Still suffering or just crabby?

[Anonymous]

I need input please!

How do you know when the
medication is right? Do all of your baby’s symptoms go away? Tess seems good
in that she doesn’t have that congestion anymore, she sleeps OK at
night, she doesn’t have to be held 24/7, etc. However, there are little
things that are going on that are nagging at me. DH thinks I’m being
silly but I just get this feeling that she’s not completely pain-free.
It’s definitely better than it was but I worry that we could be doing
more, KWIM? But how do you tell subtle reflux reactions apart from just
generally crabby baby stuff?

For instance, Tess often wakes up from her naps crying. Her
naps are typically only 30 minutes or so long so I know that she’s
probably still tired but is having trouble transitioning to the next
sleep cycle (we just recently got her napping in the crib instead of the wrap). So maybe she’s just crying because she’s tired. But most
of the time when this happens she’s also squirming around like crazy.
Now, we have her swaddled up so maybe she’s just protesting against the
swaddle but maybe she’s in pain? I just don’t know how to tell.
There are times when she’s sleeping that she literally shrieks
(completely quiet and then WAH!) and I would think that is in response
to pain but what do I know? Maybe she had a bad dream or something.
Lately she’s doing this twisting thing. When she’s upright (while
you’re holding her, in the exersaucer, etc) she’ll turn to the side and
sort of throw her head back. Seems to me like she’s arching but DH says “She just wants to see what’s behind her”. Problem with that idea
is that she’ll do this even if you turn her around the other way. She’s still fussy a lot of the time but then so was my first DD and she didn’t have reflux. Maybe I just have fussy babies?

Sigh. I’m starting to think we should just do the endoscopy. I
didn’t want to do it before because it seemed so drastic and I was
convinced that her reflux wasn’t “that bad”. But now I think if we did
it we’d know for sure if her medication was working. I mean, if it’s
working her esophagus should look fine and if it’s not then her
esophagus will be irritated, right? I also still have the script for
Prilosec that the last GI specialist gave us. I didn’t bother with it
then because a) she was doing good on the Zantac at that time and b) I
figured if the Prevacid didn’t help the Prilosec was a long shot. The
problem is, if we do the Prilosec we have to take her off the Zantac
(doctor’s orders) and it may be weeks before the Prilosec starts
working. Two weeks with an unmedicated reflux baby doesn’t appeal to
me.

Please don’t suggest a new doc. We’ve been through two regular pediatricians and two pediatric GI specialists. Other than the first, useless, pediatrician they have all agreed on her medications and dosages. I like our current pediatrician – he’s been very willing to let us try things – so I’d like to stick with him. The last GI was OK, too, but freaked out when I told him we were using the Prevacid and Zantac together because “that’s too much acid-blocking medicine for anyone”. Sigh.

Am I over-analyzing Tess’ every movement? You would think that I’m a first-time mom but I do have an older DD. I just never studied her reactions/movements/sounds so intently as I do Tess so I don’t remember what she was like at this age. Should I call up the GI doc and ask for an endoscopy? Should I just try the Prilosec (we still have the script) and see how it goes? WWYD? TIA!

Karen

momtotess2006-5-14 14:32:15

[hellbennt]

karen,

you asked, so I’ll tell you what i’d do:

I’d get that baby on a PPI and I’d use mylanta cherry supreme until it kicked it & then once I realized that mylanta cherry supreme wasn’t helping enough & it was like my baby was totally unmedicated, then I’d just throw caution to the wind & give the zantac, against what the doctor said- I speak from my own EXPERIENCE & when jonah was ‘waiting’ for the PPI to kick in & he didnt have zantac, he shrieked/howled so much he went HOARSE, it was truly pathetic

I woudn’t go for an endoscopy until after my baby was on a GOOD dose of a PPI for a good 3 or 4 wks. that seems like the next course of action.

I for one, do not think you are overanalyzing AT ALL and it sounds to me like your baby is in pain- jonah had all the symptoms you describe- you ask how do you know youre baby is in pain but I think you know- it is not normal to be disrupted frpm sleep by crying out…he also wouldn’t sleep for more than 30 minutes & he also turned his head- I’m sorry but so much of what you wrote reminds me of pain…

i sound harsh and I appologize…

[Anonymous]

I definitely agree with Laura. My middle child had silent reflux and I too did not understand how bad it was. She slept miserably and was generally miserable all the time. Though some of that was her anxious personality, much of it was her pain. When she outgrew her reflux her disposition improved dramatically in the following two months.

Ellie was on Zantac and I didn’t know anything about PPI’s so I just assumed that’s all there was for babies with reflux. How sorry I am now that I didn’t do some research back then and get her some help. Thank God I found this site and got Myles the help he needed.

If Prevacid did not help Tess, maybe Zegerid would be better. If she was on the solutabs it may have been the added ingredients that were bothering her. Prevacid is tricky to use because of it having to given on an empty stomach and followed up 30 minutes later with a full meal. If it’s not done perfectly you won’t get the full effect. With Zegerid you don’t have to do worry about that.

