Frustrated!

[Anonymous]

I posted about this in another topic, but I am so frustrated right now, I need to vent. My baby is continuing to have problems eating and it’s so frustrating to try to feed your child and not be able to even though he’s so hungry. He keeps popping off the breast and crying, and it takes a lot of time and patience to get him to eat enough.My family tries to understand, but I don’t think they quite get it.

The dr. put him on Zantac last week, and I e-mailed her to let her know it wasn’t helping, told her how hard it is to feed him, and asked if there was anything else we could try. I also mentioned that he hadn’t pooped in over 4 days and it seemed to be making him even more uncomfortable. This was her response:

“Hi! The trial of Zantac was to see if we could alleviate the pain( if
ever) associated at times with reflux. This is usually our first-line.
As I said I think his primary problem at present time may be colic. Dr.
Howard thought he had colic as well ( based on a review of her
notes/diagnoses). Colic usually improves by 3 months of age give and
take a few weeks. If he were not gaining weight or even more so, if he
were losing weight, I would consider using a PPI or even doing a
work-up or referral.

At this point, I would just advise to watch for red flags like projectile vomiting ,fever,turning blue with feeds, etc.
We
have to see if his colic will improve ( a lot of times all it takes is
time). If you go to my website-www .permanente.net/doctor/aimeesimbre
you can look up the videos in newborn care and see “how to soothe a
fussy baby” and or look up colic in the healthwise encyclopedia. I will
enclose some facts about this.
If there are any more concerns/new
symptoms, then I would like to see him back at the clinic to make sure
he is not losing weight.”

So frustrating! I’d like her to come try to feed my baby once and see how she feels. The only reason my baby is not losing weight is because of my persistence to feed him. I feel like I spend about 75% of my day trying to feed a screaming baby.

I know that my situation is not as bad as many, and my DS could have a lot of worse things, but it’s still frustrating and it makes me feel sad. And I know this probably sounds stupid, but I get scared that my baby is going to associate me with these bad feedings/pain and will think negatively about me. I know that probably isn’t the case, but I can’t help thinking that.

Mainly I’m frustrated with my ped. because if she would just say “hey, let’s try something else,” I would feel better. At least *try*.

Okay, thanks for letting me vent! It’s just been one of those days that ends in tears and I needed a way to get out some of my frustration.

[Anonymous]

Beth, BIG BIG BIG Hugs!!! I’ve been there. It was terrible, seemed like a nighmare. Your story sounds exactly like ours. We were also told it was colic or breastfeeding problems like OAL. Hailey was difficult to feed, same description as Zachary. It started around a week old, and I hate to say, but got gradually worse. Our doc kept telling us to persist, and we did. We were waiting for her to “outgrow her colic”. Until at 8 weeks old, the feeding challenges turned into a flat out feeding strike. I couldn’t get anything into her. I was at my wits end. She was hungry but would not nurse or bottle feed EBM. Out of desperation we tried formulas- hypos and regular. This was no better. Our doc diagnosed her with reflux at that point, said to try the zantac for a few days, and if that didn’t work then we’d do prilosec compound. The zantac did nothing, the screaming and arching and feeding refusal continued. We tried the prilosec, but the compound was useless, and unfortunately, at the time, this was the only PPI available in Canada where I live, so we had no choice. We kept increasing the dose, saw several doctors, had tests, etc. The feeding remained a nightmare, I spent the whole day and night trying to feed her, 1-2 ounces. It was horrible. I cried a lot. No one understood and came back with useless advice (“she’ll eat when she’s hungry”, “she feels your stress so she’s stressed”, “a baby won’t starve, she’ll take as much as she needs”). Meanwhile, she’d go for half a day without eating, we’d switched to the bottle b/c I couldn’t keep up my milk supply, and the only way I could get her take anything at all was by trying to get her to sleep on my shoulder, then popping in the bottle. If she was relaxed enough, I could do it this way, but she still hardly ate, and it was very challenging, especially with my other dd, who wasn’t even 2, running around. It escalated to Hailey only being able to eat when asleep, in her glider, in the dark, in total silence, in her room, and even then it was hard. I felt trapped in the house.

