And Mustard

Patrick's Mayo appointment went like this:

- We spent about 45 minutes with the pediatric infectious disease doctor who told us

    1. sinus surgery never works for children*

    2. Patrick suffers from migraines**

    3. Patrick is very ticklish

    4. Patrick has no allergies

    5. Patrick's sinuses look great when viewed through a scope-up-the-nose

- They drew a hogshead of blood

    We all have our fears. Me, I hate snakes. Patrick is terrified by needles. He literally started to tremble when labs were mentioned. While my antediluvian side is pleased that he will never get a tattoo (fear not, modernists - I am certain that Caroline will more than make up for his lack of body art) his phobia makes thorough exams something of a trial for all of us. The doctor wrote a numbing gel into the lab order which helped but Patrick was still feeling martyred when the phlebotomist wheeled in her cart. Noting the fact that he resembled nothing so much as a cat about to be thrown into a bathtub, she said that he should cheer up because when it was over she would let him choose a pencil.

"But I hate pencils!" Patrick responded shrilly.

I laughed and a moment later Patrick laughed too because even he realized how ridiculous he sounded. I suggested this could be his backstory if he ever decides to become an supervillain - a burning hatred for pencils. We were just developing his nemesis (Ticonderoga HB 2 Man?) when she said she was finished.

He thanked her for the pencil.

- They did a CT scan of his head

And that was pretty much it.

The doctor called about thirty minutes after we got back home. Some of the blood work had come back and it was all normal. Normal immune system, normal blood counts. We are still waiting on some of the more complicated immune testing but the initial stuff all looks fine.

"However," he said, "the CT scan indicates extremely significant sinus disease. The ethmoid maxillary and frontal sinuses are all affected on both sides of his head."

I asked if it was odd that his bloodwork did not show signs of a bacterial infection when the CT scan did and he said no, not at all, because the infection is sequestered - a fact which also makes it difficult to treat. His theory is that Patrick has a chronic sinus infection coupled with recurrent acute sinus infections and we have never managed to eradicate it (them.) So he has put Patrick on a megadose of yet another antibiotic (augmentin) for four weeks and wants him back for a follow-up in January. He said he usually doesn't repeat the CT scan but in Patrick's case he thinks it is necessary; partly to make certain that the infection is completely gone and partly to see what things looks like once they are clear.

So that's the plan.

* D'oh!

** He came up with the migraine theory prior to seeing Patrick's CT scan based on the fact that Patrick gets rather frequent headaches and sinus infections are not supposed to cause headaches in children. This might be true and we'll keep an eye on it but I personally think it is more likely that Patrick really does feel pressure in his head from his sinuses. Just saying.

The pediatric waiting room at Mayo is a very humbling place.

PS Per RocketGrl's question: oh yes they've always seen infections on the other CT Scans and they have treated them for x days with x antibiotic but they have never done a repeat scan to see if x worked. The idea has been multiple sinus infections; the Mayo guy thinks it is one sinus infection that never goes away.

Comments

[Toni]

So glad that he's okay-ish. And that you don't have to spend too much more time in the waiting room.

[jadine]

Three things:

1) I have chronic sinus infections/headaches, and they're AWFUL. I empathize, Patrick.

2) Augmentin is mean. I just finished a round of it. I'm sure you know this, but again, I empathize.

3) I love it that you got an official diagnosis of "ticklish" from the esteemed Mayo clinic :) Again with the empathy --- I'm profoundly ticklish too. I can barely trim my toenails or put on a pair of flip-flops.

[RocketGrl]

The appointment sounds like a step towards progress. I'm confused as to why the other docs did not see the infection on their CT Scans.

I wonder what Caroline will select for her body art?

[Cara]

Kids don't get sinus headaches? That is bull. I had significant allergies as a kid that often created nasty sinus congestion. I absolutely got sinus headaches. I also had a period where I had migraines (double vision, the works), and they were definitely two different things.

