Posted By Posting
Feb 18, 2009
jean9
opinions of Pittsburg versus Hershey, PA feeding clinics?
Hi again to all (especialy my recent 'advice angels' the 2 jessicas!)---

What have been your experiences/ opinions with Pittsburg, PAs amazingkids clinic? How about Hershey's at PennState?

I spoke to people from both places today... very helpful--just wondering how similiar/different they are in their approaches, expertise, etc...

Keith Williams from Hershey Med ctr. previously worked at kennedy-kreeger and left there to start up the Hershey Clinic--if that means anything to anyone forming an opinion...

He gave me the impression that the Pittsburg Clinic wasn't as good as his (go figure!) in terms of having a complete staff that includes a behavior analyst, etc.He also recommended his book (go figure-again!), "Treating eating Problems..." Any opinions of that book? Or any others worth looking into?

I'm experimenting with the positive reinf. thing a bit and Libby's actually responded by eating a bit more... am I 'playing with fire' since i'm not under "professional supervision?" I spoke again with the OT we were working with and she really doesn't believe in the pos. reinf. approach, so until I find someone local who does and we can afford... i'm giving it a shot...

now just wondering if the reults of more testing would change what we're doing anyway... How would impedance test results change our current approach? what about barium swallow study? Should we repeat g.emptying test? try Reglan again? what about the side effects?

I mean, do you ever wonder how accurate all these test results are???? Most are just a "snapshot" of a moment(s) out of so many that occur thorughout an antire day... Are these results true representations of what's really happening internally across hours, days, weeks, etc. in varying situations?

Just keep praying I guess...

Feb 18, 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'm getting ready to head to bed so I'll post longer tomorrow.

I will say that maybe you need to join P2P as well. There is a man named Dr Sean Casey who hops on the board quite often. He teaches at Penn State. He has worked in the field of Feeding issues and aversions for YEARS.

This would be a GREAT question to ask him as he seems to know EVERYONE in the aversion field and where they did residency and such....LOL

Feb 19, 2009
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Hi, I've been following your posts, and you've received wonderful help from the Jessicas :) I just wanted to jump in and tell you that, in my opinion, I don't think you are playing with fire by using positive reinforcement. We saw a behavioural psychologist when my daughter was in the throws of feeding aversion, and while I didn't always agree with their methods, I adapted them to what worked best for our family. Positive reinforcement is a concept that can be applied to every aspect of child-rearing, not just with meals, so I honestly feel you can't go wrong....especially if it worked...even for one meal. If you remain consistent, it will only help Libby until you can get the "professional supervision", kwim? I think that you are doing a great job by learning as much as you can about all of this before jumping to the tube. I understand how frustrating it can be. We have gotten Rory to the point that she eats pretty well, but she still has her funky days as do most toddlers. She is only 19lbs 14oz at 23 months, and we've just seen a half pound gain in the last 3 weeks, lol. It is very worrisome. At the same time, she is like your little one, or at least she was. She ate very very little, and her growth is horrid....but tube feeding has never ever been mentioned or considered as an option by anyone. Not that we need it, because she does eat now, but it was quite rough for a while. Hang in there, and good luck with whatever decision and route you take. ((HUGS))
Feb 19, 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'd stick with the positive reinforcement for a few days and see if you make progress. Jedd's OT only see shim once per week I do all the rest of the work unsupervised so you are doing what the rest of us do.

Asfar as tests being accurate it all depends on which one you are doing. A Gastric Emptying Scan is really NOT reliable. Most DR will try meds first and if they see an improvement they will assume the child has DEG and not even do that test.

A Manomoetry test is VERY VERY reliable. If you get one done I'd fully trust those results.

An Impendance probe is pretty reliable to because it tests for acidic and non acidic reflux episodes. But this to is also a snapshot in time. If you treat the child as normal as possible during the test the chance of getting an accurate result is greater. We let Jedd run all over and climb all over the room as much as was possible while he was hooked to that big machine.

As far as meds for DGE normally GIs will start with Erythromycin. Jedd was on that when he was itty bitty. All it did at that time was make him empty his bowels completely so we stopped. Then he went to Reglan.

Now let me tell you, Reglan worked wonders!!! That stuff was amazing. It drastically reduced his vomiting. BUT.....it turned him into an irritable monster!!! He screamed NON stop and when he wasn't screaming, he was sleeping. It was horrid. We lasted 16 weeks and then DX that drug.

