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

[Melissa K.]

No medical advice here - just glad Patrick is getting the help he needs. You are an excellent mom, Julia. With a fantastic little herd of unicorns.

[Juno]

I'm a long time lurker and I root SO HARD for your family.
I'm on antibiotics right now myself augmented with the most comprehensive PRObiotics I can find. I just wanted to suggest them for Patrick right now - a month of super bug killers can leave your stomach in a mess.

[sarah]

As usual, you are funnier that should be allowed all in one person. No wonder Patrick is such a laugh riot at school!
One esoteric idea: Have they considered a fungal infection in his sinus'? I heard that was a possibility. Just thought I'd throw it out there!

[Kristin]

I am so glad to hear that he is on Augmentin. I've posted before in the comments about how my 3 year old son had a very similar story to Patrick. No one could figure out what was wrong with him or why he kept having "repeat sinus infections" (I knew they had never cleared up). We were luckily referred to an excellent pediatric allergist because of a food allergy issue and I brought up the sinus problems to him.

He took charge, ordered an xray and gave us the same diagnosis Patrick has. We had to take FOUR 21-day rounds of Augmentin before the infection was cleared up (proven by another xray). That was two years ago and he's been fine since. Augmentin can be harsh on your stomach. I always gave it to him after he had eaten something and we regularly gave him children's acidphilus (sprinkled it in his juice) based on the doctor's recommendation. Good luck to Patrick! I hope this is the solution for him.

A side note--you might want to ask for a regular old school xray intead of a CT scan for the follow up--I think it's something like 1000 times less radiation and I believe it is effective in diagnosing sinus infections. Although I am not a doctor.

[Brigid Keely]

For those of you who are wondering why caffeine helps with migraines, it's because it constricts blood vessels. Some migraine pain is caused by over-dilated blood vessels. Caffeine also boosts the efficacy of analgesics. That's why most Excedrin types have caffeine in them, and the ones that don't are very clearly marked as such. (funfact: the only difference between regular Excedrin and Excedrin Migraine is Excedrin Migraine has an info sheet about Migraines and an exhortation to see your doctor about prescription pain relief if you have more than X amount of migraines in Y amount of time.)

[winecat]

Also glad Patrick is a horse. I find any waiting room at a big time clinic - in our case UCSF - very humbling.

[Christine]

I know nothing about the human sinus, but I do know migraines, and they're genetic. If I remember right, you get them, yes? So he may be getting migraines. When I was a kid it took a headache specialist to sort out what kind of headaches I was getting.

No experience with augmentin in humans but based on the reaction here I'm wondering if there's a reason why we call it something else.

[Nicole]

I think that you have had your share of medical troubles and should be able to enjoy some time without hospitals... But since I can't make that happen I'll just have to settle for wishing you all the best.
(And... I guess it is the pannenkoeken huis that you should be looking for while at Mayo).

[Jan]

All in all, I think the news from Mayo is excellent! Hope you can move on to jolly holly, not-necessarily all-green elf holiday attire festivities! Should be a particularly fun Christmas for the twinks! Enjoy!

[llcsis]

It took me forever to learn that caffeine is required for me to get rid of a migraine and that caffeine withdrawal will trigger one. Explains why Advil, my go to med, never worked on them but Excedrin for Migraines (w/ caffeine) did. whew.

I hope they all feel better soon!

[Jackie]

It is almost embarrassing how long it took me to figure out the "and mustard" title. Now that I did, well I can't stop giggling. Also, you are a genius with words.

[victoria]

Aw, poor Patrick. How awful to have to live with chronic infections.

Dr. Mama has a memoir about how she overcame her fear of needles. She had to have daily injections to treat her infertility and she had to overcome her fear of needles (even though she's a doctor she still hated getting stuck).

You know how she likes to give specific, practical, straightforward To Do lists that will solve your problem? Like, how to stop a nosebleed, how to run through pain, how to cope with a difficult toddler or inlaw, etc.? Maybe check out her description of how she overcame her needle-fear and see if it's helpful for Patrick?

