Ache

OK.

Breathing in deeply through the nose and exhaling slowly through the mouth. The Someone I saw suggested that as a technique for managing a panic attack and when I had one en route to Arizona I discovered that although it did not make me feel even the tiniest bit less screamy it gave me something to do other than gnaw my fingernails.

I am not a patient person. For about fifteen years I had a series of terrible haircuts because when I decided that the hair needed to go I always wanted it to go right that second; so hello Walk-ins Welcome. I mention this because you can multiply that by about four hundred billion to reach the urgency I feel to get Patrick into someone who can help him. That said, one of my biggest regrets is the fact that when Patrick was so sick two years ago my need to have him seen right that second resulted in a series of last minute urgent care appointments that caused Patrick to be examined by about twenty different doctors. I am sure each of them was good in their own right but their lack of familiarity with Patrick and the course of his illness caused them to draw more blood than a lakeful of leeches and put him on a three month yo-yo of every antibiotic known to pharma. This in turn did nothing but kill off the marginal bacteria leaving only the special forces bad ass bacteria that put Patrick into Children's with an IV in his arm. Mistakes were made and I strongly believe that if I had made more of an effort to insure continuous care from his primary provider he would not have needed to be hospitalized. It's on my guilt list.

Anyway with the uncertainty right now it's been extremely important to me that we put together a plan that will lead to an accurate diagnosis and proper course of treatment and/or management. It's been a crappy week of phone calls and waiting - and the news so far is worrying - but we're on the right path I hope.

I brought him into the pediatrician on Friday. His regular guy didn't have any free appointments so I scheduled with another one who Patrick has seen in the past. In the hall I saw our doctor and he told me that he had noticed Patrick was coming in so he'd briefed the doctor we'd be seeing. He'd also finally been able to talk to the pediatric neurologist we wanted (I was pleased to see one of you recommended this guy by name in the comments) who had some thoughts as well and he'd passed all that along.

The doctor spent a long time with us and I especially appreciated that when Patrick ranked his worst headache as a 3 she had the insight to ask, "And what would you rate the worst pain you have ever experienced in your life?"

"Ummmmm, a three and a half," Patrick said.

"Ah," she said.

She had him re-tested for Lyme's since she knows we live in the woods and she felt his symptoms could be consistent with that. She also repeated the blood work from three weeks ago when his CRP was a little high and his white blood count was low. Finally she did a neurological exam.

At the end she said that there are some red flags. She said the headaches concern her, particularly the one that had woken him up and the one this week that he had woken up with. She said apart from the anecdotal evidence she thought the exam itself was worrying - his balance is off and his reactions were unequal between sides. Something like that. They scheduled him for an MRI at Children's on Tuesday. Depending upon what that finds we'll either deal with it or move forward to treat the headaches with their office and the neurologist. In the meantime the neurologist has suggested daily riboflavin (vitamin B2) as something that has been useful in treating his migraine patients. Also, ibupfrofen as needed. Swimming is ok if he feels up to it. Tumbling (obviously) is out until further notice. Oh and the next episode of vomiting lands him in the ER in order to move our current timetable from soon to now.

So there it is. We're waiting. Patrick is doing quiet things like writing a choose your own adventure comic (hint: it doesn't matter which doors you choose, eventually you are going to wind up going down the spiral lava slide right into the giant shredder of death. sorry) and sketching factor trees for Edward, who is currently obsessed with numbers.

"Can you count the numbers for me?" Edward asked this morning and then he put his head on my chest while I counted. Steve walked in as I got to 436 and said, "Well. This is weird."

And Caroline is walking around with a pair of binoculars pressed backwards against her eyes, exclaiming, "Oh no! Everything is SO FAR AWAY!" She walked into the kitchen counter a minute ago and I'm pretty sure she said, "Oh damn it!" but at least she was quiet about it.

And that's our weekend. Waiting.

Comments

[Anita]

(((hugs))))

[Jane]

It's usually nothing. And I'm hoping it's nothing. No prayers, but good thoughts going out into the universe.

[tree town gal]

Good work, brilliant momma... my heart is in my stomach with you all, waiting. Very smart of the pedi to ask about Patrick's internal scale. Much love and thoughts your way...

[Vanessa at He Gives Hope]

praying...

[Alicia]

All warm thoughts with you and your family. The waiting game is not fun, I've played it enough myself to know this. I hope for you to have answers soon. Not knowing anything is terribly stressful.

[liz]

Sending hugs, and love.

[Bea]

Wishing you all the best...

Bea

[Veronica]

Waiting is hard.

Hoping that it's nothing serious and gnawing my fingernails in sympathy.

[Anna]

You don't know me, but I'm thinking about you and your boy. Take care.

[Alison S]

Thinking of you - I do hope everything is ok.

[Hermia]

You are doing an amazing job with this mess. I am keeping my fingers crossed for you all. Perhaps counting to really high numbers will end up being soothing?

[Stephanie O]

Just love and good wishes for you all. You're doing a great job. Hugs to everyone.

[amanda]

Fuck. so sorry Julia. Thinking of you all.

