Infantreflux.org | I need help!!!

This topic has 11 replies, 1 voice, and was last updated 19 years, 11 months ago by Anonymous.

Viewing 12 posts - 1 through 12 (of 12 total)

Author

Posts
November 22, 2006 at 8:32 am #18746

Anonymous
Inactive

This maybe long but I really need help here….

My daughter, whose 3 months old, has similar milk protein and silent reflux as my son did 2 years ago. She however is in far greater pain with gas and intestional pain as I can tell. She poops once a day and its like shes fine once she poops which is pure liquidy and usually a blowout. Anyhow the gas just accumulates for the rest of the day and by 6pm she’s a mess again.

She is currenly on Nutramigen and Prilosec. I’m needing help with this.. should I change formula to Neocate or Elecare and which one should I try? The reason I ask for opinions is this…

Ok about 3 weeks ago after I new there was something wrong I called the only upper GI Ped here in Fargo, ND. (When we had our son we lived in Dallas and had the BEST PED GI DR) Anyhow they told me I had to get a referral to see him. So I called my Ped and they sent a referral saying it wasn’t urgent to see my daughter but that they suggested it. When I called back the Ped GI Dr they told me I could not get in until FEBURARY!!!!!!!!!!!!!!!!!!!!!! I told them by then she’ll be a lot better. I put myself on there waiting list, but I’m sure my chances are slim.

So for the last 3 weeks I’ve been into my Ped 5 times. They changed her from Zantack to Prilosec and he said on the way out the door. If this doesn’t work then we’ll move onto something like Neocate.

THis was yesterday. Last night I decided I cannot take seeing her and hearing her in so much pain. I need to either put her on neocate or elecare ??? Which one???? And/or take her to Minneapolis to a Ped GI that isn’t booked until Feb. I’m just not sure if I should just try experimenting first with Neocate and Elecare and then go down there or what???

I have post parteum even more b/c of her constant crying and not being able to leave her. I’m so frusterated I really need someone’s opinion thats dealt with something like this.

I think I”m going this am to buy Neocate or Elecare.

Please help me I feel like I’m going to have to go mad on these Drs .. UGH how frusterating.

November 22, 2006 at 8:54 am #18747

hellbennt
Keymaster

Welcome Helen!

I feel so bad reading your post! I hope we can help you…

The first thing that comes to mind is that perhaps your daughter isn’t on a ‘proper’ dose of prilosec…and, the next thing that comes to mind is that it most likely isn’t compounded correctly (unless you’re giving capsules & that’s very difficult to give infants…)

So, what I would do is to:

1) check her dose

http://www.marci-kids.com is the place for the latest up to date research about PPIs & infants.

2) read up about PPIs from the link that is stickied (top post) in the ‘Medicines’ Forum called ‘treating GERD w/ PPIs’

the top post is about Zegerid & the second post (in purple) is called ‘Prevacid 101’ (but really it’s about all PPIs)

3) FAX your ped.

a) THANK ped

b) state baby’s weight & current dose

c) request (don’t ask) for whatever dose it is that marci-kids recommends

d) request Zegerid

4) check zantac dose (there’s a link from ‘Prevacid 101’)

and give zantac in the meantime, along with the prilosec untill you get things figured out…you can give both meds but just make sure that the zantac is given 2 hours or more seperate from the prilosec.

5) from the ‘MSPI’ Forum, click on the stickied post

scroll down to ‘Misconceptions about elemental formulas’- this might help you with your formula decision

Sorry to bombard you!

Please let us know how we can help with all of this!

~laura

ps:

what’s the connection between gas and reflux?

Gas is created when something isn’t digested properly; for example,
beans are generally harder to digest than other foods, which is why
they are notorious for causing gas in most people (they are generally
not a common problem with breastfed babies through mom’s milk, though;
this is just a common example to help make sense.)

Also, gas puts pressure on the esophageal sphincter (the muscle at the
top of the stomach that helps move and keep things down), making it
easier for whatever is in the stomach to be refluxed.

November 22, 2006 at 8:59 am #18748

Anonymous
Inactive

Hi and welcome neighbor!! I am from South Dakota and Fargo is like my second home (we go there a lot!! – shopping mostly but my sister also lives near there).

As far as the GI goes, is it Dr. Blaufuss (?spelling). In my opinion, he was a total idiot right out of the stone ages (we saw him in late March – Abby was almost 2 months old). All he did was talk and didn’t listen to anything we had to say. I know “ndrose” (from Jamestown) talked to her doctor about seeing a specialist and she wouldn’t even recommend him. “TBEich” is from Sioux Falls and has had great luck with her doc. It would be great if she would chime in and give you some details. I will try to PM her. I will also PM another board member who lives in Minneapolis to see who she sees down there.

Anyway, this reflux is so hard to deal with, we shouldn’t have to deal with idiot doctors. Hope you can find the help you need!!

Robin

November 22, 2006 at 9:31 am #18751

Anonymous
Inactive

I just had one more thing to add: You said you just started Prilosec yesterday, right? Sometimes it can take a couple of weeks before it really starts working. Also make sure you’re on a high enough dose like Laura said. Good luck!!

November 22, 2006 at 10:19 am #18756

Anonymous
Inactive

Hi Again,

In your situation I’d make an appt with a reputable and recommended ped GI in Minneapolis or the one Robin suggested in South Dakota….hopefully that mom will post that docs name for you. Anyway, I’d make the appt now becuase you can always cancel it if you get things worked out.

However, many babies are very adequately treated by peds and family doctors for reflux. My son was treated by our family doctor. Like Laura said, I’d check to make sure her Prilosec dose is adequate at http://www.marci-kids.com. Some babies do ok on lower doses but my son (and many others) really need the higher doses that these researchers recommend. And, it can take two weeks for the damage in the esopagus to heal enough for the baby to get some relief.

