Nathan is thin. Very thin. Like, I can wrap my hand around his whole thigh thin. Up until now, he’s been thin but he hasn’t looked skeletal. He’s grown a lot though. I don’t know how tall he is, but he’s gotta be at least 40 inches tall. So with this growth spurt, well…he’s starting to look just too thin. Which is why I’ve been mentioning the thought of a G-tube.
My main concern is that if he is not getting enough calories, perhaps his brain is malnourished and he is not receiving enough calories for his body to function properly and for his brain to develop. Could this weight/eating issue be having a negative impact on his health and development? That is the question.
It used to be that food was his greatest enjoyment and motivation. He LOVED eating. Eating was his thing – he was a little pig. But as he’s grown he’s lost that joy de vivre de that he had around food. He is now a pro at clamping his mouth shut as soon as a spoon comes near his face. Which is pretty impressive for a guy who’s little mouth is always gaping open. He is an expert mouth-controller now when it comes to food. Part of it is that he’s not as interested in eating healthy food as he’s interested in eating junk food. But, as I’ve mentioned before, junk food causes congestion in him which makes him throw up which brings us to square one.
So one issue is his desire to control his environment by deciding what and how much he eats.
The 2nd issue is the congestion. Being off his GFCF diet kept him congested for months, which led to vomiting. Now that he’s back on his diet, he’s been less congested and not throwing up as much. Except for the last few days as he’s had a nasal and ear infection and he hasn’t been wanting to eat. So we keep his congestion away with homeopathics and his diet, but then he doesn’t like the food quite so much.
Lately we’ve resorted to making him a protein shake with protein powder, almond milk, honey, prunes, and rice cereal to try and get more calories into him.
But it breaks my heart as we were moving forward with eating – he was eating very chunky foods, biting and chewing, handling all sorts of textures. Now I look at him and I feel as though we’re sliding backwards. He’s now taking 1 or 2 bottles a day, and all of his foods are very thinly pureed. REgressing, not PROgressing.
So that’s the 2nd issue – he’s not interested in eating healthy foods very much, so he’ll take a few bites and rock out closing his mouth and spitting out food that we sneak into him by tricking him into laughing.
Which brings us to the weight and malnutrition issue.
My fear about getting a G-tube is that it’s another source of infection and problems. More hardware in his body (he already has a shunt). More things that can go wrong. I’ve also heard that having a G-tube can create more issues with reflux. Plus, it would mess with his oral eating if we bypass his mouth and go straight to his stomach. We’re very much “on the go” type of people. How would a G-tube affect our lifestyle?
The advantages would be that we can make sure that he is well nourished and well hydrated. We can feed him all sorts of goodies straight through the tube – vitamin and supplement heaven! Plus we can give him all sorts of great meals that don’t taste good – like raw vegetables, coconut kefir, etc etc. We wouldn’t have to spend so much time every day trying to feed him – some days it seems like we spend half the day trying to get him to eat something! So that extra time could be used in therapy, especially knowing that he is well nourished and hydrated. Heck it could even be used in fun stuff!
Now, in doing research, I found this chart: http://www.lifeexpectancy.org/articles/GrowthCharts/B4.pdf. According to the chart, for a boy with his level of mobility, he is in the 90th percentile for weight at 29 lbs (13 kg). He’s even in the 3rd percentile for weight in the regular growth charts. So does this mean he is well nourished? I would imagine so?
By the way, there are different charts based on a child’s mobility. If you want to see all the charts, you can see them here:
http://www.lifeexpectancy.org/articles/GrowthCharts.shtml. There is another chart for kids with CP published by Kennedy Krieger but apparently this one is more current and with a greater number of children involved, so it should be more accurate.
Going back to the weight issue…what do you think? What are your experiences? I would be so grateful for any insight you guys could offer!
I always remind myself that Charlie has very little use of his legs and will therefore always be a little lighter–legs have a lot of muscle. So I expect him to be lighter.
I’m not sure what I think. I would hate for meals to become such a battle that food was ruined completely for Nathan. That would be terrible.
You may also want to talk to Leonid about some jaw exercises. It could be that as he’s getting older, eating is becoming more difficult. I don’t understand why, but I have heard that this can happen. In that case, perhaps some exercises could help.
Really, you’re the mama. You will figure out what is right for you and your family and that is the most important thing.
