Pill Drama And Desperation

As of 10pm last Thursday night we were convinced we’d be heading to the hospital on Friday with Jack to have an NG tube placed. We were once again struggling with getting him to take his medications. We tried everything we could think of, including holding him down and trying to force him to swallow. It was fucking terrible!! The oncologist talked to Jack on the phone and sounded defeated, as well. Jack talked to his dad on the phone, too. We were all very, very depressed.

We gave up and went to bed, resigned. I laid down with Jack and said if he’d try again, I’d give him any toy he wanted. He declined. Then, about 10 minutes later, he said he’d changed his mind about the tube and wanted to try again but go back to using the nutella. We got up and went to town on the nutella. He struggled to get it down but was finally able to after 10-15 minutes and we all breathed a HUGE sigh of relief. The struggle was over for the night!

Nutella is not a great solution – since it contains dairy – but it’s the only solution we have at the moment. I let Jack know that he could indeed pick any toy he wanted but he needed to remember that he has to keep trying and I can’t keep buying him toys every time he has to take meds. He understood.

Jack got his toy on Friday. He picked a $10 pack of zombie action figures – not the $100 lego set I was worried about. Maybe I CAN afford to buy him something every time he needs to take a pill. 😛

Pill taking has been relatively smooth since then. We were all relieved to have a fairly easy weekend. We got the special pill-taking cup and some mini m&ms to try, but that was a complete disaster. So chewing pills in nutella it is!

Here we are at Monday again, though, with the whole eight pills that need to be taken tonight. We’re meeting with the hospital’s child life specialist this afternoon to see if she can work some magic and prevent any further issues from developing. Maybe she can teach Jack how to swallow pills – I’m at a complete loss as to how to do that! My level of confidence on this has seriously sunk and I’m fighting not to feel completely defeated about it all. I am (understandably, I think) worried that the nutella will stop working or prevent Jack from receiving the full benefit of his medications. The case manager was nice enough to tell me about a study that said that kids who don’t consistently take their maintenance meds have a 42% chance of relapse. That didn’t help me any.

Please wish us luck. We need it.

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Comments

  1. I bet the specialist will have some ideas to help you. For whatever reason, it seems like I am totally unequipped to teach Sam how to do some of the most basic things. He never could get the hang of drinking from a straw no matter what I did, but his speech therapist had him doing it in SECONDS. It is, of course, possible that Lisa is just magic, but I think it’s a combination of her 1) not being me and 2) having extra skills because speech pathology involves so much about using the muscles in the mouth. So I think someone with training will be able to help Jack swallow his pills. Heck, if the specialist can’t do it maybe you can find a speech therapist.

  2. Luck, luck, luck! And (((((hugs))))))

  3. Oh, Crys, honey, I wish I could help. All I can do is send love and prayers and good juju across the miles. Much love and (((hugs)))

  4. My parents, grandparents, aunt, uncle, cousins,……….(so many people) tried to teach me how to swallow pills for years and I could never get the hang of it. I always gagged on them. When I was 12, I finally figured out how to do it. I put the pill under my tongue. I know it seems backwards, and I don’t know anyone else who does it like that, but for me it was the magical solution. Under the tongue, big drink, pill goes right down. I still do it that way. It might just take trying something a little unconventional like that (putting it in the side of his mouth?) to make it work. Hopefully the specialist will have a technique that works.

    Sending lots of prayers for all of you.

  5. So, it must run in the family, both Cubby and I sucked at taking pills growing up. What I did and taught Cubby, is fill your mouth up with water first by tilting your head back, and dropping the pill in and swallow quickly. I don’t know if his age that will work, but it’s worth a try. Good luck! Sorry the specialist didn’t have any help. 🙁

  6. First, can the pills be crushed? If so, walgreens sells a blue pill crusher that is magic & then we
    Dissolve the powder in hot water & mix it with Bolthouse smoothies (Safeway & target )
    Our son was 4 when he started his med regimen, he can’t swallow pills(& the meds taste awful) & we tried everything…. Almost two years later he’s branched out to V8 smoothies when I can’t find the others – but bribery is still sometimes needed. He too went from seemingly healthy to hospitalized in what seemed like minutes in Nov 10. He’s now in first grade & has managed to stay out of the hospital for 18 mths — however last year his dad was diagnosed with leukimia. If you’d like to chat, or compare notes, we’re in sf.

  7. To teach our son to take a pill my husband had him put milk in his mouth and then put the pill in and then start drinking milk and so it all went down together. Now he does it with water (since you said dairy wasn’t a good option maybe water would work). His pill is fairly small so if Jack’s are bigger maybe you could cut them in half? Once he gets one down and sees that it is easy perhaps it will not be so difficult to get him to take them. Could he eat them in applesause? (Just thinking something thicker so he won’t notice the pill in there)

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