In the meantime you can use some Mylanta Cherry Supreme. Although it can cause loose stools which she is already having a problem with, so you’d probably have to be cautious with it. It’s safe for babies and many of us use it.

One more thing……many of us who moved from Zantac to a PPI (like Prilosec) have kept our babies on Zantac for the two weeks that it can take for the PPI to start working. Otherwise it’s like the poor baby is getting no meds for those two weeks. You need to space them at least 2-5 hours apart.

Oh, and I understand the post partum crying…..It’s so natural even in the best of circumstances, but reflux adds so much stress and sadness….especially when your doctor doesn’t take your concerns seriously and won’t treat your baby adequately. It really is h*ll on earth, but honeslty it will get better. The right PPI, and the right dose, along with the right formula will turn things around. You’ll find the answer.

And yes, I’d try the Neocate. You don’t need a prescription to buy it but you do need one to get it paid by insurance. Maybe if you try it for two weeks and she does well on it you can convince her doc for a script.

I’ll PM you my phone number and you can call me anytime for some support or questions. I know how hard this reflux nightmare can be and I’d be happy to help you in any way I can.

Good luck.

ndrose2007-6-20 23:37:47

November 22, 2006 at 1:10 pm #18765

Anonymous
Inactive

I think everyone has given you some great advice on how to deal with your babies reflux, but I want to help you. I say that because another mom was referred to me because her baby had reflux. We both had the same midwife and she knew I had two babies with reflux and could possibly help her. I talked to her once and gave her all the info I could think of. I was concerned about her, but waited for her call. I finally called her to check on her and apparently she had been trying to make sure her insurance was in place because she was going to run her car into a tree. She felt like someone else could take care of her baby better than her. I feel horrible about not calling her back and I don’t want that to happen to you.

First be as open as possible about your feeling to someone. Anyone! Second take and ask for help. If not for yourself for you baby. Last I would look into getting on an antidepresant if your not already. I am much better this time around, but with my first I was also very depressed. Mine came out in anger. I was a horrible mom to my poor baby and being open helped me a lot. I realized a lot of moms lose it sometimes. We’re just to ashamed to talk about it.

November 22, 2006 at 4:07 pm #18778

Anonymous
Inactive

I agree with Shelby..get your feelings out…it is frusterating…

and FYI, I live in Mpls and even with a referral I had to (and am still waiting) 2 months before I got in…so if you are even thinking about it I would call now and get it set up…

good luck, and its rough, but it does get better eventually

hang in there

November 26, 2006 at 10:09 am #18993

Anonymous
Inactive

Ladies!!!

Thankyou SO MUCH for your help. Laura I did do some of your suggestions and they are working. I put her on Neocate but we ran into trouble this weekend b/.c there is no place we can get Neocate in Fargo and I have a special order placed but it won’t get here till MondAY, so the only place that had it is closed today. And we are greatly suffering.. ugh

Anyhow I went and saw her peditrition he game me miralax for the Neocate constipation. And he’s so CLUELESS he basically goes off of what I think we need to do for her so I”M SO THANKFUL you posted what you did.

I am wondering if I can call you or you can call me. I ran into this lady I work with at Macy’s. Fulltime she is a pharacutical sp? rep for a IBS medication. It was like God sent her to me when I talked with her. And I’m think the one medication that you said to ask for is the one she represents but thats why I wanted to talk to you about it. Anyhow heres the good news, her territory has a GI Dr that is world renoun and she is going to ask him about Kennedy’s case and she said she’ll ask him to help us find someone ASAP for Kennedy. I found also the most interesting stuff she said about IBS and reflux. She did say they run hand in hand. Anyway I would love to share with you the info she told me about it too.

Anyhow contact me by email if you can.

Thanks again !!!

Oh yeah I’m on prozac and its work for the PP depression. LOL

Helen

November 26, 2006 at 11:35 am #18997

Anonymous
Inactive

Helen:

That’s great news!! By the way, I talked to the gal in Minneapolis and she said there are a few good GI’s in St. Cloud and “TnBEich” said that Dr. Gary Neidich is who they see in Sioux Falls.

What is the drug that this lady represents – just curious.

Hope things work out for you!!

Robin

November 26, 2006 at 2:00 pm #19000

Anonymous
Inactive

Helen,

I’m so glad you called and I hope I was able to help some.

Here’s a link with info on getting Neocate approved by insurance…

https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;KW=going+to+the+top

I wish you the very best and I hope and pray that you get Kennedy in to see a wonderful GI doc soon. Good luck and please keep us posted. Also, feel free call me anytime. Maybe we can meet one day when I come to Fargo to shop.

November 26, 2006 at 2:40 pm #19004

Anonymous
Inactive

Robin,

Thanks for the email! I got on the phone this am to Christine, I needed a little insight and help this stuff is sooooo frusterating. Anyhow I did not know about Apria. So I will be looking into that on Monday.

I did not get the exact drug name but after talking to Christine I don’ t think its Zegerid. But its so close I actually forgot it. Good thing is this lady will be sending me an email with info and stuff so I will be sure to include it in my next post.

Thanks,

Helen

November 26, 2006 at 4:30 pm #19011

Anonymous
Inactive

I am so glad to hear that things are looking up . Also glad to hear that you are on some meds for yourself and that you have had a chance to talk to someone on the boards. I can’t even begin to explain how happy I am to hear you sound so much better. You have made my day!!!!!!!!!!!! No mom should have to feel the way you did. Sadly enough to many do. Keep up the good work ladies.
Author

Posts

Viewing 12 posts - 1 through 12 (of 12 total)

The forum ‘HELP!!!’ is closed to new topics and replies.