bad for weeks,months,

[Anonymous]

Hi. Mostly need advice….. Carson, 9 months old,15.10 pounds, 26 1/4 inches long and has been refluxing since birth. I nursed him-MSPI strict diet-til he was 6 months. GI Spec said to start Neocate and it would help alot. Wrong. He wouldn’t eat if I didn’t “force” him to eat and what he does isn’t enough to carry him on a growth curve. He only eats rice cereal (organic) and refuses most bb foods. He only drinks a bottle when he is sleeping. He refluxes forcefully and had an ear infection on Feb 6, March 9 and April 6. Peds doc says tubes – I say lets stop the reflux. Our GI Spec says we are taking the max meds (15 mg prev solutabs and up to 3cc Zantac if needed). I went on MarciKids and gave him 15 mg Prevacid twice a day for 4 days but haven’t seen much improvement. Actually, his day naps were improved, but nights still really stink. I am just THIS FAR from my wits end. I have a GI Spec apptmt in 9 days and am debating if I should “request” the fundo surgery (although I have seen a lot of negatives with that surgery from web postings). Does anyone have any suggestions? Is there something new? Surgery? Not? Natural aloe vera pills on web site? What should I bring up? I am exhausted and crabby and truthfully, the only ones who know how bad it is are moms like all of you. —I am sorry to pout. Grown women shouldn’t be put through this; let alone how my little guy feels. Thank you for your suggestions. I am feeling so desperate.

[Anonymous]

Brenda, I don’t have answers just offering some support to you and your family by passing on what we have learned. I hope Carson grows out of it soon. I know how hard it must be on the other kids in the family too. You mentioned marci-kids… Ryann is 8 months old and on 30mg of prevacid. We split it up 3 x a day, apparently babies metabolize 3x faster than adults. Also, we give the beads to her in a bit of applesauce, wait 30 mins. and then feed her a full meal.

The neocate is awful! My dd takes it now, but only after we mixed it with nutramigen and then gradually phased it out. We also thicken it with simply thick and beechnut oatmeal (no soy). DD doesn’t like baby food either, I have to distract her to take the couple spoonfuls with medicine in it. She is living off of those gerber puffs, corn flavor, with no soy in it. Good enough for now, they have added iron and zinc, so doc. said allright.

Also, it really helped with ear infections when we put her in a sling and wedge combo. She sleeps alot better too on her tummy.

We have started giving her coats aloe- strawberry/kiwi kind. My husband knows the owner, he has given it to his own children who had reflux and grandchildren. Supposed to have a healing effect. I have notice a difference, can’t hear her hoarsness or stridor anymore. She is taking 1 oz. 2x a day straight from a syringe.

So difficult with refluxers, you never see immediate results. Hope you find something that helps him soon!

[Anonymous]

Brenda, just wondering if he had a scope and/or probe done to identify any damage and the severity of the reflux. I might go that route before considering a fundo.

[Anonymous]

Has carson had an endoscopy yet? My andy was scoped recently since he wasn’t responding to his dose which was also a decent amount for his weight etc. After the biopsies the ped GI doubled his dose in order to prevent his damage from getting worse.

Hang in there until you see the ped GI. sometimes they are willing to tread where peds are not.

You can’t stop the reflux but you can neutralize the acid so that your little guy has time to heal. I would recommend the Aloe and possibly even probiotics. The probiotics will really help move things(food) along and probably what you’ll see is less forceful reflux coming up. Also since your little guy was most likely taking antibiotics in the recent past the probiotics will help to set things right in his stomach.

I do agree with you on getting the reflux under control before going gung ho on the tubes. Between the ENT and the ped they have always told me that tubes are only recommended after about a year of chronic infections(i was considering them for dd 2 yrs ago when she went through constant infections but she magically outgrew it at age 3).

Other than that i would still recommend constant diligence about positioning that i am sure you have already heard.

uh oh the kids are getting restless so i gotta go 🙂

[Anonymous]

Thank you so much for the responses. I have printed out your responses and plan to take them to the GI Spec next Wed. I thank you so much. Sometimes I think I am just going crazy. It is so wonderful to hear your helpful advice.

[Anonymous]

If he’s only eating when sleeping he is probably so uncomfortable from the constant acid burning his esophagus that he won’t eat when he’s awake. I’d really push for a higher dose of Prevacid. Too little just won’t do the trick. My son suffered for months until I found this site and the marci-kids site and finally convinced my doctor to put him on the right dose. I printed the information and sent it to her so she could see the research and the PPI dosing information for herself. Then, and only then would she put him on the dose he needed, 10mg/3x’s per day. I would highly recommend that you print the information on PPI dosing and take it with you to your GI appointment. Many doctors (including Ped GI’s) are not aware of this research and our babies are under dosed.

Here’s the link http://www.marci-kids.com/

It’s quite possible that if he was getting enough Prevacid he would feel a whole lot better and his eating issues would improve dramatically, and he’d probably sleep a whole lot better if he didn’t have chronic heartburn. The higher dose helped my son tremendously!

