Feeling sad and hopeless

[Anonymous]

Hi!

My name is Zoey. My son was dx with “colic” at 6 weeks, then reflux at 4 months. At 6 weeks our pedi rec Alimentum and we have been using it ever since. At 4 months Owen was place on Zantac. It would work for a bit and then I’d have to go back – this happened until he was 6m3w months and he maxxed out on it. He is now 7m and last week was taken off the Zantac and placed on Prevacid. I am a nurse and have done some research on reflux and asked the pedi if it was Ok to keep him on the Zantac, while the Prevacid ‘kicked in’ – explaining I understood you couldn’t give them at the same time but could give them atleast 4 hours apart. She told me this wasn’t safe and wouldn’t write a new script for the Zantac. She told me to put some cereal in his bottle, I did and for three days it seemed to help the spitting, but now we are back to full spitting again. His weight gain has slowed. 8 pounds at birth, was gaining fast – stalled out at 19 pounds at 5 months and is 7m1w now and 20 pounds.

Needless to say, it was a rough week I used Mylanta and all it did was give him loose poo. I feel like an awful Mum for not pushing harder to get both. Anyhow, he seems like he is feeling better. He is teething top teeth now and so he is miserable again. It seems he can’t catch a break from pain between the two and I am just so beside myself about it.

He has a horrid time drinking his bottle. I am not sure if it is the Sandifers Symdrome or not. I feel like I don’t know anything anymore. For hmm… 2.5 months ALWAYS he will drink the first few ounces of formula ok and then he starts arching his back, tilting his neck WAAY back, moving his arms up and down, kicking his legs, squirming and wiggling. I have to stop feeding him. I place him on the floor proped on the boppy and he will finish the rest without issue for the most part. Recently he wants nothing to do with his bottles and he has gone from 4, 8oz to 4, 5-6oz – and it is a struggle. He is taking 3-4T of solids twice a day, without any problem at all. I am at a loss regarding his bottles, I know hie nourishment needs to come from his formula until he is 12m, but I can’t force him to drink. I don’t know what to do, I thought this was going to improve with the Prevacid.

He is constantly spitting up. Sometimes he will spit up food from 3 hours before. He never could do alot of tummy time, so I feel he won’t crawl and now he can’t sit up because when he does, he spits up. God, I am just so at a loss here.

He is on Prevacid 15mg packet once a day. I really don’t know what I am supposed to do – my pedi seems fairly knowledable regarding reflux – but this last episode with no Zantac has me a bit put off.

Can some one please help me, help my son?

Thanks for reading this and TIA for any advice – hugs.
Zoey

[Anonymous]

Hi Zoey, we went through similar problems, what it turned out to be was dd reacting to the milk proteins that built up in her system after being on alimentum for a few months. We did a switch to neocate and upped her prevacid and everything got alot better. Does he also have alot of gas and stomach discomfort? DD would spit up hours after because she just couldn’t digest the formula anymore. We also had to administer her prevacid (capsules) in a bit of applesauce because the packets and solutabs upset her stomach too.

We also used the zantac with the prevacid spaced 4 hours apart until the prevacid fully kicked in around the 12 th day. There is research at marci’s kids. I would print off old posts and the research and take it to your doc. Or… find a gi doc from this sight, one that another mom can reccommed who is more updated on gerd. Do you have any zantac left so you can make sure he is at least getting some relief?

Also, when they start associating the bottle with pain, you have new issues to deal with before they turn into an oral aversion. When that started happening, we went and got evaluate by a speech pathologist and started feeding therapy. Lots of info on that from past post too. Good luck! I hope he feels better soon!

[Anonymous]

is he in pain when he spits up…those meds dont stop spit up, they just stop it from being acidic.

also, i am sorry that your ped didnt give you more zantac. i know many
people on here used both zantac and prevacid while they waited for it
to kick in and it was perfectly safe.

also, is that dose of prevacid working for you? have you checked the dosing calculator on marci-kids.com?

maybe you should try to find a different gi, or show your doc the info
off of marci-kids.com. i know many moms on here had to fax the info to
their doctors.

good luck

[hellbennt]

Zoey,

I’m sorry you’re feeling sad & hopeless!

it DOES get better! and, you’ve been a terrific advocate for your baby & now that you’ve found this site, you’ll have more information to help him!

please please find the time to read through/bookmark/return to this: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am p;PN=1&TPN=1

I would first investigate the formula and, at the same time, investigate the dose of PPI that he’s on…as the pp (previous posters) have mentiopned it might not be a high enough dose…

so glad you found us!

~laura

[Anonymous]

Hi Zoey~

First off, its great that you found this site! It has so much useful information on it and great parents that have been my support net! Laura’s intro has tons of great information in it…I have it saved to my favorites and go back and read different parts of it all the time.

