Hi,
My son was diagnosed with a brain tumour 6 months ago, which brought on ataxia problems with arms and legs. However more recently he’s developed swallowing problems and iv no idea how I’m ment to help with this. We aren’t seeing anyone until Thursday. Basically he’s losing weight and maybe eats 3 small bites a day as well as a few yogurts and ice cream. How do I get him to eat healthy foods?? Also how strict do I be, iv been letting him try bits and pieces of what he wants which I don’t mind, but I just gave him a tiny bowl of cereal I know he can eat (and likes) but after 2 bites he said he’s not well and doesn’t want it. 10 mins later he’s saying he’s hungry but his cereals soggy so he’ll have something else. What do I do?? I don’t know how he feels so I don’t want to be mean by saying no, but I also think I know he can eat what iv given him I don’t want him to be playing me up. Any advice welcome as I’m at a complete loss. he’s only 7.
Thanks
I would at the very least have him start off the day with V8 juice as it is very nutricious. Then follow that by orange juice/no pulp not from a concentrate. try scrambled eggs. Otherwise baby food. Things will get real worse if his nutrician suffers
Hi my daughter also brain tumor also swallowing difficulties.
Do you know location of tumor is it on the cerebellum ?
All food was wet and we got supplement drinks from the doctor.
Also a gel substance to thicken food and keep it down.
If you want more info give me a shout . Marcella
Try to get him to look down (lower his chin). That helps straighten the esophagus and may help to make swallowing easier. It helps me.
Thanks guys. All helpful. Just had a phone call from the hospital, there seeing him tomorrow instead so not as long to wait and also said about prescribed drinks so looking better already. Yes marcella, cerebellum, would be great to chat if your in a similar situation. Unfortunately iv just joined so not sure on my way around the site yet!
You might consider a healthy yet tasty smoothie every morning.
In a blender, you can mix yogurt, milk or coconut milk, chia seeds or nuts for protein, frozen or fresh spinach, pineapple, apple, banana, etc.
It might sound or look gross, but it tastes good (maybe you can give it to him in a solid and covered cup), and he’ll get some nutrition even if he only takes a few sips.
You might also consider a multi-vitamin for him. They make chewable vitamins for kids that taste like sour-patch gummies…but they’re not candy.
Physical Therapy is available for swallowing. My husband found that food that sticks together is easiest to swallow. Once he chokes, trying to continue eating is just going to make him choke again. He stops and then starts back up after 30 minutes. Sometimes dinner takes a long time but I don't like to see him choke any more than he likes to choke.
http://wellnessmama.com/4981/uses-for-chia-seeds/
Glitter on Butterflies said:
You might consider a healthy yet tasty smoothie every morning.
In a blender, you can mix yogurt, milk or coconut milk, chia seeds or nuts for protein, frozen or fresh spinach, pineapple, apple, banana, etc.
It might sound or look gross, but it tastes good (maybe you can give it to him in a solid and covered cup), and he’ll get some nutrition even if he only takes a few sips.
You might also consider a multi-vitamin for him. They make chewable vitamins for kids that taste like sour-patch gummies…but they’re not candy.
Dear Connie228, First of all, welcome to this site! Although I'm an adult with ataxia (unknown cause/not from a brain tumor), I have swallowing problems also. Others have given great advice. Just want to add I supplement my diet with a nutritional drink called Ensure (sold commercially in many stores in the US). It tastes good (I think...,ha!), so your son may like it! Of course, check with your doctor to make sure it's OK to give a child! My best to you and your son...,
It sounds to like he has at least some appetite, but can’t handle more than a couple bites before he feels nauseous or chokes. So things like your cereal example might be better served in a tea cup with just two or three bites worth ( a bowl might be hard to use with such a small amount with milk ).