I wish I had something more helpful to say. I feel for your kid.

[Pam L]

D'oh for sure! Did Patrick hear that? Does he want revenge on his Dr and/or the surgeon yet?
Thank goodness they are doing a repeat CT scan, but what if the infection is still not gone, what then?

You must know every pediatrician in a 100mile radius, or more, by now!

[Sam]

My experience with Augmentin: My second son had severe and recurrent ear infections from age 9 mos. to age 2. Augmentin did not agree with him. Florastor was his friend - it is a fruit punch flavored probiotic that you can put in juice or yogurt that prevented the nasty GI stuff. That said, my third son has never had a problem with Augmentin. You'd never know he was on it. So it strikes different people diferently. Hopefully Patrick is like my 3rd son. If not, Florastor. Over the counter in groceries and pharmacies. Good Luck.

[Naomi]

Honestly, the chronic sinus issues Patrick has coupled with the chronic issues Edward has with the bonus of your current lung thing makes me wonder if you've got something going on in your house -- some sort of mold or that toxic drywall (which apparently can cause sinus problems: http://en.wikipedia.org/wiki/2009_Chinese_drywall_controversy ) or something along those lines.

[Audra]

I haven't been to Mayo, but I went to Children's in Atlanta (Scottish Rite, where they see many a zebra) and even though I've worked with very sick kids, I still know what you mean by humbling. Glad Patrick's immune work came back okay!

[Molly]

The one sinus infection makes sense. One of my kids had a kidney infection that never went away. Or rather, she had two kidney infections, one amoxicillin-resistant, and one sulfa-resistant, that took turns. But it's funny (not haha, just funny) that they could say he has migraines. When my other kid was Patrick's age we spent an entire day in Children's because Everyone on the staff agreed that kids don't get migraines. BS.

[Deloneva]

It never fails to amaze me that people can test negative for allergies and, in fact, be allergic to common things - they're not infallible. I have never tested allergic to dairy but if I eat something with even hidden dairy, even if it's the last ingredient in a long list of horrible ingredients, even if I pick the cheese off a sandwich, I will get violently ill within hours and spend hours in the bathroom. When I finally wised up and cut it all out (whimpering & whining the first few months), not only did my stomach stop acting like I had ulcerative colitis, but my knees stopped going out on me (I'm not terribly athletic nor am I overweight) and my GERD has quieted down to the rare bout of mild heartburn. Dairy is insidious and absolutely horrid for the sinuses. Oh, also, I have completely stopped having recurring sinus infections (no more antibiotics & probiotics, yay!) and my twice-annual lay-in-bed-dying mystery illness that always ruined Christmas and my anniversary travel. But, in the interest of full-disclosure, I have yet to pull my own kids off it because it is such a huge pain-in-the-rear.

Ultimately, either the allopathic route will work for him and you'll be so proud to have fixed him or it won't and you'll turn to unconventional treatments and kick yourself for not doing it sooner. It'll all make for interesting blog fodder.

[chris]

Deloneva, that's because you have a dairy intolerance, not a dairy allergy. Those are two completely different things, albeit sometimes with similar symptoms. An allergy is an immune system response which is what the allergy testing is designed to detect, an intolerance is a digestive issue, and nope, no allergy testing is going to pick that up. Since the issue here is one about "immunity" rather than "digestive disorder", there is really no point on harping about the latter.

[finn]

Adult immunologist here (long-time lurker, love the blog, etc etc). Good to hear nothing worse seems to be going on with Patrick. Chronic sinus infections are a pain (in all ways), and the last ENT conference I went to said 3 months' treatment with antibiotics, minimum, and anything else was just stuffing around creating mutant resistant populations and general grumpiness.

Again, this is in adults, but I guess I just wanted to say that a) the same chronic infection sounds very likely, and I see it all the time in adults and b) can you keep him on the antibiotics until the scan, and just keep them going if it hasn't cleared up?

(p.s. the "dairy causes respiratory problems" is a persistent and annoying urban myth. I have (almost!) given up arguing with people over it.)

