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May 17, 2006 at 10:24 am #8209

Anonymous
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I feel like I am the worst mommy in the whole world. Tess is still struggling with her reflux. We have yet to find a medication/dose that truly relieves all of her discomfort. Part of that I know is my fault. I haven’t tried all of the options given to me. I was given a script for Prilosec 1.5 months ago but at the time the Zantac seemed to be working pretty well (and it’s easier to give) so we just stuck with it. Then it stopped working so we upped the dose. It seemed OK for a week or so and now she back to writhing around in her crib and crying. I should have just stuck with the PPI’s oh-so-long-ago when we were trying the Prevacid. It didn’t seem like it was working and the doc didn’t want to increase the dose so I bailed on it. I should have asked to try the Prilosec then. Or I should have been more forward about getting an increase in her dose. Or I should have gone for the endoscopy months ago when the GI offered it, even though he didn’t think it was needed. I just feel like I’ve let my little girl down SO much these past 3-4 months. Meanwhile I’m constantly yelling at my other DD because I’m always in a bad mood. She’s just being a typical 3-year-old. She can’t help it. Some days the only thing that makes me feel better is to know that she won’t remember much of this time when her mommy was a screaming b!tch all of the time. DH and I are always fighting over nothing because we are sleep deprived and stressed out. I feel like my marriage is heading downhill fast. When things are bad with Tess he gets mad at her – that’s his way of dealing – and then my mommy protection instinct kicks in and I get mad at him. I feel like I’m failing in everything.

May 17, 2006 at 10:37 am #8210

Anonymous
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Karen – first of all, <<<<<HUGS>>>>

You are not a terrible mommy. In fact, you are a GREAT mommy who is
worried about her daughter and wants to make her feel better.

I know you don’t want to hear it, but I really think you need to see
another doctor – a better GI specialist. We can all try to help you
find someone who will really work to help Tess – get her on the right
medication at the right dosage, do tests if needed, etc. She’s not
going to feel better at such a low dose of Prilosec without Zantac or
Pepcid until it kicks in and with her feeling so badly it’s hard for
you to take care of your other DD, your marriage and yourself.

I’d be more than happy to do some research and help you find a new
doctor – where do you live? How many days has Tess been on the Prilosec
now? Are you giving Mylanta in as well (spaced apart from the PPI)?

I hope Tess feels better soon and that things turn around for you.

May 17, 2006 at 11:53 am #8216

Anonymous
Inactive

Hi Karen,

We haven’t started the Prilosec yet. I got the script filled and after
our horrible night last night I was going to start today but DH is home
with her today while I have to take care of some stuff in the office so
we probably won’t start until tomorrow (DH isn’t good at this sort of
stuff). The script is for 5mg twice daily. Since she’s put on weight
since the script was given to us I’m going to call the GI and ask if I
should up the dose. I’m also going to ask about continuing with the
Zantac for a week or so while we wait to see what the Prilosec does. We do occasionally give her Mylanta and while it soothes her for a minute or so she usually just goes right back to crying afterwards.

I’m in West Chester, PA (about 35 miles outside of Philly). The two GI specialist I’ve seen are part of the Children’s Hospital of Philadelphia which is supposed to be top notch. If anyone has a recommendation for a specific doc I’d be interested. Thanks for the support.

Karen

May 17, 2006 at 2:05 pm #8221

Anonymous
Inactive

Karen,

I’m so sorry that Tess is still suffering, and you as her mommy are suffering right along with her. I’ve always said, and I’m sure you have, too, that I’d take double the pain, if my kids didn’t have to have any.

No, you are not a bad mommy. These doctors can’t seem to figure out how to treat our babies, so how are we supposed to figure it out? I second guess myself a lot about what I should or shouldn’t have done with Myles’ reflux. And talk about mommy guilt, when Ellie was a baby I didn’t even do any research at all and she suffered on Zantac which did nothing for her. I thought she was just a needy baby. I didn’t understand that reflux was that painful. My poor baby.

