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Sep 14, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
Stopped eating orally
Kailey has G-tube and nissen placed about 5 month ago for severe reflux. I regret getting nissen done after reading some stories now but Kailey had to be on bi-pap for 20 hours a day then, and we were unable to feed her with bi-pap on, so I think we didn't have a choice. Kailey was still very aggressive eater with tube. We weaned her from bi-pap to 15 hours soon enough and with more feeding opportunites, Kailey finished her bottle pretty well. ( but only took 2oz at a time). About three month ago. She just stopped eating one day and no matter how hard I tried, I could not get her eat. And when she got sick couple weeks after, She stopped sucking on paci also. Feeding therapist comes three times a week through Early Intervention, but all the therapist does is to desensitize by sticking this little stick thing in her mouth. He does that for thirty minutes. He has been coming over a month now but she still gags a lot during therapy and he says that's the only thing he can do for now. We are on the process of getting new therapist. Kailey used to take some baby food also but all she takes now is formula thru G-tube. Kailey likes to chew her toys a lot though. So should I try to give her some solid like piece of fruit? But what if she chokes on it? Is only formula at her age enough? Also, I would love to take her to some type of feeding clinic since the early intervention therapist is not satisfying. Kailey needs to be on bi-pap most of day so it is hard to travel far with her. Does anyone know great clinic in NY? I live in Flushing NY, So Manhattan, Queens or Long Island area would be best for us. Thank you all.
Sep 14, 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
Boy do I have lots to say....but I'm getting ready to make dinner in a couple minutes.

First off, has she ever aspirated when swallowing?? That would be a huge factor is getting over prior to getting oral.

Also, how far are you from KKI's clinic in Baltimore Maryland?? They are by far the BEST clinic for orally averse kids/ 100% tube fed kids.

I'll log on later to give more info. Jedd went from all tubed to all oral here within the last 2 years of therapy through early intervention. It has been amazing to see, but, it has also been the hardest thing we have ever done. Period, hands down. It's not fun, it is WORK.

I'd see if the therapist can buy you a tool called a Z Vibe. If you google it you will see it and find out what it does.

Also, are you sure all the pain and everything medical that could be going wrong are completely under control now?? A child who has pain from GERD or other medical issues that are not resolved, will not eat well orally after being tubed.

Be back later.

Sep 14, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
Well, Kailey has never aspirated so far. She chews on nipples of pedialite bottle sometimes and rarely she takes her med orally but keeps in her mouth for long period of time and it looks she does not know how to swallow. KKI's clinic will be too far for us. And even Hershey's. Kailey is on oxygen nasal cannula all the time and She has to be back on Bi-pap at least every three hours. It is really hard to have her on bi-pap while driving so I am looking for stricly in NY area. As far as her medical condition goes, her mito test is still undergoing and she is on multiple supplements(CO Q10,L-Catntine, creatine and etc). There is nothing else can be done at this time, but on last visit with mito specailist, Kailey's condition seemed stable. She is reaponding pretty well from PT and OT for her contracted muscle and her breathing issues are slowly getting better. Kailey can have all sort of pains from her mito disorder, but she seems pretty happy and not irritable throughout the day when not sick. I am checking Z-vibe right now. thanks!!
Sep 14, 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
I know lots of kids who need the tube long term and maybe that will be the case since you have other medical issues going on. As far as cliinics in your area, I don't t hink there are any there. Most parents end up traveling to get seen at a clinic. We traveled 2.5 hours away to see the one we went to. We also are fortunate enough to have one in out city that was pretty decent.

The reason I mentioned KKI is because they are a multi-disciplinary clinic. They take everything into account when it comes to feeding issues.

With Jedd, he too seemed to have NO suck whatsoever. His oral feeds honestly started with a desperate Mom (Me) who decided, He's orally averse to everything, every type of bottle and every type of sippy and the spoon. So, I decided to try a syringe loaded with formula..

We are talking a 1cc syringe though. And I would only give him small small amounts at a time, about .2 to .4 CCs at a time. As he did better, we were able to increase it to a full cc at a time and eventually we moved to 10cc syringes.

Once he could take a few ounce with the 10ccs we moved to a Sally Beauty Supply Hair Color Application Bottle. It was cut down and retro fitted with fish tank tubing for the straw.

We eventually used ice cube maker tubing, it was stronger and he had been shredding the fish tank tubing to pieces...LOL

This is the bottle that just about all of the feeding clinics on the East coast use with their feeding aversion kids. It allows the parents and therapist to squeeze up the fluid a tiny bit at time.

It is also VERY thin (the plastic) so it will reward a VERY weak suck.

