Posted By Posting
Aug 16, 2011
momof2boys
Suspected Silent Refluxer refusing all bottle feeds.
Hi! I'm new here but I'm at a complete loss and looking for any help/advice for my 7 month old. He was born full term with a vaginal delivery. From the first night in the hospital we have had giant, projectile vomits. The vomiting has slowed over time but it is still an issue at least once a week. He does also gag himself if he has medicine that he decides he doesn't want to take. Everything in his tummy will come up. He started on Zantac at 2 weeks, changed to prevacid solutabs at 4 weeks, and on to Prilosec from 3.5 months until the present. He used to take bottles with some work while awake...anywhere from 3 to 6 oz, 6 to 7 times per day. He has had a swallow study but not an upper GI b/c he refused to take a bottle unless we were holding him and rocking and bouncing, etc. There was on way he was going to be strapped to a table and take the barium! Now we are down to 12 to 15 oz per day. He will only take it sleeping and he absolutely goes nuts if we attempt it while awake. Arches the back, screams, cries, etc. The weird thing is he takes solids pretty well...some days I can even get in a 4th jar if I split it between his other 3 meals. The normal pattern for our day is up at 7, dose of prilosec, no hunger cues or desire to eat until about 8 (when he gets a jar of fruit)...sleep feed him between 9 and 9:30....he wakes up almost right after that feeding and continues to play. At around 11:15/11:30 he shows signs of hunger. He used to take 3 to 4 oz and then the jar of food but now it's reversed as he has to be sleep fed. Again he used to eat another bottle at around 3:30 but he flips now and only takes it half the time. Final feeding is usually 6 pm for solids and sleep feeding the bottle of 4.5 oz or so. I have taken him to the ER twice for dehydration and no one seems that concerned. Also have had him to a GI specialist and we have concentrated his bottles for more calories per ounce but we haven't gotten too far with them and I am unsatisfied with the "progress". He had a feeding eval at 4 months and she basically told us he was too young to do anything with. He's going back to the feeding therapist in a week and a half but I'm at a loss. I have changed bottles, I have tried sippies, syringes, spoons, straws, cups...how do I get this baby to take liquids! He is a happy kid (thank God) and he is still gaining weight, sleeps pretty well, but the bottles are makign us all insane. A lot of times he wants nothing near his mouth at all. My poor 4 year old is stuck in the house constantly! Please help!
Aug 17, 2011
dcd
What dose of Prilosec is he on?
Aug 17, 2011
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
IMHO he is not too young to work with in the area of feeding aversion. Even if they were not feeding him at 4 months old there are still MANY feeding exercises you can do!!!

Are those services being provided by Early Intervention?

I preferred an O.T. for feeding therapy. Everyone is different though. Just make sure whoever comes out fits in with you and has ALOT of experience with kids with oral feeding aversions.

Do you have a children's hospital near you? Most of them have a department for rehabilitation, and that would include a feeding therapy team most of the time.

At 7 months it may be time to ditch the bottles, since that is NOT going well anyways, and more to a sippy or an open cup full time. We used a retro fitted Sally Beauty Supply Hair Color Application Bottle. It was retro fitted and cut down and we first used fish tank tubing as the "straw". This will reward a really weak suck and if they don't suck you can squeeze it very gently and liquid will flow up.

Will he take water? You can always start with that until he is comfortable with whichever type of cup you use and then move to formula.

Aug 18, 2011
momof2boys
He's on 3ml 2 times per day. Also I did try to get him to move to a sippy cup and he's not interested at all. Anything that gets near his mouth he freaks out about. He will clamp his mouth shut suuuuper tight. He will be going to a Children's hospital clinic that has speech therapists and OT.
Aug 19, 2011
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
as i read your post was thinking you could try to thicken his bottles because i see he takes jar food. Does he pool milk around his mouth or choke on bottles? they find a way to tell you what is safe for them by rejecting bottles.
Aug 19, 2011
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
Agree with jedds mommy that he is not too young for therapy. We had some luck with nuk brushes to avoid oral aversion and there is a "honey bear" cup that OTs use
Aug 19, 2011
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
Can you move away from the compounded prilosec and move to a Prevacaid solutab? They will work much better. We used a compound of prilosec only because we had to. Nothing else would fit down Jedd's feeding tube and NOTHING would go down the hatch at all, ever for a long time.

What children's hosp. are you using? they are not all created equal in the GI feeding dept.

I personally do not like the honey bear cups. We have one and you really have to suck hard to get any fluid to go up, and you have to squeeze really hard to get fluid to flow up without a suck.

I know of 3 feeding clinics as well are E.I. here in VA who use that bottle I mentioned. I guarded it with my life as that was the only bottle/cup/ that Jedd would drink out of for about 2 years.

What about things that vibrate, would he like to chew on those types of things at all?

that was the ticket with Jedd. We bought lots and lots of vibrating tools to use with him during therapy so we could make his muscles stronger. That in turn allowed us through E.I. to have a tool called a Z-Vibe (google it). It has a spoon attachment and his desire to have a vibrating tool in his mouth overrode his great dislike of food. As long as I was feeding him off the spoon attachment, he was happy. It took alot of work to get him there....but we got there.

What does his weight %tiles look like? Are they holding strong on his own curve.

I'm asking because they will only let you lose weight for soo long with out looking at intense therapy or a tube. That all depends on %tiles and how fast a child is losing weight though.

If the child is gaining on their curve, even if it's a low curve, then they will be happy to wait longer.

The difference between what I was able to do with Jedd and what you will be able to do, is Jedd had a tube, I had the luxury of taking my time...years to be exact. You won't have that luxury.

That's why when they said he was too young....he is not....it only gets harder the older they get.

