Tuesday, June 9, 2009

Feeding Issues

Not fun.

 

Nope, not at all. No laughs or giggles taking place here.

 

I’ve talked a little bit about Daniel’s eating issues.  I’ve started posts before then ended up deleting them because it always sounds like I am not grateful that he eats orally.  I am.  It is just stressful, for me and for Daniel.

 

Let me start from the beginning-

1. A child with spastic quad CP generally has issues with feeding. From what I have seem, most have feeding tubes.

2. A child with BPP (bilateral perisylvian polymicrogyria) most definitely has issues with swallowing.  Some more than others.

3. We have had a barium swallow test. Daniel freaked out during it, and aspirated on some thicker mashed potatoes.

4. Daniel chokes easily on thin liquids.  We must add Thick-It to his foods to make it the right consistency.

5.  Daniel is 95% bottle fed. He drink a special formula with extra calories in it.  He also uses Scandishakes to add additional calories, along with Duo-cal.

6. Daniel can eat baby foods “stage 1 and 2” only.  These also have to be thickened, and its hit or miss on how much actually stays in his mouth.

7. There is paralysis in his mouth/jaw and he does not have a strong enough chew/bite to actually chew foods.  He can eat things that melt quickly in his mouth.

 

All of that being said, Daniel has never choked where we have had to call 911 or do any procedures.  Lonnie & I are pretty good with watching him while eating/drinking.  We know the signs to watch for, we feed him slowly, and he has never had pneumonia. (knock on wood)

 

It has been recommended before that Daniel get a feeding tube.  His swallow isn't’ strong enough.  We at the time said NO WAY.

 

I’m not 100% sure what Lonnie’s reasoning is behind his vote of NO.

Mine – I think was because he is a good size, he is obviously getting enough calories in with all of our tricks of additional calories.  Those were the main reasons.  In my head I said to myself I know that one day he will need it.  I am wondering if that day is coming up quicker than I want.

 

I know many parents feel that the feeding tube is a wonderful thing, and I am sure it is for some.  Daniel loves to “eat” (mouth) things that we are eating.  He wants to eat, but he can’t.  It just all sucks.  There is so many reasons why I don’t want him to have one, but then on the other hand there are so many reasons he should.

 

Will it be harder on him at 4 yrs old to have this surgery then it was when he was younger?  Will he still want to eat orally?  Can the tube come out eventually and he be orally fed if he can learn to chew? Am I harming him more because I haven’t gotten it done?  When he goes to school full time he cant be drinking from a bottle (and yes we’ve tried Sippy cups – I have about 100 different ones in the cupboards).

 

Lately he hasn’t been eating well (drinking the bottle) he just doesn’t want it.  He doesn't’ want ‘baby food’ he wants what we eat. So by no means is he actually getting any calories from the feedings but only from his bottle.

 

Where it normally takes about 45 minutes to an 1 1/2 hrs total throughout a day to feed a typical child, this is how long each session takes to feed Daniel an 8 oz. bottle.  He needs 5 bottles a day to get the correct calories in.  Then add on that the times we are feeding him jar foods (another  hour or so) and you’ve got a lot of time spent trying to keep his calorie intake up.

 

Its stressful, and its frustrating.  One day he’ll eat like he loves it…other days its a fight.

18 comments:

JSmith5780 said...

You know I have no personal experience. But my thought is, if he has a tube, then any eating he does by mouth, with the family, is "for fun" and not a stressful time. You won't have to worry that he's getting enough because you'll know that he's getting what he NEEDS through the tube. Do you read the Crazy for Cody blog? She's going through the same thing right now. Cody should be getting a tube this week.

JoAnn said...

Oh Melanie! :(

We've just narrowly escaped a g-tube for Emma...so I know what you're going through.

You want Daniel healthy and well-fed, but you don't want him to suffer through unnecessary medical procedures and all the hassle and the baggage that comes with the g-tube. It's such a tough place to be in, because you want SO badly to make the right decision, but you aren't sure which one is right.

