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Tuesday, January 11, 2011

Decisions ... Decisions

One of the hardest things about being a parent of a child who isn't ..... shoot.. who has special needs is the decision making process.  You see - with a "normal" child, you make a misstep and you end up with a kid who doesn't sleep through the night until they are 3 or you end up with a kid who has bad manners, etc.  In the grand scheme of things - not really that big of a deal. With Alexander - decisions take on a life of their own. Now... I know many of the people reading this have children with WHS also - so don't be too upset at me for sharing these possible outcomes.  Really, my decisions now all come down to Alexander's nutritional needs. Ok... here are my dilemmas
We already have a feeding tube.  It was not our informed decision - it was made at the time of the diagnosis because we were told Alexander would never eat.  So.... do we use it?

**The benefits of using it are - we can definitely give Alexander more food through the tube than we can orally. It is definitely easier to tube a bottle than it is to coax him to eat 2-3 oz... sometimes only 1 oz.  He might gain weight faster if we use the tube.  He might develop faster if we use the tube.  He might not be getting enough nutrition without the tube.  He might begin to walk if he had more muscle strength and brain development from more food.

** The downfalls of using the tube - he might need the tube forever.  He might realize how easy it is to get calories without having to work for it.  He might not gain any more weight any faster.  We will probably loose all the oral skills we spent the entire summer working on. Oral skills are the building blocks of talking.  What if he never talks because we chose to give up orally? What if we deprive him of the joy of eating because we give up orally?  What if we have to carry pureed food, a pump, etc... for the rest of his life because we allowed him to become attached to the pump?

**The benefits of eating orally - he can eat 3 oz at one time through the bottle.  He knows and cries for hunger.  He eats food - stage 2/3 consistency.  In fact, if I give him pudding - he will only eat it if I make it thicker with rice.  He has eaten small small bites of bread (the size of a rice crispy treat) ... but still - eaten them.  He will eat  puffs/ yogurt puffs, etc.  He is progressing with his skills.  He has rolled from front to back, smiles, coos, moves all around, is gaining neck control and trunk control like you wouldn't believe. So.... maybe he is getting the nutrition he needs.  Loads of other WHS moms don't have a tube and would probably not give Alexander one if he was displaying all these things. He has sat unassisted for 2 seconds while during OT.  I did not see this - but heard about it.  Is it possible for an 8lb baby to have enough muscle strength to sit unassisted?  Plus... seriously - how many 7lb 9oz babies do you know that drink more than 2-3 oz at a time? How big can his stomach be?

** Downfalls of ignoring the tube - he already has it. Are we slowing his process by not using it?  I know of 2 moms who started feeding their kid with the tube regularly and their kids are now doing all sorts of new stuff (including walking) and gaining weight like a normal kid.  Also, as we progress into baby foods - it has less calories than milk.  So - when I give him a jar of baby food - it might only have the calories of 2 oz of milk (and that is a pretty high calorie jar)

But how do I take the risk? It is all or nothing.... when I tube Alexander, he doesn't experience hunger.  He doesn't cry for the next bottle or food.  Then I have to tube him again. I tubed him last night - just the rest of his bottle so he would get enough calories and when I called home at 9:15 - he still was not awake and hungry. *sigh* 

I feel like I am choosing between a wheel chair and a feeding pump.  I know - it is not that black and white.  That lots of kids without feeding pumps end up walking eventually - but I also know a lot of kids who I can't help wonder if they would have developed faster / more if they were getting better nutrition.  I also know kids who have been on a feeding pump and learned to eat orally later in life.  Every time I speak to someone who uses the tube - it seems like I am doing an injustice by going oral..... but when I talk to someone who has fought against the tube... they will encourage me to keep going orally.  It is so hard to know what to do.  It is so hard to make the right decision. 

Right now - we are doing a little combo. It is really not working well - and I'm afraid we will have to go with something and stick to our guns soon.  We put medicine through the tube and some MCT oil to supplement our calories.  We give him high calorie baby food.  But .... soon..... we are going to have to make a hard push to go back to all oral or go tubing.  Because - when we use the tube ... he does become lazy with the bottle.  Example: today - he doesn't want to eat ... he wants to be "fed."

Any insights?

4 Comments:

At January 11, 2011 at 6:42 PM , Blogger Anna said...

This is the age old question for our kids! At the end of the day, it really does come down to the individual child, and what works best for you!
I will tell you our story and offer my thoughts.
Ryley was always tiny tiny tiny! We persisted with oral feeding until he was 6 and 1/2 years old. He was always a relatively 'strong' kid and despite his size was able to walk with a walker since he was about 3 years old. He tired easily though and got sick often, but some of that was because of his seizures as well.
Ryley, did have a handful of words before his seizures got so bad that they did damage to his brain. He lost all his verbal communication and only has one word left-Mumma.
It is unlikely he will ever talk, so that helped us in some ways with out decision to go ahead with tube feeding.
We do still let him eat orally if he wants to though. He was never able to chew so always sucked everything and hs low tone in his mouth, so eating was actually really hard work for him, which I think contributed to him not always wanting to eat much.