I had to forgive myself for not getting her better treatment then, because I didn’t know any better then. I was the best mommy I could be and I took the very best care of her that I possibly could, as I’m sure you are doing with Tess.

What we really need is better doctors who know what they are doing so we can be the mommy and they can be the doctor. I hope you can work with your doctor, or find another one to get Tess on a treatment plan that will work for her.

As for yelling at your three year old, I’ve been there, too. It is so very hard to take care of a baby with reflux. You just don’t have the time or patience for the older children. I yelled a lot too those first few months with Myles. And I felt a lot of guilt because my girls were pretty much on their own. I couldn’t do anything for them except the bare neccessities; dressing, meals, bathing, etc. It will get better as Tess gets older and her reflux improves and/or is better treated.

I’ve really had to work on the yelling thing because it became such a habit. When my oldest started yelling at her sister (she sounded just like me), I knew I had to do something. I’ve been trying a trick that seems to help…when I want to scream I whisper or speak very softly instead. It gets my girls attention better than yelling because they are so surprised by my soft voice that they want to listen to see what I have to say. I also try to imagine that I am in public or at work, and speak to my children as if everyone is watching. It really helps, though I do revert back to screaming like a lunatic from time to time, but practicing alternatives to yelling really does help and it becomes more habitual with time. And, they do forget. Liza and Ellie are just as happy and well adjusted as they were before Myles came along, They’ve learned that mommy has weaknesses that she needs to work on, just like they need to work on their behavior. My motto lately is “lets work on this together.” They are so patient and forgiving with their mommy! And they are eager to learn better ways to express themselves because they see mommy trying.

Getting a break once in a while helps, too. Are you able to get away ocassionally for a little while by yourself? Or, maybe spend some time with your oldest girl while daddy watches the baby?

I hope things turn around soon. Hang in there.

May 17, 2006 at 3:26 pm #8227

Anonymous
Inactive

Karen,

Please don’t be so hard on yourself. We are all stuggling through this mess together. You are not a bad mom. You are human and you are learning.

As for the yelling, I know where your husband is coming from because I’m the one in the family who does this. My husband is very patient and kind with Hailey even when he wants to blow inside, but when she pushes my buttons, I’m quick to blow. I don’t yell, but worse…many times I’ve told her that I hate her or have swore at her. So how’s that for a bad mommy (you should give yourself a break). Now when I’m going to lose it, I just keep my mouth shut and yell in my head (if that makes sense). I think that we all just have our breaking points- I used to think I was so reasonable and patient, but what I’ve learned is that I’m human and I can only take so much.

I too worry about my marriage. We have been struggling through this for a year, and I feel like I’ve lost myself in so many ways, and that I’ve lost the marriage that I used to have. These things can take their toll on a couple. My advice to you would be to try to spend a little time together doing couple things if you can- not talking about the kids, or the bills, or any other life problems. I keep suggesting this to my husband, but he always finds more important things to do. I worry that by the time we make time for each other, our relationship will be broken beyond repair. We’ve been together for 13 years and married for 5, but we’ve both changed so much through this, and not making time to talk has really strained things. Please don’t make the same mistakes I have.

I hope that Tess responds well to the prilosec. It will make a big difference for you when she does. It took the full two weeks for us to make a difference. It’s so hard to stick it out, but really worth it in the end. I wish you all the best and hope that this passes soon. Hang in there.

May 17, 2006 at 3:41 pm #8228

Anonymous
Inactive

Karen:

According to other users of this site, Dr. Joan DiPalma with
Jefferson/duPont Children’s Health Program is supposed to be great.
She’s in Philly and # is 215-503-2664. She also practices at Bryn Mawr.

I don’t know her personally but have seen her highly recommended by others here – might be worth a call?

Also – here is another link you might want to check out:
http://www.naspghan.org/aspModules/PublicLocateDoctor/ PublicLocateDoctorResults.asp?Criteria=State&Text=Pennsy lvania

Good luck.