I would sit with him and make a list of his favorite foods, have the computer going and browse through foods, to help remember things he likes and maybe find new things to try. Separate the favorites into 4 categories —1) easy to swallow, but not particularly nutritious 2) nutritious, but hard to swallow. 3) fine as is, nutritious and easy to eat and 4) hard to swallow And not nutritious.
-Cross out everything in #4, unless it’s his absolute favorite, because it’s not worth the time and energy.
- for the items in #1 think of ways to boost the healthy value and decrease any unhealthy things – for instance you can get full fat ( for calories), all natural, organic yogurt with fruit - and even add extra all fruit preserves. That’s very healthy and something he can eat slowly. If he loves ice cream, make a milkshake with some protein powder and fruit added in, and get the all natural kind. My daughter had hyperemisis gravadium when pregnant I would make her shakes with ice cream, heavy cream, protein powder, a can of Ensure and raspberries. You can also skip the berries and add a little chocolate and/or caramel. Very high calorie and high protein with lots of vitamins. Also, oddly, slim- fast shakes have a lot of vitamins and a decent taste and can be used as part of a shake, or just to sip on.
– for the hard to swallow foods in category #2 find out, if he can describe it, what exactly makes particular foods hard to swallow, because different people have different things they can manage, and try to find alternative ways to make/serve the food or close alternatives. Some examples: I can’t handle anything too hard or stringy or sticky or large. So, for example I can’t eat spaghetti because the noodles are hard for me to manage, but I can eat lasagna- it doesn’t get stuck the way the skinny noodles do. Or I can’t eat peanut butter spread on a single slice of bread- too sticky, but I can usually manage it in a very flattened out sandwich if it’s very soft bread. If he loves apples, but can’t swallow them now, how about applesauce? If he loves hamburgers in a bun try a very flat grilled cheese sandwich or a quesadilla.
also as another poster said, baby food can be a great alternative-- there are many good fruit varieties they usually don’t add a bunch of nasty additives, and the serving size is very small
– stock up on the items in category three, if there’s a way to boost the nutrition go for it. I would also concentrate on foods that don’t have to be either piping hot or very cold to taste good – it can be very discouraging to be only able to eat very slowly and everything tastes awful by the time you’re done. Also just having grazing foods that he can eat / smoothies a round to drink all day is probably going to work better than typical breakfast/lunch/dinner.
Just some thoughts off the top of my head, I hope your situation improves, so sorry you and your little boy are having to deal with all this.
I have swallowing problems starting with neck cancer, I had to have a feeding tube in after a while and after a few years finally started with peanut butter and licking it off of a spoon and looking for thing that I could get down. I eventually started with peanut butter sandwiches with the crust off and dunked it so it went down smoothly. Next I would go with wife to a smorgy and tried to eat there, and found I was able to eat a little bit of a lot of things but if I had too much it really turned me off so I stopped forcing myself to eat . I had the tube removed after a few years but have been debating on getting a new tube reinserted. The part I don't like is when you have the tube the first time and you need it removed they just yank it out and it is not enjoyable. When you have a permanent site it becomes easy to install but you don't know when you need a new one until the old one rots off, which happened to me a few times and its a little scary because you need to put that damn thing back in so the hole does not close up on you which happens pretty quick. Jerry
Connie if ur on face book its
Marcella Feagan ( scott)
Thought it was cerebellum alright … Out the other sude of this hun so if u need anything feel free to ask …
Wow, some great great advice. Thankyou so much. Funny how were half dealing with the tumour but it’s a ‘simple’ thing like eating that’s so difficult. When he can’t walk I can carry him but unfortunately the eating side of things I can’t do for him. Kit we have a few different physio People tomorrow, hoping we have a few answers and I have also been told we may be prescribed nutrition drinks so shall see how we go
Some therapists work with what you're eating rather than how you're eating it. My husband has ataxia with swallowing difficulties and I had a cervical fusion which has made swallowing difficult but is getting better. I find that I do more drinking liquids now with food due to the food hanging up half way down, My husband doesn't have the sensation of things hanging up and just inhales it and chokes. Smaller portions. Something not crumbley. Nothing that once you chew it will be in small loose pieces like a cracker. I try to limit how many people see either of us coughing our dinner out. Never a good look, you know.
