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Jun 15, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Jeddsmommy
Hi! I checked out Jedd's Carebridge site last night. I didn't realize the fluids were a huge issue for you too. I finally have gotten Ryan to take some water and juice out of a cup (that happened about 3 weeks ago) but milk or formula is a no go. He spits it out. I am sure it is an adversion from all the months of pain. I use to be able to get the formula in him while he slept but as of Wednesday he has shut me down on that too. The Gi says I need to get 20 oz of milk in him, 4 oz of juice and another 12 oz of water in him a day. Why not tell me to hike up kilimanjaro with my arms and legs tied together. That might be easier. Do you have any great tricks up your sleeve that you can share with me? Ryan is 13 months old.
Jun 15, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
hahhahaahhaa...i love the mountain reference!!! Four ounces of juice I can do...but 20 oz of formula is soooooo not happening for us right now...I'm around 12...Z has no problem with water, luckily...drinks from a water bottle or cup...preferably a water bottle so he can tell if you're trying to sneak anything in!! We also do ice cubes in the mesh feeder which Z LOVES!! That's 1/2 oz water for each cube...popscicles?? Sorry I hijacked your thread, but I thought I might help!
Jun 15, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Can I tell you how grateful I am that you guys are here? Thank goodness I stumbled upon this site. No one gets it like you guys do. I don't even talk to my family about it anymore If they ask I say he is doing great because they think it am nutts and it is my issue not his. We had been doing really well for about 6 weeks. Sneaking the formula in while he was sleeping but I was OK with that since he was drinking water and juice and eating well during the day. Once he shut me down on the sleep feedings last week I got stressed out again. Funny how quickly those feeling return. This boy of mine better grow up to be a brain surgeon some day because he is going to owe me big time. : )
Jun 15, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I'm jealous you can still do sleep feeds...Z sleeps like a log, but will not sleep feed anymore...those were great for a while! And, yes, we totally understand...:(
Jun 15, 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
Can you try a syringe?? I kid you not, that's how Jedd first started to take formula orally. from a small 1cc sryinge. I would give him like .3cc at a time and we slowly built him up to a full 1cc syringe at a time. Once he would take 10 oneCC syringes at a time we moved to a 10cc syringe.

After all that we moved to a Sally Beauty Hair Supply color application bottle. It was cut down and retro fitted with with ice cube maker tubing for a straw. We were able to squeeze it to get him to swallow.

He completely did NOT trust a bottle and by the age we started oral feeds he was too old for one anyways. We have also completely just about skipped the sippy cup stage as well...LOL He know drinks from that same cup minus the straw. He has learned to lift it up and suck out of the hole in the top. He will also drink out of an open cup. We use a clean left over glass baby food jar for that. It's small and just the right size for his hands to learn to coordinate. Esp. since self feeding skills is such a HUGE issue for him.

I think the first step would be to call you local elementary school district, even now that school is over. Talk to them and find out who you need to call to get Early Intervention involved.

They will come out to your house and do a full eval for free!!! Once it is determined that your LO qualifies for a service they will set up a schedule to come out weekly (maybe less, maybe more dependent upon % of delay) to do therapy in your home.

Be prepared for a long haul. This may look like a quick process but Jedd started therapy just after his first birthday. He's now over 2.5 years old. We have been at it for a long time. He also got Private ST before he got his G tube for about 6 months as well. So, we have pretty much done feeding therapy since Jedd was about.....3/4 months old.

I really can't say enough GOOD things about early intervention. They have been awesome!!!! I'd get them involved ASAP

Also, what state do you live in?? From there I can recommend where/what local places you might be within driving distance to go to for intense therapy.

We have seen 2 feeding clinics. We have seen one locally and exhausted ALL of their resources. We are now being seen on an outpatient basis at Richmond's Children's Hosp. in VA. We have had success there except for the nutritionist, we butted heads HORRIBLY!!! LOL

I hope this helped some. Let us know if you have any other questions. I have actually learned alot from anther web site as well that has lots and lots of tube feeders on it. We're ALL in the same boat, trying to get our kids OFF the tube and to accept food ORALLY for the first time in their life. LOTS of suggestions from them.

But that 1cc syringe, that was born out of one desperate Momma who just wanted her kid to take something, anything orally and she didn't CARE who it happen. I have suggested that trick to at least 2 other people and they have had success with it.

