Infantreflux.org | People just don't understand....

This topic has 15 replies, 1 voice, and was last updated 16 years, 6 months ago by Anonymous.

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March 18, 2008 at 10:11 am #49109

Anonymous
Inactive

Just so sick of crap. I showed my sister who I’ve vented to time and again about my daughter the MARCI kids page, and how I think my daughter is under medicated on the prevacid. She’s 12 pds at 6 months and only gets 7.5mg/daily. She pretty much dismissed my argument, saying I should stick by what the Dr. prescribed and maybe they wanted to start her out slowly on the drug. Everything I am reading here and there all points to the fact that most kids just haven’t been given the proper dosages and drugs… I started crying, everyone seems against what I’m trying to do for my daughter. I wanted to try her out on Alimentum, maybe she does have a milk protein/soy intolerance. Finally, at 6 months, they’ve decided “yeah, this little girl has major issues, but we aren’t going to get her in for her upper GI for another month 1/2” and that answer just doesn’t suit me. She’s not rolling over anymore, doesn’t babble, reach for toys, NOTHING. Like a 2 month old, honestly. They all say “listen to the Dr” but the Dr.’s are the ones who let this little girl SUFFER for so long!! I want to do ALL I CAN, not wait for their imperfect diagnosis and minimal expertise. Everyone seems against me, or just is unwilling to open their minds. 🙁 Thanks for letting me vent.

March 18, 2008 at 11:09 am #49110

Anonymous
Inactive

I really feel for you……I can honestly understand how it feels when some doctors & family don’t take you serious. You are her mom and you know best! When our ped told us it was colic and wouldn’t help anymore, we went to a GI specialist. He was very helpful on getting Jenna back on track and some relief!! If I were you I would fight to get her an upper GI sooner & Prevacid adjusted, even try a different doctor if I had too. Just a few things we tried that helped with our daughter’s reflux……we added 1 tbsp of rice cereal/ounce of formula, elevated her bed (some recommend the tucker sling), and a pacifier seemed to help. Hopefully, others will chime in. We can all relate to what you’re going through! Good luck, you’ll be in my prayers! Keep us posted.

March 18, 2008 at 11:16 am #49111

Anonymous
Inactive

I just read your other post……sorry to hear the rice cereal didn’t help. I wanted to mention, we found Jenna also had a milk allergy and we put her on Neocate. This helped soooo much. It’s very expensive, but I know some insurance will cover it. We buy ours on Ebay, its almost half the price on there. You may find Nutramigen on there too. skcrites2008-03-18 11:18:55

March 18, 2008 at 11:36 am #49112

Anonymous
Inactive

I think I would contact early intervention in your state as well. If she is not developmentally on target, then you can have her tested and get her some services to help catch her back up. We have found some of our therapists (not all ) to be a tremendous resource for other things, good doctors, just helpful hints, support, and most of all validation that we are not feeling crazy! If you get her tested and she is on target, then you can at least put that worry aside for now, if she is not, then she can get some PT, OT, SLP, Feeding therapy, etc, that she needs so you are not going through this alone.

This is a tremendous place for support as well, and we know exactly how you feel and have all been in your shoes at one time or another where the people in our lives “just didn’t get it!”. It can be really frustrating, but know you are not alone and there are other resources out there to help you.

If you want to PM me, or let us know what state you are in, we can probably search and find the right numbers for you to call.

Hang in there!!!!! We are here to help!

Ann Marie

March 18, 2008 at 11:46 am #49113

Anonymous
Inactive

She was evaluated at almost 5 months by early intervention, but she was JUST on the line, so they wouldn’t put her in for therapy, which really tweaked me. Now a month later…. and a new pediatrician…. luckily, we found a really NICE local Dr., small practice where HE gets on the phone with his patients’ parents. He already put the call in to Fulton County here in NY to re-evaluate ASAP, at this point they can’t deny her he said, she’s just too far behind. I asked about upping her prevacid, and directed him to the Marci-kids, which he seemed really interested in investigating. He’ll call back if he decides to up her dosage, and I asked him about nutrimagen or alimentum, which he said he was going to recommend at her appt. next Monday. Because her appt with the Gastro Dr. isn’t until the END of April, I wanted to try everything I could for her. Thanks for all of your responses, and I’ll say this again… I’m so lucky to stumble upon this site, and all of your support out there! I really don’t know how to PM anyone yet, I’m not sure if the moderator will remove this, but my AOL IM name is verucalyse and my yahoo IM name is Verucalyse too. Anyone who wants to chat, you are welcome to IM me! Thanks again to you all…..

March 18, 2008 at 2:27 pm #49116

Anonymous
Inactive

Sounds good about interevention and I think NY has a pretty good program.

I would also call the Ped GI and ask to be on a cancellation list. If your doctor is willing to call, I’ll bet they will fit you in sooner, so no worries there.

Hang in there, and you are right, this is an amazing place!!

Welcome!!

