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Wednesday, May 21, 2008

Well, they didn't lie

[an incoherent rant written by a sleep-deprived parent of a child in pain]

After Yonah's tonsils and adenoids were removed the doctors told us that his pain would probably peak about a week after the surgery.  The sum total of the pain management tools they gave us was the kiddie version of Tylenol to be administered every four hours. 

Oh.   My.    G-d.

Almost immediately it became clear that the Tylenol (actually called Acamol here) was not coming close to dealing with Yonah's pain, so we asked for and got an additional prescription for Optalgin (Metamizole) which he had been given while he was in the hospital with good results.

For a couple of days that was keeping him comfortable, but each dose would wear off about an hour or so before it was time to give him more.  Zahava is a stickler about such things, where I am the kind of father who would go out and score my kid some heroin if I thought it would take away his pain!

Needless to say we've been following Zahava's lead on the whole dosing and scheduling of the pain medicine thing. 

But over the past couple of days (a week after the surgery, just like they promised!) the pain has increased exponentially.  Yonah has been flipping out every every two hours (day and night) and screaming:

"Ima!, Abba!... my ears hurt!... my throat hurts!... make it stop!!!

I'm not doing it justice here... but trust me, it's truly heartbreaking (especially the part where the room gets icy cold, his head spins around and he starts jabbering in Latin while vomiting green stuff!).   Add to that the fact that Zahava and I have had the equivalent of one full night's sleep each for the past two weeks, and you have two parents whose parenting (and coping) abilities are diminishing at an alarming rate.

He is drinking and very occasionally allowing us to give him some ice cream... but only when the meds are working, not for pain relief!

Zahava took Yonah to the hospital today to see if there is anything else we can do for him.  The surgeon looked him over and told us that everything looks fine... no infection and no bleeding.  However he noted that Yonah seems to be producing more scabbing than most kids, which probably accounts for the increased pain.

He gave us a new prescription for the Optalgin and increased the dosage and frequency ever so slightly.  But other than that, he said we'd just have to wait it out.

I'm giving this one more night and then I hit the streets looking for something stronger! 

(Home remedies are strongly invited.  Seriously!)

Posted by David Bogner on May 21, 2008 | Permalink

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It's been a VERY long time since I had mine taken out, and I did very well, but I seem to remember things like an ice-pack wrapped in a cloth on my throat, and a heat pad on my chest. (I think the heat pad was because we associate warmth with comfort, and to keep me from crying about a cold throat.)

I see some advice online for Popsicles? That might work better than straight ice creme, although you wouldn't want any acidic flavors.

I fear that him yelling/crying may be inflaming the throat a bit more, as useless as that is to know.

Posted by: Foxfier | May 21, 2008 12:03:41 PM

When a friend of mine had a painful joint condition and was awaiting surgery, she received a prescription painkiller that, according to its accompanying pamphlet, could damage the liver if taken too often. She decided that under those circumstances she preferred not to take it at all. So she looked for natural pain remedies on the Net and found the following one, which worked for her:

1/2 teaspoon ginger powder
1/2 teaspoon turmeric powder
Juice of half a lemon, fresh-squeezed
1 tablespoon maple syrup

Bring two cups of water to a boil. Add ginger powder and turmeric powder. Stir and simmer for ten minutes. Strain into large mug. Add lemon juice (which will cause a dramatic color change in the mixture that's really cool to watch) and maple syrup. Stir well. Drink at any comfortable temperature.

Refua shlema to the little guy.

Skritches to Jordan and Lulu, too.

Posted by: Rahel | May 21, 2008 12:16:56 PM

P.S. I realize that the lemon juice is acidic, but it appears to be well diluted, and the maple syrup may cut the acidity even more.

Posted by: Rahel | May 21, 2008 12:20:06 PM

Two suggestions about post-surgical pain:

Ask your doctor about alternating between aspirin and Acamol. I would try to drop the Optalgin, if alternating aspirin and Acamol works. The Optalgin is really powerful stuff with side effects to prove it.

If all else fails, a benign treatment for post-surgical pain is "microcurrent stimulation" as supplied by a device like the Alpha-Stim 100. It will also decrease healing time. You might want to read about it on www.alpha-stim.com. It is a great thing to have around the house for all sorts of pain, but is expensive. I hold no financial interest in the company.

HaShem imchem

Posted by: jerry | May 21, 2008 12:43:13 PM

Analgesics are notoriously idiosyncratic. In other words, what works well for one patient may not for another. You might want to try children's ibuprofen (it's in syrup form). It's main advantage is a longer effect and needs to be given only every 8 hours.

Posted by: quietusleo | May 21, 2008 1:04:54 PM

Whoa! I hope this pain passes quickly.