From things I have read on here and on marci-kids.com (great resource for refluxers), its best that the PPI is split into 3 doses per day. I would read on the marci-kids site to see if your son is on the adequate dose for his weight and age. If you have trouble, there are email addresses listed on the site that will help you figure it out. If you have any trouble finding them, message me, and I will get them for you. You may also want to look at his formula and make sure its the best for him…is he showing any signs of an allergen in his system….Laura’s intro has a link for Milk/soy Protein Intolerances MSPI also…this could be causing him not to eat his bottle?

I hope he gets better soon! Good luck with everything!

[Anonymous]

Hello and welcome,

First I want to say that I am sorry things are so hard right now. I’ve had two babies with reflux so I certainly know how difficult it is to see your baby hurting and to have to struggle and fight to get the right treatment. My second refluxer made a complete turnaround once he was placed on the correct dose of Prevacid. So there is hope that things will get better soon.

Please visit http://www.marci-kids.com and print the information and share it with your son’s doctor. If she won’t prescribe a higher dose of Prevacid for him, you may have to find another doctor for him. 15 mg is more than likely not going to be enough. It took me six weeks to convince Myles’ doctor to raise his dose but it was well worth the effort!

I wouldn’t be too concerned about his intake as long as his rate of growth stays within the normal range. My son’s intake was only 15-18 ounces per day for several months and his growth was fine. (I used to joke that he had the metabolism of a marshmallow!). The important thing about his feedings is that he is not in pain when he is eating and that he is not learning to associate the bottle and/or eating with pain. From your description it seems he is experiencing pain with eating and this has to treated so that he does not develop a serious and long lasting feeding aversion. For some reason our doctors don’t seem to consider this and generally are only concerned with weight.

Many people here have used Zantac for the two weeks it takes for the Prevacid to kick in. Other wise the poor baby is basically untreated for two weeks and the pain gets worse.

Hang in there and keep fighting for proper treatment for your little guy!

[Anonymous]

ryannsmamma…..how did you know it was the proteins in the Alimentum? Was your baby spitting up, or just refusing the bottle? Luke has been on Alimentum for 4 mos. and he drinks 3-4 oz and then turns his head away and won’t finish anymore unless he sleepy. However, he has absolutely no problems eating solids. Any input would be greatly appreciated.

[Anonymous]

mom4lovejoys,

we had the same prob with the alimentum as ryannsmamma. i could tell
the proteins built up after a month when he started getting fussy and
crying all day again and had mucous in the stools. now we switched to
neocate and he is so much better.

[Anonymous]

Sounds exactly like what Jason would do. I was at my wits end and after 1 week of prevacid 15mg once a day, I called my ped crying and he told me I could increase to twice a day…That was the greatest phone call I ever made!!! Took about another 2 days of giving the twice a day dosing (in the meantime we used lots of mylanta cherry supreme) and it was like a miracle, Jason was a new baby!! I do have to say though that he was still spitting up/vomiting, but I could tell it wasnt as painful, he would just puke, then start giggling. We finally put it together that he cannot tolerate the milk proteins. We did allergy testing (blood) which came up neg for milk, but as soon as I switched him to soy, the vomiting stopped almost immediately, and he sarted to have formed stools for the first time in his life!

My ped gi feels that Jason’s reflux was just a symptom of his milk intolerance, and once we stopped all dairy and his esophagus had a chance to heal (he had bad esophagitis) we should be able to wean him off the meds, but I am not so brave. I am enjoying my quiet, peaceful full nights of sleep!!! I do have to say though, that we are back down to just once a day and Jason is almost 2. Hang in there, it will get easier!!!!

[Anonymous]

Hi Zoey! I knew that the milk proteins were becoming a problem because of her increased stomach discomfort. We are talking about typical milk intolerance issues: major painful gas and bloating, mucousy stools – basically diaherra all the time, increassed spitting up-like the whole bottle (she had silent reflux beforethis). I swear I would literally push on her stomach about 30-45 mins after she ate to get the gas to come out- her belly button was popping out from it! Also, some babies develop allergic reactions such as excema, Ryann had a little on her face, eye areas when she was really young.

I though she was soy intolerent too… but at one year we did a very gradual switch over a 14 day period and the gas and poop issues went away. Finally she can tolerate something!