Hi Marcela,
I work with many children on G-tubes and all of them continue to do some form of oral feeding. As long as there is no dysphagia (swallowing problems) Nathan should continue to take food by mouth. His G-Tube would be to supplement his feedings and provide good nutrition to him. Stopping oral feeds is not necessary for Nathan and they should continue so that his teeth do not decay and so that his oral muscles continue to develop. Just my professional opinion. Take care…Nikki
Oliver’s weight is 2 pounds less. G-tube was the issue from the very beginning and I had to fight to avoid it. Oliver is the type that he would never eat by mouth while being on the G-tube.
Marcela, I don’t know how many children on the tube you have seen but there are also plenty of children on the tube and still very thin. I admit that some friend of ours are looking great. But I assume, that is based on the diagnosis.
In our case I keep saying that after a great examination of Oliver’s metabolism and all other things I can accept the G-tube. I can put all good stuff directly, but what happens when his body can use them right way.
The weight is not the best measurement. I would prefer if the doctors took the measurement of muscle and bones. That would expressed better if the child is getting on. This is a still my opened issue.
It was hard to get Rylands Gtube but in the end it kept us out of the hospital and made getting more cals in him alot easier. He’s never done good at eating stuff by mouth and over the last 1 1/2 has gotten worse. He won’t take a bottle anymore and we do all formula by tube, which is easier because a bottle would take us sometime 45mins and he won’t take it in public. We are back to bolus feeds which I can give him 5oz in about 3mins and go. We still try to get him some foods like ice cream and those baby cereal puffs. Ryland got in tube 20 months old and we have never really had any problems with it.
Ryland wears size 6/7 slim in pants of course because he’s only about 34lbs and I want to say about 44 inchs long, since he has a smaller head he doens’t get the height from that but does have long legs which are very small. He’s pretty boney, I always feel bad because he doesn’t have much of a butt and I often wonder if it bothers him. Ever since his surgery we are working on getting him to gain weight again, every time he starts he has something else come up. From Jan to May we had all kind of feeding problems more than likely due to the surgery.
Have to thought about doing a tube through the nose and seeing how that works out. That’s what the doctors were going to do for Ryland at first but since his reflux was so bad and we had to do the Nissin fundo we just went ahead with the tube surgery also.
I would say give it a couple more months, we thought about it for a good 8 months before doing it.
Hi Marcela, I am debating the exact same issue as you and NAthan for Luke. I fear that he is not getting enough calories. I too am considering a g tube as supplement to his oral feedings. It is such a hard decision. Luke too is 36 in. tall and only weighs 24 lbs. We have fought it for so long but are starting to feel it is necessary for optimal brain growth and energy. Good luck with whatever decision you make.
HI Hun,
I feel I should add my 2 cents worth here also. As you know Billee has a g tube and at the moment takes everything through it. I am very hopeful that she will eat orally again soon. It took us about 12 months of struggling to feed her orally and spending hours during the day doing so. We then gave in and decided that she would be much better off with the button. Immediately her health and alertness improved simply from being properly hydrated and getting all of the nutrients etc… Time we spent fighting to feed was put to better use with therapy and fun things! We have a pump for Billee that fits into a back pack and it is really easy to take anywhere. We can feed her at any time (remember we have 2 older girls that have busy social lives!!).
All in all I would say its the best decision we made and when she does eat orally again she can do it purely for pleasure.
This is just my personal opinion. Hope it helps XXXX
Tough decision, Marcela, and the other mothers provide lots of helpful info. Just 2 things from me…if you decide to give him the surgery, inquire about having the Nissen procedure also, to prevent reflux. That seems standard here, but I have read other mothers online who have reported that was not the case for their child.
This would not likely reduce the amount of time to feed him, but are you teaching him to drink from a cup (instead of suck from a bottle)? Just noting that drinking requires different oral control than chewing and is worthy work for the mouth/face/throat.
and on a ‘typical little boy’ note–maybe the ‘will’ development is working-and you are seeing the not so pleasant side of ‘will’. It is good to see that kind of thing in a preschooler- ‘normal’.
so–bribe him with dessert of some ‘less bad’ forbidden food?
and if tube feeding is supplimental- can’t it be run overnight==?
Hi Marcela
Three years ago we were faced with the difficult decision whether or not to get Timmy a G-tube. One of my BIGGEST fears was that he would loose interest in eating orally, but so far eating is still his favorite daily activity. My next concern was being we travel ALOT to Doc visits and are out and about a lot how would having a G-tube play into our daily lives.
Timmy having a G-tube has actually made our lives and his ALOOOT easier.
*We can put all of his meds into the G-tube and now we are sure that he is getting a full dose. By being able to do this, there is ABSOLUTELYno more power struggles at meal time, being that eh doesn’t have to taste all of the yucky meds and suppliments.
*If Timmy is sick or doesn’t want to eat we are ablle to still get cals into him and keep him well hydrated.
