Posted By Posting
Oct 06, 2009
iwonkas1
new here...please help!!!
hi ladies!!!! im new here...let me introduce myself...im first time mom...i had a 2 vessel cord pregnancy...my baby was born with cistic kidney(we knew that from our 25 week sono) when she was born she was only 5,6 oz little but very strong...the kidney is under control...at 2 weeks old colic kicked in...at 3 weeks old i ended up taking her to the er because she would vomint accross the room..the doc there told me all babies ''spit up''(she wasent spitting up...she was VOMITING!!!) and babies cry...to get over it!!!! everybody around me was telling me that my baby is fussy and crys alot and ohhh is very colicky and just to accept it!!! well i would not!!! no baby crys 20 hr out of the 24...started changing formulas and it would help for 3 days and back to normal....it got to the point that i didnt sleep more than 1 hr a night for 2 weeks when i finally decided to see a gi specialist(my cousin recommended it since Sarah was spitting up alot) well Sarah has acid reflux..the specialist put her on 1 ml of axid 2xday...and told me to give her pedialite at night...changed formula to infamil a.r. worked for 1 week after that i had to give her formula in the middle of the night because she was screaming,she was HUNGRY!!!!! called the gi specialist and told him that she started spitting up something that looked like pink cottage cheese!!! told us to come in...since she is gaining weight he said that we have to get over it!!! and it will go away on its own....well what could i do at that point went home...but now week 3 on the axid and i get no sleep!!!! called him again and he said to take her off the axid and call him in 4 weeks!!!! WHAT!!!?!? F*&^ Him...thats what i said...called my pediatrition today got her to prescribe Sarah prevacid the dissolving capsuls half in the morning half at night...gave it to her tonight i also got the mylanta because she screams of gas pain all night long....i think this is all...Sarah is almost 3 months old...shes only conftuable in my arms!!! no sling will work...shes 11lb my shoulders are giving up on me...all i wanna do is cry...i know its because i dont sleep...i feel like this will never end... is there anything else i can do to help my little one?!?!? i do hold her up 1/2 to 1 hr after feedings...i give her 2 to 3 1/2 oz of formula every 2 to 3 hr...i dont overfeed her i always burp her few times...she wont stay in her carseat or stroller so i cant go anywhere she chokes on her saliva if i dont pick her up fast enough...sorry for the spelling
Oct 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
HUGS!! I'm so sorry you have to go thru this. Sleep deprivation is so hard!!! Good for you to keep pushing for your little girl, we've all been thru it here, so yu'll get good support,

First things first, I'd talk to your Ped about trying Nutramigen or Alimentum. Both are completely broken down for easier digestion. Most Reflux babies cannot tolerate cow milk formulas or soy formulas unless they are boken down. Maylanta was a life saver for us too!! Then get your bed wedged/inclined at the head for babies comfort, and hopefully you'll be able to gently roll her over off of you chest for some sleep.

I have 2 reflux babies and I know it is sooo hard, but hang in there, it will get better!! My little one's screaming again...I'll check in later

Oct 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
BTW- both my babies slept on there tummies from the beginning, which really helped with the pain....just a thought.
Oct 06, 2009
johnniesnewmommy
I can so remember back to this time last year when we were right where you are now. 1st Off - get someone, anyone to try to take care of her so you can get at least a couple hours of sleep. Sleep deprivation is something we all get used to but it is sooooo hard in the begining. Not to be a downer but mine is 15 months old today and he has only slept 1 time through the night, most nights he is awake every couple hours. Even a few hours of sleep will make it so you feel like you can take on another day. Switching formulas was always really hard for us. We finally switched to nutramigen and we stayed on that until he was almost a year old. We did have to switch finally but because of his extreme food allergies, not because of the reflux. I know its a little more expensive but If you can get a little sleep and a less cranky baby it is so worth it. Have you tried adding rice cereal to thicken the formula? You said she is only 3 months so the doctor may think she is to young but we had to thicken the formula from 8 weeks on. I know there are a lot of people who use a thickener like simply thick but we were able to use rice cereal just fine. I added 1 scoop of rice cereal to each scoop of formula. It makes it harder to reflux. The choking was common with mine as well, I used to joke he could choke on air, but I really think it was true. The prevacid that you are on now, seems to work really well for most kids. Mine couldn't tolerate it, but he does well on nexium. Axid and zantac just made him itch. It does take several weeks for the prevacid to really work and I think you have to make sure its given on an empty stomach. That's not always easy when they are eating every 2 hours so you may need to play with the timing a little. I just want you to know, that I too have been there, and not so long ago. I have made it past the point where I thought I would die or wanted to die from sleep deprivation, so there is hope. Just hang in there!
Oct 06, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
OMGosh sweetie your story sounds just like our even the 2 vessel cord. Jedd had a heart defect though, nothing wrong with his kidneys though.

What state are you located in?? We may be able to recommend a great GI to help out!!!!! Did you have the pleasure of saying those choice words to your GI before firing him,her???? That would have been priceless.

FWIW, if you are not comfy letting her sleep on her belly, you could always let her sleep on her belly on your chest. Jedd only slept on my chest for about the first 2 month. After that point, he got a feeding tube at 9 weeks and HAD to sleep in his bassinet beside me. :-(

I would prop myself up with 2 pillows behind me. Hubby is a dead sleeper, nothing wakes him up. So, I put a pillow beside him, and another pillow rested on the outside of the bed resting on the bassinet. That way, I was all snuggled in with him and he wasn't going anywhere at all, just stayed on my chest.

