Chances are excellent that I will lose my mind

[Rachels]

We took Abigail to the ped today to try to figure out what's causing her horrifying nightwaking (painful cries ALL night long-- waking 20-30 times, no kidding). He thinks it's her reflux, of all things. I thought babies were supposed to outgrow that! But it does make sense. She is fine all day, then when she lies down, everything falls apart. She chokes and sputters and thrashes and clearly hurts. I don't know what makes reflux get better and then come back, but that seems to be what has happened here.

But here's the thing: I'm tired. Not just a little tired. So tired I can't believe I can stay conscious one more minute, except that I have to. I really, truly don't know how I'm going to bear it. They prescribed Prilosec, which we gave her, and now all evening she's been acting like her tummy hurts. She is obviously exhausted but can't fall asleep. I'm grabbing a few mental health moments here while DH tries to soothe her. She acts like it hurts to nurse, and she's flopping all over the place, and nothing is helping at all. I'm even having a spiritual crisis in the face of all this.

Good thoughts, please. We're supposed to give the Prilosec a week, and it's hard to imagine how we're going to survive that long.

-Rachel
Mom to Abigail Rose
5/18/02

[todzwife]

(((HUGS))) You poor thing! My friend's son had reflux too and said it was a nightmare. I can only imagine. I have absolutely no advice, but we will be praying that the meds help FAST! Good luck!

[JMarie]

Rachel, you are one of the strongest moms I know, and I truly believe you will get through this. I know it doesn't seem like it now, but you're never given more than you can handle. I hope that the Prilosec works and that you all are able to get some rest - at LEAST eight hours worth in one stretch. Please keep us posted on Abigail's progress. Hugs all around...

Jennifer
Mom to Aidan Christopher 01/28/03

[NancyJ]

I'm so sorry to hear what you're going through, my good thoughts will be with you. Did the ped say anything about having Abigail sleep somewhat upright? DS has reflux and is currently on Zantac, and I know a couple of the suggestions are that you invert the bed to 45 degrees (put a couple of books under it) so that the baby's head and chest are elevated compared to their feet, or have the baby sleep in his/her car seat so that they are somewhat upright, or in the swing. The point is that gravity will help keep the food and acids down in the stomach. I'm sure you've done the research, but these are just some of the things I've read. In the meantime, I hope things get better for both you and Abigail quickly!

Nancy
Mom to Braeden 6.5.03

[egoldber]

Poor Abby! And poor Rachel! Yikes!

A baby in my playgroup wasn't even diagnosed with reflux until she was 17 months! Her mother just finally could NOT bear the nightwaking anymore and DEMANDED that her ped do tests, and that was when the reflux was discovered!

In addition to the Prilosec, are they giving her anything like Reglan too? And if the Prilosec doesn't help, ask for something else. Not all acid reducers/blockers work for all people!

Good luck!

[peanut4us]

Gah! I'm so sorry that is coming back! How terrible for you. Is there any chance your DH could take a vacation day or two and let you sleep? I know there is a breaking point for everyone, and even though it will short change your DH on some real vacation... it just might make everyone more sane and happy in the end.

Our DD finally got off of the awful Zantac and is on Prevacid (which is hard to find in liquid and very expensive). it tastes so much better and the dose isn't so sensitive to weight change like the zantac. But I am looking forward to the day that she doesn't have to take anything.

The Prilosec might take a few days to get to a good dosage in her little body... that's what happened on both the medicines DD has been on. So you might not see a significant improvement for a few more days.

I thought at the latest children grew out of it between 6 and 12 months old. Did your ped have any ideas as to why it was coming back? Do you need to eliminate certain things from her diet or the time of her last meal?

Also, I don't know if it would make a difference... but now that she's over a year old, have you stopped nursing and put her on regular milk? Could it be that she is sensitive to that or has a milk allergy?

Gosh, Rachel, I don't know what else to say, but your in my thoughts and all my extra good ones are going your way.

[Rachels]

Thanks, everyone. Unfortunately, vacation days are out for the moment, because we just got back from one. I'm trying to sleep as much this weekend as possible. I am still nursing (thank heavens) and not giving her cow's milk, but it's certainly possible that there are other food sensitivities that have cropped up. With her last bout of truly horrible reflux, it made a difference to cut out a zillion foods. We have a follow-up appointment with her ND in two weeks and will check food allergies again in case she has developed something new. I may see if I can move that appointment sooner.