[Alison]

I really hope the R/L sided issues are a result of a concussion - that sounds likely doesn't it? And managing a neurology office, I would say that otherwise, pediatric migraine does sound a good working diagnosis. I can't imagine your wait this weekend, I will be thinking of you all. We don't do pediatric neurology at our practice, but if you have any questions you want me to fire at our docs I will be more than happy to do so.

Good luck all x

[Erika]

Sending calming thoughts your way. I hope he's better very, very soon.

[Clarabella]

Sending positive thoughts and internet hugs your way. If I had your address, I would send wine. Hang in there, all of you.

[Christy]

Oh Julia! I'm so sorry you and yours aren't well. I can't begin to imagine what you are going through...but know there's yet another stranger from the Interwebz out here praying for you and your family. It's amazing how the Internet has such power to connect us all. I sincerely hope Patrick is better soon.

[karen]

Prayers coming your way.

[Adventures in Hypochondria]

I'm here hoping that his off-balance and non-symmetrical responses are just his "normal" midline coordination stuff. Like...aren't throats always red? But how red? Too bad we never do these tests when they are well.

As a hypochondriac and paranoid, anxious sort, I tend to get to the doctor quick...and often regret it for the reasons you mention. Best of luck balancing the urgency and the lack of urgency.

[Rachel]

You know... I've never understood that whole pain scale thing, and I'm an adult. I can't imagine trying to get a child to reasonably assess the amount of pain they're suffering. I mean... I felt bad telling my neurologist that my migraines were often on an 9 or 10 on the pain scale, or my gynocologist that my cramps (due to endometriosis) were like a 15... because I always worried that it made me seem too whiney. Like sure lady, I'm sure your pain is worse than everyone else's.

But then I realized that I could say, "Well, this migraine is a 9 or 10 on the MIGRAINE pain scale... but probably you know, closer to a 3 as compared to say, having a leg chopped off."

Anyway, I digress. Kudos to your doctor for having the common sense to realize that a child doesn't really have a good grasp for the pain scale and figuring out a better way to ask his level of pain.

[Patricia]

Hang in there, Julia. We'll wait with you.

[Sarah R]

Sending you all a bunch of love and good wishes...and a bucket of numbers for Edward. Keeping my fingers crossed for you.

[Karen]

My good thoughts are with all of you.

[Marsh]

If warm wishes healed, Patrick would be well. So many of us are on your side. I am thankful you are posting often because your readers really do care and want to know. It's not like a book we're reading; we know it involves actual lives and even those of us who have never met you, have grown to love you and your family through your beautiful writing. You'll get through this.

[Kate (Bee In The Bonnet)]

The "someone" I saw while pregnant in an effort to overcome the anxiety that was causing insomnia/headaches suggested the breathing thing also. Something about your adrenal system not being able to send the signal when the diaphragm is nice and relaxed? I don't know. It took the edge off enough to keep me from damning the fetuses and knocking back some klo.nopin, but I can't say I'd recommend it for long-term relief.

I've always found the doctor's pain scale to be a bunch of bullshit. Sorry, but my 10 isn't going to be the same as a person who has never had three of the (possibly) most painful conditions ever (painful enough that the ER doesn't even collect $200 when they pass go-- just straight to the dilaudid...). When I say that my current pain is an 8, that means something very different than someone's "I stubbed my toe once" kind of 8. In the event you haven't yet seen it, I find this to be a far more effective scale:
http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

Will be thinking of you all, especially Patrick...

[Alyson]

Sending happy, healthy thoughts your way. If I come to MN, do you think Patrick can teach me to sew? I have knit a lovely purse that needs a lining and I don't sew. I'm sure he'd be FANTASTIC at it. Or you could send him here, we go to the beach in Maine in the summer....You can come too.

[CaraH]

I just want to tell you that I am sorry, and that my family and I are praying for you and Patrick. Sending well wishes.

[girlseven]

Sending good thoughts your way.

[AnnaN]

Am sending hugs and prayers your way. I can imagine what you are going through as two years ago I played the "What cancer will this be?" mental anguish game concerning my husband's health. (It turned out very well in the end and wasn't cancer but did involve open heart surgery and valve replacement blah blah blah).

Some things I learned during that time which might help you with Patrick. Bring a notebook and pen to EVERY appt. Take notes. Take notes on EVERYTHING. If the doc says he is prescribing a med, write down the dosage and instructions he tells you. Double check that the prescription shows what he said and then double check that with the pill bottle when you get it. But be sure to write it down. You may think you will remember, but trust me - the anxiety will erase it from your brain three hours later.

Ask questions. You are worried and you get to be worried and you shouldn't be ashamed for asking about anything. If you leave the office and remember something - call when you get home.

Going through with your daily routine and sticking to it may be the hardest thing you will ever have to do while resolving this, but it WILL keep you from collapsing.

I am so sorry this is happening. If I lived closer I'd bring over a huge batch of beouf bourguignon, bottles of wine and then do your dishes and laundry. Hugs and prayers, hugs and prayers.

[Johanna]

I just want the time between now and then to fly by so that you don't have to WAIT anymore. I'm so, so sorry.

