Any ideas?

[jshet]

My son has struggled so hard with weight. He is 5'5, and weighs 76 pounds. He is pancreatic insufficent, enzymes are not the issue. He is allergic to gluten, milk, dairy, soy, and rice. Plus he has autism and because of textures and tastes he will only willingly eat 7 foods. He does have a g tube receiving 10-12 hrs feeds a day. Still everytime we gain a few, he ends up loosing them. He tends to hover between 75-77 pounds.
gi doc is amazing and has tried just about everything. He and the dietician are speaking with specialists outside the hospital to try to find a new formula with higher calories for him. He even had an allergic reaction to Peptamin.
we are going to do a couple stool tests to check for inflamation to rule out Chrons. He does not want to do a colonoscopy because he has a bleeding disorder and when the feeding tube went in, he needed 3 blood transfusions. So if inflamation shows up, then he will do the test.
to say we are frustrated is saying the least. We do not do night feeds because his formula is only good for 4 hrs at a time, and he needs enzymes every four hours. The slightest noise will wake him. If he wakes up, he's up. Most kids with autism don't really have an internal clock, and go for long periods of time without sleep. This is just not possible for us. He needs sleep too.
Any ideas will be greatly appreciated. Thank you.

 

[believingjesus]

I have no advice, only sympathy as I am so sorry your son has so much to deal with and I feel for you too as I know it must be very hard for you. I have had a child that I cared for in the past with autism. He only ate a few things too and textures were a problem. It was impossible getting him to eat anything other than his particular few foods he chose to eat. Have you tried sneaking in calories in his drink? I know you are doing everything possible to help him. I am sorry I don't have any advice - just understanding.

 

[jshet]

Hey believingjesus, nice to hear from you. Jacob only takes small drinks of water throughout the day. Not a fan of drinking, another reason for the g tube. Still haven't heard back from anyone about a possible new formula. As long as he has an unlimited supply of bananna popsickes, he's happy. He gets most of his liquids from these.
Thank you for the kind words. I guess as long as he's happy, that's what matters most.

 

[believingjesus]

Jshet, I am so sorry you and your son have so much to deal with. I feel sometimes my son and I have too much to deal with too and sometimes it is overwhelming. I'll always listen if you need a friend. I never know much but I understand how you must feel. I wish we could take their place and take it away and I know you do too. You can message me anytime.

 

[jshet]

Thank you so much. I understand what you mean. My daughter is in her 3rd year of college, and husband works a lot also. I think we have we have a lot in commn. Its nice having somene who gets it. I feel the same. Messange me anytime. We both are gonna have good days and bad. As long as there are more good, i think we will be ok.

 

[Melissa75]

Jshet,

I typed up a reply last night on my phone and lost it due to my twitchy thumbs. Grrr.

I'm so sorry you and your son have these difficulties to deal with. So many allergies and the sensory texture issues must make for a really hard road. Also, I remember having a bleeding disorder exchange with you once, and learning that your son's is much more intense than my VW type 1.

What are the seven foods your son is willing to eat? I ask because I'm kind of an excessive omnivore. I try everything I can. Maybe in my repertoire of foreign and domestic foods, I can suggest something that is in the family of something he likes, but slightly different. That said, if he is very adamant about not trying new things, then, for example, a Lychee fruit may never make it to his mouth. (I was going to use as my example a recent discovery of crazy calorie density:

http://www.mysnacks.us/haldirams-cl...EXNmKYQ1UBzHCws4tu0UmdtGbqILj-QBMAaAt3R8P8HAQ

but it has dairy. Wow, this is hard.)

I tried to brainstorm as many ideas as I could, and I suspect these have all been ruled out as for one reason or another, but here goes:

Could you get him enrolled in a fecal transplant clinical trial (there are non-invasive capsules to ingest orally that are being tested). This could possible reduce intestinal inflammation and improve his calorie absorbtion?

Have you looked at food allergy immunotherapy? National Jewish in Denver and, I believe, a few other places are working on getting kids with deathly food allergies to be able to eat the food in question, starting with carefully monitored ingestion of grain-of-sand size portions. But this wouldn't work for an eosinophilic esophagitis type of allergy.

Appetite stimulants -- some people here use Marinol.

Cooking and gardening -- I'm just throwing this suggestion out there. Maybe working with the foods could breed a familiarity that leads to trying something new, an eighth food, perhaps.

I really hope the hospital can come through for you with a higher calorie formula. ((hugs))

 

[jshet]

Hi Melissa75. Thank you for responding. The 7 foods he will willingly eat are scrambled eggs(without milk), pasta (plain), corn chex cereal (dry only), torilla chips, french fries, popcorn, and green beans. The only other thing, i dont count as food is bananna popsicles. No other flavor, only bananna.
we will be doing the stool tests next wednesday because he doesn't have school, and i need to take them to the hospital thats about an hour away. They said it will take 10-14 days for results.
I spoke with the dietician, and as far as a new formula, there is not another to try. This one is it. They are mailing me out a can of duocal to add to his formula. We have increased tube feeds to 12 hrs, but may end up having to go back to continuous becsuse his rate is only 100 ml per hour because any faster makes him sick.
have bever geard about the fecal transplant clinical trial, but will mention it. Food immunotherapy has never been brought up, but is also worth bringing up.
oh, we did try medications to stimulate his appetite, but tgey did not help.
thank you so much for the great information. I so appreciate it. They now have a feeding therapy for kids with autism to help increase the foods they will eat. I wish this was available when he was young. I think it coukd have really helped.