JSmith5780 has a point though. It would relieve your stress in some very important ways. And the less he takes by mouth, the less the risk of aspiration.

You're in my thoughts and prayers. I know you'll do what's right for Daniel.

JoAnn said...

BTW...we've tried to replace the bottle with about a million different sippy cups with Emma too.

She isn't going for it.

Jennifer said...

Hello,

I've recently found your blog and this is a subject I know a little bit about. About what the commenter above said, with a feeding tube you know they are getting all the calories that are needed and then all the feeding orally by mouth is just "for fun". I had 24 week twins and my daughter has a mic-key g-tube due to oral adversion due to the vent. We keep her on the feeding pump overnight and then during the day we work on eating orally without the stress of shoving the calories in. And g-tubes are GREAT if you are having to give a lot of medicines also. You know that they are getting the exact dose of medication they need and not trying to guess how much of it drooled/spit back out. So, it has worked out great for my daughter taking a lot of the stress out of eating, while make sure she is at a healthy weight. She is currently at 50th percentile for weight. If you have any questions, feel free to email me at witt_tigress@hotmail.com
~Jen~

Jessica said...

Melanie, we are going through the exact same issues and questions now with Paxson. At first the G-tube was recommended with a fundo wrap because of his vomitting. We have gotten that under control since figured out he is allergic to everything under the sun. But he still just isnt that interested in eating and like you said... it takes so much time to feed him. I feel like we are missing out on alot of therapy and development time. So Robert is convinced a G-tube is the way to go. I am still hesistant but we are meeting with the Doc next week to discuss it more. If we do get it, i know that we will still do oral feeding throughout the day at meal time, but hopefully take the stress out of it. Let me know if you ever want to compare notes or just vent on the subject. I'll be interested to see what you untimately decide.

Jennifer said...

Melanie, I have to disagree with everyone who has written comments on here. Only because I am a mother with a child with a feeding tube and have been for two years. Yes, it is nice to know your son is getting the calories but getting a tube comes with a lot of other problem such as GI issues, severe reflux...the list goes on. Once you get the tube, you'll start to rely on it so much that Daniel will lose interest in food and so will you.

The best advice I can give to you is call Suzanne Evan Morris. Google New Visions Therapy. Talk with her. She'll give you some great ideas what to do. She has helped me out with Tyse and has worked with CP kids longer than both our ages combined. She is an expert. I hope you don't get a Gtube and that you will call Suzanne.

You have to remember that you and I don't eat the same calories every day so he isn't going to either. Daniel looks healthy. He does not look like a boy who should be Gtube feed. Call Suzanne!

Jacqui said...

Hi Melanie,

I really feel for you making this decision. I personally hate all decisions like this.

Your comment on sippy cups made me smile. If you open my cupboard you will see every one known to man (and I only got a new set today). Moo still has a bottle at night-time and he is 5 (sssh!!! don't tell anyone).

I know for some people, buttons in their various forms are the answer to a long battle. I so much hope that yo can find another way. I have to agree with Jennifer in that Daniel looks so healthy and a great weight. I'm not sure if his pictures are deceiving. By comparison Moo weighs 30 pounds. He is a bit tiny (his younger brother weighs 33 pounds).

Thinking of you,

Jacqui

Stephanie said...

Mel-

The g-tube it has always been a big fear of mine, I can relate to that aspect.

With Drew being 4 and weighing 32 lbs. He has never been a big eater. It takes us 30-45 minutes to feed Drew with his blenderized meals. Our challenge is that we don't know what he wants to eat. He can't tell us. He will eat one meal great one day. A week later he spits every bite out of the same meal. There are many days I have to take a time out during or after feeding him.

We also have every sippy cup known to man. Drew started chewing on the bottle maybe 2 years ago. Our OT has been using the Honey Bear cup with him to try and teach him to drink through a straw. That has been a lifesaver. School uses a nosey cup - they say it works well - I am not sold.

Just my 2 cents!

Stephanie

Bird said...

Ahhhh. . . the feeding tube. We've done it both ways at my house.

