Posted By Posting
Mar 05, 2009
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
2.5 years old and still undiagnosed .. just want a normal life!
So my son is now 2.5 years old and we are still going through shit and ready to seriously lose it! We have been on nexium now for just about 6 months? 20 mg in the am and nothing in p.m. Day is pretty good (knock on wood) so long as we are on relfux diet... p.m. is still a huge struggle. Tonight he puked so much.. like a frikin' fire hose out of his mouth. . . I allowed him to have a bran muffin that probably had milk in it. Every once in awhile I just have to try let him have something he really wants. Sigh... we pay every time. He still breast feeds throughout night, usually 3-4 times a night.. and on reflux nights, much more. How do you mom's deal with your toddler during the night who don't breast feed? What do you do? My son is normally a silent refluxer. He is awaiting much needed dental surgery. We have done skin and rast testing. We've done it all .. other than ph probe. I think he isn't medicated properly. Nothing has worked for us other than nexium, we've tried it all. GI doesn't want to do ph probe, still thinks I should just leave my son alone and that he is fine - rrrrrrrrrrrrr! I journal our foods, especially on rough days/nights and haven't quite figured it out? Milk I am certain! I thought (think) egg as well. Sigh I am just tired and am on edge. Miss my husband and am still pissed at my life. Just want relief, a full nights sleep would be nice. Any suggestions? Am going to Pedi on Friday to get results from delayed gastric emptying - which I am certain came back negative .. .like all other tests we've done. At this point I feel like I'll have better luck emailing Dr Oz (Oprah). Just don't want to be sleep deprived any more and want help, peace, support.
Mar 05, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
I don't have time at the moment to read your full post,(sorry, due for surgery in few hours) but I think often, would Meggy have done better early on if we had gotten her to John Hopkins in Maryland sooner.

They could not figure anything out locally and she would end up in the hospital time and again. Since going there and starting a special Medical food for Meggy, we have not had any major hospitalizations. Mostly testing.

For us, it took taking Meggy to a different hospital where they are trained differently. They were thinking outside the box and were able to give new perspective.

I don't know if your insurance allows it, but have you considered one of the major hospitals? Have you considered getting a new team of docs? It wasn't easy for us traveling out of state all those times for Meggy, but it was worth it.

Mar 05, 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
Sweetie, my heart just goes out to you every time you come back to post. I am soo sorry. ((HUGS))

I would second going out of network for a LONG workup. that fresh set of eyes can give soooo many answers. Alot of times Drs are looking for horses when they should be looking for the zebras. KWIM

Just to let you know the DGE scans are pretty unreliable. they give false results quite often. Would you be willing to go through Manometry testing???? They would have to stick a tube down his nose for it....and it wouldn't be that much fun. But, it would completely rule in or out DGE for sure!!!! That is the most reliable test for motility issues.

And ya know, it would never hurt to send off an e-mail to Dr Oz. I would, maybe you'll get called back.

And you're right 20mg is very low for a child is age and size. I am sooo sorry the GI will not work with you better. That says volumes about his care of his patients.

Mar 05, 2009
ilovemykristof
Oh, honey, you have been through the ringer. I wish I lived near you, I'd be happy to babysit. I know the feeling of being on the edge and just wanting your child to be normal. You are doing all you can to have him tested so it sounds like you just seriously need a break. Is there anyone that can babysit for a day, even a few hours?
Mar 05, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I agree with the other replies...I also wanted to say have you tried splitting his dose so he has some meds left in his system in the evening? I don't think that is going to solve your problems, I just think it might help a little.

Huge hugs to you and your lil fella :)

Mar 05, 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.
This was our problem too. When I stopped BFing, things improved slighly. I weaned her onto Rice milk. So when she cries, I would give her a sippy cup instaed of the boob. It took her 2-3 of protests and then she just accepted it and slept better...go figure!!!!

Taking Jazzy off all protein was the only way we saw any relief, not a good diet to be on but we are trying to find out why she can't tolerate it. Like you, I journaled everything, and never saw a pattern. Milk and soy of course were culprites, I suspected egg, but everything was neg for us too. Until I went drastic and cut out all protein, I never would have figured it out. How about talking to your Dr about going on Neocate jr. falvoured or juice and cutting out as much food as you can, just to see how he does?