The clinic you are going back to, are they the same ones that said he was too young to work with at 4 months? That would make me super nervous.....

Feel free to post lots more questions and I can help as much as I can.

Aug 20, 2011
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
here are two websites i have had luck with in the past- dysphagiaplus.com (they have the z-vibe) and especialneeds.com(they have one way straws which i have used and are nice because the liquid stays in the straw after they take their mouth off) was thinking after jedds mommy posted the honey bear is a little hard to use. >p> another cup we used was the nosey cup but not good for travel
Aug 20, 2011
momof2boys
I will check out those sites! Thanks! We are working with All Children's hospital in St. Petersburg, FL...although I am not satisfied I do not know what else to do. I attempted to get him in to the University of Michigan and was given the run around...they told me I wouldn't follow up b/c we live out of state. Which I could easily have stayed in MI because my entire family lives there. I did at least get a referral to a GI in Orlando and we are attempting to set up an appointment with them but as you guys probably know it's so hard to get an appointment within a reasonable amount of time. My regular pediatrician is also trying to help get me in faster. I did try a thickened feed again yesterday and it wasn't rejected but it seemed like he had a harder time with it...almost like he was taking it too fast or something b/c of the Y shaped nipple. He is still gaining weight which is why I think the doctors are reluctant to do something more with us. He's so happy I think they write us off...which of course isn't good enough for us so we're trying to get him in wherever we can. I think the therapist saw him and thought he still takes some bottle so it's not terrible but at least when I contacted her again this time she did try to set something up right away again. With the prilosec my thoughts were to change back to the Prevacid solutab b/c from what I read prilosec compounded tends to lose it's effectiveness and also the babies need to have empty stomachs so I'm unsure how effective the dose he gets at night is. My pediatrician did call in the prevacid again last night and we're starting it tomorrow. She also suggested I try Nutramigin (sp?) but I'm worried with the taste he won't take it and then be even worse on the bottles and not take them at all. argh! I'm just so frustrated and no one I know has ever encountered this and no one really gets it until they've dealt with it first hand. I'd love to pass him off for 24 hours to the dr. and then have the dr. say that he's just fine! I see no sense of urgency from anyone but his regular ped and she's trying her best to get him into a specialist b/c she has never seen a case like this either.
Aug 20, 2011
momof2boys
Jedd's mom...which cup did you gaurd with your life?
Aug 20, 2011
momof2boys
Guard that is...
Aug 20, 2011
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
Soo glad you have a GOOD ped on your side, that will take you a long ways!!!

If you can do Michigan, can you do something closer like Richmond Children's Hosp? They have a feeding program. Also, in Ohio, at Nationwide Children's....they have a program as well. When we were seen there it was just a day program being used for short term finish off tube weaning....they are an AWESOME hospital though!!!

there is also KKI in Baltimore, Maryland too, they are THE best at what they do, they see patients from around the world. They are GREAT to say the least.

I don't think he is going to take the Nutram. From what I've heard it smells and taste horrible.

Aug 20, 2011
momof2boys
I might be able to do VA or OH...I think right now I will see what they do for him next Monday. If they decide to be aggressive and actually do what I think should/needs to be done then I will stay here but if they give me the run around again I'm done. I was reading your blog about Jedd and it said he had a heart defect as well and was sweaty as could be while eating...Jack is also super sweaty. I did have a nurse suggest we see a cardiologist as well just to rule that out...apparently that was probably a good idea huh? I agree with the Nutrimagin...heard it's terrible.
Aug 20, 2011
bellymom
Isabella 10/04 Severe reflux, nissen fundo, g-tube, mito disease, epilepsy, DGE, asthma, aspiration, allergic to milk and soy
I see that you are changing back to prevacid-it must be given minium 30 mins prior to meal to get the most but u could switch to zegrid or use buffer babies from what i got from other mommies. Maybe DCD will chime in because she is doing that but we are on prevacid and have been for 6 1/2 yrs. We were gonna switch to zegrid but i have been giving bell her prevacid and then her reglan and then a bolus 30 min later so far so good.
Aug 20, 2011
momof2boys
Yes I have read that it needs to be given on an empty stomach...luckily Jack won't eat until he's been up about an hour! I am hoping it will work better than the prilosec. BTW I really appreciate all of the help and input I have gotten from you guys. This is such a tough thing to try to manage and I know no one that has even come close to dealing with this level of reflux...thank you thank you!!! :)
Aug 20, 2011
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
Yes it could be a good idea to see a cardiologist to rule that out as well.

Jedd's was first heard as a heart murmur at his 6 week check up. He was actually 40 days old I think....he had major eating issues from birth. As in, taking about 10-15 ounces per day and dropping as low as 9 ounces in a 24 hour period.

By the time we were begging for a tube at 7.5-8 weeks old, his normal was around 10 ounces a day if I pushed really really hard. He would scream, by that time he had soo little food in his tummy, he didn't need to scream from GERD pain.

As soon as we had the tube in, it was right back to screaming like from when he was a newborn. :-(

That all said, Jedd is a really really *really* sweaty kid now. We are told that since his ECHOs and EKGs are normal since he's been repaired, that it's because he is VERY well hydrated, which he is.

We think he's just going to be a sweaty type of person and he is already wearing deodorant because he gets stinky. LOL

Right now would be a good time to contact Richmond Children's Hosp in VA. They try to do the school age tube weaning kids in the summer time between school breaks. So the fall it is easier to get non school age kids in. We were slotted for Fall but ended up being able to tube wean fully at home with the help of E.I.

You can contact me at my email if you would like the contact info for either Nationwide Child. in Columbus Ohio or Richmond Child. in VA. Just let me know.

onion95@gmail.com

Check with your
doctor first!