 

[Melissa75]

I'm not sure if there is a clinical trial happening in fecal transplant therapy, but there is a lot of research and buzz about it.

I hear you on the feeding therapy. My friend's son went through it and it did help. I used to have them over for dinner a lot when he was a toddler, so my friend didn't have to cook a whole meal that got rejected. She could try stuff with him here, and then go home and re-feed if necessary.

I'm going to keep brainstorming, but the first food that came to mind is tostones aka patacones. Fried green plantains. They taste like a french fry met a tortilla chip and maybe a casava too, no banana sweetness, a little bit of a banana look.
They're meant to be dipped in a garlic-lemon-oil emulsion, but you could skip that part. I could drink that part.

I buy the Goya frozen ones and I deep fry them in light olive oil in a good pan, using a thermometer to keep the temp around 350' and making a general mess. You may be able to soak them in salt water as directed, and get away with brushing them with oil and baking them. Then sprinkle with salt.

Third item down: http://www.goya.com/english/product_subcategory/Frozen-Foods/Plantains

 

[jshet]

Thanks Melissa75. Going to give plaintains a try. He is one picky kid. Sooner or later he will hopefully add a few foods that are higher calories. In the neantine, we will add the duocal and see if thst helps.
take care, and thanks again.

 

[Aboveallislove]

Hey mom,
Sounds like you got some great advise. I just wanted to throw out another idea: Have you read any of Ellyn Satter's work? She's a feeding expert and her team includes a former CF dietitian. Anyway, her book Child of Mind would be a great one to read. It is a specific approach to feeding which could help with food acceptance. If you are interested I can give more details. She has helped with 4 different issues with our son and has always been spot on!!! And while he isn't autistic, he does have sensitivity issues and doesn't have many acceptable foods either but slowly the approach is working to expand is repoitire. Hang in there!

 

[jshet]

Hey, thanks so much. I am going to order that book tomorrow. So glad it has helped with your son. Any thoughts are welcome and appreciated.

 

[Kristan]

My child is relatively healthy (no cf), but it took me awhile to figure out he has environmental allergies and chronic lung inflammation. After trying conventional medicines/inhalers for over a year, I took him to a holistic doctor. He said no dairy, even though the allergist said it was not a factor, and put him on probiotics to repair his inflamed gut. He also does homeopathic drops to help with all his allergies. My son is doing much better...less anxiety, more energy, and a better sense of wellness. I told him the allergist said dairy was fine and he told me about a baby that was failing to thrive despite working with many western doctors...the holistic doctor determined the child was sensitive to corn, which is in many formulas. Not to make the food choices more limited, but maybe there is a food sensitivity that is being missed. Also, maybe it would be possible to treat the inflammation with liposmal glutathione through the feeding tube. Just some thoughts...I have been struggling with lung issues my whole life and it always makes me feel more in control to compile a list of alternative ideas to keep in my back pocket.
I am sorry you and your son have to struggle with these issues...hope you find solutions

I hope they can

 

[jshet]

Thanks Kristan. I have thought about the possibility of another sesitivity, but we are seriously running out of foods for him. I am hoping the duocal will be helpful to him. I have not really ever given much thought to a holistic doctor, but it is something for us to think about.
i am going to get the stool tests done to rule out chrons. I don't think he has this, but i think the doctor just wants to be sure before moving forward.
after we have a better picture, i think then we can come up with a plan to try and get things headed in the right direction.
thank you again.

 

[Mrkdale]

I too face some significant food challenges, in fact the allergies you listed are the exact same as mine, but I don't have all the other challenges you are dealing with. Wow, you have your hands full.

I did find something called Neocate, a hypoallergenic meal in powder form. I was thinking you could maybe mix in some bananas and maybe some coconut bases ice cream (non dairy) and make your own banana pops.

Nutricia, the company that sells Neocate in the U.S. will send you a large sample box if you call them so you can experiment for free.

Neocate.com

Good luck!

 

[jshet]

Mrkdale, wow, thank you so much. I did not know that product even existed, and i am doubting our dietician does either. I would think it would work well for him since his formula, (the only one he can have), is neocate jr. I am going to call them Monday morning, amd request a sample.
thank you so much again. You don't know how happy i am to learn of this product. I so appreciate you sharing it with me! Have a nice weekend, take care.

 

[somatodrol]

hello!!
You can use Somatodrol. It is a natural product for muscle gain. Somatodrol is a dietary supplement which helps to gain muscle mass with 50% faster than the other supplements in the market.