Finally (she was 8 months) we saw a good GI who put her on prevacid capsules (which had just come to Canada), at a decent dose, which I managed to get increased to 30mg and we put it in CaraCream. It helped quite a bit overtime, but the feeding aversion was already there. I sought help from a feeding therapist when she was 8 months old and also refusing solids. We were in feeding therapy until she was 16 months old or so.

We finally did manage to get things under control, and at 19 months, she started to take her bottle willingly. By 16 months old, we were discharged from feeding therapy with a very fussy eater with a tiny appetite- but an eater nonetheless.

By her third birthday, Hailey was off prevacid, eating as per her own fussy and limited style, and drinking soy milk.

I’m sure these timelines sound terrible, but we got things sorted out too late. It was a long hard road, but hopefully if you get things sorted out earlier, you will go down a better path.

My advice would be- and I apologize in advance if it sounds harsh-

1) Get a new doctor. Tell us where you’re from and someone here can recommend a good doc for you. Either a ped GI or a good family doc who is knowledgeable about infant reflux. Your doc doesn’t take your situation seriously, colic is not a good diagnosis, and it’s too long to wait till he’s 3 months to get moving on a reflux diagnosis.

2) Get him on a good dose of PPI. I personally would try prevacid in caraCream (from marci-kids) as it was our saviour. Check out the marci kids website for more info and about dosing. They’re aggressive, but their doses work. I don’t know the new web address but hopefully someone else will reply.

3) Get help from others. It can be exhausting trying to feed a reflux baby, and you’ll need some rest for yourself.

4) Don’t worry about your baby associating you with bad feelings. Our feedings were nightmares- each and every one- and sometimes I even lost it… crying or screaming out of frustration. I’m not proud of it, but Hailey is the most loving child and she adores me despite it all.

5) When you get your new doc, ask for testing. We had an upper GI (which is essentially useless, especially as dd was not a spitter so we knew she didn’t have pyloric stenosis). We also had a swallowing study, and an endoscopy, and I found these very useful. The swallowing study/modified barium swallow/feeding evaluation may help to make sure that he’s sucking/swallowing/breathing/feeding properly, and that everything is going to the right place. Not everyone likes the idea of testing, though, so I understand that.

6) Consider MSPI. That is sometimes a factor that causes reflux symptoms and/or feeding problems.

Anyhow, hang in there. I know how hard it was. I felt like few people understood… the feeding aversion was so much harder then the reflux itself. But if you get a good doc, a good dose of meds, then that’s the right step. But the dose needs to be high enough, or else it won’t work. A doc who doesn’t think that there’s a problem probably won’t do that, but that’s just my experience. You can also contact Dr. Phillips directly via email (he’s from marci-kids) and ask him to contact your physician. He’s done it before, and sometimes can convince them to try different meds.

Good luck.

[Anonymous]

I replied to your other post. HUGS!!!

GET A NEW DR. No offense, but yours is an idiot. Colic does not exist. There is absolutely no reason for a baby to cry like that. NONE. Drs use the “colic” excuse when they have no idea what is wrong with your baby or are too lazy to investigate further.

Since she sent you that nice little link to the video, you should send her a video back. One of the hell you go through every day with feeds. It would show her that what is happening is serious and not normal.

[Anonymous]

It is a good idea to show your doctor video of you trying to feed your baby. Our doc did not know how bad things were until I brought Hailey in and tried to nurse her in front of him. Later on, he told me to bring a bottle and told me to bring her hungry, and he tried to feed her himself. Then he really knew how bad it was.