The feeding tube ended up not being a good option for us, but I think it does work for some families. The surgery itself is extremely painful--Charlie was only four weeks old at the time and he cried for a week straight. He also didn't like the bolus feedings--they made him very uncomfortable and he would scream, and the food would go back in the tube, and we could spend an half an hour trying to get 50 mL in him.

But Charlie was full-term and is, in general, a very good eater. It took some time to get a strong swallow back after being on the vent, but he did it and can have thin liquids now. I think that if there are medical reasons why your child has trouble swallowing, that can change things. Also, Daniel is older and has other things to do besides sitting around eating all day.

I'm not a fan of the fundo procedure--my son's OT says that kids with fundos have a much harder time with oral feeding.

Your his mom and I know that ultimately you will make the decision that is best for your family and for Daniel.

wherever HE leads we'll go said...

Well these comments are all over the spectrum, but hopefully they help.

My daughter got a g-tube and nissen (where they wrap the stomach around the esophagus) at one month old. She was eating some by bottle beforehand, but not enough to really live on. At the time, we went for the g-tube just so they would let us take her home from the NICU (not the wisest way to make a decision!). We were naive enough to think that she would start eating enough by mouth & we could just have the g-tube removed later on.

Anyway, after the surgery, she would not take anything by mouth for a few months. She would scream and cry even if you put a pacifier in her mouth. I think this was more because of the nissen, then the g-tube. It took us months to work through her feeding issues. She would scream and cry & a bolus feed would take an hour for about 3 ounces.

That all changed when we got her a feeding pump. We have learned that the nissen makes the stomach's capacity smaller. So now we give her smaller feeds during the day & the bulk of her nutrition comes through the pump at night. She is eating by mouth twice a day (Stage 2 babyfood thickened with oatmeal). I do have to agree that the feeding time isn't so stressful because if she has an off day, we can just make up for it with her next bolus feed. She cannot drink liquids yet, but we are working on that.

That might be more info then you ever wanted to know, sorry. I do trust that you will make the right choice for Daniel.

Anonymous said...

I AGONIZED over this decision. There's no right or wrong answer here....just what works for you and your son. I will say this though; our pediatrician wisely pointed out that if I was that stressed about getting our daughter to eat safely, then what kind of stress was she feeling? I felt like a failure and I really dug my heals in about the feeding tube. Once we got through recovery and home, I couldn't believe how much easier life was...for both myself and my daughter. I had NO idea how much stress was surrounding if/how she was going to eat any particular day/meal until we had the tube. There is NO reason that having the tube means you can't do oral feedings. Working with a speech therapist and/or feeding clinic is key. It just means you have a way to make sure your child is nourished as he works on the skills needed to eat safely. Only you can decide when enough's enough and it's time. For us, it was the best thing we could have ever done.

Sarah said...

I have no personal exp with a tube (other than an ng in NICU exp), nor a child that cannot eat well physically (we have other feeding issues....). But I can mention that my sister works extensively with children that are disabled for various reasons. She has mentioned to me several times...that when a child is getting all or nearly all cals from formula via a bottle or sippy that eventually down the road they will need to go to a tube...because at some point they will have to drink so much to get there cals that it just becomes very hard to get that much down them....if that makes sense.

It seems to me that it would be easier to have a tube...so he no longer needs to swallow tons of bottles down but if possible I will still let him eat orally what he wants, as long as it's safe. There is no reason a tube fed child cannot eat orally also unless it's unsafe for them to do so. (or they won't ect...)

Jinjue said...

All based off my experiences....
My son does eat orally. He got his tube when he was 3 months, NJ then G at 6 months. He was NON oral, 100% tube fed.
It sounds like your son would just need to tube as supplementation, if he's not aspirating he should still be able to eat orally and for pleasure. (or course things to talk to the Dr about)
I don't feel like you're hurting him by not having gotten a tube yet, but if you do make the decision to get it I feel like it will take a lot of the pressure off and let the eating process be more enjoyable for all of you ((hugs))

Justinich Family said...