Incidentally, for nasty sinus headaches I still use what my mother calls the Headache Cocktail: Two aspirin and a sudafed taken with a can of coke. The caffeine is critical to the relief. In fact, when I had migraines, the pediatrician prescribed synthetic caffeine. I've forgotten exactly what it does (expands or constricts blood vessels? something like that), but it works. Obviously, you don't want to over do the caffeine, but you might give it a try some time.

[DoraTheExplorer]

Huh. Guess they scheduled you with the team that sees horses.

[Julia]

Wait, why horses? Do I have a mistake I can't see?

[Parodie]

I was told as a child that my chronic headaches were absolutely not caused by sinus infections because children couldn't get sinus headaches. However, the only thing that helped was supposed to treat sinus infections. So....

(a neurologist later insisted they were tension headaches. I'm still not sure and have mostly just learnt to cope with mild chronic pain. I'm not a success story...)

[JenM]

I have twice in my life been so sick I was certain I was going to die. One of those times was due to taking Augmentin. I sure hope Patrick does better on it than I did!

[Ree]

Horses and zebras -- medical slang (see Wikipedia here: http://en.wikipedia.org/wiki/Zebra_%28medicine%29)

Horses are run-of-the-mill cases, zebras are the one-in-a-million rare diseases.

[Julia]

Oh! Thank you, Ree, I was baffled.

Yes Patrick's a horse, thank god. Some of the kids in there broke my heart . That's what I meant by humbling.

[Ellie]

Am very glad they're going to repeat the CT. That just seems such common sense ... (glad too that he's a horse).

[Erika]

When you go back, if you have time, you should get brunch at the Pannekuchen Hus. And make sure to order the Pannekuchen.

I hope augmentin does the trick. Poor kid...

[Floyd]

So glad you're getting some answers...and that those answers seem to be ones that can be tackled.

Hoping Patrick feels right as rain soon!

[Niki]

Not to hijack the thread, but, wait, what is all this about Augmentin? My toddler is on it for secondary ear infection, and she isn't really verbal. In what ways is it terrible?!?

[Stephanie]

Hmmm . . my daughter Hope always gets a headache when she has a sinus infection. (She is 10.)

We've had good luck with Augmentin (sp??) but it does kind of cause stomach upset.

Sending prayers and good thoughts.

[Sandi]

From my children's experience with Augmentin a few years back, it might cause some stomach upset, diarrhea, etc...

[nik]

I'm so glad Patrick is going to be fine, even if his middle name might have to be changed to amoxicillan.

But this: "The pediatric waiting room at Mayo is a very humbling place." Ouch.

[Melissa]

Niki,
When i was on augmentin, the, uh, gastrointestinal distress was severe. If you are changing diapers, you'd see for yourself.
I hope your toddler does better than I did!

[bw]

i know you probably will think i am a troll, but i'm not.

Please look into this stuff. I swear by it...and it couldn't help to try it along everything else.

epicdental.com
xclear.com

[Leslie in Toronto]

I hate to say it, but I am afraid of needles and (so far) have 6 tattoos :) Dunno what it is, but he fear is different somehow when art is attached to it.

Anyway, hope everything goes well for Patrick!

[Jaimee]

Coming out of lurker-dom to tell you that I just got back from the doctor and Patrick and I are going to be augmentin-buddies. Your commenters are kind of freaking me out though... Sending the good vibes your way. I hope that the Mayo can help finally sort out Patrick's sinus issues for good. By the way, Patrick's comments about things ALWAYS make me laugh out loud. He is definitely a character. :)

[tgsdmom]

1. "Sinus surgery never works for children" is a disturbing statement. I searched and found this: http://pediatrics.aappublications.org/content/120/Supplement_3/S126.abstract
Not sure how reliable it is, but it states a 75-80% rate of success. Maybe Patrick just fell in the 20-25% :-(
2. I feel optimistic about solving the chronic infection. Maybe Augmentin will do the job. Buy some chocolate to go with it.
3. Patrick is definitely a rare snowflake, but this does not mean he needs to have zebras in his health chart. :-)
4. I bet/hope Caroline will not have (too many) tattoos. She is, after all, a smart girl!

