Feeling like i am so helpless:(

[Anonymous]

Good afternoon everyone.

We are new here and i am so glad i found this forum.

I am not sure even where to begin. Ryder will be 4 months on Sat and was diagnosed with reflux at 7 days old. It has been a roller coaster since then. Started on Zantac which didnt work. Then we switched him to Alimentum as my daughter was anaphlactic to milk and soy so i figured it would happen with him as we’ll. That went well for awhile and in that time they put him on losec. We went with that for 2 weeks and all he did was scream. Same for liquid prevacid. Then we switched from Alimentum to neocate which say an instant decrease in diarrhoea . We then moved onto Nexium at a dose of 10mg morning and night. Saw a difference for abit and then nothing again. Peadiatrician finally sent him for an upper GI as he lost 10ounces in 8 days. All that was seen was severe reflux and then a month later i get a call stating he looks like he has a twisted lower intestine going into his bowel. Still waiting for that appt on the 25th. They then switched him to prevacid fast tabs at 30mg a day. Seemed to once again work for a bit and then stops. Although he also was miserable due to no sleep and it definitely surpresses his appetite. He has never eaten more than 4ounces at a time. and for the last week i am lucky if i get 10-15 into him. Its 4.30 here and he has had 7 ounces today. Yesterday he got no meds as the pharmacy messed up on bring the prevacid in and he was a happy baby who slept most of the night. Ate great yesterday and then today i gave him Nexium as thats all i had and we are back at square one. I know prevacid can surpress there appitite so should i try and go back to Nexium?

Oh dear lord i have no clue what to do anymore and a paediatrician that i can maybe see once a month if i am lucky and no one who will send him to a GI. So basicially i am figuring it out on his own.

Oh and basically he is losing weight again.

He is 4 months and 11lbs 6 ounces:(

Sorry if none of that made a whole lot of sense and horrific spelling…Its been a long day with a screaming little guy:(

Lisa

[hellbennt]

try the nexium again- maybe in three doses- how are you giving it? does it come in a packet? or does the pharmacy make it into a liquid? stay away from the pharmacy compounding it….until you read how to Tell them how to do it exactly the way you say but even then…anyway:

iwhen things are terrible give some zantac too spaced from the PPI (nexium, etc)

check dosing- try 3 times a day and zantac ‘as needed’

read all you can!

Zantac dosing- my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

I’m always running out the door!

best EXPLANATION OF FOOD ALLERGIES/INTOLERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

[Anonymous]

Yes, you made sense. 🙂 I feel the cry of your tired mother heart! (HUG) I’ve been there too!

It is a hopeless feeling but with the Internet you have a ton of help and understanding mothers all over the place. 🙂 I did not have Internet when my boys suffered so badly and I often felt very alone and at my wits end.

It is late and I should be in bed because soon one of my children might wake up and need me for something and then I won’t get any or very little time in my own bed. 🙁 Nothing unusual this winter with the cold hanging around our house. 🙁

Anyway, for now I will just recommend that you take the time to look at my blog. I really do believe that you will find some interesting and hopefully useful and helpful information on there.

Hang in there!

[hellbennt]

Please update us!

your information helps others!!!

we love to help!!!

(also I’m clearing out inactive accounts )

[Anonymous]

Sorry it has been crazy with a move etc going on.

We saw the surgeon and he does have a malrotation of his lower intestine. It does need to be repaired but his main concern was the 37.5mg of prevacid he was on at 4 months old and only weighing 12 pounds.And the fact that it was not controlling the reflux. When he hit exactly 4 months he peaked and wow was that not fun for 2 weeks. Nothing worked and he basically ate 10ounces a day and screamed. And just like it came in it went out. He is now 5months and i can say i see the light at the end of the tunnel. We see the GI tuesday and i see a reduction in meds coming. He has definitely gotten better in the last 2 weeks. Eats more than he ever has. Is happy and starting to sleep better. That and his meds used to wear off about an hour or so before the next dose and its no longer happening. Are we out of the woods yet. No i am not that delusional BUT i see the light.

[hellbennt]

thanks for the update! please post your dr (s) & comment/review –

it’s sooo hard for people to find good drs!! thanks!

[hellbennt]

phew! I’ve gone through some of the spam!!!

thanks for the update! please post your dr (s) & comment/review –

it’s sooo hard for people to find good drs!! thanks!

[hellbennt]

bump

[hellbennt]

hello?

update?

thanks

[Author]

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