Since Ryley got the PEG, he has gained lots of weight! Being able to control his calories and make sure he gets enough water has meant huge piece of mind for us too. Ryley started walking when he got the PEG, but I don't think that is just because of his weight gain. It is also because of the reduction in seizures (because he is on the Ketogenic Diet) which has meant an increase in his confidence!

Personally, I always think oral feeding is the way to go unless there is no weight/length gain or your child is struggling with eating. Then the tube can really help.
But everyone views things differently. I don't regret not getting a tube earlier at all. And hope one day that we won't use it as much. But I have to say that I am really happy using it and for us it has worked out well.

Can you get advice from a dietician or speech pathologist as well?

I think you can do a combination, there is nothing wrong with that. Plus giving him chewy toys and things like that will always stimulate his mouth too if you happen to have a day of tube feeds.

Hope this has helped in some way???

Each WHS child is so very different. There are just no 'right' answers. You can always be flexible with your decisions if you need to be. It is all trial and error sometimes!

Anna xoxo

 
At January 11, 2011 at 7:35 PM , Blogger Shannon said...

Well, I really don't have any amazing advice, sorry! I think you laid it all out there pretty well. :) Emma has a feeding tube and has had it since she was 7 months old. She used to take forever to eat and then took a dip on her own personal growth curve (the 2nd percentile). We still always tried to give her a bottle first, then do the tube after a certain amount of time. The first winter after she got her tube she had a lot of colds and breathing and eating was hard with a stuffy nose, so she quit eating orally alltogether. The original dietician increased her calories constantly too, which resulted in her ending up WAY too heavy for her length, so we had to work them back to something normal for her! She's now walking well and doing all sorts of great things, but eating is still a problem. She's been taking little bites of some things (mostly dissolvable food, or purees) and she will swallow them, but it's only like a couple bites a day. I used to want her to be off the tube, but it does give us peace of mind that she's getting what she needs and it's not so frustrating. I do wish we wouldn't haves stopped working on oral for awhile, but that happens! I also agree with Anna that I tend to think go for oral if possible, but you have to do what's right for Alexander AND the rest of your family! Love to you guys! He sure is a cutie and your twins seem like sweeties!
Shannon

 
At January 11, 2011 at 7:49 PM , Blogger Kisses4Kaylee said...

Okay, as the mother of a WHS child without a tube, I can only offer you my thoughts. I am hoping that Kaylee may never need a tube, but I suppose that there is always the possibility that the doctor will one day suggest that she needs one.

Here are my concerns:

1) If Alex is eating solids, and chunky solids, at that, why would you want to tube feed him? I understand the convenience of the night feeding and the guarantee of extra calories...it is that part of the G-tube that even makes me wonder if I should consider it for Kaylee...but to me, if you ultimately want him to function as "normally" as possible, I would think that continuing to encourage the oral feedings would be the way to go.

2) You made a valid point about his size and the expectations for food. The nutritionist I consulted for Kaylee told me that she was getting enough calories for her size, and given her syndrome and the smaller size of her stomach, that I should not expect her to hold the same quantity that a child of typical development would.

3) My gastro-enterologist, at our last meeting, put me off from talk of the tube. I was more than halfway convinced that Kaylee should be on one-- if for no other reason than it seemed as though most WHS kids were on it, and she is such a peanut. However, he reassured me that the weight gain would not necessarily be equalized throughout her body. her stomach may fill, but then she may grow out of proportion. He was more concerned with her growth curve. Kaylee is on or around the 50% on the WHS charts in all areas-- weight, height, and head circumference. His conclusion with that is that she is healthy and getting what she needs. Of course, we go back on Monday and depending on how she has grown in the 2 months since he saw her last, he may say something different. Consider how Alex is growing on his own chart~ that may give you insight you seek.

3) I was never concerned about this aspect of the tube til I read another mom's blog about her son, Ryan. He is now 4, and he has had his tube for over 2 years. They recently removed the tube,but the hole will not close so he needs surgery. According to what she has since discovered, children who have g-tubes in place longer than 8 months (on average) run a greater risk of complications when the tube is removed. Of course, that is NOT to say that he will have that problem, but the odds become greater the longer the tube is in place. For that reason, I would want to think about encouraging the oral feedings over the tube to encourage its removal altogether sooner rather than later...but that is me.

I understand your frustration; it is so hard to know what to do and what is the best decision to make that is in the best interest of our kids. Anna is right, though-- what works for one may not work for another as they are all different. My gut tells me that Alex is doing REALLY well, and that encouraging the oral is the path to take. However, I have not been on this journey as long as the other moms-- nor am I a doctor. Go with your heart on this one~ you're an amazing mom, and you will make the best choice for your little man! xo

 
At February 8, 2011 at 10:08 PM , Blogger Kevin O'Brien said...

Kendall has had a tube for 3 years now. The tube gives her the nutrition she requires, but she also shows signs of hunger and is interested in eating. Yes, it's a crutch for us at times, but it relieves the stress of her resistance to eating at times. She would be a shell of what she is without the tube.

Mix the tube feeding with oral. Even try using the tube when you feed orally so that an association can be made between being full and eating. There are many tricks that will allow you to use both and Alexander will thrive.

 

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