[Kathleen]

This question has probably been asked before, but...has Patrick ever been tested for allergies? Please ignore all the rest of this if he has.) I spent my childhood either blowing my nose for 20 minutes at a time or lying in bed with an unbearable migraine that would last at least 24 hours and involved vomiting. A lot. Turns out I had TONS of food allergies and environmental allergies. I did allergy therapy for years as a kid, again in my 20s (and that time it did not help) and finally did a holistic therapy based on acupuncture in my 40s. Finally I can eat and my stomach does not hurt. I didn't know it was possible before. I still have headaches, but they are twice monthly now and are tension and hormone-related. And no more vomiting.

I'm just thinking if he hasn't been tested, it might be worth it. Even in my 20s, after all that therapy I had as a kid, my back was covered with welts from the scratch tests. Allergies can be hard to get rid of.

Allergies could keep him congested and be adding to the sinus problems. You can have allergic congestion and it can turn into an infection, especially if you have sinuses that lend themselves to that kind of infection.

[NGS]

I've found every trip to Mayo to be very humbling. Yes, my husband has a chronic condition, but there are people there who are so very sick. It hurts my heart, but forces me to think hard about the choices we make. It's such a great place, saving lives, but there are so many lives that can't be saved.

[Laini]

I just got off a double round of Augmentin and it was just awful. I am so terribly sorry for him!

[Corie]

Poor Patrick. I hope he doesn't have too much trouble with Augmentin - my son and I were both recently(ish) on it to kill stubborn ear infections, and as long as we took it with/immediately after dinner, neither of us had any problems. (I forgot one night, and remembered as I was going to bed. I definitely paid for that slip up!)

And I, also, had sinus headaches as a child. I remember one I had when I was in 7th grade - my head was killing me all day, but I had a math test, so I didn't want to leave early. After class (it was followed by lunch and then my last period of the day) I went to the office to have them call my mom so I could go home, but the secretary wouldn't call because it was so close to the end of the day. I went to lunch and burst into tears. The principal saw me and asked me what was wrong, and sent me back to the office. The secretary finally called my mom, and after I got home I slept for nearly 16 hours. It was crazy. Anyway, my long-winded story to say that kids most definitely can have sinus headaches.

[Lou]

Acorn (age seven. And a half!) shares Patrick's needle phobia. In his case, I think it's inherited, though not from me. We figured out to give him one sucker in his mouth, and another to stare at like a focus object, and that takes his mind off it enough that he can hold still.

(A client brought her daughter along to an appointment with me, and she described with awe a classmate needing the same setup. I was relieved when it proved to work for Acorn; the prior year, it took two adults to hold him down while a third administered a flu shot.)

I am a fellow sufferer of ongoing sinus problems (and without the insurance coverage or independent wealth to pursue non-urgent treatments), so I empathize with Patrick's plight.

[Samantha]

I still think it may be due to prolonged exposure of mold in your basement.

[terri c]

I was on Augmentin for 3-4 weeks one time for an infected skin wound, a big infected skin wound, and I had no problems with it whatsoever, if that helps. Anything that ends with -ithromycin gives me the ever-popular "antibiotic colitis" but not augmentin. BTW luckily augmentin is out in generic, it used to be very spendy, sort of like vanc is now. Hope Patrick feels better SOON!!!

[Meri]

I will keep my fingers crossed. I have chronic headaches - I wouldn't wish that on anyone.

A random idea: is he at all sensitive to fragrances? It is one of my few reliable headache triggers. My dermatologist just recommended All free & clear as one of the best fragrance-free detergents.

Also, are they doing anything beyond the usual to try and treat the pain of the headaches? It is so very often undertreated, especially for children and the elderly.

[tree town gal]

I too am delighted and relieved to hear that Patrick is just a medical "horse." And my heavens I wish I had an ounce of your creativity to engage and distract bright children ("Ticonderoga HB 2 Man"). Hilarious. Clever momma, clever children.