Connie228 said:
Wow, some great great advice. Thankyou so much. Funny how were half dealing with the tumour but it's a 'simple' thing like eating that's so difficult. When he can't walk I can carry him but unfortunately the eating side of things I can't do for him. Kit we have a few different physio People tomorrow, hoping we have a few answers and I have also been told we may be prescribed nutrition drinks so shall see how we go
That’s exactly what my son does (well he doesn’t cough) but goes through so much drink for the tiniest bite of food. He chews for ages then says it’s stuck once he’s swallowed so drinks a whole cup ready to start all over again. Most of the time he chews so much he ends up spitting it back out, he also goes to the toilet 5-6 times and spits out what’s in his mouth thinking I don’t know, but obvs I do. We sat for 50 mins and he managed a few nibbles on a very buttery soft jacket potato tonight. That’s an improvement for us
It isn't easy to stop the excess drinking while eating. He has probably decided that's the only way food will go down. I did the same thing. I have finally decided to try to limit to two swallows of whatever and then if I need more, to drink more. I found most things do go down with two swallows, now. Tip chin down and swallow. Not an easy thing to relearn. I was horribly embarrassed by the gagging and my distressed look which everyone would then ask if I was okay. It was hard not to get mad even with people wanting to help you. It took months before I felt confident enough to eat out in a restaurant. Your son's excessive chewing makes me wonder if he believes the food will go down easier that way. I don't find that always to be true. I need some feeling of it going down or swallowing against it. Good luck.
Connie228 said:
That's exactly what my son does (well he doesn't cough) but goes through so much drink for the tiniest bite of food. He chews for ages then says it's stuck once he's swallowed so drinks a whole cup ready to start all over again. Most of the time he chews so much he ends up spitting it back out, he also goes to the toilet 5-6 times and spits out what's in his mouth thinking I don't know, but obvs I do. We sat for 50 mins and he managed a few nibbles on a very buttery soft jacket potato tonight. That's an improvement for us
I have taken the test to watch the chewing and swallowing and at the time they found that if I turned my head a little to the right I can swallow easier but I have not found this to be true . This test was done in2005 or 2006 right after the operation so my healing may have changed things. My biggest problem now is no appetite, I went to the local pharmacy to see if there was in fact something to increase appetite and the only answer was cannabis which I was already trying different breeds to try to find one that would help to no avail.
If you'd like a good, totally natural shake that is easy to make up (simply mixing a powder with liquid) and tasty (vanilla or chocolate flavour) then have a look at Juice Plus (www.juiceplusworks.co.uk). It can be used as a meal replacement and is very nutritious. They also offer soft chews, similar to wine gums, that provide goodness and anti-oxidants from 17 fruit + veg which is a real bonus for kids who don't like the healthy stuff. My kids love it and I can relax knowing they've had more than their 5 a day. My husband (with ataxia) feels good on the shake + fruit/veg capsules The drawback is that it's not free but it's worth looking at. Let me know if you'd like more info about it.
Hope your appt goes well at the hospital, it sounds really tough for you and I hope they can give you the support and advice to help, as well as giving you a chance to try the prescribed drinks.
Forgot to say there is one rule for us … Drink or eat NEVER both at once . Tumor on cerebellum is probarly sitting on the back of the tongue or very near it so ask to speak to the Feeding Clinic get referred to an expert . Axphiation is very possible especially at his age. If he finds it hard to suck than mention that also. We were given certain types of cups for drinking and were shown what foods not to feed her. By doing this we avoided her been peg fed . It takes a long time for her to eat but she does it her way now … Is it a pilocystic astrocytoma ?
Marcella iv messaged you on fb xx reading what your writing I think our situations must be pretty identical