The other thing I've learned is that some people just have reflux, end of story. Most babies outgrow it, but not all. A doctor friend said yesterday that his 7 year old neice has it. My dad and my uncle both have it, so it's in her genes. I just feel terrible for her, though. And for me, frankly, because it's SO hard to never, ever complete a sleep cycle. I feel very much the way I've felt coming out of anesthesia-- awake, but not quite able to feel my arms.

Sigh. Keep those good thoughts coming. No kidding, we need every single one.

-Rachel
Mom to Abigail Rose
5/18/02

[ismommy]

Rachel,

Isabella wasn't diagnosed with reflux until 15 months. She had no symptoms until that point but then started screaming and writhing in pain for hours. It was horrible and I hope that Abigail's clears up soon. What we were told was that children do not outgrow it and it can come back when they have colds, ear infections, teething. Isabella has been on prevacid since February and we are going to start weaning her from it but were told that there might be times later that we will need to put her back on it.

We were going to wean her in June when we came back from Cape Cod after 10 weeks but she started having attacks again. I think it was readjusting was hard so I know you have been traveling and maybe Abigail just needs time to raedjust. They also had her on antibiotics for a couple fo weeks due to the reflux.

I know how hard this is and I hope that Abigail feels better soon.

Helene

[memedee]

My daughter in law has it.She has to avoid all dairy products and she can not eat late at night as she is unable to lie down because the heartburn is so bad.
She is due in September and she has been plagued with the reflux/heartburn throughout.She tries to control it with diet but nothing works as well as drugs at least for her and she will not take them while she is pregnant.
Maybe not feeding her before she goes to bed might help.
Get someone to help you so you can get some sleep.I think that is important.

[Marisa6826]

Oh Rachel :(

I'm so sorry that you and Abigail are having such a tough time. Sophie's been on Zantac for months and I've noticed that it's time for an increase in dosage. I, too, thought that she would have grown out of it by now.

I was on Prilosec when it first came out on the market years ago and it does work wonders.

My best wishes for some calm in your house. I would seriously consider raising the end of her crib (unless Abigail is like Sophie and is never in the same spot for more then an half hour! :) ).

Please keep us posted!

BIIIIG hugs!

-m

[Karenn]

Nothing to add. I just wanted to say I'm thinking of the two of you and wishing you much sleep.

[houseof3boys]

Rachel I hope you were able to get some sleep this weekend and clear your mind from all of the stress you are feeling!!!

[KathyO]

Oh, dear. Very best wishes on the Prilosec - and on some species of sleep for you. I saw some Tofutti Cuties in the freezer case the other day and thought of you... are you still on those? Talk about insult added to injury...

A spiritual crisis in the middle of all this? Heck, I know I was ready to sell my soul to the devil for just a few hours of uninterrupted sleep, early in the game! It's just so unfair that you have to revisit that state again, and again, and again!

Hang in there, hon,

Best,

KathyO

[nofeea]

I'm not sure if it's different for babies but there is a whole list of dos and don'ts for adults with reflux. I have a feeling you've probably researched this already but just in case you haven't...

-never lie flat- (raise upper body- bed blocks, etc. They also have those wedges that you can put under a crib mattress- I've seen them in BRU)
-diet changes (I know you've researched that!)
-no food before bedtime
-no tight clothing at waist (for adults this means belts, etc.-but for babies maybe even elastic pajama pants or a tight diaper might be a problem)

Could you at least put her in a semi upright swing for a nap and grab a nap yourself?

OOooh we all feel your pain!! Good luck!

[lukkykatt]

Rachel, I have no experience with reflux, except DH's, which was triggered by black coffee. Since I doubt that is Abigail's problem, I just wanted to let you know that I have been thinking of you two, and hoping that the Prilosec kicks in long before the week is over.

If I lived closer, I would come over and let you sleep! Poor you, and poor Abigail. I hope things get better soon!

[nigele]

Oh, poor little Abby! I wish I could help out - I'm up half the night here with my little monkey. Tom is still refluxing and we just got Prevacid in a powder form (hurray).

I hope the Prilosec works soon and you both can get some sleep. Big hugs for both of you!!

[Rachels]

No prilosec ever, ever again!!!! Fix one problem, create another. She appears to be really sensitive to Prilosec. Damn. Tonight, as last night, she has been crying for nearly three hours. I hoped last night was a fluke, but it was definitely not, and now I'm feeling like I poisoned her. She is just miserable. Clay is driving her around, hoping she'll fall asleep in her carseat (she keeps shouting, "Night night night night!" but can't fall asleep, can't nurse, cries). I am almost too tired to cry. (Almost.) Today I fell asleep while watching her -- only for a second, but it scared the bejeezus out of me. I feel so desperate. Zantac doesn't seem to do it. Prilosec is out of the question. It takes eons to get a GI appointment. What are we going to do now? I definitely get how people can get suicidal over stuff like this. I'm not, but I don't see how we're going to live through it, either.

