Who is in charge?

[Anonymous]

Ok…so I’m a total newbie to this site, and the world of Gerdlings too…but based on the great info that everyone has given me, I called my Ped’s office today and asked if I could come in to talk about the Reglan that was prescribed (for the DGE that I do not think our DD has), and to ask if they had ever used PPI’s since it would seem that her Zantac is losing it’s efficacy.

Of course my dr wasn’t in, but I talked to her nurse…let’s call her “Bwitch”…So Bwitch asks me what the problem is…I explain that I am not comfortable with the Reglan for two reasons-one the side effects and two the fact that we are treating a condition that we haven’t had a definitive diagnosis on (I mean, come on…my dr asked me if she sticks her tongue out up to 2 hours after a feeding and does she ever posture-that’s a freaking diagnosis for DGE?), and that our pharmacist says that we need to up the dosage for Zantac, but they of course refer us back to the dr for the dosage-so I need an upped dosage or something because is the Zantac really working if I can’t put my poor baby girl flat on her back or tummy? I also ask about the PPI’s and try to show the Marci-kids research, which Bwitch looks at like it was a damn anthrax letter. Her response to all of that “well, we can give her the PPI’s if you want”…IF I WANT? I did not go to medical school nor do I play a doctor on TV..what I want is a doctor’s office who will consult and discuss with me-not throw worthless or unnecessary drugs at my daughter like throwing spaghetti at a wall.

PLUS, if these are the people who are supposed to be responsible for her medical care wouldn’t things like “I can’t put her on her back, so I’m worried about developmental delays…or, her eating habits have changed…or her sleeping habits have changed”…wouldn’t some of these things be worth further investigation? If some of these things are impacting her health, wouldn’t it be worth it to help us fix them? They tell me to get a Tucker Sling (that’s a whole other rant), but when I mention that she sleeps swaddled (and very happily so), my Ped’s response is, “oh yeah-you aren’t going to be able to do that anymore.” Oh-ok, sleep is not important then to an infant. Who cares if her mom is impacting her sleep routine all of a sudden and asking her to sleep on the side of a mountain that feels nothing like what she is used to…Not important, right? Clearly not…I don’t know how it is in y’all’s area, but it seems like all of the doctor’s offices by us are staffed by exactly one dr, one nurse, and the rest are medical “tech’s” who just graduated from Bob’s Medical School and Hair Studio. Which means that I get people with less knowledge than me taking care of my child. The fact that Bwitch is one of the few who does posses (too mad to spell correctly) medical knowlege doesn’t give her the right to be dismissive to me or the needs of my beautiful baby girl who is hurting! Kiss my butt-this is my one and only child and I will do anything that I have to in order to get her the best care that she can have…..

So now that my angry typing has woken up my daughter, I’m going to go…thanks for listening to me vent…we’re looking for a new pediatrician come Monday…

[Anonymous]

I’m so sorry.

Keep advocating & researching for you dd. You are doing a great job.

[Anonymous]

I am sorry you are going through that all. I agree I would look for a new ped aas well. I hope the hunt goes GREAT for you.

As far as the DGE drug Reglan alot of times GIs will trea tthe symptoms they “see” and if it works problme solved. The purpose is that if th evomittign lessens then the DGE was present and is gettign better.

The problem is that the easieest test for DGE is COMPLETELY and utterly unreliable. So Dr/Gis will treat the symptom and NOT rely on the testing for this issue.

The only reliable test for DGE is an antro duodinal manametry test nad NO GI will ever do this on a baby unless thye have a G tube in place. The probes go in the G tube site and into the intestines.

With out a G tube the probes will go in the nose and into the intestines. NOT FUN. They do sedate for that issue though but still come on, that’s jsut not fun.

And yes, I know someone who went through this without a G and had the probes place dint he nose under sedtion. The probelm is the sedation cna give “false positves” It’s a catch 22!!!!!

So for all that rambling…I really would try the Reglan. I truely knwo some kids who this gdrug is a godsend for them. Without it being used they woudl be in horrible pain everydya due to their DGE…..Not to mention they would not eat properly so they would not grow.

We tried it. The side affects are COMPLETLY reversible. the Dr shoudl have explained how to reverse them. We were told to stop the med if and when we saw certain side affects. Then we wer eot gvie one full dose of benedryl. We wer eto continue following doseing instruciton for the benedryl until the side affects went away.

What you are seeing as the side affects are not actual seizures, they are an allergic reaction that stops once the benedryl is taken. NTW childrne with neurological disorders are not suposed to take reglan.