Good luck and glad you found us

[hellbennt]

I’m so sorry to read your news! Sounds like you might need a new doctor? I’d try to see if he’ll listen to reason first and then move on…Here are some links to help you:

Reflux & ear infections: https://www.infantreflux.org/forum/forum_posts.asp?TID=2310

Publications on PPI dosing: https://www.infantreflux.org/forum/forum_posts.asp?TID=2669&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;TPN=1

Procedures: https://www.infantreflux.org/forum/forum_topics.asp?FID=10&am p;am p;PN=1

Ph Probe https://www.infantreflux.org/forum/forum_posts.asp?TID=4651&a mp;a mp;PN=1&TPN=1

michelle’s post about pushing for the right dr: https://www.infantreflux.org/forum/forum_posts.asp?TID=1002

[Anonymous]

i think you would want an endo and ph probe done to see if surgery is really necessary. there is usually certain criteria to be met before a doc will do surgery. my daughter had a fundo at almost 10 months old, but she was anemic, failure to thrive, had an ulcerated esophagus, and was refluxing almost 25% of the time.

kevieb2006-4-17 20:12:29

[Anonymous]

Thank you for your replies!! I took Carson in to see the specialist on Wed and was fully prepared to throw a fit about increased meds OR surgery. It is too hard to manage a family of teenagers and have a baby who is sooo very difficult still at age 9 months. Our specialist, to my surprise, said he was willing to try this very high dose of meds and see how it goes – well, said I could continue (I told him I had been doing it at home) with 15mg x 3 times a day. The first good thing I noticed was that he didn’t scream in his carseat anymore. He is so much happier during the day and his naps are soooo good. We have never seen his little eyeballs closed for very long and it has been around 2 hours and 1 hour in the aftn. His nights are better, but not great. I am hopeful that after being on this much Prevacid, he will respond and be at least manageable at night.

When he has been on the meds for a while, I will start the aloe.

What makes me mad is that **I** had to be the one to come in to his office with 3 piles of info (surgery info, marcikids info, and emails from others moms) and plead my case. If docs know that more meds (Prevacid) wont hurt (he said that & it is all over the internet) WHY don’t they up the doses to give these kids some relief? Why do the moms have to be such investigators???

Thank you all again for your help. I will post again to let you know how we are in a few weeks.

[Anonymous]

Brenda:

I am also from South Dakota – where did you take Carson? We are from the Aberdeen area. Have been to a pediatiric gastroenterologist in Fargo but he was such a jerk. Things are going ok now but wonder for future reference.

Thanks!!

[Anonymous]

Robin: We are in Sioux Falls. We see Dr. Gary Neidich at Sioux Valley Hospital Childrens Specialty Clinic. The name has changed now that Sanford has given a bunch of money to SVH. do like Dr. Neidich, and he seems quite thorough, but he NEVER mentioned that Carson should maybe be getting more meds. I was so surprised he agreed to this big bump of PRevacid. Dr. Neidich is also quite good when I phone but don’t have an apptmt. They will squeeze us in or give us suggestions on the phone. If you would like a ph number or address, etc. let me know.

[Anonymous]

Great news about the Prevacid increase!!! Hopefully Carson will be feeling much, much better soon. I’m with you on the frustration with these doctors not knowing about PPI dosing in infants. It drives me nuts because my first reflux baby suffered needlessly for nearly 9 months. I didn’t know about this site and didn’t have any information to help her. My son (second reflux baby) also suffered for months, but thank God and thanks to this site and Marci-kids, I was able to convince my doctor to put him on the correct dose of Prevacid and he finally began to feel better and eat better. I feel so, so bad for people who don’t find this information or can’t convince their ill informed doctors to prescribe the right PPI dose. These poor babies.

Anyway, I’m so happy for you and Carson. Please let us know how he is doinng.

ndrose2006-5-23 15:43:3

[Anonymous]

Christine,

How totally weird. I am actually from Litchville and spent many a days in Jamestown. We’ll definitely have to hook up at Storybook Land sometime and share stories. Would love to meet you!! My first daughter (also a refluxer) was also born in Jan 02 – Liza and Kayla would have a great time together.

This board is soooo cool!!!

Robin

PS: Sioux Falls is in the SE corner of SD

[Anonymous]

Great! I’ll give you my email and we can maybe make plans to meet one day. That’s cool that our oldest girls are the same age. They’d have fun at story book land together.

I’m actually fairly new to North Dakota (5 years) so I don’t know all the surrounding communities yet. I’ve heard of Licthville, but don’t know where it is, and I thought Sioux Falls was in northern SD!! I guess I should go out exploring more, or at least study the map a little! My friend who’s lived here all of her life told me about Story Book Land. Otherwise I would never have found it.

I hope to hear from you and meet you soon. Here’s my email

[email protected]

[Author]

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