-Rachel
Mom to Abigail Rose
5/18/02

[mharling]

Nothing to say that hasn't already been said, but I wanted you to know that I'm thinking about you. I can sense how rough this is on all of you and wanted to send my thoughts your way.

Mary & Lane 4/6/03
http://www.shutterfly.com/osi.jsp?i=67b0de21b3237413c427 - New 6/18

[egoldber]

Oh Rachel! My heart just breaks for you and Abby! Is there ANYONE, a neighbor, a friend who can come over and watch Abby for just a couple hours so you can nap?

And hopefully you can call the ped's office tomorrow and they can try a different med for her that will hopefully bring her some relief!!

Yikes!!!

[NancyJ]

Geez...sorry to hear that it's gotten worse. DS is only two and half months old, but we've had many, many days and nights of crying and I too can understand how people get suicidal, although thankfully it hasn't gotten that bad for me. I have no idea where you live, but do you have a friend close by that can watch Abigail for an hour or two and let you get some rest? If I lived anywhere near you, which I don't think I do (you're probably thinking about now 'who is this person...thank god I don't live close to you') I would absolutely watch her so you can have some downtime. I've had some really really rough days myself with the reflux and crying and I know how much of a difference a couple of hours could make for me. In fact, over the last week or so I've questioned why none of my friends or family have offered to help, even my closest friends. Granted, most of them don't have kids, but still I specifically say to them "this has been one of the hardest times in my life, I can't believe how hard some days get" and yet they still don't offer. It's actually been pretty disappointing and makes me question some of my friendships. Anyway, I digress...I just wanted to really encourage you to ask a friend or family member (even though I haven't outright asked my friends) to give you a break for even an hour or two. It would make a world of difference, and would be beneficial for both you and Abigail.

Again, I hope things get better really soon. I can absolutely sense your frustration and feel for you having had many similar days myself.

Hang in there.


Nancy
Mom to Braeden 6.5.03

[Annette_C]

Rachel,
I'm so sorry for you and Abby! I feel for you both and I wish there was something I could do to help.
I'll ask Bridget tomorrow if she's aware of any other reflux meds for toddlers meanwhile, hang in there (I know...easier said than done!) and try to get some help. Abby needs you healthy not run down! If you won't do it for yourself, do it for her.
I'll pray tonight that you and Abby get some relief.
Annette
SAHM to Sabrina 6/24/02

[liya]

Im so sorry Rachel and poor Abigail....I know how hard it is to deal with reflux and like you i was shocked when the doctor told us that reflux was something that might continue....I hope the new med will do some good and aliviate her pain....I completely feel for you and Abigail at this moment and know first hand how exausted you must be....

Im crossing my fingers and praying for you guys....I hope you get some rest this week with the meds...

[mama2be]

Oh Rachel the thought of her going "night night night..." breaks my heart...she obviously wants to sleep too...

I am not certain you need another GI consult to try soemthing new as far as meds go...or as far as anything goes (a phone call intot he DR should get some quality ear time with him/her since you've already had an appt.I would either ask the DR for several 'samples" of meds...or ask them to call soemthing else in for her. It sounds like you just need to try a new medicine but a new appt should not be needed for switching...

I agree with the others...is sounds like you need Operation Girlfriends to kick in...would any of them come over and give you a hand. Could Mosey come up for a little while???

Please tell Mosey I am now scouting yarn for my mom to make me a scarf like the beautfiul ones she is making :)...

Anyway I have no good advice except to to try to convince you that you don't hepofully have to wait for an appt with the doc to get them to try soemthing else...

We're thinking about you gals...

[newbelly2002]

Adding my well wishes for you and Abby to the crowd. I'm so sorry for all this. I had really hoped (as I'm sure you had too!) that the Prilosec would work.

If you call the GI and explain the situation, can't they get you in earlier with a cancellation or something like that? I so wish I was there to help you and Abby out.

Thinking of you both...

Paula, Mama to Dante
http://www.shutterfly.com/osi.jsp?i=67b0de21b32384e84594 -6/25 update

[AngelaS]

My friend had the same problem with her 2yo. He's now on Prilosec and they had to give a good (oh you're going to hate me for this....) 5 weeks before it started to work well. Your baby is younger tho, so maybe her's will kick in and work sooner! I hope so!!!

