Scared… Please help if you can

[Anonymous]

My 8 week old dd was showing silent reflux signs at 4 weeks. She was breastfed. She would swallow a lot and kinda gag here & there. Then at 6 weeks I got PPD and PPAD and had to go on meds so I had to wean her and put her on formula. My son was MSPI and had a soy allergy (was on Elecare) so we put her on Allimentum. Well, first we put her on Goodstart and she seemed gassy so I didn’t want to wait to see if it was just a bm to formula adjustment so I put her on Allimentum. Last week her refluxing got bad. Every 15-30 minutes round the clock she urps, gags and swallows. SHe will only sleep swaddled in her swing. But she will sleep for a 4 hours at night swaddled in her crib. We have a rolled up towel and a crib wedge.

Yesterday she was gasping for air and turned grey. She recovered in about 30 seconds. Last night I was sleeping with my 4 yr old as my DH was going to get up with the baby. I heard her gasping and DH was running down the hall and I ran after him into our room and we turned on the lights and she continued to gasp for air. My DH who is an ER nurse kept patting her on the back to get her to breathe. FInally I found a bulb syringe and he tried suctioning her throat and she started crying and breathing. The whole thing lasted about 90 seconds but felt like eternity. Then again the AM she did it for about 30 seconds.

I just got back from the ped and he put her on Prevacid and told me to make an appt. with the specialist. I called and they can’t see us until March 13th.

I am so afraid to sleep as I am afraid she will stop breathing.

He gave me the Prevacid solutabs (30 mg) and told me to break them into 4’s and give her 1 twice a day. I have not been able to successfully break them into 4’s.

I am just so afraid…

Thanks

[Anonymous]

Hi Brenda and Welcome,

Sorry you have to be here and that sounds so scary! In the meanwhile, I would call the Ped and ask them to call the specialist. I’ll bet they can get you in earlier if they say that she needs to be seen quicker. A lot of docs have emergency appointments available.

Also, we never used one, but a lot of moms use the angle care monitor. This at least gives them comfort to sleep because they know the monitor will go off if something is wrong. Also, are you putting the crib on an incline? Gravity will help some, too.

Hang in there!!!! This is a great place with lots of support!!

Ann Marie

[Anonymous]

Hi Brenda,
Welcome! I’m sorry to hear all you’ve been going through with Toria! How scary! I agree with Ann Marie about asking your ped to call the GI. We had to do the same thing. We had our doctor call the GI and she got us in within a few days.

Also, how are you administering the solutabs? They need to be given on an empty stomach, followed up by a meal 30 minutes later. So she’s only getting about 7.5 mg a day? That’s a pretty low dose, and she might end up needing a higher dose.

Good luck with everything! I hope the prevacid helps and you can get into see the GI specialist sooner.

[hellbennt]

I would give more of the prevacid than the doctor said – let us know how much she weighs & we can help- just untik you get to the spec’lst- no we are not doctors but emough of us have dealt w/ all of this that we can help you figure out what to do- if you run out of prevacid you can always blame that you lost a lot when breaking it…

also in the meantime, find a childrens hospital & find out if there’s a ped Gi afiliated w/ it & if s/he ever has on call hrs in the ER- if so, bring her in to the ER when the ped GI is there…

[Anonymous]

yeah i also agree..7.5 mg is like nothing…also infants need to be dosed 2-3 times a day because they metabolize these meds so qucikly…my son was started on 24 mg at about 3 months. he is doing great on prevacid and neocate.

[Anonymous]

Hello and welcome,

When Myles was first started on Prevacid he was supposed to be on 1/4 of 15 mg tablet once per day. It was really a joke. First of all it is almost impossible to divide the solutab into 4 pieces. Secondly it’s a rediculously low dose. I just gave him 1/2 a tablet which still wasn’t enough. He didn’t finally get any relief until we got him on the high dose that the researchers at http://www.marci-kids.com recommend. You might want to print and fax this info to your baby’s doctor with a letter requesting a higher dose. That’s how I finally convinced Myles’ doctor to raise his dose. Once he was on the right dose things turned around.

Good luck and glad you found us.

[Anonymous]

I agree with the other ladies. If my baby was not breathing at times, I would up the dose. I highly dought you are going to find a dr or specialist that will put your baby on a high enough dose. If you try it and it works at least then you can tell them it is working. I don’t even tell Justice’s dr when I am increasing or decreasing his meds. I feel like there is no point. She doesn’t see him day and night. If you need to go to marci-kids and try to find some info on the meds. My understanding is that they are not going to harm your baby. I hope for you that you have an amazing specialist, but it is my experience that I have to do the research, dx my baby, and figure out what to do on my own. It worries me that your baby stops breathing. That is very serious to me. Not to scare you. I just want you to be prepared. Good luck. Also, I would think if your husband is an er nurse, they should take you seriously. Most of the time we are not taken seriously. We are thought to be just overacting.

[Anonymous]

Kaelyn did the same thing. Her problem was the alimentum. It has a slightly stickier viscosity (sp?) than nutramigen. When she would spit up (or reflux and swallow it back down), the formula would get stuck and she’d have trouble breathing. Once we switched to nutramigen, she stopped turning blue. She was actually hospitalized for observation when it started happening. Her ped recommended it because it was the fastest way to get her seen by the specialist.

[Anonymous]

Brenda, how awful for you and your hubby. I agree with all the others re the dose- it sounds awfully low. I am one of those who upped the dose on my own (well I do have a Doctorate- just not in medicine) and I am glad that I did, because it really turned things around. I initially told the Dr that I wasted some of the packets dividing them up but eventually after I kept complaining he upped the dose himself- leavingme feeling quite vindicated of course!!!!

Laura’s suggestion about the ER at the Children’s sounds good to if you can’t see a specialist soon…

[Anonymous]

Hi

my dd has/had issues like you describe, asleep and awake, where she stops breathing, and has to be suctioned, and what is suctioned out is thick mucous…hers got better being on neocate….although I agree also that your prevacid dose is way to low….but my experiances with the apnea are related to food with my dd. When we intro solids, we get the same thing, when she just on neocate, then we dont have the issues….Obviously you told your ped about the episode…did he/she have concerns about the apnea? The first time my dd had an episode we went to the ER (it was a bad one) via ambulance, and they sent us home with a sleep apnea monitor….and Im going to get an angelcare one for when she is off that (they are thinking soon I should not have to do it)…

good luck, and I agree iwth , I think it was Laura who said to go to a childrens hospital when the GI is on….

[Anonymous]

I am so sorry your baby is going through this. My dd was on 7.5 mg of prevacid and it did nothing for her. We are trialing with 15 mg right now divided in two doses. I agree with the other on a higher dose.
We just started my dd on alimentum RTF (ready to feed). It is supposed to be better than the powder kind. Good luck and big hugs to you!

[Author]

Posts