Jun 15, 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
FWIW here is Jedd's feeding schedule to compare the amounts he takes in with what your DR wants you to get it...LOL

7:00 meds and around 3 oz water

8:00 4oz food and 4.5 oz fortified milk

10:00 3oz Danimal liquid yogurt

11:00 2.5-3oz water

12:00 4oz food and 4.5oz fortified milk

3:00ish 4.5-5oz water

5:00 4oz food and 4.5oz fortified water

7:30ish 6oz fortified milk

We do sit down as a family to eat dinner at 4:30 (early I know, there's a reason). That way Jedd can try to eat the foods we eat for dinner. If he doesn't eat enough, I feed him something at his dinnertime at 5:00. If he does then I just give him his milk at 5:00 when he's done. Works great. He actually does sometimes eat enough of our real food to NOT need the kind he will take really well.

Jun 15, 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
OH OH thought of something else!! LOL
I also can't say enough about oral stimulating toys. Jedd loves some of the stuff early intervention bought him. His favorite was a vibrating elephant. They also bought us a vibrating frog. He would walk around the house, chewing on them while they vibrated. He also had a vibrating corn cob, you can find that one at Babies R Us. Walmart also has a vibrating star teether that's good. I *think* the vibrating eleaphant and frog have been discontinued for some reason. :-(

We also got them to buy us a really expensive tool called a Z-Vibe. That thing is worth it's weight in GOLD. For a while Jedd would only eat off of the spoon attachment while it vibrated. If you google Z-Vibe you will find it. I'll add the link to the co. they bought all t his stuff from.

Oral stim, is a vital part in getting orally averse kids to accept liquids and textures. I cannot express that enough.

https://ssl202.chi.us.securedata.net/~arktherapeutic/index.htm

Jun 15, 2009
mommato3
I just wanted to say that Holden just got a new feeding therapist through our early intervention. We had to wait a long time for her as she is no joke the best in town and we live in a big town. Holden's nutritionist had some pull with her I think. Anyway, she told me the EXACT same thing Jessica said. She is ordering Holden a Z-vibe. She told me the thing about feeding him with the vibrating spoon attachment. She told me to go to Babies R Us and get the vibrating toys Jessica was talking about. She is also going to train Holden to drink out of a straw bear cup. Evidently it is a cup shaped like a bear with a straw at the top. You squeeze it into their mouth and as they swallow it it causes them to suck through the straw until eventually they've learned to drink from the straw. The thing is that when she is training kids to use the cup she DOESN'T use anything they are averse too. She said she will prob. use watered down applesauce or sweet potatoes with Holden since he likes them. It sounds like it is a long process but one that works. She is bringing us the cup this Thursday so I will let you know. Also she gave us this maroon spoon to feed Holden with. It is a special spoon you order but it is very flat (doesn't have a dip in it like most spoons) so they don't have to work or put the spoon very far back in their mouths to get the food off. It is great for these kids who have sensory issues. It is the only spoon that Holden will even attempt to eat off of without gagging. It truly is amazing how much better his gag is when using this spoon. She also has us using distraction and having things in his hand while he eats even if it is just me rubbing his hand. There is a lot of evidence that ties the palm of their hand to their suck (stimulation of their hand is tied to the mouth).
Jun 16, 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
mommto3
From someone who has touched both the Honey Bear Straw Cup (that's it's official name..LOL) and has used the retro fitted cup tha twe use. HANDS DOWN, go buy one of those hair color applications bottles, I promise you won't regret it at all.

The Honey Bear cup is made of thicker plastic. So, in order to suck out of it, the child has to such HARDER. For a kid with feeding issues, that's not ideal.

Also, you have to squeeze REALLY hard to get any liquid to go up it. That plastic is really thick.

The plastic of the Hair Color Application bottle is extremely thin. So thin, that when I bleach it and use hot coffee maker water, it makes the botttle completely pliable. I mean, I can literally collapse the bottle in my hand, even though it's very hot and burns me hands. That plastic is super super thin.

The thinness is a GOOD thing because it allows a child with a super WEAK suck to be rewarded easily. All it takes is a little tiny suck and the fluid will flow up the straw.

That was NOT the case with our Honey Bear Straw Cup. I'll go search for a link to the color application bottle I'm talking about. It's not just us that uses it either. The feeding clinic in Richmond uses is AND if you go to KKI's feeding clinic in Baltimore (BEST in the world at feeding issues) they use it as well.

We have learned that that bottle is the preferred item to use for children with very weak sucking ability.

Jun 16, 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
Let me try a stock picture of it from thier website
http://i268.photobucket.com/albums/jj22/mom2jedd/Random/sallybeautybottle.jpg
Jun 16, 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
trying again.....LOL
Sally Beauty hair c9olor application bottle
Jun 16, 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
Here's the link to their site:

http://www.sallybeauty.com/Applicator-Bottle/SBS-198060,default,pd.html

All we did was cut down the point and then use the ice cube maker tubing that we bought from Lowes are Home Depot for the straw.

