Archive for the ‘diagnoses’ Category

Apparently, I am not the only one in my family with issues of  letting go.  (I feel compelled to add, for the sake of clarity, that my issues are not akin to Nik’s!)

We saw Nik’s beloved Doctor Mary this afternoon.  It’s true, she is beloved; she is the only doctor Nik will ever fully —and joyfully— cooperate with no matter how awful he may be feeling.  He adores her and makes her laugh; it’s a win-win social skills situation all the way around. 

But I digress.

The results from the lab cultures will not be ready for a few more days; apparently the specific cultures Doctor Mary requested can take up to five days.  But we don’t think Nik has an infection, really; the severity of symptoms ebbs and flows —from severe to nearly nonexistent— in the course of any given day.  There is, thus far, always a slight lull after Nik’s had a couple of really awful days full of explosive diarrhea.  (What?? TMI?  Try living with him for a while!)

The abdominal x-ray —which I must say Nik was an absolute champ for— showed no structural concerns but did show a significant amount of stool in the large bowel.  At first blush, it appears that he is developing a bad case of  constipation —bordering on a partial obstruction.

I won’t go into graphic detail about what leads Doctor Mary to this conclusion.  Imagine your kitchen drain being partially clogged; it still works, just a little slower.  When it gets really bad, you have to, erm, help it along.  Same thing with Nik.  Of course, this doesn’t address the underlying cause of the situation; one thing at a time.

So, if I disappear over the next couple of days, though I hope not to, you’ll know it’s simply because things have gotten —as the good doctor put it— “worse before getting better.”  If that doesn’t do the trick, we’ll revisit the issue with Doctor Mary at the end of the week.  She may want another x-ray to see just how bad things look.

Fingers crossed that it all, ahem, comes out okay.

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We finally heard from Dr. Mary late Friday afternoon; she called to discuss the results of Nik’s CT scan. Frankly, we’re not really sure what it all means. They found something —which could be something quite serious or it could be something not so serious. I suppose it all depends on what the ENT has to say when we get to see him. I have to call first thing Monday to get an emergency appointment (my wording, not Dr. Mary’s).

The scan —specifically, the extra view we had to really push for— provided some surprises for us. First of all, the right side —the one which has given Nik so much trouble and which swells on a daily basis— appeared completely normal! The left side, however, showed significant signs of possible mastoiditis (of the chronic or “masked” variety, meaning it won’t manifest with sudden onset, fever, redness, etc,) along with some more indication of some sort of infection or as yet unidentified opacification of the ethmoid bone.

Mores simply put, it could be that Nik has a super-wicked sinus infection —in spite of having no outward manifestation which would lead to that conclusion— or he has some serious damage to the mastoid process and part of the ethmoid bone. It could be the result of his chronic, persistent ear infections which have never had any accompanying drainage. It is possible that —in spite of his having repeated courses of antibiotics, a tympanostomy, and ear tubes already— all the fluid actually drained into those bony areas and became trapped in all the little sponge-like air cells. Highly undesirable conditions with potential long-term effects.

As I said, we won’t know until we’ve seen the ENT and possibly done some more testing. Meanwhile, as a matter of precaution, Nik is on a new antibiotic; rather, one he’s never had before and one which is reserved for “serious infections” as the patient information pamphlet so ominously states. If it is mastoiditis and it’s left untreated it could rapidly become something worse which I won’t get into; it’s not worth my getting upset and scaring people when we don’t know anything yet.

This new drug is used for things like MRSA’s and is extremely harsh on the gastrointestinal system; I anticipate Nik will be a bit uncomfortable within 24 hours.

I, on the other hand, will be extremely uncomfortable until we see the damned ENT.

This is another one of those instances where we have voiced suspicions and asked the question “Could this be some sort of chronic, sub clinical mastoiditis?” and been told “No, he doesn’t have any of the symptoms; you’d know if it were mastoiditis” by so-called specialists.

Attention, Universe? I’m tired of being right about the bad stuff.

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Today’s CT scan got off to a slightly bumpy start. When we discussed with the sedation doctor what specific concerns we were trying to rule out —one of them being chronic mastoiditis— he told us the test that had been ordered wouldn’t show us that. It seems our pediatrician was under the misapprehension that a regular head CT scan would show the mastoid process and surrounding area. The radiology team told us it is a common error made by many general pediatricians; we eventually got it straightened out and got both scans done.

Nik was a total champ and handled things really well. When he started to go into panic mode in the sedation room, we managed to find ways to occupy him. Who knew that velcro falls into the same broad category as doors?? Yep —they both open and close. Nik was endlessly fascinated with a small blood pressure cuff to the point that he held on to it right up until the time he went “lights out!”

They let us stay with Nik during the scan (we had to wear our lead aprons) and it was all done pretty quickly. The hardest part for me —honestly— was trying not to cry as I watched my little guy lying so still on the bed of the scanner. I couldn’t understand why it was so emotional for me. Then it hit me; in spite of all the surgeries and other sedated procedures Nik has been through, every other time we have simply watched him get pleasantly loopy and then handed him over to the care of strangers. I never saw him laid out like he was today. I must confess that it was a little unnerving.

Nik came through recovery like a champ, too. One minute he was out cold then —WHAM! —he was sitting straight up and wide awake. Not exactly coordinated but awake. Again, velcro came to our rescue when Nik got restless but wasn’t quite ready to leave. We were on our way home shortly after 1:30 this afternoon.