 

[Lynnfield mom]

A few thoughts....

Hi, this is my third go at reply....lost my first and second - I am a newbie here. Let me add my sympathy, I "hear" your frustration. You are smart to ask for ideas/help.

A couple of things: 1) Neocate is for infants and I am 100% certain that your dietitian is familiar with the product since you are using Neocate Jr. Neocate has 20 calories/oz vs 30 calories/oz in Neocate Jr. Your dietitian has not directed you to Neocate as it is lower in nutrient density than the product you are already using. 2) Powdered formula such as Neocate Jr can be mixed into a more concentrated solution. So instead of 30 calories/oz you could ask for directions to make it 35 or 40 calories/oz. You are essentially doing this by adding the Duocal but you are adding another product to your lives. Generally, to increase calorie intake by tube feeds you either have to increase the run time or increase the caloric density of the formula. I would try changes in baby steps - increases in time by 15 minute increments and increases in calorie density by 5 calories/oz steps to a max of 60 calories/oz. 3) Have you tried MCT oil? It is tasteless, odorless, adds 100 calories/TBSP and requires minimal enzymes for absorption. Alternately, you could use a lot of coconut oil (high in MCT) in cooking and drizzle it on foods - it is the same 100 calories/TBSP. 4) there are a couple of other products in the Neocate line FYI (I do not work for the company!! but just in case your dietitian is not aware of these) Neocate Jr. with Prebiotics - then you wouldn't have to think about the whole fecal transplant thing and Neocate Splash - these are clear liquid juice box type beverages that are the same hypoallergenic, elemental nutrition as the Neocate Jr.; served ice cold they might be an alternate that you son could accept. 5) In answer to your actual question - alternate formulas: Vivonex - similar to Neocate in that it is elemental, powdered - so it can be made as dilute or concentrated as desired; it does not offer any clear advantage over Neocate Jr. Tolerex - lower in carbs and higher in protein and contains glutamine and arginine which are conditionally essential amino acids that may be beneficial for your son - honestly, I would try the other options described above before switching formulas. 6) as far as hang time - there is no reason that Neocate formula can not hang for 8 hours if mixed carefully (clean equipment). And this is an elemental formula so it really requires minimal enzymes for absorption, it would be absolutely fine for your son to have enzymes at the start and completion of an overnight infusion of Neocate Jr. I would encourage you to try overnight feeds and allow your son to have the day time to have an oral diet or at least further supplement his current routine with some overnight feeds. Realize that at present, as you have described it, your son's routine of day time tube feeds competes with his oral diet and for a picky eater - that is doom.

I hope this is helpful. good luck!

 

[jshet]

Thank you both. He actually had a gi appointment yesterday. We are increasing the feed time with adding the duocal. He did say we cannot increase the concentration of the formula because it could actually cause dehydration. He said that he and the cf team do not know why he is having such a hard time gaining weight. He said my son is a difficult case, and he is not making any other recomendations at this time. He will see him in 3 months.
he said they would like for him to gain 40 lbs., but know this is not realistic so they want to take him as far as they can with his weight, but they want it to be healthy weight.
i am going to try the cocconut oul. I will not be able to out it on his food, because he will know, and will not eat it , but i can try cooking with it. I will have to learn more sbout somatodrol, i have not heard of this yet. We have tried the neocate E028 splash before, and he hates it. We tried all 3 flavors, in every temperature, and its never going to happen. I can't say as i blame him, i tried it and was not impressed.
We are just gonna keep moving forward and do our best to increase his weight with the options we have and are able to implement with him and see where we are in a few months. Thanks again for all the replies and great ideas.

 

[Lynnfield mom]

Grrr to the GI doc - he needs to think outside the box...

Hi, I would pose this to the GI doc: A concentration in the formula (like 25 - 50%) will not cause dehydration if you make sure you are providing adequate free water from flushes and orally. There are formulas called 2 cal (the equivalency is 60 cal/oz ) afterall! Does the GI doc not realize the duocal is concentrating the formula? but with only carbs and fat (no protein). The GI doc is right that you do have to pay attention to total fluid intake with a concentrated formula but it can be done and not too difficult especially since your son takes an oral diet and drinks water.

I'm not surprised that the Splash drinks didn't go over well, they say to offer it many times to gain acceptance, but the drinks don't taste like any juice or juice drink you've had before, so it tends to be a disappointment.

Good luck to you and to your whole family. I love your statement about moving forward and doing your best - that's all any of us can do. Change happens little by little and inching up on amounts can make a big difference so keep up the good work, your son is lucky to have you.

 

[Beaz]

Have you tried 2Cal HN by Abbott? My son gets that overnight for about 8 hrs, but only takes enzyme at the beginning and we put it all in the pump at once, never had a problem with going 8 hrs.
We at one time also used some kind of high calorie tasteless liquid food additive that was marketed for cancer pts who couldn't eat, but I just can't recall the name.
Wish you the best with this frustrating problem.