I’d skip the endoscopy, too. At least until she is on a good PPI for a while and you’ve given it a chance to work. It’s not surprising at all to me that Zantac isn’t working. I read that here all the time, and it certainly didn’t work for my little girl.

If you like this pediatrician maybe you’d feel comfortable printing out the marci-kids information on PPI dosing and taking it or faxing it to him. That’s the only way I convinced Myles’ doctor to put him on the correct dose and it really made a big difference for him. Here’s the link

http://www.marci-kids.com/

I’m sorry Tess is struggling. It’s so sad, and I sure know what it’s like. I hope things get better soon.

Oh, BTW…my dh is the same way. He thinks I’m imagining everything that I suspect might be wrong with Myles (or the other two). After six yrs of marriage and three kids, I’ve finally figured out that it’s really his way of avoiding his own stress and fear: let’s call it DENIAL. Mommies can’t operate that way….we have to trust our gut, take charge, and get things when our children need us.

Good luck and please keep us posted.

ndrose2006-5-14 16:24:45

[Anonymous]

I also agree. My son was not helped at all by Zantac. At 3 or 4 weeks old I swtiched to Prevacid. That also did not work – until I upped the dose on my own without doctors orders….Then my baby was immediately better!! (no 2 week wait). Only later did I hear about the marci-kids website with the dosing info and whadayaknow?, I was giving the right dose after all! (not over-medicating). The doctor was just very cautious and had prescibed a very very low dose of PPI that was not effective.

Also, I had figured out on my own about splitting the dose into two times a day because Logan was so irratable in the afternoon(so I suggested it to the dr and she said – go ahead an try it) – later I also found out from the marci-kids website that it’s necessary to give more than once a day. Now my son is on both kinds of meds, because he was waking several times during the night. Once I gave him the Pepcid (similar to Zantac) he slept MUCH better at night.

[Anonymous]

Laura – You don’t sound harsh at all. I appreciate your input. Especially since you went through very similar stuff with Jonah. Thanks!

Christine – I know the Marci site well. I actually printed the info out for my visit with the last GI specialist but I chickened out. Things were already a bit tense since they were very upset about me giving both Prevacid and Zantac, against my pediatrician’s advice, so I caved. I’m not good with confrontation. I did manage to convince my DH that maybe things aren’t quite right but now I have to convince him to give up the Zantac, which is actually helping quite a bit, in order to try an unknown.

Marsha – The Zantac actually does help Tess quite a bit. I’d say she’s at the 70% level. It’s just that last 30% or so that I feel we’re missing and I think that’s what’s keeping her from sleeping better and being a really happy baby. If the Zantac weren’t working at all then I’d have an easier time just dropping it and trying the PPI. So did your doc agree to the increased dose once you told her what you discovered? Did you just say “This wasn’t working so I decided to try more”? The docs freaked out on my so bad just for using both Prevacid and Zantac… I can’t imagine what they would do if I confessed to increasing her dose on my own.

Thank you all for your input. My DH is picking up the Prilosec from the pharmacy tonight. I think I may talk to my pediatrician and let him know what’s going on. I feel bad for going against his advice before and I don’t want him to think I’m untrustworthy. Of course, the dose of the Prilosec is far below what is listed on the MARCI website but I guess we’ll try what they prescribed first.

Karen

[Anonymous]

Karen,

I’m sorry if I was too pushy about telling you what I though you should do. I’m fortunate that I have a terrfic doctor who, even if she disagrees, is a great listener and I feel comfortable talking to her about anything. So, even though it took me weeks to convince her to up Myles dose to marci-kids standards, it was never confrontational. If I’d had an experience like you with the Ped GI “freaking out” over something I was doing with my son’s meds, I don’t what I would have done.

I really feel for you. To give up Zantac which is helping at least partially, to try something else is really scary. I hope it helps if that’s what you and dh decide to do. Maybe some Mylanta Cherry Supreme in between doses would help. (I don’t think your docs would complain about that). I wish there was more advice I could give you. Good luck and I hope Tess gets better soon.

[hellbennt]

EDITED TO SAY: PLEASE READ LAUREN’S ADVICE BELOW!!!! SHE MAKES A VALID POINT

hellbennt2006-5-17 23:0:18

[Anonymous]

I would go to the Pediatrician’s and/or GI’s office with print-outs of articles from the internet. Instead of going in with an “I know more than you” attitude. I also try to play dumb and say “Look at the interesting article I found, and here’s another saying the same thing – maybe we could try this?” Most of the time the docs were eager to learn the “latest” treatments and encouraged me to let them know if I found out anything else.

When I first started upping the dose I asked his pediatrician if she thought that it was possible to O.D. on Prevacid and she didn’t think so, she was very flexible with my suggestions. Logan’s reflux was so bad at first he could barely breath after feedings because the formula would constantly be “bouncing” up all the way to his mouth. So desperate times call for drastic measures, I just followed my gut, but did keep my son’s pediatrician in the loop.

lansima2006-5-18 13:49:47

[Anonymous]

I have to chime in here….especially for the sake of newbies & their kiddos…

Please DO NOT change your child’s dosage of any medicine, based on a website or any other information, UNTIL you have spoken with your doctor.

