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

[Laurie]

Oh lord, woman you've got a plateful! I have no answers, and no ideas, but am sending lots of good thoughts your family's way.

And, belated I know, but that "I'm a biter" sign? MADE MY WEEK.

[punchanella]

eagerly awaiting resolve for ol' patrick... whom i've come to love.

keep us updated as you can and all kinds of really helpful hugs to you all.

[Kathy W.]

I've been thinking about you guys all week. Hope you get some answers soon. Patrick is wonderful. Tell him how impressed this reader is by his pile o'pants. I couldn't do that without a horrible headache.

[Pam/Wordgirl]

Thinking of all of you!

[bethany actually]

Oh, Julia. I'm sorry you're waiting. I hate that too. Thinking of you all, praying for you, sending hugs and warm thoughts. Keep breathing.

[Rachel]

So glad to hear they are trying to speed up the process for Patrick! And especially glad to hear they've ordered an MRI for him this coming week.

I definitely understand your reluctance following Patrick's last incident with all of those doctors, but I feel his symptoms at this point could point towards something that definitely shouldn't be handled on a "wait and see" basis, so I'm glad Patrick's regular doctors seem to be getting the ball rolling for you.

I will definitely continue to pray! Please update if anything changes!

[Katerina]

Thinking of you almost non-stop and sending the warmest wishes your way. Words cannot express how much I hope this turns out to be something extremely minor and easily treatable. Hugs to you and Patrick.

[Sonja]

Lots of warm wishes to your family and an extra serving of healthy vibes for Patrick! I hope his own story takes a happier turn than the comics he's writing! (Though admittedly, his comics sound kind of, no, TOTALLY awesome.)

[Amy C]

Only good thoughts for you guys! Will be thinking and praying for you all!

[Katie]

Thinking about you and your fam. Waiting and seeing when it comes to medical stuff is especially sucky. You are doing a great job of being proactive though and I know that will help get answers faster. Fingers crossed that things will get better soon!

[Martha]

I'm praying for my internet friend, Patrick, and his nervous mom and dad.

[Amy]

Oh dear. Praying for you all.

[Sara Neyer]

I am a terrible, terrible person. We must preface the next statement with that.... OK here goes: Pretend he vomited!

There I said it! Move up to NOW. White lies are still lies but yada, yada... morals mean less when babies are involved.

I do know I am terrible person and I do know it would be challenging to get the kid to go along but....

[Sarah]

Oh dear. All my best thoughts for Patrick and all of you. Our vacation week illness brought Scarlet Fever into my post-modern Victorian life which was a surprise but at least easily fixed. So I hope for you something equally treatable after such terrible uncertainty.

[SarahB]

Oh, dear. I am glad there's an MRI forthcoming.

Also, 436! I read that part to my husband, and he was astounded that you counted that far. Impatient you may be in some ways, but what a patient and loving mother soothing her sick child.

[Shannon(aka charmingbitch)]

Oh wow, Julia. I am so sorry; the not knowing & waiting is awful. xoxo

[Leah]

You are doing a really really GREAT JOB. I'll be waiting, too, and thinking about you the whole time. Waiting to find out if Jack had VERY-BAD-DISEASE just about killed me. I recommend fried foods, lots of time with cute babies, and alcohol after kiddos are in bed. Also, valium is your friend in cases like these. (I'm not trying to be flip, just a little funny to lighten the mood. I'm worried for you guys too, though sure everything will be truly fine.)

[sarah k]

Your approach--making sure there is continuity of care and good info all around--sounds wise. I tend to want care NOW, too, and agree that that sometimes ends up being less helpful in the long run. I'm glad to hear that the timetable is looking shorter for getting him help, though. Praying everything is totally, completely fine.

[txmama]

God. Thinking about you all. So glad he can get in for the MRI on Tuesday.

[KatieV]

I know you have other things to do, so thank you for updating here. I'm sure everyone else, like me, is checking daily for your updates.

[Robin from Israel]

Longtime reader delurking...

I don't claim to know anything at all about what might be causing Patrick's symptoms, but as someone who's faced a similar wait - 8 year old boy + debilitating headaches + double vision = all medical professionals suddenly freaking the f* out about Big Scary Things I still prefer not to remember in a whole lot of detail even now, two years later. They had us jumping six month waiting lists for emergency (yes, TODAY) visits to everything from the pediatric eye hospital to unsedated MRIs (apparently age 8 was the cutoff - he was 8 and 8 days).

After several weeks of deargodnowe'renotsigningyouupforsoccerbecausewe'rejusttoobusyrightnowsweetheart and a whole lot of sleepless nights we got back a verdict (from the head of pediatric neurosurgery no less) of probably viral meningitis that had since passed, completely unrelated to the double vision, which simply needed eye exercises.

I hope your sleepless nights end quickly and with as little long-term repercussions.

PS His own music coupled with pretending to be a spaceship pilot fighting aliens who were trying to zap his ship helped my guy get through the loud bangs and zaps the MRI machine makes. That and a trip the day before to show him the machine and explain exactly what would be happening. Maybe Patrick would want to listen to one of his books on tape to distract him.

-----------------------------------
My photography is available for purchase - visit Around the Island Photography and bring home something beautiful today!

[Dev]

Sarah Neyer...I'm a terrible person with you then, I was thinking the same thing.

Ipecac, something that smells terrible...

[Kristi]

Oh my gosh! Just big hugs and lots of chocolate for you right now. I'm thinking about Patrick. :(

[Jill]

I like the way you are keeping your head about you in a tough situation. And I hear wonderful things about your children's hospital from a friend whose son had a very rare awful thing that they treated and is now all good.