((((HUGS))))

[cinrein]

Rachel,
I have no additional advice for you, but just wanted to let you know I'm thinking of you and Abigail. If by chance you live in the DC metro area I would be happy to help you out. We're going through teething here and as bad as that is, I know your situation is much much worse. I know the 2 things you want most right now is for Abby to feel better and sleep for yourself, but if there is anything else we can do please ask! Sending good thoughts to you....

Cindy
Mama to Anna 2/11/03

[nitaghei]

Rachel,

I'm so sorry for poor Abigail and you!! I really, really hope that someone figures out what's making her so miserable SOON - so that both of you can get some sleep.

Nita

[amp]

Rachel,

I'm sorry I don't have anything valuable to add, but I just wanted to say that I am so sorry Abigail and your family are going through this. It sounds like you all are having such a rough time and my fingers are crossed that you get some relief soon. We'll be sending good thoughts and vibes your way.

[Rachels]

Thanks, everyone. Your good wishes and offers to help are overwhelming. (I'm in the Boston area-- but thanks!) It really helps to have some psychic backup, anyway.

I talked to her ped this morning, and there are a few developments. One thing is that we're taking her off Prilosec since she reacted so badly. We're putting her back on Zantac, which probably won't take care of it, but at least it's something. I can also give her a good bit more Maalox than I had tried, and that might coat her esophogus enough to soothe her discomfort a little. The ped is also going to try to fast-track us back to the GI specialists at Children's Hospital. They're probably going to want to do a pH probe, which involves leaving a tube down her throat for 24 hours. This scares the daylights out of me. If anyone has done it, please, please tell me everything. Also, I talked to the ped about the fact that the craniosacral therapist I took Abby to in Charlotte found what she thought was a hiatal hernia-- a bulge in her belly right under her ribcage. I felt it, too. The therapist reduced it by stroking toward the opposite hip, and I've done that one other time when it has popped back up. The ped thinks it's probably not a hiatal hernia, saying that those usually are located under the sternum, so you can't feel them. But she was pretty concerned about what it might be. It could be as harmless as a muscular thing or a much bigger deal, like some kind of structural problem with her stomach or intestine. So they're probably also going to want to repeat her upper GI (which was no fun at all the first time) to get a look at what's going on now. Truthfully, I'm less scared of the upper GI than I was the first time, because it's less of a big deal to get her to go a few hours without eating. But it still just sucks. I'm so heartbroken that there's something hurting her, and so panicked at the thought that there's nothing to do quickly to help her feel better, and to help us both get some sleep.

Not much else to say at the moment-- just kind of numb with worry and fatigue. :(

-Rachel
Mom to Abigail Rose
5/18/02

[daisymommy]

Rachel,
I just wanted to add to the positive thoughts and well wishes here. We are a praying family, and will begin lifting you and Abby up, asking for healing, rest, peace, answers from doctors, and SLEEP! I wish we could be closer to give you a much needed break. Please ask for help from someone you trust. It is humanly impossible to go on to long like this, and expect that you can be SuperMommy (any more than you already have been).

A few thoughts that may help:
Definetly up the dosage of Maaloxx if possible. That's the only thing that soothed Joshua until the Zantac kicked in.
Have you elevated her sleeping area as suggested? Try to get Abby to sleep on her tummy if possible. This shuts of the sphincter valve and cuts down on the reflux. I have a Tucker Sling you can use if you would like. It is a sling that you sit the baby in, and it attaches to your crib. When you elevate the crib mattress drastically (for times like this), it keeps baby from sliding down to the bottom of the crib. I know you still cosleep, but do you have a crib you could use if you slept next to her just until things improved a little? I'll attach a picture of the Tucker Sling in use so you can see what I mean. It shows a very little baby, but it can be adjusted for larger babies with the Velcro sides.

Take Care of you,
Blessings,
http://www.tuckersling.com/tucker_sling.htm

[Rachels]

Thanks, Amy, that's really generous. I had seen pictures of the Tucker Sling and wish I'd found it when she was much littler! I think we're okay at the moment, though. I've got her crib mattress on the floor next to our bed, wedged in between the bed and the wall, and I've got the head really elevated. I can lie down there with her if need be to soothe her back down, and I've got pillows and stuff rigged up so she doesn't slide off the end. Fortunately, stomach sleeping is her preferred position, so that's how she is sleeping most of the night. I gave her a hit of Maalox a while ago, and she's taking a pretty decent nap.

I appreciate the prayers, too. Thank you.

