Posted By Posting
Feb 17, 2009
jean9
the jessicas & erica
Thanks for replying so much and soon! I check often--you're like a lifeline right now!!

answers & ?s again....

in our county in NY we have been evaluated for in-home EI and she won't qualify. I think she needs therapy at home in her highchair, dining room, with everyday family choas around her. It seems unrealistic in a quiet therapy room in a clinic somewhere. yes? no?

you all mention a behavioral approach to 'retrain'--- do you give any feedback to your kiddos? positive or negative verbal reinforcement? one therapist advised us not to. Just be neutral present food at scheduled times- NOTHING to eat in between-- limit mealtimes to 30 minutes, remove food if being played with and not eaten, remove from highchair if clearly "All done", solids offered before liquids, etc... agree? disagree with any of this?

what about binkis? should they be forbidden in the highchair? sometimes it's all that will calm libby down enough to attempt to eat, but then she'll want it back again... maybe it's just to avoid eating...

generally she'll go in highchair willingly, sometimes ask to eat or drink! but then after she's had her few swallows and met her "quota" she's done. she will accept nothing from a spoon/fork/our hands if we try to give it to her. she turns her head away and says no. she has to have that control, but still limits her intake.

is it wrong to keep offering many different foods until she decides to eat something? it's hard to know how much is behavioral--"how far can I push mommy this time?"--- and does she really not want to waffles, pancake, eggs, peanut butter, crackers, apple, or cheese for a "good" reason (something physical)--but then she'll agree to swallow a few banana pieces!

you all say be sure there's no pain and that i'd know if there was. so I'm assuming there isn't. she cries and complains (saying "all done")in the highchair, but i think it's more to get out. If she's held and fed a bottle she may refuse at the start or just take her "quota" of 2 oz. and again "all done." sometimes she'll finish a 4-5oz. bottle if falling asleep. No signs of pain I guess. There could be 'discomfort reflux' and not pain though right?

we're gonna ask for barium swallow test. not sure about others...impedance, manometry--will they be worth it

...how do you rule out metabolic issues? what testing for that? is that and brain MRI "standard testing procedures?"

right now, i'm worried about her wight loss continuing, but more so about g-tube feeding setting us back. I mean, she asks to eat, actually does eat and drink independently---even though too little, and is generally happy/healthy otherwise. tube feeding could change that for the worse... probably not the better, right? But are we setting her up for brain dev. delays if we wait... how long??? UGH!!!!!!!!!!! THANk YOU over and over!!!!!

Feb 17, 2009
jordyn'smom
Erica
Jordyn 11/30/04 DX GERD at 1month old
I can remember times when I felt exactly as you do right now. > > > With Jordyn we did alot of play therapy with eating. She had meal time toys or activities that she only got at meal times. Don't take your Lo's favorite toy away and only give it at meal times but find something new and exciting. Keep a full box of only at meal times things. Jordyn started out with a new pack of colored pencils and a tablet of paper because she liked to color. At first after every bite she would get to color a bit with only one color and got to choose a new color after every bite. One of the keys with her was to make sure we ended on a positive note so if we were nearing the end of the meal we no longer pushed the next bite. Then gradually the reward came later and later. > > > > > > IMO there are alot of reasons to have profesional supervison when doing this tho. We were given a good idea of volume that she could handle. We were given a list of different textured foods to try with every meal i.e. crunchy, soft, liquids, meltables. We kept a very strict food journal so that the nutritionist could check calorie intake. They checked for oral motor problems. Jordyn actually had a birthmark (strawberry) in her mouth that could have attributed to the problems but when evaluated by the speach pathologist was found not to. We also videotaped 3 good and 3 bad mealtimes a week and took them with us so they could give suggestions on how to improve. > > > > > > As for the binki Jordyn didn't use one in the begining at all. As the feeding problems got worse she used hers more perhaps simce the swallowing helped with the reflux just as hard candy can without adding volume to her bellie. > > > > > If you are worried about how far she thinks she can push mommy have you tried letting others feed at meal times. Sometimes kiddos can actually develop an aversion to a person that they have associated to the pain. Even if the pain is under control now she may still associate you with the pain. (I know that is the absolute worse thing in the world to hear I was told this myself but it may be part of your answer) > > > > > > > Another thing to concider is the volume thing I mentioned in the begining. When feeding therapy began to help with J she eventually and still does at this point push her limits at times. We have to know what volume she can take in and limit her to that. Just like with tube feeding some kiddos cannot handle a few bolous' a day and need a slow continuous drip to avoid vomiting up the entire feed. J still cant handle more than about 3/4 cups at a time and any more than that causes pain and or vomiting. > > > > > One more thing have you ever looked at her groath chart? Is she growing at a steady pace just below average. Is there any way to compare her groath chart with yours as a baby or your husbands. Although alot of our kiddos are below average for weight they have gained on a scale of their own so to say. I know a 2nd grade child at this point who never had reflux and currently only weighs 38lbs and she has never been concidered FTT and That is less than my now 4y/o weighs. I hope I was able to answer some of your questions and I really hope you can find some prfessional guidance with the feeding issues. It was alot of travel and time and money but well worth every bit for us.
Feb 17, 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

Well, I will go ahead and tell you that the other Jessica,lol, has much more experience with feeding aversion than I, as mine does not eat by mouth anymore. When mine was in therapy before, we were encouraged to praise him for eating, but we did not use negative verbal reinforcement if he did not. There was no time limit, play with food was even encouraged, because that is all part of the process of feeling comfortable with food. We didnt choose betweeen solids/liquids because we were happy to get him to take what he would, he was in severe pain.Also, before Brent had all these more complex issues, he qualified for EI as well, with no delays only reflux and feeding aversion.