I am sure this is WAY more info than you needed…LOL

I guess my take is, it’s workth a shot if you think it may even be a LONG stretch to helping out your child. At least it was for us.

[Anonymous]

I’m so sorry you had to deal with people like that. Its hard enough to have a baby in pain. It makes it worse when you have to deal with idiots on top of it.

I also did not go to med school and I do not play a dr on tv (LOL- that is BTW the funniest thing I have read in a while- thanks for the laughs) but this is my opinion and personal experience. When we first realized the Zantac was not going to cut it with my son (at 2 months), my ped prescribed 15mg per day Prevacid and Reglan. Like an idiot, I didn’t look up Reglan, anything about Reglan, I just gave it him. Which was a pain in the butt, b/c its like a 5 times per day dose on top of giving the Prevacid 30 min before meals and on an empty stomach. Like I have time or patience for all of that LOL. I noticed my ds was acting weird. He was hitting himself in the head and acted like he literally wanted to crawl out of his skin. I asked our ped GI and he said to stop the Reglan immediately. My ds stopped those behaviors.

I never understood the need for the Reglan b/c my son does not have DGE based on testing. My son “comfort ate” all day long to kill the pain from the reflux. So, by giving him Reglan I emptied his stomach faster and he then ate literally ALL the time. My ped to this day claims she has never seen a reflux baby who ate sooo much. Not that eating a lot is bad (he could have been not eating which is also a big problem among refluxers) but it was insane.

A new ped sounds like a great idea. We had a gen pract first who told me “all babies cry, you know?”. He also informed me that the new thinking amongst drs is that they do not give meds to reflux babies anymore. I was like???????????????? I questioned him about the NICU babies that regularly get reflux meds and he said he was not a neonatologist so he could not speak to that. On the way out the door, I asked for our charts. We got a new ped who was a total idiot, but thank God he moved after like 2 weeks. Our newest ped is pretty good. She at least listens and seems to care. Since Nicholas is the worst case of reflux she has had and since he is on a high dose of Prevacid, when I call my ped herself calls me back. This is a new thing as of recent, but I am starting to like it. My ped GI is an idiot. He is the nicest man, but he is VERY old school.

Sorry so long. Take care! Good luck finding a new doc. HUGS!!

kdub2008-08-02 10:27:31

[Anonymous]

Sorry you had such a bad experience. You are a great mommy and you are doing the very best you can. I agree that you need to find a new ped asap. do you have a family doc that you trust that could possibly give you the PPI script in the mean time? Sometimes family docs are more willing since they deal with adults with reflux and understand that amount of pain that can be involved. Just a thought in case it takes a bit to get into the new ped. Good Luck.

[Anonymous]

I’m sorry you’re going through this as well. It’s good to see that you’ve been educating yourself and advocating for your daughter! Keep pushing, and try to find a doctor who will listen to you and take your concerns seriously. And keep that sense of humor – you gave me a laugh or two as well!

In the meantime while you perhaps try to get a PPI, you could try to maximize the benefits you can get from the zantac. What is her current dose, and her weight? Zantac is often underdosed, but up-to-date literature states that the recommended dosage for infants with GERD is 5-10 mg / kg / day divided up into 2 daily doses. As well, what is she eating (breastmilk, brand of formula, etc.)? You may have already explored the possibility of MSPI (milk soy protein intolerance) but just in case you hadn’t I thought it might be worth mentioning.

[Anonymous]

Thank you for all of your well wishes and sage advice. We had a very rough night last night. She comfort ate almost all night and when she was in her crib, I could hear her “chewing” her spit up. We’re breastfeeding exclusively, and eating like a dang pig-we have started eating about every hour during the day. My ped told me that she was concerned about her weight (11 WO, almost 13 lbs) but according to the latest charts-she’s about 75th percentile on weight-should I be shooting for a sumo baby instead?

Jessica-after last night, I might be desperate enough to try the Reglan. “Bwitch” claims that my ped is going to call me on Monday-maybe she can actually spend a few minutes telling me how to reverse the side effects. Otherwise, I’m skipping it and asking for PPI’s. I’m frustrated that it felt like Bwitch was just going to do what I asked for regardless of her medical opinion, but if that’s all I can do until my baby can get in to see a specialist, I can live with that…

Anywhoooo…she’s on .8 CC’s of (I have no idea how to convert that to mg on this brain) 3 times daily. I was trying the ped’s suggestion of thickening up some EBF with rice cereal…until I noticed that the Gerber DHA has soy and tuna-so much for avoiding the MSPI (yep Sheri-you are correct-we have explored that). However, I did find some organic soy free rice cereal at the store yesterday. We might try that again b/c that really does seem to settle her tummy during the day…I’m just not crazy about trying that at night.