-Rachel
Mom to Abigail Rose
5/18/02

[daisymommy]

Sure, no problem :) Sounds like a good sleeping set up, and it's great that she likes tummy sleeping. Our GI specialist said for bad cases of reflux, it really helps (too bad it doesn't eliminate it.) Lying on their back opens up the sphincter valve, causing reflux.
It can only get better...:)

[nigele]

R -

Tom had a PH Probe - give me a call & I'll tell you about it (can't write while chasing him around!)

[C99]

I'm so sorry, Rachel. I cannot imagine what you and Abby and Clay are going through right now, but I wanted to add that I've been thinking good thoughts for you all in Boston.

[nohomama]

I'm thinking about ya Sister and I hope things get better for you, Abby, and Clay SOON. After tomorrow I'll be home and only a phone call away. I'm more than happy to lend you an ear if you need one.


Many, many hugs and kisses,

[sntm]

Rachel,

I feel just terrible for you and Abigail. I hate the idea of her hurting and you must be suffering not being able to help.

I'm here for you whenever, just like you were here for me with the breastfeeding problems (you may not even know how much that meant to me talking with you!). One thing to consider if the medication is not working would be surgery -- they could correct a hiatal hernia if she has one and do a wrap which would stop the reflux. Surgery is never a fun option but might be looking like a nice alternative at this point.

We'll pray for all of you. Hang in there.

shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[Rachels]

Thanks, Shannon. I would really like to talk to you. I'm so anxious about what tests are on the horizon for us. Fortunately, everyone is taking it very seriously. Our ped (whom we love) talked to Children's Hospital yesterday, and they're supposed to call me today to get us in ASAP. Then they'll schedule the pH probe and upper GI and who knows what else. Meanwhile, she did slightly better last night on Zantac and Maalox-- slept about two hours or so at a stretch, which is more survivable than fifteen minutes at a stretch. But she's still clearly uncomfortable, sticking her fingers in the back of her throat until she gags, not eating much, etc. I'm tired and worried and having trouble thinking through it all very clearly.

-Rachel
Mom to Abigail Rose
5/18/02

[spu]

Oh Rachel, I'm so sorry to hear this. I don't have any advice, but I just wanted to say that I'm thinking of you and Abigail and hope that everything settles soon. Please keep your spirits up too. I know it's hard. That's where you can draw all your strength from.

If you want to get together for coffee (or decaf!) sometime soon, just let me know and I'll meet you wherever you are.

susan

twin girls 7.20.02
charlotte & else

[vluckey]

I'm so sorry to hear about this. I, being a brand new mom of an 11 week old can't offer much advice on the baby end, however, I can tell you what I would do if I were in this situation. I would find a very repudutable homeopathic physician to help you figure out what is causing her to have this problem. Many times, traditional doctors focus too much on releaving the symptoms rather than what is causing the problem. There is a cause. There are many many many homeopathic remedies you can offer, such as ginger (like in natural ginger ale) or papaya, which is very well known in other countries for helping with upset stomach. Those particular remedies helped me very much with nausea when I was pregnant. And they are obviously side effect free as they are food, unlike many prescriptions. And you can add that to the medicines she is on without worry.

It is certainly worth consulting with someone. Perhaps a little internet research or checking a reference book called "The Guide to Nutritional Healing" at the library.

I hope this helps to give you some hope.

[josephsmom]

Rachel, I'm sorry you're having such a terrible time. It sounds like you are doing everything possible for Abigail, and you've got to take care of yourself. You have got to get some sleep. If you can't get a friend or relative to visit, there might be another option. Once a friend of mine was too sick to take care of her baby, and her husband was away on military orders, and she got a visiting nurse for a couple of nights. It absolutely did wonders for her, and I think her insurance may have even covered a portion of the cost. If you're involved with LLL, MOMS club, or anything like that, maybe you could get some help from one of the moms in your group. Please find a way to get some sleep. We're all very concerned about you.

Helene
mommy to Joseph 12/29/01

[jbeamer]

I am so sorry! when Madison was first born she struggled with colic. I rubbed an herb called A.G.-W (Anti-gas) on her stomach three times a day. Within one week it was gone. I continued for about two months slowly weaning her from it. The herb has a mixture of herbs in it like chamomile, peppermint and ginger (all of these are stomach soothers) I am not sure if reflux is similar to colic, but I know this helped Madison's digetstive system relax and process her foods. I got the herb from a company called Pureherbs.com, maybe check them out and see if they have any suggestions.

I'll be praying for you, hope your little one feels better soon!

Jen
mommy to Madison 3/28/03