[Anonymous]

I agree with lori and Kristen. I can remember the night I tooK Ashlynn to the E.R. because she was crying(screaming) for several hours non stop and the E.R. dr told me it was colic and that she would out grow it at 3 months. Even though I explained all the screaming, refussing to eat ,non-stop projectile vomiting and not sleeping. Hang in there

I still get upset when my mom or mil tell me she does not have reflux and she needs to get off of those meds,but they did not go through what I did.

I thank god that I found this site, because all the girls helped from going insane.

[Anonymous]

Okay I am soo mad for you that I didnt’ read the other responses…

Find another Dr and do it now…sorry…..I had a GI like this and it caused Jedd to slip to 100% tube fed and he stayed there for months!!!!!!!

Don’t take it’; stand up and fight…sorry for the strong words. I just hate to hear how some Dr still belive that AR is COLIC. I think COLIC os a 4 letter word that NO Dr should use!!!!!

[Anonymous]

Thanks for all your responses! It really helps to know that there are other moms out there who have gone through all of this.

I sent my ped. a nicely but somewhat strongly worded e-mail back telling her in great detail what each of our feeding sessions is like and how I DID NOT think it was colic. Fortunately, I got a better response this time. She said:

“Thank you for describing his feeding in great detail. It really helps
me in my thought process as I try to help figure out what’s going on.
It seems like a feeding difficulty /swallowing difficulty.Certainly can
be reflux but I remember you mentioning that he started doing this
about 2 weeks ago only. This happens less commonly; I usually see
reflux really bad from the beginning then gradually improving over
time. Also, reflux usually happens after,or near the conclusion of
feeds.
I will try to run it by our pediatric GI tomorrow when I get
to the clinic. I’m planning to do an imaging study like an upper GI
just to check his anatomy.Another thing we can do is for you to bring
him back and I can observe his feeding at the office. I think that
would yield a lot of information…
Another option would be to see
occupational therapy to help out with the feeds, but this will be
later. I will try to contact you again after my chat with Dr. Davis
(GI).
A PPI is not totally out of the question, that would be the
next step in med mgt, if we really want serious acid suppression.What
number would be best to call you tomorrow?”

So at least something might get done…. I’ll let everyone know what her plans are and what, if anything, we find out.

[Anonymous]

zachysmom wrote: Thanks for all your responses! It really helps to know that there are other moms out there who have gone through all of this.

I sent my ped. a nicely but somewhat strongly worded e-mail back telling her in great detail what each of our feeding sessions is like and how I DID NOT think it was colic. Fortunately, I got a better response this time. She said:

“Thank you for describing his feeding in great detail. It really helps me in my thought process as I try to help figure out what’s going on. It seems like a feeding difficulty /swallowing difficulty.Certainly can be reflux but I remember you mentioning that he started doing this about 2 weeks ago only. This happens less commonly; I usually see reflux really bad from the beginning then gradually improving over time. Also, reflux usually happens after,or near the conclusion of feeds.
I will try to run it by our pediatric GI tomorrow when I get to the clinic. I’m planning to do an imaging study like an upper GI just to check his anatomy.Another thing we can do is for you to bring him back and I can observe his feeding at the office. I think that would yield a lot of information…
Another option would be to see occupational therapy to help out with the feeds, but this will be later. I will try to contact you again after my chat with Dr. Davis (GI).
A PPI is not totally out of the question, that would be the next step in med mgt, if we really want serious acid suppression.What number would be best to call you tomorrow?”

So at least something might get done…. I’ll let everyone know what her plans are and what, if anything, we find out.

Oh Good!!! I was so relieved to read this!!! Sometimes consistency pays off. I hope this ped. will take you seriously now that you’ve painted a clear picture of what feeding is like. I never want to see a baby in pain, but I REALLY hope that when you go in to show her what feeding is like that your baby is having a really bad feed at that time so she can see firsthand what it is like for you and the baby. That is what it took for Landen’s GI doc to beleive us (that he did not have Colic) I did a feeding in front of him and toward the end of it he refluxed silently, turned blue and stopped breathing (apnea episode) RIGHT IN FRONT OF HIM!!! We left with an Rx to pick up an apnea monitor, he never did want to raise his PPI dose, so we ended up finding a new GI anyway….but still. I HATE that they throw the term “colic” around like it’s a diagnosis. It doesn’t even exist….