We went back on the EES again and had some success this time, unlike when he was tiny. We stayed on that for a long time. NO side affects for us. We never got C-Diff from being on it. Jedd's dose was low enough to avoid that and high enough to work. We finally weaned form it to see how he would do. As long as I follow him meal schedule he is fine. So right now he is controlled completely by diet alone, no meds.

As far as which clinic is better. I have not heard of Amazing Kids. That doesn't mean they aren't good. You can call them or have them mail you some info and see how they seem. That way you can get a feel for them.

I know people who have gone to Hersheys completely tube fed and came out completely oral. From what I've heard they are pretty good.

Hope this helps some.

Feb 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
The Children's Institute feeding clinic in my opinion is one of the places we recieved the most help from with Jordyn. Even after she was discharged I still called the nutritionist regularly for help and she offered it. They try very hard to work hand in hand with the childs other current docs and when J's GI wasn't cooperative with that they recomended another GI.

I don't have anything bad to say about Hershey's GI group as we don't yet have any expirence with them. We start to see Dr.Doug Feild who I believe is head of Ped GI there in March so more info to come then.

This is another quote from Children's Institute's flyer that may be helpful to you. We used to go every week in the begining which was alot of travel. And they do also offer inpatitent where I believe the entire family can stay with the child but this might help if you would rather work at home more.

"The Children’s Institute offers consultative treatment for children with feeding challenges. Treatment is provided in collaboration with a therapist in the family’s area of residence. Children are typically seen by the Functional Feeding team on a monthly basis" Hope that helps.

Feb 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
One more thing. You are doing a wonderful job of seeking as much info as you can. Even trying suggestions. All of our kiddo's are different and we never know if what works for one will work for another but know that you are doing the best you possibly can by seeking info and looking for someone that will help your child. I think we have all struggled at some point with feeling we are not being heard by or LO's docs and the best any of us can do at that point is to be their biggest advocate and push for them to get what they need and clearly you are doing that.

(((((((((((((((BIG HUGGS))))))))))))))))))))))

Feb 19, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
Another thing. Childrens'institute does have a compleete staff. They aren't all always present but they were all there for our inital visit. After that they decide if they all need to be there. For instance if there aren't any problems with oral motor than there isn't a need for there to be a speach pathologist to be there every visit and if there arent problems with tactile problems then you may not see the ot every time. We allways had atleast 3 people at every visit tho including the Pediatrician and the dietitian.KNIM
Feb 19, 2009
jean9
thanks for replies...
any book suggestions? (As if there's time to actually read one?!!)

jedds mommy: what is EES and C-Diff? Forgive my GI and Email abbreviation ignorance!

one specialist suggested using a timer to decide when feed is done and not worry as much about volume taken in. any thoughts on that?

Right now I let Libby eat what she will on her own until she proclaims" all done"--then I begin pos.reinf. with toys (and turn taking with her twin since she will eat almost anything --and now she gets to play with a toy too---perhaps I'm creating bad habits for her twin, but I can't worry about that now...Libby's motivated to get the toy away from Avery(twin), so I'll use it while I can I guess.) Does this sound okay? I'm struggling with the drinking thing though... She drinks from a sippy cup, so I stick with that mealtimes, but offer a bottle (as falling asleep) to get the oz. in her. When she stops at a few oz. I'm tempted to try pos.reinf., but I'm often holding her and she's falling asleep. Know I'm breaking rules by holding her right? can't do pos. reinf. on Mommy's lap?!

Feb 19, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

I agree that you should check out the feeding aversion forum at p2p,

http://www.parent-2-parent.com/forum/forumdisplay.php?f=16

If you go to archives at the top of the forum, you will find a ton of information.

Feb 19, 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
C diff is a bacteria that can flourish in the GI tract when chhild is on an ABX long term. C Diff bascially causes really bad GI upset and distress. It can ge tsoo bad the child must be admitted.

In order to combat C Diff you can use a daily probiotic. Taht will help the GOOD bacteria to flourish. Basically the ABX can and will kill ALL the bacteria indescriminately not just the bad bacteria. So a probiotic will help to balance everhting out.

adding in a probiotic to a child with GERD can hlep in all sorts of ways too. Jedd uses a liquid one I bought at a local helath food store. It must be strored in the fridge. Most liquid probiotics will need to be in the fridge. I give him 10ccs of it a day.

EES is the DR term for Erythromycin. It's alot easier to type EES than it is erythromycin...LOL Sorry!!!!! Some like to type e-mycin in stead. Aslo easier...

Check with your
doctor first!