*If for some reason we are in a rush, we still are able to feed him.
*Now my 14 year old and even Emily, who is 5 years is able to help with feedings when necessary. This is a big help in a pinch for us. Doesn’t happen often, thank goodness.
In the 3 years that Timmy has had his G-tube, he hasn’t had any infections in or around the G-tube. We haven’t noticed any increase in his reflux due to the placement of the G-tube.
My thoughts on the G-tube are;
Nathan will most likely be a thin boy who looks underweight due to his activity level. Meaning he doesn’t walk or run to build muscles in his legs, stomach, arms etc. Timmy looked thin also until he started standing, sitting alone, weight bearing on hands and knees etc. activities in which he started building muscle tissue.
Has Nathan ever had a swallow study? Maybe part of his congestion could be caused by silent aspiration, especially if he is eating soft solid foods? Timmy had a swallow study recently and it showed minor aspiration with soft solid foods. Wouldn’t hurt to have him checked just to rule this out as a cause of Nathan starting to loose interest in eating orally. Before Timmy’s G-tube placement, he had silent aspiration and lost all interest in eating orally.
Maybe OT or ST could work with Nathan or show you some oral motor exercises to do with Nathan? We have been told by Timmy’s OT/ST that some kiddos overtime if they aren’t eating hard foods on a regular basis “can” loose muscle tone in their jaws and the ability to chew and swallow decreases, which leads to lack of interest in oral eating.
At some point, I have been told by Timmy’s dentist, that around the age of 3 or so, some kids loose the sucking reflex or desire to suck. Hence, why some kids don’t suck their thumbs as long as others. Maybe this too is Nathan’s problem in him loosing interest in sucking his bottle? I soooo wish Timmy would loose his sucking reflex or desire! :0)
Being the amazingly wonderful MaMa that you are, I ‘m sure that you will figure this out and do what is in Nathan’s best interest.
Good luck with your decision making.l
Donna
First of all thank you SO much for everyone’s input about Nathan’s weight issue and the possibility of a G-tube. I can’t tell you how grateful I am for your feedback, advice, and support of us! I have to admit I feel much better about the possibility of a G-tube. It doesn’t mean that’ll be what we do, but the replies from the parents whose kids have G-tubes demystified the issue for me and, if that’s what we have to do, I feel much better about it.
I also got some great advice of things to check out/rule out before having to revert to surgery – oral stimulation, aspiration, bone/muscle density, etc.
Our decision, however, is to take it slowly. I plan on taking him to a couple more alternative doctors first to see what they suggest about the vomiting and ways of getting him to gain weight. If, after a few months, he is still having issues, then we can revisit/reconsider the issue.
Once again thank you SO much for your help…I know ultimately it is OUR decision as Nathan’s parents but it sure is helpful to hear from so many different people/perspectives! THANKS!
Hey Marcela
Not sure that I’m a wealth of new info for you but wanted to say that I can really relate to this post. I often debate with myself on tube placement. I would love for him to get some free water which he isn’t getting now and its incredibly saddening to expect him to orally take syringe after syringe of meds each day. Although he does it like a champ. In addition there are days when we are so busy between appts that enabling him to get feeds while driving down the road etc would make our day go a lot smoother. Cody has some swallowing issues. We use thickner in everything to keep things safe but I still find myself constantly worrying about aspiration. We started vital stim this week so hoping it will help. I don’t know what the answer is. I don’t want him to need another surgery nor do I want another foreign device in his body but if it potentially could make him healthier maybe it would be worth it. Does Nathan like avacados? I add a little lemon juice and Cody goes crazy. I’m not as good with nutrition stuff as you but everyone tells me its a good fat. You are an amazing momma and I have no doubt that you will do whats best for Nathan. Good luck facing this hard decision. I will look forward to learning from you.
Laura
Hi Marcela,
Your description of Nathan’s eating habits is EXACTLY the same as my son used to be.
Every time we would try to feed him or offer some food, he would close his mouth and shake his head. He would never be hungry.
All he would eat was pies, so he lived on pies. Imagine that. Bad mommy. I was going crazy. Until we figured out that he was gluten, corn syrup and food coloring intolerant and eating those foods caused him to have reflux. So first we would give him prevacid for reflux and than feed him with wheat and corn syrup that cause him to have reflux. Not working.
