an increase over a 30 day period. He had not lost weight, just not gained. The pediatrician was not concerned about this… yet. But it disturbs me. His eating seems regular and formula consumption, although low in my opinion, is holding steady. He is not spitting up consistently (only during the night on occasion). Ultimately, as I stated before, I am fully confident that we are on the right track, but need to “tweak”. So here are my questions. Please feel free to relay any of your personal experiences. I appreciate any feedback. Also, I may have missed these answers in the sticky posts. Please feel free to point them out to me again. Often times, I can be staring at the answer and have no idea that it is right in front of me!

1. Has anyone had issues with the Prilosec/BufferBabies appearing as though it was wearing off after 6 hours? Should this happen even when I am dosing 3x a day? Because this is happening, is a higher dose worth considering? Should I email RS and ask about increasing this?

2. Could this be happening because I went from using prescribed omeprazole compound to Prilosec OTC (and not generic omeprazole)? Since they are “almost” the same thing, could the slight differences be like changing PPIs and it is taking longer to hit his system?

3. Should I begin incorporating Zantac again? Big dose at nighttime? If so, could anyone suggest a dosing regimen? Has anyone else had problems with this drug just not working anymore?

4. Am I spacing the Prilosec doses properly during the day? Should dosing 4x daily be a consideration? Can anyone tell me how they were dosing their child? I could be fully wrong here, but I was thinking that his Prilosec is intended to help during the day when he is mostly eating and the reflux is worse, but I think my child is suffering from Nocturnal Breakthrough… what is done about that? Anyone else out there managing this?

Anything that anyone could add would be so helpful. I have been hanging all my hopes on the BufferBabies and Prilosec. It seems like it will be a good thing, but getting from point A to point B is a struggle. I am trying to remain patient and be thankful with the progress that has been made, but I am very anxious as I believe that things could be so much better.

Thank you all again!!!

divawife&mom2010-12-29 11:41:39

[Anonymous]

i’m so glad to hear that the bufferbabies is working for u. i am currently waiting for mine to arrive snd i am hopeful. i have no experience with this but i can tell you what i would try. why dont you try giving the doses around the clock that is 3x’s in a 24hr period so instead of 8, 2, and 8 try 8, 4, and 12. if his pain is more managble during the day maybe if you space the day time doses further apart he can have more relief at night…idk ? as far as the bottle at 2am is it possible that he just wants the bottle oiut of habit it is my understanding that once a baby is acertain age they no longer need midnight feedings. if he absolutly insists maybe try giving half a bottle so his tummy wont be so full? i would forget about the zantac it doesnt sound very helpful. where are you getting an inclined matress from? right now my little one sleeps on the tucker wedge but will outgrow it an inclined matress sounds perfect!

[hellbennt]

Ok, well, progress 🙂
Dr is ‘right’ about blood, but only kind of; there is difference b/t
Allergies & Intolerances & there is (can be) blood w/ an allergy, but
There isn’t necessarily blood w/ Intolerances.
One is an IgG reaction & one is an IgE reaction. I can’t do a search for you atm (at the moment); I’m on my phone…

As for meds: calculate highest zantac dose & give 4hrs frm the ppi.
Give ppi like 8, 12 (or 1 if you can push it), 4 (5?) & then max dose
Of zantac @ 8pm

There definitely times when Jonah was on ppi & zantac.
Highest dose by weight is 10mgs per kilo; don’t just take my
Word on this! There’s a link from Prevacid 101
7.6 mgs x 10= 76
That’s 76 mgs of zantac for a 24 hr period
Your bottle says 15mgs/ml
So 76 divided by 15= 5mls of zantac for the
day
What zantac dose is baby rx’d now? hellbennt2010-12-30 13:05:52

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