Good luck with everything and keep us posted!

[Anonymous]

That;s def. a BETTER response. Push for an OT if you think you need it….esp. i fyou are seeign some feeeind aversin issues.

Normally though an OT can’t do a good job until the med. issues have been resolved and are under control.

BTW Jedd reflux got WORSE with time as it was left untreated….so it can happen.

I hope you get a call tomorrow and it goes well. A PPI sounds like it is in the future, thankfullly.

[Anonymous]

I’m glad that your doc responded, but don’t take no for an answer. I would personally have marci-kids try to call your ped. Sounds like she would be open to another opinion. But she’s also wrong about a few things:

About reflux only happening right from the beginning, that’s definitely not the case. Hailey’s was always there, but we didn’t know what it was, and the feedings got worse over time. Only when she refused to stop feeding did we find out it was reflux.

About reflux happening at the end of a feed, yes, vomitting outright will typically happen at the end of a feed. But if there’s a feeding aversion from the reflux, the whole entire feeding will be impossible. Or they’ll suck a few sucks, then it will hurt as it’s going down, and they’ll pull off and refuse etc. If there’s damage then it can hurt the whole time… kind of like squeezing lemon juice on an open cut.

I would also ask for a referral to a ped GI. My gut feeling is that if your doc is so conservative about diagnosis of reflux, treatment, and seeking simple services like OT, then she’s also going to be very conservative about doing PPI. Just a guess, but that’s what I found. I also found from experience that if the dose isn’t high enough it’s practically useless.

You may want to print off some of the marci-kids info, or direct her to a few choice links from the site.

HUGS.

[Anonymous]

Thanks for all the good advice! I am going to keep being persistent in trying to get the best care for my DS. In fact, my mom commented that she didn’t know I could be so aggressive. I guess it’s just motherly instincts coming out. I wouldn’t normally be as persistent on behalf of myself, but when it comes to my son…. I feel like I’d do anything. I’m sure most moms feel that way.

Some bad news…. my DS and I both have thrush. The lactation consultant I saw today said that this kind of thing can make the reflux much worse. Anyone ever had this problem? How did you get rid of the thrush? She recommended Gentian Violet (or however you spell it), so we’ll see if it helps.

[hellbennt]

christine (kevieb) should be posting here soon to help with the thrush!

as for reflux happening at the end of a feed: BULL.

my baby refluxed AT BIRTH with him winding up in the NICU and he didn’t have anything in him- maybe a DROP of colostrum but anyway he would

reflux anytime- his was due to an immature LES so acid would come on up any ‘ole time- nothing to do with his feeding…

also as far as reflux not showing up for a few weeks, etc, like lori says maybe it was there & you didn’t know what to call it, etc and also if it’s a protein related thing- intolerance/allergy then it can take time for the offending proteins to build up and then for the refluxing to start/get worse

[Anonymous]

don’t even bother with gentian violet—-it’s a pretty old fashioned way of trying to treat thrush—-not to mention it makes a horrible mess, and the stains do not come out.

we battled thrush for waaaay too long and then sylvia finally ended up with it in her esophagus. you and your son BOTH need to be treated at the same time and the best thing to use is diflucan because it works systemically. even if one of you didn’t have obvious thrush, you would still need to treat both of you at the same time if you are breastfeeding.

sylvia was having trouble desating at the hospital, they even briefly thought that they might have to life-flight her somewhere else. they told me her lungs were immature. (at full term???) she spent the first month of her life on oxygen. we later learned that reflux can cause a baby to desat. reflux can start right away in some babies. seems like there are a lot of old wives tales about reflux being circulated around by the doctors and other professional medical people!!!!

kevieb2008-08-23 20:09:19

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