Yes, for some it may have been fine & the child was improved. BUT, for some children, especially those who may be on other medications, every dose or medicine change MUST be followed by a doctor. Yes, meds like Prevacid probably won’t have a negative effect (although, IF your child DID have an adverse reaction, how would you live with yourself???), BUT many other meds out there like Reglan, etc. WILL & DO. I do not want anyone coming to this site or any other one, gaining confidence & thinking they can alter ANY dosing of their medicine.

Print out the material & ask your doctor. If after that, they will not change the dose, document your child’s symptoms (say, reflux gets worse in afternoon, etc.) & push again for increased dose. Ask if your child’s recent weight gain changes things, or if it’s possible your child metabolizes the medicine quicker, etc. Sometimes it takes presenting something in different ways.

THANK YOU!!

[Anonymous]

Tess’s mom,

Tess sounds like my GS Elijah with the arching of the back ( my DIL and
son also thought he was trying to look and see what was behind him but
he also had other signs of Sandifers Syndrome which is the bodies
reaction to pain.

Do a search on here or on the MARCI site to see if other symptoms are from Sandifers.

Elijah’s Sandifer symptoms went away when his acid reflux got under control.

Elijah’s mom often increased his dose of zantac or pepcid. She would
tell the Dr and I wondered if the Dr thought that I told her to
increase it (I didn’t) But Zantac is very weight specific, so we had to
bring him to the pedi to be weighed weekly and the Dr would up his
dose. He then was put on Pepcid. The pedi never said anything abut mom
increasing the dose. But then again, the pedi doesn’t say much anyway.
I would sometimes bring things up that I thought she should be telling
mom so that mom could hear it from the Dr, not me. I’m
trying to walk the line here and not takeover..suggest things…share
articles.

The pedi would NOT prescribe PPI’s (like Priolosec, Zenigred,
Prevacid)for babies under 6 months and when he turned 6 months she sent
us to a pedi GI. (I can’t believe I did not advocate for that earlier.)

The Pedi GI put him on Prilosec but said not to give the pepcid. He was
miserable and after asking the pharmacist if the Prilosec and pepcid
could be given together he said as long as they are spaced apart. Some
say 2 hours some say 5 hours so that the PPI has

So Elijah got the Pepcid and at night, 4 hours or more after his last
dose of Prilosec that did help a little. We also used a lot of mylanta
and tylenol cause he was also teething!

I spent hours researching, writing and faxing an intelligent
letter to the GI Dr with the MARCI info and some peer reviewed studies.
(peer reviewed means the peers of the Dr, lets say GI Drs, review their
articles and studies and agree or disagree on whether the article or
study should be posted. So a GI dr’s article/study would be reviewed by
other GI Drs.

I only mention this because Dr’s usually want this type of research in order to believe it.

One more thing, I do not advise giving meds to babies without a Dr’s
consent. I suggest things to my DIL and then we discuss them with the
pedi.

I did however, after much research and talking to a pharmacist, advise
my DIL to give the pepcid at night (he is only getting the PPI twice a
day.)

Both sources said that PPI’s can be given with (but not at the same time)as H2’s such as (pepcid and zantac)

Because his symtoms were getting worse on the Pliosec suspension we
asked the Dr for Prevacid solutabs. He was fighting taking the Prilosec
and we weren’t sure if it had become inactive.

Also, he started to get better the day before we switched to Prevacid,
so maybe the Prilosec suspension was just taking it’s time to work.
Some babies do beter on Prilosec and some on Prevacid. Mom puts the
Preacid in a syringe with water and elijah just thinkshe is drinking
water, and we know he is getting all of his dose.

He is not on the higher MARCI dose, but he is still doing much, much
better except at night..he still has some bad ones and DIL ran out of
Pepcid and Pedi Gi won’t prescribe it. So for now she gives Mylanta,
cherry supreme.

Don’t let the Dr’s treat you like that. This is YOUR child, not the Dr’s. It’s not like you gave her arsenic or something.

I wish we had video taped Elijah screaming in pain for hours on end,
showing Sandifers symptoms, refusing feeds, SCREAMING first thing off
instead of most babies starting off with fussing then work themselves
up. We could hear the acid come up and he would SCREAM.

Because he is only my GS, I can only do so much. If he was my son, I
would have been more aggresive concerning the PPI issue. Elijah’s mom
is a first time mom, who has anxiety and won’t say boo to anyone. I am
not saying that is bad, but it is a problem she has.

She is a wonderful mother to my only grandson. I have 2 GD’s and 6 sons
of my own. I like boys and because Elijah lives in an apt
upstairs from me I have been able to be there for him since before he
was even born.

One of my sons passed on in Dec 2004 and 8 months later I had a new
baby granddaughter Isabella and 3 weeks after that Elijah was born.

What a blessing he has been. God is good.

Hope you do well with your daughter.

And sorry I went on and on 🙂

[Author]

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