Here is Jedd at Christmas using it WITH the straw. Like I said earlier, we don't use the straw anymore. Trying to transition his liquid drinking to something more ago appropriate right not.

Photobucket

Jun 16, 2009
mommato3
That is too cool! We will try the straw bear first and do it her way and if it isn't working I will suggest this to her and even show her the pics. That is awesome. Holden does have a weak suck from his low muscle tone and recessed jaw and his aversions don't help. I am excited though that basically you said the same things our feeding specialist said. Our last one was not very good so we are excited about all the things she is ordering to work withhim on (especially the z-vibe). It is wonderful that early intervention will pay for this stuff. She even told me she would have ordered me a tucker sling through early intervention. They are also ordering me this special high chair that has a lot of support. I looked it up online and it is like a $213 highchair. Woohoo Early intervention. Thanks for going to all the trouble to post those links and pictures Jessica!! I'm very excited now. I hope you can get Ryan in for his feeding aversion.
Jun 16, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Wow! Awesome information Jessica! Thank you so much. This had to had taken you forever. I have been working with Early Intervention. I called them about 4 months later than I should have. I waited till we were out of the pits of darkness. Could have used them when things were really bad. None the less I called and they did a lot of evals. He scored really well for speach, physical, and oral motor skills by the OT. The nutritionist was pretty pleased with his finger food intake. A couple hundred more calories and we are right were we need to be. She sent me some recipies for high calorie food. Happy to pass on the attachment to anyone that wants it. Were we call significantly short is on the fluids. He is only getting about half of what he needs. She recommended letting him put stickers on his cup or letting him pick up his cup. He is only one so he could care less about that. I am going to give your sqeeze bottle thing a try. Makes a ton of sense to me. She also recommended giving him 1 once of water out of dixie cup at each diaper change. At daycare they are required to change them every 2 hours so that would get quite a bit in him. It wouldnt hurt to ask them if they are willing to do this. I dont know why they would say no. Thanks also for the info on the zvibe. I googled it and found the Beyond Play website. Lots of cool stuff out there to check out. I am going to give the OT a call to see if she has any of this stuff in stock. On to another question.... I have the most problems with morning feedings. He always looks green in the gills in the morning and is soooo gaggy. Never pukes but looks like he wants to. About 45 minutes after he gets some cereal in him he is good to go. I assume that is a reflux thing?? Is it becaues I give him formula at 10 at night? Am I doing more harm than good doing that? I read somewhere that should not give any milk at bedtime because of the high acidity but if I dont then he will really be short. Maybe I should just give water??? Thoughts? I do split his Prevacid between morning and night. Oh and one more question... I did break down and got him the Baby Calm Magnesium suppliment for his constipation. Do I need to keep that 2 hours away from Prevacid like you do with Milk of Mag and Maylox?? All this timing stuff is driving me batty.
Jun 16, 2009
mommato3
Holden is most gaggy, etc. on his morning bottle too. I've always wondered why. I split his Prevacid as well and I think we take the same dose. Did you just notice this with your Prevacid increase or has he always been this way. I'm sorry your therapist wasn't more of a help. You're right, stickers on a cup don't cut it!
Jun 16, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
He has always been a little this way but it seems much worse now. I wonder if I should give one and a half in the morning and just a half at night. Seems like I should do opposite though. Anyone have any answers???
Jun 16, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
ps. He has drank a total of 6 oz today. Ok with food. I am totally on the verge of screaming but really trying to keep it together as I know that will not help and will freak my 5 yr old out. She is so in tune with things. When she was done eating supper tonight to wanted to show me how much she ate and drank. I hadnt said a word about Ryan's not drinking. She can just sense it in me now. That is not good.
Jun 16, 2009
mommato3
I wish I had some answers about the Prevacid. I don't know but I feel like his worse feedings (gaggy, no appetite) are right after I give him his dose of Prevacid. Now without it he screams bloody murder and we've tried a low dose, moderate dose and now this dose and he seems to have the most relief on this dose but I too have noticed his AM feed to be more gaggy. I know what you mean about your 5 year old. My 5 year old prays at night "Please don't let my baby brother gag and reflux." I don't even talk to him about it but of course he hears my husband and I talk about it. My little girl that just turned 3 in May talks about gagging all the time too. It is quite sad. I'm sorry you're having a bad day. It is such a rollercoaster ride. Why don't you repost a new thread about morning feed being worse and any ideas for splitting Prevacid dose around.
Jun 16, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Great idea on the repost. Will do. Lets see what they come up with for us
Check with your
doctor first!