Would the steam of a hot shower be soothing?

And maybe a little nip of something for you and Zahava (not at the same time of course; someones gotta watch Yonah).

Refuah Shelamah.

Posted by: Baila | May 21, 2008 2:00:18 PM

I think that my darling little one (one year young) may have adenoids, but right now I'm frightened to ask the doctor (no thanks to recent postings here on this topic....). Could I just leave well alone and hope they'll sort themselves out? After the brave way Yonah went through the whole hospital bit, if he says it hurts I'll believe him.

Posted by: asher | May 21, 2008 3:18:10 PM

Refuah sheleimah to the little guy!

Posted by: tnspr569 | May 21, 2008 4:00:37 PM

Refua Sheleimah!

Pain after tonillectomy is a little tricky.
Tyelenol is best because it does not promote bleeding like medications in the anti-inflammatory group ( Ibuprofen etc..)
Aspirin is not to be given to children ( has been contraindicated for years)

some things i read:

- some people give a small dose codeine (should ask his MD)
- ice collar around neck ( frozen peas in a plastic bag or cloth)
- cool mist humidifier near bed at night
-chewing gum ( helps ear pain)

Refuah sheleimah again!

Posted by: David | May 21, 2008 4:24:12 PM

Foxfier... Sadly, we have a kid with sensory issues here so anything like heat or cold on the skin is a non-starter. The popsicle thing has already been tried with limited success. Thanks for the good thought though.

Rahel... When I saw your second comment pop up so soon I thought to myself "Oh, she must have forgotten the 'eye of newt' in the recipe." :-) Seriously, thanks.

jerry... I think aspirin is out for a four year old (unless they have changed their thinking about Reye's syndrome), but the electro-shock thingy sounds like fun (even if it doesn't necessarily help him). It would be like a video game for us grown-ups! :-)

quietusleo... OK, we have two docs in conflict here. David (above) says that ibuprofen can cause bleeding. Then I'd have to put a tourniquet on his neck, right? Help!

Baila... I'm sure the steam from a hot shower would be very soothing. But as soon as I got out I'd hear him again. But good suggestion about the 'nip of something'... I'll have to mention that to Zahava. :-)

asher... You have no idea. This kid doesn't cry when he falls and splits his knee upon. So if he's screaming in pain, I can't imagine what he must be feeling.

tnspr569 ... Thanks.

David... You and Quietus Leo (above) seem to be at odds over Ibuprofen, but I like the idea of codeine. Wait... Oh, I see... you meant for Yonah. Yeah, I guess that could work too. :-)

Posted by: treppenwitz | May 21, 2008 4:49:38 PM

Yes, Ibuprofen can increase bleeding, but some people still give it. I looked up Optalgin (not used here) and it seems to be in the same family as Ibuprofen.

I would ask his surgeon as he may be sufficiently "post op" that that he / she would be ok with Ibuprofen, which you can alternate with tyelenol.

Codeine for you?.... thats would be like decaf!


Posted by: David | May 21, 2008 5:05:08 PM

If he has sensory issues and is now crying in pain, he must be in agony. Poor kid. Hope he feels better soon.

Posted by: littlebirdies | May 21, 2008 5:08:47 PM

Refuah Sheleimah to Yonah. FWIW, when the kids aren't feeling well I can sometimes get them to relax by blessing them. Been doing it for so long my son sometimes will grab my hand, put it on top of his head and ask for it.

Definitely not a long term cure, but if it helps him to relax...

Posted by: Jack | May 21, 2008 5:54:55 PM

After a week we were able to do the alternating of the IBUPROFEN (not aspirin) and Acamoli. This was only after the post-op visit where our ENT also saw that he had started scarring, and with her OK. Worth it to ask. Other than that, wait it out. LOLLIPOPS are good, cuz they are not invasively cold....as long as you can keep him from biting it; as is Jello or any sort of Maadan. At this point, we were even able to give him a bit of soft brocoli, which he has since to eat........the whole taste bud change thing.

good luck and hang in there. I agree that you should instead be looking for remedies for yourselves! haha

Posted by: EmahS | May 21, 2008 5:59:01 PM

This is not the same but out Middle Daughter has febrile siezures so anytime a fever was starting we alternated between Tylenol and Kids Motrin (don't know of its availability in .il) to keep the fever down and avoid a siezure under the careful guidance of her pediatrician/Zaidie. The same strategy might help with pain managment.

Refuah Shelaima!

Posted by: Aharon | May 21, 2008 6:29:55 PM

Simply. Overwhelmed. By sheer exhaustion. And by the kindness in everyone's remarks....