Beth-funny that you mention that about the family doctor. My husband and his GP have a man-crush relationship…I swear, I think that they come up with ideas for my husband to go in for an appt so that they can tell disgusting jokes and try to get one another in trouble. My husband thankfully has an appt to get his Chantix (hallelujah) refilled on Monday and he is going to talk to his BFF about our troubles and see what he might be able to do for us. In the interim, I have also identified a Ped GI Specialist that a few people recommended on this site (and who is covered by my insurance-thank God!)…he’ll be getting a ringy dingy from me on Monday morning.

We also ordered a tucker swing and received that earlier this week. My oh-so-helpful Pediatrician advised me to get a medium saying that it would fit our daughter. Yeah-it “fits” right over her head it’s so big! However, I think I was able to sew it up well enough this morning so that we are going to try our afternoon nap in that. Anyone have any good advice for using that monster? At this point, I’d strap her to the dog’s back and have her sleep there if I thought it would help..but the dog is too interested in how her diapers smell, so that isn’t going to help anyone…but the dog. 😉

BBerrysMom2008-08-02 13:01:29

[Anonymous]

Just and FYI since they aren’t telling you good info. You can’t thicken bm with cereal b/c the enzymes in it break down the cereal… Sorry. I am not sure about using the thick it or simply thick.. somebody help me on this one!

[Anonymous]

are you kidding me? that frosts my cookies!

[Anonymous]

Your posts are cracking me up! Ok, not the part about not getting good help and your poor dd being in pain…

Beth’s right about the BM and cereal. I do know of one mom who did it though and found it to be helpful. So, if it’s working ok, then I guess it’s allright. Really though, all you would be doing is adding calories.. which, if the doc’s concerned about her weight, then I guess that’s why she is having you do it???

I hope you have better luck with the GP. Hang in there.

[Anonymous]

You know-humor is all I have these days. BB (before baby) I was a pedicure-havin, hair-stylin, fashion-conscious, lingerie-wearing, margarita-swillin gal….and now I’m the girl who stood in front of my DH with my milk stained nightie and my granny panties pulled up to my armpits asking him to wipe the spit up off my shoulder. Until that time when my DH and I get this whole parenting thing down, all I have is a mouth that can curse in 4 languages (5 if you count pig-latin) and tell an occassional joke.

Thanks for your support! Hopefully I will be able to repay the favor soon with some good advice…but don’t we all wish that we were not becoming experts in this particular topic…

[Anonymous]

So I think you said she is almost 13 lbs now? That would be 5.9 kg. Here is the minimum and maximum recommended dosage for Zantac based on that weight:

Minimum: 5 x 5.9 = 29.5 mg total for the day. If giving it 3 times a day then that would be approx. 9.8 mg at each dose. The syrup should be 15 mg / mL (double check yours to be sure) so 9.8 mg would be in 0.65 mL. This means her minimum dose, based on weight, is 0.65 mL given 3 times a day.

Maximum: 10 x 5.9 = 59 mg total for the day. If giving it 3 times a day then that would be approx. 19.7 mg at each dose. The syrup should be 15 mg / mL (double check yours to be sure) so 19.7 mg would be in 1.3 mL. This means her minimum dose, based on weight, is 1.3 mL given 3 times a day.

If she’s getting 0.8 mL three times a day currently (make sure it’s a 15 mg / mL syrup you’ve got, otherwise the calculation would be different) then there is definately room to increase the dose so that she could get more relief. I would personally give closer to the maximum dose since she’s in obvious distress and not getting enough relief from her current dose.

Also, I should probably mention that I’m a pharmacist, just so you know you didn’t get some crazy advice from some shmuck on the internet!

[Anonymous]

LOL!!! You are seriously making me laugh so hard. Thanks b/c I haven’t laughed this hard in a long time!

It is great that you are looking for a new doctor. We have been through many. There are just so many of them out there that do not take reflux/intolerance seriously. Good for you for doing your research. I hope Sheri’s help with the new zantac dose helps in the meantime.

[Anonymous]

Sheri-smoochies! Thank you for not being a shmuck!

-Shellie

BBerrysMom2008-08-02 21:42:47

[Anonymous]

Shellie,

I don’t have anymore advice that the other ladies haven’t already mentioned (& besides my inital advice to keep advocating) but I just had to chime & tell you that you are making me crack up too. You remind me of myself (my dh has man-crushes as well & the milk-stained pjs are my lingirie these days too) but my sense of humor never translates that well to IMing, email or message-boarding.

[Author]

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