GOING CRAZY

[Anonymous]

My baby is 19months old. he was diagnosed with Acid Relux 2 weeks after birth, he has been on all kinds of Acid reflux Medicin. Now he is on Prevacid, we tought that he is doing better so his Sr. reduced the dosage to 1/2 a pcket a day. Lately I’m goping really crazy!!!

He wakes up 5-6 time at night asking for few sips of milk (cow-whole)sometimes crying and others just standing up in his crip. Eating is the time he hates the most HE JUST DOESN”T WANT TO EAT ANYMORE.

I put him in a daycare for a week now hoping to see a change but things are just getting worse. HIS WEIGHT GAINE IS 33%, WHICH IS MAKING ME WORRIED ALOT THAT THEY WOULD HAVE TO PUT HIM ON A FEEDING TUBE

I’m rreally confused, don’t know what to do, no one undrstand what I’m going throu…

Please tell me what to do.

Thanks,

Azar’s Mom

[Anonymous]

Hi and welcome,

When did Azar go off of formula onto Cow’s milk? Was he on a special formula before? Was he doing ok on Cow’s milk when you transitioned him?

If not the milk, then I suppose he’s just not ready for the med-wean yet . Sometimes we think they are doing so good and get our hopes up only to find they aren’t ready. Can you increase his dose again and see if he improves? If no improvement, I’d see if maybe the milk is bothering him too.

[Anonymous]

Hi there. I really feel for you. My daughter is 2.5 years old and still has reflux, so I know what it feels like to have an older child and be struggling with this still. I also know what it feels like to feel alone and to have no one that understands or can support you. Hopefully we can help. I have a few questions for you.

First, I think that Jill’s question about cow’s milk is a good one. If he’s always been on it without problem, then I’d also guess that it’s the meds.

When did he start the prevacid packets? Did he start with a whole packet? How much med is in a full packet- is it 15mg or 30mg… sorry for asking but we don’t get the packets in Canada.

About splitting packets- how are you doing it? It’s actually very hard to split packets, b/c it’s hard to ensure that you’re getting half the medicine beads in each dose. Also, you can’t split it after it’s been made, or you might not get the whole dose. I’ve heard of people using a strainer to separate the flavour from the beads (which is the medicine) and then dividing the beads in half, adding half the flavour, and THEN adding the water. The easier way is to get the solutabs instead of the packets. You can split the solutab in half and give it to your son. Probably even better is to get your doc to prescribe the full solutab, and then just give him the whole thing… or split it, and give half in the morning and half at night.

The other thing about the packets/solutabs is that they’re delayed release. This means that they need to be given on an empty stomach and then followed up with a meal 30 minutes later to activate the drug and have it work well. I’d try that first.

About the night waking- I’m wondering if he’s having painful reflux due to the reduced dose of meds, and waking asking for milk to soothe his throat. If you give his meds in the morning, can you try giving him something like OTC pepcid complete at night and see if that helps with his nightwaking? I’ve heard of quite a few moms having success with half to 3/4 of a tablet.

About the feeding, my guess is that he doesn’t want to eat b/c he’s having discomfort. Is this a new problem? What was his eating like in the past? If this is a longterm problem, you might want to look into feeding therapy. My dd had a feeding aversion from her reflux and it was terrible, but feeding therapy helped a lot. We were always also sitting on the verge of a feeding tube. I’m not sure what you mean by his weight being 33 percent, but if you mean that he’s at the 33rd percentile, then I’d really try not to worry as this is pretty good. What’s his height like? What they usually look at when considering the need for a tube is if the child is maintaining their own growth curve. Usually they have to drop a lot of percentiles, and have chronicly low food intake, i.e. too low to allow proper growth and development before going to the tube. Typically they get labelled Failure to Thrive, but not always. If you are worried about this, then I would talk to your doctor about your concerns and see what s/he suggests. Also, given that he has had reflux for quite a while, I would ask for a referral to a pediatric gastroenterologist if you haven’t already. If you tell us where you’re located, someone on this site might be able to suggest a good doctor. Also, sometimes there are things that they can add (powders/supplements etc) to help boost caloric and nutritional intake. I would ask your doc about getting help from a pediatric dietician (or any dietician). He’s at the age where he might take pediasure well.

Just one last thought, it sounds like he’s been on milk for a while, I’m wondering if he’s milk-soy protein intolerant (MSPI). Has he had any problems with rashes/excema/diarrhea/mucousy-poop (sorry so nasty)?

You might want to check out Laura’s intro stickied under the introduce yourself forum. It’s VERY long, but full of tons of great info.

Good luck. Hang in there. This is a great site. When no one understood, I came here and it really helped me through some dark times.

[Anonymous]

Thak you Jill and Lori for your replies. Sorry for my late reply ’cause I had a series of Doctors’ vitis to make.