This evening, it was useful for me to be reminded of Mayo's waiting room. Simple yet profound prose, Julia. Thank you.

[DoraTheExplorer]

Hmm, not what I meant by horses.

I meant I was unimpressed by the sweeping generalizations that lump the entire pediatric population into a single pool (surgery never works, no sinus headaches in kids). That doesn't seem like a team that's trained to look for zebras, because maybe Patrick's surgery *has* helped and maybe he *does* have sinus headaches.

I did not mean horse / zebra in the "zebra is a 1 in a million rare disease" sort of way.

[Pam]

My son had sinus surgery when he was five and it most certainly was successful.

[Allie]

Yogurt, yogurt... and oh yeah, get that kid some yogurt. Augmentin is good stuff but any antibiotic for four weeks is going to do a number on his digestive track. And don't forget the gatorade! Good luck, hope this round works!

[Robyn]

Have you tried cutting all dairy, yet? Dairy is a common allergen and can cause stuffy nose and congestion, and infections. After no help or relief from the 'experts' and multiple surgeries, it seems like the next step might be removing common food allergies for a few weeks.

I recently discovered 3 of my 4 children have a dairy allergy, and wish I had cut it out sooner. We suffered thru months of 24/7 crying/colic with our youngest (now 4 mths old). When I cut dairy from my diet (I'm breastfeeding him), he became a new baby. It was an amazing change for such a simple cure. Our second child always had a stuffy nose, for years until we cut dairy, and our third child has stomach pain from any dairy.

Might be less painful to do an elimination diet for food allergies than more needles and bloodwork?

[Tine]

The sweeping generalizations bug me, too. But I'll admit I'm more likely to trust a Mayo pediatric specialist than another doc.

I'm relieved to hear that the immune and allergy tests are coming back negative. Fingers crossed that you'll send that effing sinus infection packing once and for all!

[Sarah R]

I've been thinking about Patrick and hoping for good news...which, in the overall scheme of things, this is.

I've never been able to get through a course of Augmentin because, even taken on a full stomach, it gave me unbearable stomach pain by the third day. But then I'm a wuss. But I'm thinking good thoughts for Patrick.

[Tracy]

An optometrist once told me you can tell if a headache is caused by sinus pressure by bending over at the waist. If that makes it worse, it's a sinus headache. I don't know how accurate this is for everyone, but it seems to work for me (i.e., if I determine it's a sinus headache, Advil Cold & Sinus will help whereas plain Advil will not). Might be an interesting experiment.

[Alexicographer]

I'm no help on anything, but glad the appointment went well, am struck by your comment about the Mayo clinic and humbling, and now want to go to the Pannekuchen Hus.

[jen]

Good luck with this line of treatment. I hope it gets it.

Do I recall you thought Caroline had a dairy allergy at one point? Did Patrick do the dairy free stint or was is just Caroline? I'm with Robyn that dairy could potentially be a contributor. Did they do prick testing or blood testing for the allergies? Our dermatologist said blood testing sometimes does not catch all allergies and prick testing was the gold standard but they don't (typically) do that on kids. FWIW, my son had comprehensive allergy testing and it came back all negative and yet he is severely allergic to something in sunscreen.

[Kristi]

Oh god, what a mess. Good for you for continuing to help him get over this.

BTW - It really freaks me out that he is on so much antibiotics. Be careful with 'Candida' overgrowth and I hope he is on a good diet of acidophilus yogurt or the stuff mixed in with applesauce everyday. Don't be afraid to do too much.

[Genevieve]

Augmentin isn't so bad for me after a full stomach (terrible on an empty stomach, or with just milk). Seconding the suggestion for Patrick to eat yogurt as often as feasible during the course of the meds.

Tracy, a migraine also gets much worse when bending over (for me at least, and I'm told its not uncommon). Something about changing the pressure in the head. Julia, sinus infections can definitely trigger migraines -- not to say that Patrick definitely has them, but just that the fact that he has sinus infections doesn't necessarily mean it's not also migraines. But either way, clearing up the sinus infection will help! (and cold packs can help with both sinus and migraine -- most often on the sinus area with sinus headaches, and on the forehead, top of head, back of head or back of neck with migraines).