[Amy]

Oh, how terrifying. I'm reading this through the lens of someone who is in the middle of watching good friends go through the process of kid with blurry vision, poor balance, and strange headaches get an MRI and then a terribly awful (and extremely rare) diagnosis.

I am glad to hear you have an MRI scheduled for Tuesday. It makes me sick with rage when I hear about doctors not being able to fit in potentially urgent tests and treatment in a timely manner. Three days between now and more answers seems relatively reasonable.

[NZ Sarah]

Just sending huge hugs and thinking of you. Hang in there.

[Pam L]

Thank GOD you have something going now, waiting is the worst, but Tuesday is better than May for sure. And you were right to press your own Dr, and/or his partner for answers because unless it is a true emergency, as you said, going to another place would probably just confuse the issue and delay the real answer. At least there were funny kids stories at the end to make us smile!

[heidi]

I just wanted to echo the comments saying that you are doing a fantastic job. Your children are very lucky to have you as their mom.

Everything will be OK, I just know it. But I'm sending healing thoughts your way just in case!

[Emily Drew]

Keeping you in my thoughts. *hugs*

[Betty M]

I hope it all goes well next week and I am glad they have moved the diagnostic tests up a bit. Very very scary for all of you. Wishing you well.

[Ab]

I am sorry you are going through this and that Patrick is going through this. Thinking good thoughts for all of you.

[Heather g]

I don't know what to say. I am worried right with you. I never found those breathing things helped much either.

Take care of yourself while in this awful waiting time.

[grace413]

Wishing Patrick a speedy and complete recovery. Wishing you the mental strength to get through it. Nothing more likely to make a mom feel crazy than a sick kid.

[Steph]

Sorry . . and praying.

[Kellyann]

Hi. Trust your instincts. You are a wonderful parent who is very tuned in to her child. Do not let well meaning cyber strangers make you doubt yourself. I think your talent as a writer makes your readers forget they don't really know you or your child. Hug those cute babies and best wishes for your family.

[shriek house]

Thinking good thoughts for Patrick and all of you from here. Waiting is so hard.

[Lise]

Sending you many virtual hugs. Having been through a similar situation, I know how stressful it is to wait and worry.

When my daughter had he MRI, the tech. told her to hold totally still, which she did. We unfortunately forgot to tell her that she could move small muscles in between images, so she was DYING to lick her lips. So tell Patrick that although he has to hold very still, there are little breaks throughout the process.

Daughter is fine, by the way. Of course, she's currently applying to medical schools while pregnant with her second child which is sort of crazy, so your definition of "fine" might vary.

[luludavis]

I'm sending positive vibes/thoughts to to you and your son and hoping you get some moments of calm even with all this worry. Hoping these symptoms are all post-concussion things that will resolve with extra rest.

[Alison]

Thanks so much for the update. I have been thinking of you all. Very happy to hear about Tuesday, and I'm not averse to the fake flying puke story either.

Hang in there.

[Beth]

Oh Lord. I don't comment often but I really do think of Patrick as my fourth son. I am so very fond of him and the twinkles and you. I will be offering prayers and positive thoughts and all of that for you all. Hoping for quick answers about easily-solved problems.

[Ruth]

Poor Patrick. Poor you. I've been through something similar with WB, not that long ago (last spring/summer), and know well the tenterhooks you all are on.

I am hoping that whatever it is winds up being something easily dealt with. Thinking of you all, and grateful you dropped in to keep us updated .....

[Liz]

Sending much love and thoughts your way. I echo the others who thank you for posting, since so many of us are worried too, and to congratulate you on how well you're doing with the kids. Every possible digit crossed for good news.

[Callie]

My mom heart is hurting for you. My son has a congenital heart defect, so I know all too well the anxiety of waiting for test results. I'm not usually a very assertive person and have an almost unhealthy respect for doctors that makes it hard for me to push, but I've definitely had to awaken my inner mama bear at times. I hope you are able to get all the right people looking at Patrick quickly, and I'm praying for reassuring results.

[ali]

More good thoughts coming your way.

I find the only way to deal with anxiety like this is to keep talking about it. It lets it out of your head a little bit, so you feel (a tiny bit)less like your head is going to explode.

[Ashleigh]

Delurking to say you and your family are in my thoughts & prayers.

[GingerB]

I am unreasonably fond of you considering we don't know each other at all, so I feel extra horrible about making a callous "don't worry about it" comment. I am sending thoughts of mac and cheese and wine and healthy children your way. Love, love, love the previous post and pictures. Love.

[a different Julia]

you are all in my thoughts and prayers

[Ellie]

Oh I am SO glad Patrick is having the MRI on Tuesday! Tuesday is good.

The MRI is incredibly loud; oddly, I sort of get a kick out of it. Then again, I have had seven in seven months and am not a child.

Breathe and count; breathe and count. The minutes and hours will pass. Tuesday will be here very soon. We will be keeping you all in our prayers.

[Terri C]

You are doing an amazing and wonderful job. And... Pain level 3? out of 3 and a half? Your pediatrician is great. Patrick is a genius and I love that he has his own scale. I know that religion is not your thing but can't help sending love and prayers. Just think of them as "warm thoughts" OK? And remember--you are doing an amazing and wonderful job.

[Terri C]

Also, I love your comment on breathing exercises. You're right, they do give you something to do. I suggest you not even TRY "affirmations." I have found that looking in the mirror and saying "You are lovable" does nothing for depression that needs medication.