The surgeon, after admiring his handiwork and assuring me that there isn't any hint of infection, said that Yonah simply is a "slow healer." Some kids follow the scheduled healing process, others -- not so much. Yonah, lucky us, falls under the "not so much" category. He also seems to have more scabbing than your average patient (again, lucky! us)... And his sensory issues multiply the negative aspects of the experience... oh.... approximately EXPONENTIALLY!

Once again. Lucky. Us... [NOT!]

Aspirin and ibuprofen remain off limits by the surgeon (believe me, I asked!) as with the current state of the scabbing we are not yet free from the danger of bleeding....

Optalgin may have similar properties to ibuprofen in other ways, but as explained to me by the surgeon is 1) non-sterodial; 2) non-anti-inflammatory; and 3) non-narcotic.

Codeine, for reasons I still don't fully understand, is simply not and option (checked with our pediatrician and the family ENT and they both confirm this). In fact, when I asked about codeine, he chastised me for asking him to "poison" Yonah just to make him comfortable. (His English was not fantastic so I am assuming that was simply a poor choice of words...)

Basically, the surgeon's assessment was:
1) although much more extended than is optimal (ya think?!), the healing process is moving along as expected
2) he IS healing, and the operation was successful in it's goals
3) there is nothing more to do, 'cept wait it out
4) based on the progress to date, we should expect another week of "the same"
5) Yonah needs to be seen again next Wednesday to reassess the progress

When I asked if we could increase the Optalgin, the surgeon's initial response was no. However, a nanosecond later, Yonah's 9:00 a.m. dosages of Acamoli® and Optalgin wore off. (Note: it was only 11:15 a.m.) Yonah began tugging at his ears and swinging his head violently from side to side while wailing "IT HURT ME! IT HURT ME! IT HURT ME! IT HURT ME!"

At this point, I simply began to weep.

Big. Racking. Tear-soaked. Sobs.

"This. This is what my husband I face almost every two hours from 9:00 p.m. until 7:00 a.m. With. NO. LET. UP.... We can't make it another week. We can't make it another night. I know I didn't go to medical school, but it seems to me his little pain-racked body can't heal if he CAN'T SLEEP!"

Apparently, Yonah made quite the impression, cause the surgeon very quickly changed his tune. Instead of three doses of Optalgin, we can give Yonah four doses, and in extreme/limited usage, can give him up to 5 doses in a 24-hour period.

With regards to all the food suggestions: he can not have anything non-liquid or viscous. Nothing, not even a fleck of solid. And nothing acidic -- no orange, lemon, or tomato juices. Especially given the delayed recovery period.

As to the various treats you've all suggested, you are all welcome to come over! We have a fridge well stocked with coffee, vanilla, and strawberry flavored yogurts; chocolate puddings; sour cream; whipped cream; grape juice (we even sprung the equivalent of a mortgage payment for Concorde grape juice cause he -- supposedly -- likes it better); apple juice; and real/bottled chocolate milk. We also have a freezer full of ice-pops and chocolate ice cream.

All these things, on a "normal" day, he would consume without restraint, if allowed. At the moment, however, just mentioning one of these food items is enough for him to screech "I NO WANNA IT! IT HURT ME! NOOOOOOOOO!"

So, in short (HA!): PLEASE PRAY HE SLEEPS TONIGHT.....

Posted by: zahava | May 21, 2008 6:43:23 PM

Oy va voy, I took your little lad off my mi-sheberach list too soon. :( Yonah Ze'ev ben Zlata goes back on the list. I hope he enjoys a r'fuah shleimah/full recovery soon. And may you and Zahava be blessed with a decent night's sleep, too.

Posted by: Shira Salamone | May 21, 2008 8:06:31 PM

Ohh. Oh, Zahava, I'm so sorry.

When we had this--not as bad, but similar, we broke out a hidden Muppets DVD that I'd actually bought for myself. We don't have TV and had, at the time, and absolute no-TV, no-video policy, so that was some serious distraction. I got in bed, put the kid in my lap, and stuck the Muppets in. But it sounds like Yonah is beyond that, and if he already watches videos then there's no novelty.

Can you let Lulu in his bed? Would that at least distract him?

And I would definitely give him five at least today/tonight. Once he's had a break from the pain he might not freak out quite so badly.

Ay yay yay. I hope he feels better soon. I definitely also felt that nobody really gave us full disclosure on the whole adenoids/ear tubes thing. They made it sound like this very minor little piece of cake thing, whereas in reality...

Posted by: uberimma | May 21, 2008 8:49:31 PM

On codeine-- apparently, it can induce vomiting in the right situation. (which would be the same physical reaction as most drug poisonings, maybe that's why the choice of words?)
That is already a huge problem with this type of operation.... (I know, I got a shot to prevent it after five hours of doing so. Ew.)