What I’m trying to say is maybe there is a reason behind his eating habits changes. I know he’s not taking prevacid anymore. Maybe try to give prevacid again for 2-3 weeks, see if there are any changes in his appetite and go from there..? Just a thought…
Hugs
Hola Marcela, primero que nada un beso muy grande a tu hijo y te escribo desde Chile para contarte que mi hija menor de 3 años tiene una gastrostomía desde el primer mes de vida, ella se alimenta normalmente por boca con algunos inconvenientes pero cada día mejor pero usamos su gastro para asegurarnos de que tenga una buena nutrición e hidratación. Nunca hemos tenido ningún tipo de problemas, todo depende del cuidado del botón que es muy fácil y el manejo es sólo práctica… hay que mantenerlo siempre limpio y seco y cambiarlo una vez al año pero los niños pueden hacer una vida totalmente normal, el baño de todos los días es igual a cualquier otro niño y en el verano disfruta de la piscina igual que sus hermanos, la alimentación por sonda es parte de nuestra rutina cuando no quiere comer por boca pero sobretodo pensando que es la mejor opción para que se mantenga saludable y recibiendo todos los nutrintes que necesita. Nuestra hija Macarena es la menor de cuatro hermanos y nació con Artrogriposis Congénita que es una enfermedad neuromuscular, en estos momentos le estamos haciendo Terapia ABR hace 4 meses y para nosotros ella es el centro de nuestras vidas… desde aquí te mando un abrazo y ojalá te sirva de algo nuestra experiencia para cualquier decisión que tengas que tomar con tu maravilloso Nathan… Cariños
I am sorry I couldn’t comment earlier but I have been having internet problems.
Makenzie has had a G-tube since 4 weeks after her accident. It was a really hard decision for me to make but there was no way that she would survive with out it and an NG tube long term was not an option.
In the beginning we had some granulation tissue issues and a bit of irratation but it only lasted about 6 months. We have NEVER had any issues with the site EVER!
Makenzie is able to eat by mouth but it has been a fight and I decided that her oral eating is important but I am not going to fight about it with her.
I have been doing a blended diet with her and it is great to know that she is getting really good food.
Makenzie was FTT for a long time because of Vomitting issues. Once we got that under control and she began to gain weight by getting enough calories Makenzie began to make many improvements.
I don’t know what is right for your little man but I know with your mommy gut and imput from other mommies you will make the right choice! If you want to talk about it more let me know! This has been one of our biggest trials over the last 3 years.
Tons of hugs and prayers
Pam and Makenzie
http://www.makenziesmiracle.org
Hi Marcela. I don’t really have any answers for you, but can totally relate to your concerns! We just saw our pediatrician yesterday for Renzo. He is in the 5th percentile, and seems to have plateaue’d (sp) where his weight is concerned. Renzo is 18.4 lbs, and 30″, at 3 years of age. When people see him, they think he is 9 months old. But the thing is, Renzo has just started eating these past 6 months! He eats 2 containers of baby food at each meal, and takes 16 oz. of pediasure a day. And, yes, sometimes it’s a challenge to get him to eat, and yes, because he can’t talk and shows now desire to eat I have to set timers just to remember to feed him. But so far, no one’s really mentioned a G-tube …yet. I know it will probably come up eventually …soon, but I have the same worries as you. So, until then, I’m going to just keep singing (it’s one of the few ways I can get him to eat) and praying that he continues to eat! Will definitely be on the lookout for whatever you come across. Hugs to you all!
Hey Marcela,
Let the Doc’s know what struggles youve been having with food and they can keep a close eye on him and his weight. Let them know you are concerned, they can atleast steer you in the right direction and let you know if your worries are valid. Sienna has been fed via gtube and only gtube nothing oral since 6 months of age she is on the typical kids charts at 90th percentile for weight and height so dont let anyone fool you. If they are going to be skinny, they’ll be skinny no matter what but if you remember correctly Sienna has little to no activity. SO…….just keep an eye on it. Michele
Our daughter has had a g-tube since she was two. It was the toughest decision we ever made for her. She just wasn’t get enough calories eating by mouth. We struggled with the g-tube in the beginning – lots of trial and error about how fast we could get food directly into her tummy. Lots of throw-ups and struggles with constipation. I believe it has helped her overall though – because she has been receiving enough calories and nutrients, she has been doing well in therapy and in school. She is almost seven, is about 48 inches tall and weighs about 50 lbs. She looks very healthy, we have never had any major problems with her site and she still eats solids – just not enough of them. We are praying for a day she may no longer need her g-tube but it has been great for her in the weight-gain area and has helped her with stamina and energy.
We are struggling with the same issue. Simon is low percentile for weight on regular charts and about 50th on CP charts. Feeding is stressful and he isn’t progressing, gags often and I feel like he thinks of it as a chore much like I do. We go for a consult on Oct. 18th to learn more about the g-tube. What have you decided now?