[Heidi]

God bless skilled phlebotomists.

[Andrea]

I also get migraines triggered by sinus congestion so he could be having both.

[Stop Hounding Me]

I can't even look at augmentin without getting sick. Hope Patrick's stomach is stronger than mine, and that it kicks the ass of that bacterial infection.

[Hazel]

It never fails to amuse me how a person can have a doctor's opinion (from the Mayo Clinic, yet) such as "X does not have allergies," and yet they still get several people in the comments wondering, "Does X have allergies?" "Maybe X has dairy allergies!" "You should cut dairy from X's diet; he may have allergies!"

[Lisa]

You might try, once the Augmentin loosens up the infection, one little REAL Sudafed. The kind behind the counter, not that stuff they're selling as a "decongestant." Get REAL pseudoephedrine. It can make some people hyper (it IS the main ingredient in meth, of course) but not everyone.

[Kristin]

"Incidentally, for nasty sinus headaches I still use what my mother calls the Headache Cocktail: Two aspirin and a sudafed taken with a can of coke."

Cara, this is my migraine cocktail, with a few tweaks: ibuprofen, real Sudafed (the PE is OK for lesser issues, but to fend off a nasty headache, I go straight to the good stuff), and a cup of nice strong tea.

I saw a thing once in a doctor's office that said, essentially, just because your headaches are sinus or tension doesn't mean they're not ALSO migraines: the one can trigger the other. Which makes a lot of sense to me, because that's pretty much what happens to me..,.but a lot of people who could be getting some migraine relief apparently don't, because they think their headaches don't qualify, and so they don't pursue them with their docs.

My little guy has just started a round of augmentin for an ear infection: for those who were wondering, it's essentially amoxicillin with an added ingredient to give it more oomph and fight resistance issues. (My guy recently finished a round of amoxicillin for pneumonia, so his pedi didn't want to use the exact same med right away.) As she put it, it can cause some, ahem, lower intestinal discomfort, so she suggested plenty of yogurt, and take the augmentin WITH food. I've also added a children's chewable probiotic: CVS has one; Culturelle also makes one (for a lot more money) that comes in little packets that you mix with cold drinks. You could also try a natural foods store: I can't remember which one I used for this, or if this particular store is everywhere, but a couple of years back I had found a powdered one -- came in a little plastic jar, and you could mix it into milk/juice/formula etc.

Best wishes for some good results!

[Karen]

Any thoughts on how many CT scans is ok for a young lad? Would MRI give equal results with less radiation exposure?

[fidi]

One more quack here. I don't know what a normal cold looks like, I always get a sinus infection. When I was a kid I got them around every 6 weeks, now its less frequent. Back in the days (and my home country) sinus infections are not treated by antibiotics, they are treated with rest, inaling, etc. And this: http://www.amazon.com/Gelomyrtol-Kapseln-50-capsules/dp/B0006O0ZX2
"Active substance: Myrtol standardized to at least 75 mg limonene, 75 mg cineole and 20 mg alpha-pinene" (this is from the "Gelomyrtol forte" leaflet, the normal version has less per capsule) This seems to translate to: Oil of myrtle, oil of lime, oil of pine, oil of eucalyptus. The oils do a good job in loosening any mucus and they also are anti-inflamatory. However, even though I am a firm believer in this stuff, I'd stick to the current Mayo treatment for now. You could try it when the next infection hits or when you/Steve get sick. (Eucalyptus oil is very strong and you can smell it about 30 min after taking the capsules... Stick to the instructions. Btw, you can also break the capsules, mix with hot water and inhale.)

But what I really want to say is that I really want Patrick to get better. I see so many posts where he is not 100% and I just want him to feel well. Most of the time. Like kids should. (Ok, maybe mine cough 3 months straigh in winter, but they don't seem ... stuffed. Clogged. This is so much worse.)