Has she been evaluated for Sensory Processing Disorder? An OT can do this(and it isnt as scary as it may sound)One of the issues is extremely picky eating, and many refux kiddos have SPD for some reason. Brent was dx at just under a year, he had other sensory things going on besides eating as well, and had intense therapy for SPD. Working on other sensory issues can often even improve eating, just a thought

http://www.spdfoundation.net/library/checklist.html

She could be having some discomfort sometimes, of course. Brent literally screamed nonstop all day and night, and clung to me, it was so so sad that he hurt so bad.

I think some degree of metabolic testing is pretty standard for FTT. Basically, its bloodwork. As far as the mri, it seems to be done frequently as a precaution, things like chiari malformation and things of that naute cause feeding problems. All dr's dont do it, but many do, I know our GI was sending Brent to a neuro for consult and MRI of his brain, for the vomiting and refusing to eat before we found out what was actually going on, because it can be a sign of a problem with the brain, usually isnt, but it never hurts to be safe.

I think the impedence probe may really be worth it to see if she actually really is having bad non acid reflux, because even if it isnt burning, it can be uncomfortable and mess with her appetite, KWIM. The manometry, I wouldnt do unless she is exhibiting some real signs of a motility disorder which so far I dont see,but say if she does an impedence probe, and it comes back really bad, then I would look into it. That is my opinion on it. As far as the swallow test, sometimes kids wont want to eat because they have trouble swallowing, so that is always a good precaution to take, although kids with this problem usually choke,cough,may get aspiration pneumonias etc.. when they eat

When you have feeding aversion, and failure to thrive, many things have to be taken into consideration, not just GI.

I think if she is happy and healthy, and not suffering serious effect from it right now, you have some time to play with in terms of looking into a new therapist, possible different meds, probe. Before she starts having delay and such, it will begin affecting her health, so you will know

Feb 17, 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
The point that Erica made about associating eating with prior pain is right on, this is a VERY VERY COMMON PROBLEM, and takes time and therapy to work through. Sometimes in a severe situation there is just so much anxiety about eating because the child remembers it used to hurt some and is afraid it will again, a dr will put a child on a low dose of antidepressant called amitriptyline, and it makes a big difference in some kids.
Feb 17, 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

http://www.spdfoundation.net/library/checklist.html

one more sensory issue link, a better one.

Feb 17, 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
This is gonna be LONG...LOL
I am soo surprised the won't do OT for feeding with you. Jedd gets EI soley for OT for feeding issues. I wonder if there is a budget shortage in your area so they have tightend who they give EI services to. I was told originally that it would be a 3-5 month wait for ST services. I quickly complained and told them the LAW that services were to start IN my home with in 30 days of qualifying. I quickly got an ST in my home to do the therapy. You can look up Wright's Law for EI and special ed. laws.

Here is what we do with Jedd. We place him in the high chair. I, not him, help him chew on his tri chewy tube for about 5 mins. He has learned that I am in control of his feeding sessions not him. I need to make sure he uses his back teeth to chew on that tube.

He then goes to spoon feeds. Either some thing I made or stage 2 in a jar. I spoon it again. I present the loaded spoon in front of his mouth and tell him firmly, "Jedd bites the spoon" He opens his mouth and takes the bite. Some times he will shake his head or yell no (very rarely will I get he NO's anymore). I persits in telling him Jedd bites the spoon in order to get him to open up.

If he just will not open, I tell him if you don't bite the spoon I will turn off the TV. He sooo doesn't want the TV off because we have done all his training in front of it per the clincis advice. He normally caves. If he is being a stinker it will get bad enough that I turn the TV off. I will not turn the TV back on until he takes a bit or two.

Jedd drinks from a Sally Beauty Supply Hair Application bottle that has been retrofitted with a tubing for a straw.

After he eats all of his food we go to liquids. I hold the straw bottle in front and again say, Jedd drinks from the straw. And he drinks from the straw.

I do food and let him take his own drinks for about 15 mins. After those 15 mins. I present the straw bottle again, and tell him, Mommy squeezes, Jedd swallows.

Now all of that will take me a total of around 20 mins. He eats 4oz of food and drinks about 4.5oz of fortified milk. That is pretty much the max we can get him to eat without a puke. It took forever to get the time that short.