If does get better, I promise. I won't lie, we didn't get better until Jedd was about 20-24 months old. But, he had some other complex issues going on as well.

What formula are you using?? There are some really good pre digested ones out there that can help with GERD. They are easier to digest so they empty from the tummy faster and in turn makes the GERD better.

We used Alimentum. FWIW though, they taste and smell horrid. So, the earlier you switch the better.

Oct 07, 2009
iwonkas1
thank u sooo much!!!!!!!!!!! i gave her alimentum few weeks ago....after 2 weeks she was sooo gassy... that she was passing gas all day long!!! like a old person!!!thats when she stoped sleeping at night because of the gas.....tryed nutramigen with bayles cereal she wouldnt take it because of the taste!!!! i heard that nestly worked for some....how should i give her the prevacid!?!?!? 1 1/2 after a bottel 1/2 hr bofore the next one??? its hard because i give her a bottle every 2 to 3 hr....i know it will take time for the prevacid to start working...i hope not longer than a month!!!! other than that my dh takes her when i need a nap so i can function for the rest of the time...last night wasent that bad...she only woke up every 2 1/2 hr which is not bad!!!! i swear shew slept better when she was younger!!!!!! her mattress is elavated..the white nise is on the whole night...plus sometimes i have to put the blow dryer on as well...it dosent bother me!!!! i got her to slep in her swind so that helped too....gotta go shes screaming now...THANK YOU!!!!!!!!!!!
Oct 07, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We always did Jedd's PPI at least 30 mins before a meal. That way it will be most effective. It may be hard to do, but it should be worth it in the long run. KWIM?

Yes, Alimentum can make them gassy, did you gett hose wonderful green poos too??? Jedd's poo[ was always green on Alimentum, it's normal for poop to turn green when you are using a predigested formula. He Didn't get too gassy though after he was on it for a bit.

My sister's DD used the Nestle Good Start with comfort proteins. They didn't know until they switched he to whole cow's milk that she was lactose intolerant. So, it worked for her.

I'd give it a try. Just remember though, if you change too many things at one time, you won't know which one it is that is making things go better. Try switching one thing every 2 weeks or so.

It really does get better. Take advantage of those naps your DH is giving you. You will feel like a new woman after one.

Oct 07, 2009
iwonkas1
jeddsmommy>>>> thank u soo much...i wont change the formula now...i will stick to the enfamil s.r. for now...it seems to work for now!!! i have another question...like i mentioned before...my little one wont stay in her carseat or the stroller!!!! she screams to a point that she starts choking and turns purple!!! when we take her to the doc app...after i put her in the stroller i have to put a bottle in her mouth(usally theres this polish tea that i give her for gas,its for babies) and when shes drinking it shes fine as soon as the bottle gets empty she starts screaming again...dose this have anything tyo do with the reflux?!?!?! will it ever go away?!?!?!
Oct 07, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Lots of Gerd kids struggle with the infant carriers. It squashes their tummies too much and kicks the acid up. Ryan could shatter the car windows with his screams. I switched him to a Britax Boulevard carseat, (back facing of course) and problem solved. Same idea on the swing... I switched to the Fisher Price soothing motions glider.
Oct 07, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Well, sad to say, Jedd hated his car seat and the car for that matter until he could forward face. We did it as soon as he turned one even though he was under for weight a tiny bit.

Personally, I think it was because every time I had to break, his reflux came up and aggravated things horribly. Just to go like 1 mile to my sister's house to drop him off so I could go to work, I would have to pull over 3-5 times to suction out his nose with the bulb syringe. IT was awful. He screamed no matter how short or long the car ride was. :-(

Will she take a pacifier??? I highly recommend using one. It will help her to swallow all the time. Which will help the reflux. Jedd was totally attached to his "sucker" as we called it, until he was almost 2 years old. We were told to let him have it as long as he wanted to help his sucking muscles since he was predominately tube fed for about 18-20 months of life.

Yes, reflux does go away. It will be hard for a while but it will get easier as she grows. For a kid like Jedd, who is almost 3 and is still taking meds and still flares, he will NOT be outgrowing it probably ever. We have already accepted that. He's going to be one of those kids who will need meds for life. Whenever I am low on meds and waiting for the pharmacy to refill and I have to give lower doses to stretch the med, he flares pretty bad. Happened just this last weekend.

Have you had any testing yet??? Like an Upper GI or an EDG (scope)???? You can also ask the Ped for an RX for Carafate. It's like super mylanta. It will coat her throat really really well and will protect it from damage. It can be tricky to time when you are using a PPI but it's worth it.

Oct 07, 2009
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
The Nestle Good Start formula worked best for us and we are now using the Good Start stage 2 formula as mine (age 15 months) doesn't eat.... He also hated and still does not love car seat and I do agree that the position aggregates the reflux. After no sleep for weeks with a screaming baby, I put him to sleep on his tummy at week 6. Best decision for us! He still doesn't sleep through the night, but does go 5 or 6 hours at a time. Progress! You will survive and you are doing a fantastic job fighting for her.
Check with your
doctor first!