New to PEG - medications/ supplements questions

[Honey2468]

Hi all -
Hoping to gain some insight for my person living with ALS. Their tube will be placed very soon. Looking at this as a positive addition as swallowing is difficult, especially pills and liquids. Meeting with doctor soon about many of my below questions, but we are eager to have some answers ASAP so I figured I could ask this community for answers based on their experiences…

Currently they are on Riluzole tablets, Radicava ORS, Nuedexta capsule, plus taking various supplements in pill/powder form. Will they need to switch the riluzole/nuedexta prescription to a liquid form? Are powders okay to mix with water and send through tube?

Also curious what the best route for taking supplements would be moving forward - looking into MaryRuth’s liquid and other similar types to put through tube.

Lastly, any tips for hydration? Pals lives in a hot climate and with summer here I was thinking something like pedialyte would be super helpful to put through the tube as well. Any other hydration tips are greatly appreciated.

 

[lgelb]

I've attached the do-not-crush list, Honey. Some meds can be crushed. Tablets with coatings to last longer and capsules generally cannot. A couple of notes -- Nuedexta is not crushable nor available as a liquid, though one of its ingredients (DMX) is. It's not on the list only because it wasn't around then.

Riluzole tablets can be crushed, but some of the effect is lost due to loss of powder. I would ask about an rx for the liquid, which is available. The Radicava ORS form is designed for that purpose.

Supplements may be available as liquids depending on what they are. I would try to re-evaluate what is really helpful since they all take precious energy to metabolize. Generally, again, capsules and coated tablets will not work.

Nothing beats plain water for hydration, but yes, you can use Pedialyte in a tube. I would not, since it's basically sugar and that is hard on the GI tract, especially long term. Our bodies were not designed to process that as a daily diet. Many of us do not recommend corn syrup-based tube formulas like Isosource for the same reason.

For much better nutrition, which can be mixed with as much water as you need to, I would look at a "whole foods" formula like Whole Story or blend soft real food.

 

[Jhettinger]

RE; NUEDEXTRA
II TEAR them in half

 

[Marieb425]

My husband had a PEG placed last August. He isn’t able to eat/drink anything by mouth anymore and he gets 6 pouches of Liquid Hope a day, plus water. I sometimes give him Liquid IV if I think he needs a little more hydration (edited to add - this is an occasional thing, not even daily). He gets Radicava ORS via the tube and I’ve been crushing other medications and those go in the tube diluted with water. I wasn’t aware about Riluzole losing some effectiveness when crushed so I might ask for the liquid RX.

The Liquid Hope takes a little more prep time vs. the other formulas (it’s thicker so I open each pouch and add some water and stir it up to thin it) but I’ve found it’s worth it because he tolerates it well and doesn’t have any GI upset.

He was firmly against the PEG, but I’m so glad he decided to get it. Watching him struggle to eat/drink/swallow medications for so long was awful.

 

[Nikki J]

Marie I think a lot of PALS don’t realize how traumatic it is for their families to watch them struggle. I still have PTSD from watching my mother and my sister. Every time I read posts about it it brings it back and my sister got her tube 10 years ago and has been gone 8 my mother was longer ago. I am glad the liquid hope works well

 

[SeaGunny]

Pills - Medications - switch to liquids where possible. For other pills, get one one of pill crushers available at CVS or Walgreen pharmacies. I did not even bother to dust the one I used out.

Pills and medications can be mixed with nutrition (my Palls was on Kate Farms after trying 2 other brands which seemed to upset her digestive track.)

OK, try and set up a feeding and medication schedule the CALS can live with as well as the PALS.

Our schedule was Feedings at 10 AM, 2 PM and 6 PM
Medication and Hydration at about 9 AM, then at 12 noon, then at 4 PM and then 10 PM

The 9 AM hydration was also a Tylenol medication point and PALS was given 3 ounces of water and 1 ounce of liquid Tylenol (or substitute) using syringe.
10 AM, was AM medications plus 11 oz of nutrition (1 can) plus 12 oz of water (one may have to adjust this to tolerance of patient) using gravity drip
12 noon was usually a straight 4 oz hydration using syringe only/
2 PM was back to 1 can of Nutrition plus 12 oz of water (sometimes left over medications were added)
4 PM Hydration of 4 oz of water - liquid Tylenol if requested (at any time PALS was being fed or Hydrated)
6 PM 1 can nutrition of 11 oz and 12 oz of water.
10 PM, balance of daily medications were provided via the 4 oz of water.

Liquid Tylenol (that was requested) was given anytime the treatment called for hydration. Tylenol pills were crushed along with any medications to be administered during a feeding session.

Little makeup jars (glass with plastic caps holding about 2.5 - 3.5 oz, were used to hold any pills and were placed in one of 3 jars for THAT DAY. These pills were only crushed as needed and then mixed with some of the patients dedicated hydration of water, which was then mixed with nutrition and remaining water save for about 1/2 to 1 oz of water for purging the lines at the end of the feeding.

As the CALS, I administered ALL of these and the 10 PM was the last of a 24 hour cycle. I Had hired hands come in to assist at 10 PM, bring them up to speed and (depending on the assistance) would either stay up till midnight or later and have them waked me at 8 AM when they left. I had to show them how to put PALS to bed, what to watch for and help in changing clothes, toileting, washing hands. As a matter I fact, I slept in a recliner near by in case they slept through the BiPap Alarms or the distress of the PALS.

My PALS passed away last November and it has been over a year since I have even slept in a bed.

 

[Barryrub]

My wife had a PEG placed on May 31 and started using it exclusively 4 days later. She quickly mastered the technique ( I learned as well!). It takes less than 10 minutes for each feeding. She's used a 350 calorie and 500 calories formula and is doing fine on the higher calorie one. All of her meds are taken through the PEG; liquid capsules are opened an poured in water through the PEG; most pills are crushed, diluted in water and put through the PEG. She has had a bit of reflux on a few occasions but nothing serious. She was advised by the dietician to use a full syringe of water before and after each feeding to stay hydrated. She aims for 2000 calories per day and probably averages around 1800-1900; not bad. She is very thin and had lost a lot of weight but is maintaining her "lower" weight successfully so far.

The placement of the PEG was noneventful, about 45 minutes. We were advised to keep it clean, use alcohol wipes to clean the syringe and tubing, wear a glove when administering the formula, etc. Sounds much worse than it is in reality. Of course she misses food, ice cream etc but has accepted her new reality. Hope this is helpful!