I saw the feeding team today and we discuss all of the issues I told you about, and as Lori suggested, I did mention a feeding theray and they agreed about it, so we are to go for 4weeks.

for His medication he’s taking 1/2of 15mg packet and they suggest to go back to full packet until we see his GI next month.

jill, I used to give hive Similac Alimentum after trying all kind available but he wasn’t taking much anyways. I spped giving it to him at the age of 16months of age. but he was doing fine with cow milk. what I noticed is that when i went to Morocco for 3month this summer he like their milk better and he was having more volume.

I will kepp you posted on how things would go with the Feeding Clinic

Thanks again

Azar’s Mom

[Anonymous]

I really think that his dose is probably too low for his age and weight. You might want to consider going to a GI who believes in agressive dosing. Let us know if you need some recommendations for a doc. Which feeding clinic are you going to. If you feel he needs more time, make sure to push for it. 4 weeks is pretty short as far as a time frame to resolve feeding problems, unless it’s inpatient, but I assume that you’re talking about outpatient. How many times a week is he supposed to go. Just to put things in perspective, my daughter started feeding therapy at 8 months, and she didn’t graduate, still with issues, until 16 months. I hope that things go well for you. Make sure that you’re giving the packet as I explained above. Good luck .

[Anonymous]

Thank you Lori,

He is going for 4 weeks from 8:30 to 4:30 Mon – Fri as an outpatient and we will take it from there. I’m planning to see his Dr. to push the GI opt. date. I live in Pennsylvania, USA. and I’m seeing one of the best Docs in Town.

I wanted to aske you if you have a list of food that we should and shouln’t give to a baby with acid reflux ’cause I’m really confused with many suggestions around.

Thank you so much.

Have a great day.

Azar’s Mom

[Anonymous]

WHERE IN PA ARE YOU???? My dd goes to chop but we are very dissatisfied, we are tring to go to the hershey feeding center near penn state, who is your gi????

[Anonymous]

Hello Edismom,

Thank you for your reply.

I live in North Wales, Montgomery county. Our GI is Dr. Kelly at Chop.

Why are you dissatisfied. I really don’t know what to expect. It’s all new to me. were you an inpatient and how does it go?

Azar’s mom

[Anonymous]

Hello again…..so you are going to be an inpatient at Chop’s day program????

We are there for outpatient feeding clinic, they see us every 4 wks….

our gi is dr boyle at Chop….I am dissatisfied because my dd has dge and they have no plans as to how to fix it.

when do you start your day treatment at chop’s feeding clinic??

[Anonymous]

Actually, we are going to be an outpatient. going there from 8:30 to 4:30 (5 days a week). they said that the waiting list is full and if we want we’ll be listed for Feb., But they also said that they might have a cancellation for next week, if so they will have us in. we are going to wait for their call.!!!!

I’m really worried that things would not go as I’m hoping to. That is my last hope… I really can’t handel this anymore. I’m desperate for a miracle to happen.

I’m searching now online to see if there is anything that talk about the effect of cow milk on babies with GERD. any idea?

Thanks again

Azar’s Mom

[Anonymous]

How much does your son weigh??

was he diagnosed aas ftt??

Have you been to Chop’s feeding clinic before??

Does he eat any pureed foods?? What foods does he eat??

The level of prev sounds low to me..my dd is on nexium 40 mg a day, 20 in am 20 in pm

[Anonymous]

I live in Abington by the way…I also think you should look into hershey feeding clinic in hershey, pa…program modeled after kk feeding program just in case chop doesn’t work out for you.

[Anonymous]

we saw the feeding team yesterday and he was 25lbs 02oz with no clothes on. he did a milk scan at 6 months age, an upper Gi test later and an endoscopy at 14 months of age, he is now 21 months old.

He was on 15mg a day they we reduced it to 1/2 ( he was doing better) then to 1/4 of a packet a day. he was Ok for a while that i thought that the night mare is over!!! recently he started acting up again so I went back to 1/2 a packet a day without asking the doctor ( as I was overseas for a few months), but I started to notice that he is swallowing at making grimces after giving him milk beefore going to sleep and waking at nignt crying.

He east table food and he is exploring much of our food with few more spices than his. he eats vegies most of them, freuits. but he doesnt want Purred food anymore. he wants to feed himself, and when he does he eats a few bites and he starts crying to be taken away from the table or his highchair.

[Anonymous]

I want to tell you that when he cries at night he doesn’t want me or his daddy around when he sees us he accelerates and also when we try to get him out of the crib. But when we say that we are going out to the living room he calms down and he falls a sleep on the couch in the living room. I really don’t know if this behavior has sommeting to do with GERD

Thanks

[Anonymous]

WE WERE THERE downtown yesterday too around 1030:) must have missed you. my dd will not eat any table foods but she is only 9.5 only purees.

If you want to talk more my # is 215 782-8931, im about 25 min from you.

good luck

[Author]

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