I can relate to this to Melanie, while Evan has major oral issues, it is not that he does not want to eat it is that it is somewhat dangerous for him to eat certain foods. Before we figured out he was a silent aspirator he had pneumonia a couple of times and then we started thickening all of his liquids. That really helped. I stopped thickening for a while and he was doing great. Now I am back to thickening because he is choking and gagging on the thin liquids. I also have to make an appt with his pulmonologist because he is starting to have this croup sounding cough sometimes after he eats and then it only lasts for an hour. I think this means he is aspirating or something is not right. We have had 3 modified barium swallow studies, and each one has shown slight improvement but I think he is having problems again so we need to do this or do a brochoscopy. Evan is in the 90%+ for height and weight but he is slowly gaining weight and he really just wants to eat junk food. We stopped giving him the baby food and started just putting our meals in a blender or using the food chopper to chop things up. That is what I do currently for meat and vegetables. Other stuff like rice and potatoes he can do fine with. Evan does not eat much and I think he gets most of his calories through drinking milk with thickener in it. Because of issues with him and getting the right amount of his seizure med in him I would actually welcome a g-tube because that would relieve a lot of stress and guilt on my part of trying to get him to take his seizure med. right now we are hiding it in ice cream and yogurt. I also feel that he does not get enough nutrients. I am going to talk to his pulmonologist about it but I don't know if a Dr. will do a g-tube for Evan mainly for medication. But I fear that his eating is getting more dangerous and it will only be a matter of time. Do I really want to wait until he gets a life threatening pneumonia. NO.

C said...

Melanie, can we be neighbors? Sheesh!

I'm with ya. Don't know what to say. I'll post more later on my blog.

Hugs, honey.

Ellen said...

Hi, Mel. Sorry I'm late coming to this. Max also has spastic quad CP and has feeding issues, too. We were recently told, because we are in a battle with the insurance company over oral motor therapy, to get Max a swallow test. We didn't do it, yet. Like you, we watch him when he eats. It takes a long time, he eats soft food. He is also SO skinny, 6 years old and just 35 pounds. We give him Ensure, and a powder supplement. I've wondered about a g-tube but, like you, we have resisted.

What do the doctors say? Have you definitely exhausted all options without a g-tube? Have you had a consultation with a feeding expert? We've had them in the past, and found them somewhat helpful. I'll bet I'm not telling you anything new here, but a feeding therapist has helped us in the past. I'm with you on not going there.

Jenkins said...

I was againist the feeding tube for my son. We were counting calories and trying our best to get him to eat enough and gain weight. Food, that should be enjoyable, became a stressful situation.
I felt like we were not doing enough or the right things to get enough calories for him.
We finally decided to get the feeding tube. Here are my thoughts in favor of the tube.
-Many of these children have giant hurdles in their lives. They need every bit of strength to conquer them. Good nutrition gives them that.
-Food can still be fun. Just having the tube does not mean that eating my mouth is done. Get in the proper calories by the tube and then feeding by mouth can be fun because it is a bonus not a necessity.
-Feeding tubes are not permanant. As they get older and eating by mouth is perfected, the tube can be removed.
-All medicines can go in through the tube. Most medicines make for a bad oral experience and can stop kids from eating, the tube helps this.
Just my thoughts. Feeding tubes are not bad, not the end of your child eating orally. They can be a great tool to maximize your child's abilities.

Amy Genn said...

My son cannot eat by mouth, and had his G-tube placed at 5 months...so I know nothing else.
I just wanted to offer you a few thoughts on the matter:
1) It's not as bad as you think it will be to use the g-tube.
2) YES! It can be taken out later if he no longer needs it someday!
3) It's awesome to have when they need meds! You don't have to wake them for night doses and they don't have to taste anything!
4) Kids bounce back quick! It'll be a hard couple of days...and he'll probably be right back to his normal self after the surgery. Then you let the site heal for a couple weeks before using the button.
6) For phenomenal (sp?) support online regarding feeding, feeding tubes, and special needs kids, visit: www.parent-2-parent.com
Amy :)