Migraine after PEG

[Emanol]

Hello,

My father had his PEG inserted recently (January 4th). After the surgery, and in these last days, he has been suffering from recurring headaches. He is now vomiting his meals and suffering from migraine-like symptoms. As we wait for the doctor, I was wondering if anyone had experience with this type of reaction to the PEG tube or if you could suggest possible ways to deal with this? Thank you so much for your help, as usual!

 

[Nikki J]

He didn’t have spinal anesthesia? I wouldn’t think so?

new meds?

timing of headache and vomiting related to activity position or feeding?

 

[lgelb]

My first thought would be that maybe initially it was dehydration/stress after the surgery, and now could reflect sensitivity to an ingredient in the formula, especially if it's a traditional corn syrup brand. These are chock full of chemicals. You might try blending real food and using that in the tube as kind of a test -- something simple like broth to start with.

 

[rnewton60]

I agree with IGELB, try tral food and broth is a good one to start with. See if he has a reaction to that. I had no issues with the food supplements but that proves nothing for you.

 

[Emanol]

Thank you everyone for your suggestions!

So we basically followed through and my dad much prefers normal food. It's gotten to the point where he gets dizzy simply by seeing the formula, even h without ingesting it. A previous formula that was tried also was very unpleasant to him. He has always had an upset stomach so it does not surprise me.

However, we called the doctors and they are very against the idea of completely substituing the formula for "real food" because they are afraid he might not get enough nutrients. For context, my dad has not experienced any weight loss since the start of his symptoms, but I think it's a preventive measure.

I was wondering if there are informations about ways of getting enough nutrients through a rich diet without using these types of suplements. I saw some recipes on the forum, but was wondering if anyone has a more comprehensive guide that works for a long period of time that we might be able to share with the doctors. Is it even possible?

Thank you again!

 

[affected]

I would be going by how your dad feels and keeping his weight up.
You can probably google this and there are some really active facebook groups for people living with pegs over long periods of time.

 

[lgelb]

The statement that he cannot get enough nutrients via blended "real food" is ludicrous, considering that's what most living people eat. Liquid vitamins and supplements are also widely available if needed. Of course, you follow food by flushing fresh water through the tube.

A recent study found no clogs in PALS using blenderized diets, and although I think this paper is overblown in terms of process, it makes the points that blenderized tube diets are widely used and well tolerated (and their use is growing as people realize the distance between commercial formulae and real food that got them this far).

As Tillie said, there are online groups everywhere, including the Oley Foundation, many of them parents of children who are still growing, who will testify that the nutritional concerns are bogus if you think about nutrition just as you normally would and because ALS is a disease of hypermetabolism, don't spare good fats and proteins. Meat can be pureed. Eggs, nut butters, non-dairy milks if he is sensitive to dairy, canned fruit, are just a few examples. Search on home enteral nutrition and blenderized tube feeding.

It really doesn't matter what the doctors think, but if you want to educate them, you can send them these URLs and suggest a brief search in PubMed -- I couldn't possibly list all the papers. You can also find a registered dietician experienced with real food tube feeding if you want that support, but the concerns I saw in the literature around nutrition (and likewise concerns about contamination, which are pretty silly as this paper shows unless your kitchen is a cesspool) were essentially low-quality meta-analyses, driven more out of fear of change and perhaps industry grants than an evidence base.

I put the burden of proof in the other direction, so long as you adapt your recipes to his own tolerance, energy and weight. This is an N of 1 enterprise, just as what you thrive on was never what your next-door neighbor does.

Couple of papers showing weight gain/improved tolerance on BTF when switched from commercial formulae:

Blenderized food tube feeding in patients with head and neck cancer - PubMed

BTF effectively mitigated weight loss, GI symptoms, QOL scores, and total energy intake in this group of patients with HNC who received tube feeding for 6 weeks.

pubmed.ncbi.nlm.nih.gov

Blenderized Tube Feedings for Adult Patients on Home Enteral Nutrition: A Pilot Study - PubMed

BTF was found to be safe and effective in promoting weight gain in adult participants who required HEN for at least 6 weeks.

pubmed.ncbi.nlm.nih.gov

Hope this helps.

 

[Firefighter58]

First of all did your dad get the tube because he needs it right away or because he may need it in the future I got mine 5 years ago because I may need it in the future, I still eat regular foods and drink the normal way, I take all my meds twice a day via the tube because they taste bad. Secondly I take a lot of medications proscribed by my doctor and the ALS doctor who work in concert with each other That seems to work very well. When I first got the tube I was prescribed a formula that I did not like so I was taking off that and haven’t used it since.. I find my Two doctors advice for the last 8 years is best for me.and my weight has not changed.