My e-mail is bmcpower@videotron.ca if ever you need support or have any questions I can help with...Good luck!

Mar 05, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I am so sorry to hear that you and your little one are still struggling.

The idea above about switching to Neocate Jr. and weaning off the breast might help have more control over what he is consuming.

I also like the idea of splitting the dose. My daughter actually takes more medicine in the evening than the morning. She takes 15mg prevacid in morning and 30 mg in evening.

I wish you some peace.

Mar 05, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
HI, I feel for you so much! You sound so much like me when my son was 2.5. He's 6 now. I kept a food diary and was always trying to figure out what was bothering him. It all came down to the reflux. My son was on pepcid, zantac, prevacid, nexium. They all helped, but not completely. The Nexium was the best, but gave him side effects, messed up his poops and I think headaches, he would rub his head and turn monstrous, so now he is on Omeprazole 20mg twice a day, it seems to be working. Your son needs better coverage throughout the day, I think. Ask the GI doctor if there is a was to cover him more fully through all day and night. Maybe they can increase the Nexium or add zantac or pepcid at night. You need to be FIRM. INSIST on it! Call and say "My child is only good after his morning dose, then goes downhill, it seems like the medicine doesn't last long enough! Unfortunately you HAVE to be DR. MOM and make this better for your child. My son had his last two scopes because I kept insisting he was refluxing, but he had minimal damage, but the doctor went by what I described. Call again and insist he needs ALL DAY and ALL NIGHT coverage. When my son was 2.5 he was on Zantac 3 times a day to cover him. E-mail me anytime you need to talk. I know how frustrating this can be! 4pas@sbcglobal.net Debbie
Mar 05, 2009
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
Tears ran down my eyes as I read your post. I am so sorry you're going through such a hard time. I just wanted to send you huge hugs and thoughts and prayes that you would find answers and your son would have reflief soon.
Mar 05, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
My other thought is, if you think milk bothers him, then restrict it completely, otherwise you will never be able to tell if the reflux medicine is working. There are other things to eat without dairy in them. I could give you suggestions if you'd like. Debbie
Mar 05, 2009
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
Thank you all.. . this is the ONE and ONLY place I feel understood and supported. Oh how I would love support... don't get it as often as needed (once every other month when we go to nana's. I have been thinking more and more that maybe it is my milk ! ? My husband and I had talked about that quite often. Yes, I know I NEED to just cut him off. Wouldn't that be something if he just got better?! What a super nice thought. We were on 10mg in am and pm.. but that wasn't long before GI told us it is better to have it in am because of pumps or something like that? Go figure nexium is the ONLY med not covered under our status card - $150 / month, so in my demanding of increase that would be $300 / month. Sigh... Thank you for your support. I take a deep breathe always after posting and reading my responses. My poor older son (16) has suffered my crap throughout all this and is taking it's toll on him as well. He misses him mom, the one he used to have ... to himself for so many years. Well let you know what Dr say's tom... our pedi, he is awesome.. I only wish I had GI like him. Shanks:)
Mar 05, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
If you don't get anywhere with the GI, ask the Pediatrician to help you? Worth a try. Anyways, if the Nexium is so expensive, why not go to the Generic Omeprazole, real cheap, and do it 20mg twice a day, which is the proper dosage according to Marci Kids-check their website. You can try it yourself by using OTC Prilosec...but good to check with the GI. I thought my breastmilk bothered my son for a while and weaned him at 16months, turns out he was intolerant to soy as well as milk, so I weaned him for nothing. Are you having ANY dairy? If not, then it is doubtful it is your milk. It is very rare for a baby to be so severely intolerant to lactose, but they can test for it with an endoscopy, I think. I'm so sorry you are alone with all this. Try one thing at a time. Make sure he is totally off dairy and you are, then see how the Nexium is working. If it still is not then beg the GI again for better coverage or try taking all soy out of his diet, which is usually the next one they suggest before eggs. Good luck, Debbie
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