[Nicky]

I use probiotics when I'm taking Augmentin, and it works like a charm...

[Elizabeth]

I hope he feels better soon! I just had sinus surgery yesterday, in hopes of fixing a few long running problems, and I have bad headaches as well. I can only imagine how frustrating all those aches and pains would be in a small person, since I know how annoying they are as a big person. (And as someone who just had sinus surgery...I can't imagine caring for a kid with it - so maybe it's not such a terrible thing that he probably won't have it any time soon.)

[NJ]

Long time lurker, first time commenter. Please consider alternative medicine (e.g., Shonishin - needle-less acupuncture) for P? Having gone through it myself, am a bit concerned about # of rounds of antibiotics P has gone through and future side effects. (Sorry for brevity - typing one handed with nursing child in other hand)

[Kathleen]

I just wanted to point out one more thing about allergies. They don't test you for every substance under the sun when they test you. They test you for the most common things. You can test allergy free and still be allergic to the thousands of things they didn't test you for. I have a lot of experience in this as I had a two-page, two-column list of foods that I was allergic to as a kid. And even though I stayed away from all of them, I would regularly get an allergy migraine anyway and commence with my headache/vomiting routine. That lasted until I did the NAET allergy therapy, which is based on acupuncture. I have not had any more of those headaches since.

So all I'm saying is that alternative therapies do help some people, and that just because you have had a blood test or a scratch test does not mean that you can rule out all allergies.

Anyway, I don't pretend to know what Patrick has, just wanted to ask about it. And I hope whatever it is, that he is well soon.

[Becky]

Definitely look into probiotics with Augmentin - after a nasty ear infection "treated" by Augmentin, I ended up with Clostridium Difficile that kept coming back for 6 months. I wouldn't recommend it.

[Sara]

Well, hooray for (possible) answers! And better yet, (possible) solutions! I really hope that the drugs work their voodoo magic and that Patrick's head is clear as a (delightfully quirky) bell in no time.

I am SO with you in being antediluvian when it comes to body art, and hope that your needle theory holds true (although I had a heavily tattooed student tell me that she is terrified of injections just the other day, so I fear that it may not be so).

[Dina]

Hope the Augmentin helps, but it's awful on the flora and fauna in the body causing all manner of ills including diarrhea. Didn't read all the comments, but did anyone (including the docs) recommend a probiotic for Patrick? Acidophilis is an absolute must for anyone taking antibiotics. I use Nature's Bounty or Sundown (don't know if they're regional - I live in Maryland) to help with IBS but any vitamin brand will do. The pharmacists I work with strongly suggest this with every antibiotic prescription we dispense. Hugs to all!!!

[Elle]

I was so taken by surprise when my 3-yr-old totally lost control when getting his flu shot. I'd never had to use all my strength before to hold him down! And then I had a flash of brilliance: the day before his next flu shot the following year I out-of-the-blue pinched him, and told him I'd just given him a shot. I did that another 2-3 times, and then started telling him before I gave him his "shot". I know that for me the anticipation is the worst part, but we don't get a lot of chances to practice not getting scared before a shot. He's gone into his next two shots pretty calmly...and they've given him flu mists!!! Oh, well. In my mind it's an excellent plan.

[Kara]

I haven't read all the other comments but also have migraines triggered by chronic and acute sinus infections (it's actually one of the ways I can tell I have a sinus infection brewing).

[Darlene]

This is totally off topic, but I got a catalog with something that I ordered that made me think of you. It was from www.magiccabin.com. They have pieces of different colored silk that can be used for dress-up that I thought was especially cool and tons of other great toys.

[Brandi]

Glad to see others mentioning probiotics. My husband was on augmentin a few weeks ago and these helped him tolerate it. We just used the walgreens brand and took a capsule with each pill. I feel for Patrick. I also hate needles and have migraines and had chronic sinus issues as a kid so I hope that he gets better for good soon! And fwiw this is my migraine cocktail: one excedrin two Motrin. Two excedrin helps but I have tachycardia and the caffeine in two would aggravate it so I can only take one now. The two Motrin give that one a nice boost in the pain relief department. Hugs to you and the family!