We did for a long time, and still do, offer him solids several times per day. He really doesn't eat them but we offer them. Before he eats lunch I'll offer his something like Ritz crakers, graham crakers ect....and give him about 10 mins to try and eat it. He plays around and does eat some of it.

Before he eats dinner we sit down as a family and he gets offered a little bit of what ever we are eating for dinner. This is done in the kitchen without the TV.

We don't offer him anything "hard" like raw foods, or cherrios. They do NOT go over well, he chokes on them. We try to offer him foods that will "scatter" in his mouth well upon getting in there. Even at dinner time I try to make sure I watch him carefully. He chokes easiely.

The hard thing about doing it at home is being consitent. You can't cave.....one time of caving can take weeks to undo. That's where the clinic has the advantage they WON'T cave.....LOL That really is the key. NOT reacting to there "antics" to try and take attention away from YOUR goal. They don't want to eat so anything to get that accomplished a child will do.

Here are some things Jedd has done to avoid eating in the high chair.......pretends to fall asleep complete with fake snoring...plays with the straps on the chair, I removed them....demands all sorts of toys off the ground...demands a cookie or other food...wants the TV channel changed to something else.....purposefully gags and vomits......throws head around, turns around in the chair....tries to climb out, stands up...screams yells and kicks at anything...I could go on.

When he was hitting and gagging on purpose, I used to tell him sternly NO NO We don't do that!!!! and then go back to feeding him. I also learned to hold on to the spoon very tightly and onto the bowl/jar very tightly. He can bat it out of my hand very well.

As far as wanting the pacifier I am betting this has become one of the things used to distract you from your goal...getting in a feed. I mean, how can she eat when the pacifier is in her mouth..??? See what I mean.

I also think that offering her all sorts of foods until she will eat will only contribute to those eating issues as well. She gets to delay eating for an amount of time and that is reinforcing those bad behaviours. With Jedd what I offer him is what he is gonna eat. No choices. He has developed NO preferences because of this (unlike a child at his age) but a great side to this is that he will eat ANYTHING put in front of him as long as I follow our protocol. He takes meds like a champ as well. Because he has learned he does NOT have a choice.

It a matter of breaking THEIR will but not their spirit. You want to be in control. It is my personal belief that this will also boad well for what will come in the future too. You want the child to do what they are told. It is the eternal struggle of all parents. It just so happens that ours extends beyond the playground to the highchair.

I will stress that I would make sure that ALL medical issues are resolved first before doing this. The hard thing about your DD will be you do not have a tube to fall back on. If you don't get it in she has to go without. That puts an enormous amount of pressure on you which will only transfer over to her.

For that reason alone, I'd look for a clinic. That can take an enormous amount of pressure OFF of you. Yes it will be done outside your home but VERY few children will comply while at the clinic and then completely back track once home.

The clinic will completely take over feeds at first and have you watch through a closed circuit TV system. Then they will slowly introduce you into the room You will not say anything and all you will do is sit and watch.

This is done so that you can learn IN the room what to do and so that the child learns that you are OK with what is going on.

The next step will be that you will take over the protocal with the ST in the room. Then eventually the ST/OT will sit outside the room and watch and be able to coach you through that closed circiut system. All this is done over a long period of time. It helps to ensure that you will be successful once you get home.

I did ask at Richmond about Jedd reverting back to his old self once we got home. They told me that is EVERY parents fear. They told us that yes you will have a few rocky days but as long as you stick to the protocol set up the child will quickly learn there is not backing down and will cave and follow suit. They do also coach over the phone if you have any questions aget you get home. So they don't just cut you loose so to speak.

As far as getting a G it will set you back I'm fairly certain of this. It set us back. We NEVER got back to full NG amount feeds after getting a G. He had to lower the rate at night and his boluses volumes during the day went down. We neded the G though. We could NOT continue with an NG and get Jedd oral, it wouldn't have happend.

An Impendance is a good choice to add to that MBSS. It will let you know how under control the GERD really is. As far as metabolics, we haven't dealt with that. Sorry.

As far as feeing an independant feeding not sure how a clinic would do that. I am sure that what we do would be modified. But I do know that at her age they would go all the way back tp ourees off of a spoon first and progress from there. They will probably need to do what we do and not let her feed at all. Just to take some of the control out of her hands.

let us know if you have any other questions. I hope this helped some.

Feb 18, 2009
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.

Jean, we have recently been giving Katie pureeded fruits mixed wtih juice to make a "smoothie" or I will mix pureed meat with broth and let Katie drink it out of the bowl. It's not a lot but if I do it every 5 minutes or so it adds up to 80 caloires every hour or so.

Will she eat if not in her highchair? Can you let her eat when and where she wants? We too at one point were considering tube feeding since Katie went for the longest time with only eating to take the immediate hunger away. She will still go through periods where a few swallows of formula is all she wants. Our feeding therapist told us it will be a long road since she had/has reflux. Katie also has SPD (jessica gave you a link) and she will not eat foods of certain textures, temperatures or if they feel different to her. Because of this we have become inventive of what to feed a toddler without bottom molars!

Check with your
doctor first!