[SusanOR]

Will have more time later to read the comments, but I'm very relieved that things are moving forward and that the docs involved seem to be taking this very seriously. I was fearful earlier in the week that they were just blowing you off, but I'm glad that is not the case.
Just wishing all of you all the best.

[caro]

Ugh. It sounds terrifying. I'm sorry.

[L.]

Oh my goodness. Most of all I hope it is something relatively benign and non-life-threatening. Sending good thoughts to Patrick, you and Steve, and the rest of the family.

You really have been through the wringer with his health recently, haven't you? That hospitalization two years ago, and worrying about the bilateral issues, and so on. I hope things calm down for all of you soon.

Like another commenter, I wondered if the unequal reactions between two sides thing is related to Patrick's prior issues with bilateral communication.

[sharon]

Waiting is the pits. Hope you get some results and a course of action/treatment very soon.

[jen]

Sending you good thoughts. You must be absolutely beside yourself. I hope the time passes quickly and you get only good news on Tuesday.

[Beth]

I'm so so sorry you are facing all this. I hope you hear good news - and soon.

Thank you for keeping us updated.

[Jan]

Good work! Thank you for posting, not just because we care, but to keep us from panting down the back of your neck! (Interferes with that breathing technique.) Let's hope it's only migraine; even more some passing and benign anomaly.

[katherine]

Warm hugs and good thoughts being sent your way, Julia.
Wish I lived closer. I'd bring you some food so you could just sit there a little longer with sweet Edward on your chest...
But I'm sending you a nice warm virtual cuppa...
Hang in there, mama. You're doing a fantastic job.

[Alexicographer]

Oh dear. I don't know enough to know whether the "we'll see him Tuesday" is a good plan or not though honestly, to me, it sounds OK (but as I say, what do I know?). I'm weirdly relieved that you do have so much experience navigating the medical systems we have (what an odd thing to be grateful for) as I absolutely don't doubt that you are getting Patrick the best care available -- and yes, that's hard to do in urgent / uncertain situations.

Thanks for keeping us updated, and further updates will of course be very much appreciated though I do realize they are appropriately far from being your first (second, third, ...) priority.

[tgsdmom]

Yet another one in the World Wait & Worry group following your blog.

I once agreed to count to a thousand out-loud for my son. I regretted it way before I finished, but had to perform again a few years later because "You counted for him, so count for me too." It takes about an hour and results in numb mouth muscles. Not recommended.

[snickollet]

Oh, oh, oh. Thinking of you all, and sending lots of good wishes for speedy diagnoses and healing.

[Connie]

Glad you are moving along... But woman, please, how can you make me laugh so hard when you are going through such unknowns?

[Karen]

Oh my. You and your husband are doing a wonderful job. Your children are fantastic and funny, and smart, and beautiful. I have no advice that hasn't been given here already. Just keep doing what you're doing. You are in my thoughts. And thank you for sharing your lives with us.

[kris (lower case)]

i can't think of a damn thing to say to make you feel any better... i will say prayers for all of you though...

[Jen]

Phew, on the Tuesday. Have you MRI'd before? My youngest (who is Patrick's age) had to have two as a baby (well 10 mos and then 3 or 4 months later) after some seizures.

No metal in the room with them -- and I couldn't figure out what was happening with my hair while it was going on (I sat in the chair in the room). Until I finally reached up and realized that my barrette was standing at attention and leaning toward the machine. Heh.

He was sedated, but the first time he had a "paradoxical" reaction to the sedation and revved up. That was unpleasant.

But, it's ALWAYS better to have answers than just big clouds of worry (mine does have epilepsy aka seizure disorder, but it's really well maintained with medication, so that's good enough for us for now.) I wonder if the balance and sidedness is new -- or is what you already knew about?

I'm with the tricky moms that suggest faking the throwing up or calling and begging for an MRI if there is anything new or the teensiest bit more worrying between now and Tuesday. I'd never think of that and I'd have to have my husband call -- I'm horrible on the phone. I'd be Patrick saying 3 without the clarification that 3 1/2 is the worst he's known. And he's known a bit o'pain.

[Cheryl P.]

I am with Sara, I'd want to say he vomited, also. I rarely comment but I adore Patrick so much.

I am sending warmest wishes for you all. The Lyme Disease makes sense living where you do. I'm so sorry you're having to play the waiting game and I hope the time until Tuesday passes as easily as it possibly can under the circumstances.

You are definitely in our thoughts down here in Owatonna.

[Michele]

Maybe breathing exercises don't help you, but does counting to 436 work at all?
Worrying right along with you but I believe things will work out fine.

[Priscilla]

Deep breathing doesn't really work for me. Ativan with a wine chaser is rather nice, though.

I think you are holding up very well - you would have been a stalwart Brit, pluckily surviving the Blitz, book in hand. Holding it together for the children, and all.

Warm thoughts for Tuesday.

[victoria]

I have no advice. I just feel for you. You're working so hard in the trenches. Best wishes to you all.

[Val]

I'm sorry, Julia. I have no advice, but I'll keep you all in my prayers. 'Not much is worse than being so scared for someone you love.