We have done a full tube wean at home and it is very very stressful. Life will end up revolving around oral feeds. It was and still is the hardest thing we have ever done. There were times when I could not leave the house for days. His feeds were soo close together, that a car trip would have caused him to vomit.

We started slowly with that bottle. He would take like 1 ounce, so I would wait one hour and give him one more ounce. After a bit, we pushed him to 2 oz and went to 2 hour feeds....we continued until we jumped to 4oz at a time and eventually landed at around 9-10oz at a meal 3 times a day.

This is his current feeding schedule and I know the major clinics like to see 3 meals and 2 snacks per day. You also have to build in hydration (water) times as well. It can be tough.

7:00 4oz water and meds.

8:00 breakfast (4oz of applesauce or yogurt) and 5oz fortified milk.

10:00 3oz of danimals yogurt or V8 Frusion juice.

11:00 3oz water

12:00 he has moved to solids here, but we try to get in at least 4oz of it and he gets 5oz fortified milk.

3:00 4.5oz V8 Frusion juice and meds. (we used to do water here but now do the juice as Jedd will not take any veggies. This is to supplement that.)

4:30ish Dinner he will eat whatever we do or I make sure I make something I know he will eat. Again, we try to get in about 4oz and then he drinks 5oz of fortified milk.

7:30ish 6oz fortified milk.

He also snacks on "normal" snack stuff throughout the day. If he asks for food, I give it to him.

Now, I know this looks daunting, but, we have worked with EI with our OT for just under 2 years to make this kind of progress.

Also, I made Jedd all of Jedd's pureed foods when that was all he would take. That way, I could make them thin and then gradually over time, I made them thicker and thicker, until one day I tried a few of them in their original state. These taste sooo much better and a toddler KNOWS the difference between baby food and yummy pureed table foods.

This also enables you to "boost" anything that you give so you can get more pack for your punch. We used Olive oil and Flax seed oil, Sweetened Condensed Milk, Heavy whipping cream....all sorts of stuff. Oh and we used alot of Carnation Instant Breakfast (CIB). That's what we fortify his whole cow's milk with still to this day.

We used a Magic Bullet and here are some of the things we pureed for him to eat: Spaghetti O's, Van De'Camps Beenie Weenies, Spaghetti and Meatballs, Campbells Creamy Chicken Soup (that one is hard to find but it has high cals in it), Beef-a-roni, Easy Mac N Cheese, I used milk instead of water to make it......I could go on.

If you look at WalMart, almost all of these foods are sold in small 8oz cans, except the soup one. That way, once you puree them, they make two 4oz servings. I would put them in used clean glass baby food jars. I could also calculate how many cals were in each of them. I have impressed a few dieticians with that...LOL

Anyways, that's just a bit of what we did. Oh and we also used an Elephant and a Alligator Jiggler. You should be able to find that on line as well. Let me know if you want a link to that. It's a "toy" that is rubberized on the top in the shape of the animal. you can turn it on and the animal part vibrates. Jedd loved to walk around the house chewing that thing!!! LOL It was great.

The Z Vibe also has a spoon attachment, Jedd loved to eat off of that while it vibrated. He loved the vibrating sensation in his mouth. After a while, we were able to stop using the vibrating, and then eventually we moved to a regular hard spoon. The Z Vibe one is VERY VERY flexible and flat. Which is good for orally averse kids.

Sep 15, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Jessica gave you lots of good info but I wanted to tell you that I wouldn't worry about solids right now. Formula is absolutely enough nutrition. My almost 3 year old has been on a liquid diet of formula only more of his life then not and still drinks almost 16-20 oz. of formula a day. I hope you are able to find a great feeding clinic.
Sep 15, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I can't say that I know anything about mito. disorders or the respiratory issues that your daughter has, but I was wondering if there was any chance that she has been checked for EE? Typically, EE could be suspected if a child has reflux that does not respond to the standard meds (Prevacid, etc.), or has frequent choking & esp. seems "allergenic." It is important to know, however, that foods that trigger EE are not going to show up on standard allergy testing. In my thinking, it is more of an immune disorder with an allergy component. My son was diagnosed with reflux, food allergies, and feeding issues until close to age 2, when I finally insisted he be tested for EE. Also, my cousin has a 5 year old daughter with a chromosome disorder, who also happens to have EE. She has always been on an elemental formula (orally). This may not be an issue for your daughter (it's not that common), but I just wanted you to be aware of the disorder). El
Sep 15, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
Appreciate all the helpful messages!!! Thank you Jessica for your input all the time. I am gonna try them one by one. I feel relieved to hear just formula is enough for now and I will keep EE in mind for her next appointment. Thanks again!!!
Check with your
doctor first!