Posted by: Foxfier | May 22, 2008 8:11:02 AM

Glad to hear the surgeon upped the Optalgin dosage. Just because someone is a good surgeon doesn't mean he's good at pain management. (I wonder why the Israeli medical establishment is so down on opiates. I think they're fabulous--medically, of course.) My dear old dad always says, "Take it 'till it works." And that man, too, is a doctor.

Refuah shleimah to young Yonah.

Posted by: Shimshonit | May 22, 2008 12:59:05 PM

Did any of the docs offer Lidocaine (known as Xylocaine back in the States)? When in my early 20's, I too had similar surgery and also had a similar adverse reaction/sensitivity/slow healing. Two trips to the local ER for unplanned follow-up yielded teh same results; an RX for Xylocaine. The stuff worked.

Posted by: channie g. | May 22, 2008 6:23:59 PM

Did any of the docs offer Lidocaine (known as Xylocaine back in the States)? When in my early 20's, I too had similar surgery and also had a similar adverse reaction/sensitivity/slow healing. Two trips to the local ER for unplanned follow-up yielded teh same results; an RX for Xylocaine. The stuff worked.

Posted by: channie g. | May 22, 2008 6:25:55 PM

Zahava, can you give us a Yonah update? I think a lot of your readers are wondering and worrying.

Thanks. Hope you're all getting some sleep.

Posted by: uberimma | May 22, 2008 8:34:33 PM

Sure uberimma! Sorry for the worry!

Yonah is, 'ברוך ה (BH/thank G-d!) sleeping a bit better. Instead of waking every hour and a half, he only wakes every 3-4 hours.
We have worked out a system staggering the Acamoli® and the Optalgin® to give him more continuous and consistent pain coverage.

Sadly, the pain management still isn't enough to allow him to swallow comfortably, so he is still refusing to eat and drink as much as would be preferable. He still clutches his ears after each sip/spoonful and howls in pain....

We are sleeping better, but are still draggin a$$ a bit.... :-(

My friends all try to console me with "but if he were a newborn, you'd be celebrating!" To which I dryly respond, "and that is precisely why you don't see truckloads of mid-40-somethings all racing out to have babies! We can't handle this kind of sleep deprivation on a regular -- or even limited -- schedule!"

We are encouraged by the progress and are looking forward to more progress. Hopefully, the periods between dosages will begin to gradually increase, granting us all more consecutive shut-eye, and hopefully he will begin to be hungry enough to want more of the foods we can safely give him....

In the meanwhile, wishing you all a שבת שלום (Shabbat Shalom!)!

Posted by: zahava | May 23, 2008 10:06:30 AM

Zahava,

Is he getting any Zinc? Zinc is useful post-operatively to heal the cut tissues. Give him however much is the highest suggested limit for a child his size.

Have you tried Rahel's suggested concoction, minus the lemon juice, then? Ginger does promote healing. Fresh ginger would be better; just peel with a spoon, rinse well, slice, and boil in water. Tumeric does indeed relieve pain and in fact comes fresh in a ginger-like root, which, if you can obtain it, could be prepared the same as the ginger root. But tumeric also acts as a blood thinner, so it may or may not be an option. So, boil slices of one or both in water then serve as tea with honey rather than maple syrup. Honey has antibacterial qualities along with the soothing sensation it provides, so if all else fails, let him have "special treat" of spoonfuls of honey. It doesn't sound like he is eating much, so you need not worry about all the sugar; he needs energy to be able to rest and heal.

I wonder whether investigating a sleep aid might be more fruitful at this point than trying to further solve the pain situation; if he can get a good night's sleep, he might heal a bit and feel better. A nip for him too? Benadryl? Tylenol PM? Nyquil?

For those of us not familiar with the surgery, can you explain what is going on with the ears?

I sincerely wish you all a restful and restorative Shabbat.

P.S. I like the name Zlata. I knew someone called Zlatika.

Posted by: b. | May 23, 2008 2:29:26 PM

B- that reminds me of my dad's cough medicine-- two tablespoons of honey, enough rum to make it liquid, add lemon if they're coughing (pass in this case, clearly) and add boiling water--about equal to what's in the bottom.

That might help with sleeping, too.

Posted by: Foxfier | May 24, 2008 2:09:53 AM

When my two little ones had their tonsils out (at the same time) they did fantastically well. At home the prescribed liquid pain reliever (I don't know what it was but children were given meds then no one in their right minds would consider today) seemed to keep them comfortable. But by the end of their first day home my throat was so painful I was terrified I'd picked up staph and might be dangerous for the little ones, and called the doctor. He laughed and said I was having "sympathy pains"! Sure enough, next day, no pain for me either.

Posted by: Peggy | May 25, 2008 3:46:34 PM

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