Alot of babies go through that aversion of the bottle because they associate it with pain. Maybe you can get some more info from past posts. I know some of us are in feeding therapy because of oral aversions. This disease is so difficult for everyone! Please email me if you have any questions about mspi or anything. Also, I have some extra neocate I can send you that another mom from this site from my area gave to me. Not using it anymore and it is just sitting here. Let me know! Sarah

[Anonymous]

Zoey,

I am new here as well, so I can’t really offer any advice at this point as Emma is just finishing her first week of Prevacid. So I can only offer moral support. You are definitely not alone. His symptoms sound so much like Emma – and a lot of other babies on here!

I wonder if Emma has Sandifer’s syndrome as well as she has a lot of those symptoms sometimes. It’s a very scary and frustating thing to watch your baby be in so much pain and feel so helpless. Feeding should be a happy time, not a nightmare!

Hang in there. I have found a lot of comfort in this forum just reading everyone’s posts and knowing that I’m not alone. Hopefully someday I will have something good to contribute! There are many smart women on here with lots of great ideas!!!

Good luck to you!

Jen

[Anonymous]

Hello, I know exactly how your feel, I have definitely been there. Do you think if you gave him more Prevacid and it helped him if she would give you more? At 20 pounds 15mg might not do a thing even if you wait 2 weeks. He should be on 30mg. Like my GI doc told me if you are not giving them the proper dosage its like giving them water, it won’t do a thing. Oh was that true. Once Emma was on the proper dosage she was better within a week and we haven’t had a problem since. The symptoms he has definitely sounds like he is hurting. How are his BM’s?? Once I got Emma on Alimentum her BM were fine and she stopped vomiting and we didn’t have a problem with the proteins building up in her system but if he is having diarrhea or mucous I would think about switching formula’s. His weight seems fine and so does his intake. Emma didn’t weigh 20 pounds until she was a year old and now she is around 23lbs at 17 months. She never lost weight so we didn’t have to worry. If you can get that much formula down him you are doing really good. Is there another doc you can see??

I understand on the spitting up. I thought Emma would never learn anything b/c all she did was cry and spit up. She hated tummy time. The spitting up will eventually get better. Emma couldn’t handle cereal or oatmeal so I didn’t thicken her formula and decided since there was nothing I could do about it we would just deal with it. I never dressed her in the house and I always had something underneath her if she was on the floor. She just spit up 30-40times a day until she was around 9 months old and then she just quit. I put Emma on her stomach every day, even if it was for 30 seconds and eventually she was fine but it does take time and they will do things on there own cause believe me I was worried for a long time that she would never do anything. She finally started liking tummy time at around nine months and crawled 10 months and walked at 13 months

[Anonymous]

The same thing happened with Myles. He hated tummy time and was way behind with his gross motor development. I was worried, but as soon as he stopped throwing up (at 9 months) he just flourished! He began rolling around the floor, then started crawling at 10 months and is now pulling to stand at 11 months.

[Anonymous]

I’m so glad you found us! Some thoughts that I had reading your post that haven’t been addressed yet:

Are you seeing a pediatric gastroenterologist, or ped gi, or just your pediatrician? If it’s a pediatrician, you might start asking about how to get in with a specialist. Sometimes it takes months to get in with one and it’s good just to get an appt. on the books. Also, some ped gis are more knowledgeable about reflux than regular peds, since it’s their specialty.

Christine’s comment about printing out the info from MARCI kids website is true. I emailed the MARCI kids folks with my story, and Dr. Phillips, the pharmacist who developed a drug called Zegerid, emailed me back personally, with his dosing recommendations, etc. Then I printed all of that out, took it to my ped (we were inbetween ped gis) and the ped actually was the one to prescribe the medication and the dosing from Dr. Phillips recommendation. Dr. Phillips also likes the 2-3X daily dosings….the babies are so small they metabolize the meds so fast that it’s out of their systems in a short amt of time.

Also, I can relate with the spitting up and tummy time. My son was out of control with spitting up, and did it regularly until 11-12 months. He hated tummy time, crawled at 10 months, walked at 14.5 months. He’s none the worse for it and running all over the place now.

Here’s a link to good info on food intolerances. The other moms are right about how you don’t have to have a formal “allergy” in order to have major problems from the proteins in milk and other foods.

http://72.14.203.104/search?q=cache:z7C1J8hLZY0J:www.disa.co m.au/Food%2520Intolerant%2520and%2520Allergic2520Baby.htm+fo od+intolerant+allergic+baby+disa+au&hl=en&lr=&st rip=0

Best of luck!

[Anonymous]

Thank you all so very much. I saw my pedi again, she increased his prevacid 15mg to twice a day and gave us a referral to see a GI – our appt is 9-5. It took alot of convincing and sharing the info from Dr Phillips and Marci-kids. She seemed to think because my son isn’t incredibly thin that it “must not be so bad” Anyhow, thank you all very much for your support and advice. Illlet you know how our appt goes.

Zoey

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