Ann Marie

March 18, 2008 at 2:34 pm #49118

Anonymous
Inactive

Aw, Ann Marie beat me to it.. I was going to suggest getting on the GI’s cancellation list too. Sometimes that can get you in much quicker.

Also, I totally understand your frustrations, and you are not alone, nor are you crazy. I know I felt like that so many times because family, friends and doctors would dismiss my son’s reflux problems.

Feel free to vent here all you need.

March 18, 2008 at 3:36 pm #49121

Anonymous
Inactive

Good luck with EI. I hope that things work out for you.

March 18, 2008 at 4:23 pm #49122

Anonymous
Inactive

I called up my Dr., and he was very open to checking out that Marci-Kids website. He called back after looking and upped her dosage to twice a day, 10mgs or 3 times a day, splitting up the 20 mgs. He said it was completely up to me, considering I’m the one splitting the solutabs. I’m going to try x2 daily, 10 mgs. He also agreed on the nutramigen or alimentum, I’m signing up for WIC to cover the costs. Thanks everyone for your support!

March 18, 2008 at 5:09 pm #49123

Anonymous
Inactive

… totally know how you feel… no one gets it. To this day, no one gets it. Hang in there.

March 19, 2008 at 10:26 pm #49159

Anonymous
Inactive

I, too, wanted to believe my doctor wholeheartedly. When things still weren’t better after 4 months I THANKFULLY stumbled onto this site just like you. I thought that we were OUT of options because “aren’t doctors supposed to know everything? If the DOCTOR can’t help us then my child must be high needs!” I am so glad I followed my mommy instinct and pushed for Sarah to be on a good dose of PPI and Alimentum. It was a lifesaver for her and our family!

Since our experience I have had several friends/relatives who have fussy babies. They would initially come to me inquiring about reflux (knowing everything we went through) and YET it was SOOOO frustrating to me b/c they would go to their doctor and come back BELIEVING the BS their doctors would tell them. “It’s a touch of colic”, “Give rice cereal in her bottle and she’ll be 100%”, “They don’t need medicine”. WHY WHY WHY come to me for advice when you won’t listen to what I have to say? I know I’m not a doctor but I’ve LIVED through it and I learned SOOO much from this site!

Gosh, I just got off on a little rant there… I totally understand your frustration and I think it’s GREAT that you’re fighting so hard for your little one! Hope things turn around soon!

March 20, 2008 at 9:04 am #49162

Anonymous
Inactive

Good GOD I know that answer from the Dr! My dd was EXTREMELY “colicky” for her first month, I couldn’t breastfeed, she would spit it all up, and on top of all that screaming/crying, she had inguinal hernias. So if she got too worked up crying, the hernias would pop out and I had to push the back in until surgery!! After surgery, a lot of the “colic” disappeared, but the spitting up and crying continued. I had to stop breastfeeding, all I heard from the Dr was “Are you putting rice in her bottles?” we tried that, didn’t work… I HATE THOSE RESPONSES. I can DEAL with a crying, thats not an issue, but when a baby screams like someone is beating it alive, then I tend to want to beat the DOCTOR alive.

March 20, 2008 at 4:49 pm #49185

Anonymous
Inactive

Something I used before I did the rice cereal for thickening is Simply Thick. It’s a gel that’s used by hospitals, nursing homes, etc. to thicken liquids for patients. They come in little packets or in a bottle with a pump. It’s kind of expensive, but works AWESOME! It also has no taste, so the formula will taste the same (yucky). If you decide to get this, buy the nectar, not honey b/c babies can’t have honey. I know you can buy it off e-bay too, for MUCH cheaper.

http://www.simplythick.com

***HUGS***HUGS***HUGS***

March 20, 2008 at 9:38 pm #49201

hellbennt
Keymaster

please feel free to vent & if you want to give away your Im, etc, then go for it

Pming isn’t so hard: you just click on someone’s screename – from a post they’ve written- and then when the next window pops up, look on the right hand side, under ‘communicate’ and you’ll see a button for PM

as for all of those people who don’t get it: that’s why I stick around- because it kills me to know there are babies and parents of those babies who really need help and can’t get it!!!! talk about frustration!

oh, & if you need him to, dr philips of marci-kids will even email/contact your dr!!! [email protected]

hellbennt2008-03-20 21:38:57

March 23, 2008 at 12:10 pm #49270

Anonymous
Inactive

Hi there,

i am sorry to heard you story. It si so hard breaking when i hear how unhelpful some doctors are and these babies just keep suffering.

I just wanted to say, fight, fight and fight until you know you have done everyhting posible to help your baby.

I have gone through two Gi, a motility specialist, hundreds of trips to the ped, natural mediciine, feeding therapy and other things. We are now in our resting period (haven;t been to the doctors in a while) because my dd is doing better and i know i have done what i can for her health. She is happier and finally growing and developing.

Hugs, hugs. Hang in there.

Leo
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