[kara]

SO hoping that real answers and help are finally at hand for Patrick!

(Also, I am still snickering about the fine humor behind the creation of Ticonderoga HB 2 Man... an excellent distraction indeed..)

[MustangSally]

I had an ENT once tell me (from my chronic sinus infections) that you need to keep taking the antibx for two weeks AFTER you actually feel better to truly kick it. And that most regular docs don't get this.

Hope this finally does the trick for Patrick :(

[Angela]

Augmentin is notorious for causing diarrhea and I use a probiotic like Culturelle when anyone in my household is taking it. Probiotics are purchased over the counter and they aren't cheap but they really do help with the GI upset. Sorry if someone else has already mentioned this, but I haven't read through all of the comments. Hope this round of antibiotics finally knocks it out, once and for all!

[laziza]

Oof, you are a brave woman to open anything health-related to comments. :) Wishing Patrick (and all of you) well!

[Kelli]

Something w/no side effects to try - my 5 year old son & 2 year old daughter get frequent sinus infections/ear infections. I started giving them each a squirt of saline-only (non-medicated) nasal spray in each nostril. I think they have wonky sinuses (thought x-rays don't show much unusual) that don't let the snot drain properly. If it gets thick and gummy, it stagnates and infects. The saline keeps the gunk up there thin, it drains easier, we've been weeks w/o infection, which is very rare in our house.

Oh, and use a separate bottle for each kid. If one of them starts to get sick, you don't want them to cross contaminate. Since there's no preservatives in the saline only nose spray, I always switch them after they get a small cold, too.

[Kelli]

I should also mention that my son's first *real* sinus infection went undetected for a year and a half. We couldn't figure out why he always looked sickly and coughed all night long, when he didn't have so much as a runny nose during the day. Didn't find it until we did x-rays. It took 3 rounds of antibiotics & steroids before x-rays were clear. We always did follow-up x-rays to make sure it was gone. Have had several more rounds of meds on subsequent infections, and two of them became complicated w/pneumonia. So I get the whole "What is WRONG with my kid?" thing. So far this winter, regular saline seems to really be helping.

[Laura]

Like Patrick, I suffered from sinus infections and headaches as a child, but mine were not aggressively treated until I was an adult. Sinus surgery (x 2) was not a cure-all and I am still afraid, 18 months post surgery, that the chronic infection will return.

My sinus specialist has me doing the saline rinse with a NeilMed rinse bottle (more pressure and control than the netipot). He has worked through a list of ingredients in addition to the saline, including baby shampoo (to disrupt the biofilm on the bacterial colonies), minute amounts of bleach (like a quarter teaspoon per gallon of saline), and Listerine. It sounds crazy, but my favorite for every day use was the baby shampoo. The Listerine stings like a son-of-a-bitch when I have a cold, but seems to keep the infection from coming back. I'd be happy to share the details if you wanted to run them by Patrick's doctors. I hope you find some answers soon.

[Hollie]

Another vote for Culturelle if there are any... GI side effects. I know EXACTLY what you mean by the waiting room being humbling. My 10 month old has milk protein intolerance, and when we are giggling and wrestling in the waiting room at the pediatric GI, I start to feel guilty when I see all the other babies and children with tubes and ports and looking emaciated. The doctor always spends a couple of extra minutes just stroking her arm and marveling at how pink and fat and happy she is.. what depressing jobs, but bless those peds specialists for doing them.

[Bridgette]

I read your blog to my Dad he said "time for the Black and Decker" (that is a power tool company in Australia - possibly America too) My Dad was originally a pediatric surgeon and he said that there is a not very serious procedure that "sequestrates" the infection. It does involve drilling a hole. In the head. Sometimes I have voluntarily wanted to drill a hole in my four year old's head - but the idea of someone else doing that to him does not enthuse me. However Dad says that it is very effective and not as serious as it sounds. I mention this *just in case* they discuss something like this with you. Hopefully the Augmentin will knock it's socks off.

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[Kristen]

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