May 17, 2006 at 5:44 pm #8239

Anonymous
Inactive

Karen, I did the same thing when we started the ppi’s. I thought it wasn’t working so i stopped it. My first gi doc, never told me about how it worked and dd suffered. I felt so bad! Hopefully you can get the prilosec started and use the zantac in between. Hopefully Marisa’s mommy’s doc can see you all soon if yours won’t listen. I had to go through 3 docs before I found one that would listen (thanks to a great mom on this site who went through this before!).

Everybody in the family suffers, it’s so sad. Just took my dd in for headaches today, turns out they think they are stress related. Boy do I feel like *&$#$ for providing such a stressfull environment.

I just want to tell you that things got much better when she finally got on the high dose of PPI. I can enjoy her more now. Hope that she gets some relief soon from the prilosec. Anyway you could play with the dose a little, go to marci-kids and see the reccommended dose for her age and weight? That’s what I had to do. Hang in there! Hugs to baby Tess!

May 17, 2006 at 7:05 pm #8241

hellbennt
Keymaster

it WILL get better! just keep telling yourself that!

you are not a terrible mommy-it’s just so hard to keep on top of everything!!

some things to keep in mind:

1) how you get the prilosec compounded. You might want to a) call around to find out which pharmacy orders flavorings from the company called FlavorX so they can order Caracream for you (then once this is established, you can get in touch w/ the Caracream folks so they can tell the pharmacist how EXACTLY to use it…b) you might want to find the link about how to tell the pharmacist how exactly to compound it for you…just SMILE and tell them to HUMOUR YOU and to please make it in a particular way

2) you might want to FAX your doctor so as not to have a phone conversation…First you THANK the doctor & You can STATE THE FACTS and then simply request/’tell’ (as opposed to asking “is this ok?”) what it is that you want then another gush of THANKS…this goes for dosing and for giving the zantac at the same time (2hrs apart or more) too. Honestly, I don’t know if you want to even ask/tell this, but hey, I’m no doctor! I just know that our ped GI said it was ok to do…

3) once you get how/when to administer the drugs, you can make a little instruction poster/list/whatever for dh…I think it’s important that he knows how to do some of this, too, so all of the pressure isn’t on you…sorry for unsolicited advice also- this way you can leave tess with him and take your 3yr old to the park for an hour or something…

May 19, 2006 at 9:49 am #8334

Anonymous
Inactive

Thank you all so much for your support. It means a lot to me. I’m feeling a bit better now. Sometimes I feel like I’m on a horrible rollercoaster ride – some days are good, some days are terrible, and you never know what’s coming next. It’s very comforting to know that I’m not the only one who has yelled at their family when stressed out or has felt like they made bad decisions regarding their child’s treatement.

Tess is taking the Prilosec now. I decided on my own to continue with the Zantac for awhile then we’ll slowly wean her off. Our pharmacy does use the FlavorX brand flavoring so if this ends up working I’ll investigate the Caracream.

Laura – I should have been more clear. My DH knows how to give Tess her medicine. He’s just not good at taking the inititive to start a new routine. Once I establish it he can follow it just fine.

Thanks so much, everyone. I really hope the Prilosec does the trick. I’m going to keep Dr. DiPalma’s number handy in case I feel like things don’t improve enough. Bryn Mawr is only 20 miles down the road for me.

Karen

June 7, 2006 at 6:00 pm #9304

Anonymous
Inactive

I can not believe how much you sound like me. I dought myself all the time. I could have caught my second sons reflux even sooner, but I doughted myself. Well, I was in denial too. My first son went through it and I didn’t want it to be true. I too yell at my older child and my husband. I feel horrible about it, but I have to try to remeber that feeling guilty only makes things worse. Of course, I’m speaking to myself here too.

I hope all works out for you. If you ever need to vent please feel free to e-mail me! I was a horrible mother to my first son and I am trying not to do that again, but I do understand and I don’t think you are a horrible mom. I found myself starting to shake my first son. That’s bad. I won’t even mention all the other stuff. I was horrible. I do now understand how shaken baby can happen.

I hope I have helped.

Shelby
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