On the way home we had to make some stops at places like Trader Joe’s (it’s the nearest one and we live an hour south of the hospital). Nik did well and was his usual charming, chattering self. I think our check out person wanted to take him home with her!

Once home, Nik was pretty much back to normal. Doctors do not believe us when we say that Nik metabolizes things incredibly quickly. Nik’s balance and coordination —and personality— were back to his normal baseline within just a couple of hours after he woke up.

So we took him swimming!

Hey, why not?? It’s not like he can swim unassisted and it was hot as blazes today. My sister and her kids were out so we had the pool all to ourselves! Almost like a mini vacation —except not nearly long enough!

So now, as before, we wait.

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Finally! Tomorrow morning, at approximately 10:30 Eastern time, Nik will have a CT scan to determine if there is anything going on within the actual bony structures within his head (not just the skull proper) which may be causing his intermittent bouts of pain, poor equilibrium, swelling around his ear, etc. You know, the stuff the docs haven’t figured out yet.

As with any major diagnostic test we’ve gone through with Nik —and there have been so many that I have actually lost count —I have mixed feelings. I hope they find something which would lead to an answer; to resolution. Yet, I hope they find nothing.

Sigh. There are no easy answers in this gig, I suppose.

Send prayers, love, voodoo, good juju…whatever works. Please?

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A while back I promised I’d post about our visit to the diagnostician. I’ve been holding off a bit because we are going to see the new neurologist soon and are hoping he may be able to shed some light on something that was, possibly, inadvertently unearthed by the diagnostician. Was it really only just a week ago? My, how time flies when you’re having such fun.

The long and short of the visit is that the doctor, whom we had heard such wonderful things about from Doctor Mary, fell short of our expectations and desires. Well, obviously the desire part since we desire a comprehensive diagnosis —complete with magic wand —to make Nik’s excruciating pains go away. Didn’t happen.

What did happen though is that we felt patronized, marginalized, and disbelieved —yet again. WTF??? Do other people really put up with being treated this way by the people they are paying to tend to their medical needs? The doctor wasn’t glaringly rude or obnoxious, it came across more in the diagnosis and solutions he suggested— and his questions to us. Okay, someone please explain to me how “Doctor, my child wakes up screaming in pain —or sometimes it happens when he’s awake and playing —and begins punching himself in the face and jaw as if he’s in agony,” translates to “Well, now, you may not think there’s anything you’ve changed about his sleeping environment but, really, think about it and I’ll bet you’ll find something that you’ve changed —something subtle —that is keeping him from being able to fall back to sleep.” Hello?? We’re not talking about a kid who has insomnia for God’s sake!

I wish I were exaggerating. The copious notes and videos I compiled and delivered (as requested) the week before the appointment? Wonder Doc N-E-V-E-R looked at them. His explanation was that he “sees a lot of medical records and I don’t always have time to look at them before each visit.” (ETA: What he meant was the extra stuff not already a part of the patient’s electronic records.)

The preliminary diagnosis? Benign Paroxysmal Positional Vertigo. His solution? Drugs —more fucking drugs. Do we actually believe this diagnosis? Negative; almost nothing about what we witness on a nearly daily basis fits with the symptoms of this particular disorder. Of course, he would have known that had he bothered to read the notes or watch the videos.

The medication he is suggesting? He needs to discuss it with the “brilliant neurologist” —you know the one who never returns phone calls even to our pediatrician —to figure out which of Nik’s other meds to change. I won’t hold my breath that he’ll get an answer any time soon.

The supreme irony, though, is that when we came home and looked up the medication in Niksdad’s Nursing Drug Handbook so we could learn about possible side effects and drug interactions, we found that it can also be used to treat cluster headaches. Hmmm… Hello, Mr. Google?

BINGO! According to this description put out by the Mayo Clinic, this fits Nik’s symptoms to the last detail —including this one:

They may scream, bang their heads against a wall or hurt themselves in some way as a distraction from the unbearable pain.

We see the new neurologist on Friday and will be discussing this with him. It may not be the right answer but it sure feels like a direction to explore.

Keep your fingers crossed.

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Here’s a quickie update as I am now sick and coughing and choking up fur balls everywhere. Oh, wait, that’s my cat that does the latter…

Suffice to say, the stress of recent weeks (What? You’ve missed it? Read this, this, this, or this) has finally caught up with my poor, sleep-deprived body. Today I have a sore throat (feels more like a sinus-y kind of sore throat), hacking cough from post nasal drip, and a low-grade fever. Not enough to allow me the luxury of “calling in dead” to my day job (SAHM!), but enough to really miss the days when I could park Nik in a playpen and give him a few toys and a teether! Oy.

I did drag my butt along to Nik’s feeding therapy this morning. That is going so incredibly well —but that’s a post for another, more coherent-thinking time. We’re going to try to switch back to Miss M for Nik’s speech therapy, too. Again, a post for another time.

There’s some forward motion in our quest for answers to Nik’s episodic pain; we have an appointment with one of the docs on the diagnostic team on December 20th. They did offer an earlier appointment but I wanted to make sure Niksdad was able to go with me. So, until next month, we are going to have to sit tight and be generous with the Advil and/or Tylenol cocktails. Ugh. Of course, Nik’s dance card is pretty full up until then anyway with a sedated hearing test (auditory brainstem response, ABR), the cerebral palsy clinic, his four year old check-up, the cardiologist, the pulmonologist, and his various therapies. (Oy, no wonder I’m sick.)

Meanwhile, Nik’s started with a bit of a runny nose today; funny thing is that the pain episodes seem to decrease when he’s draining. Yet all the diagnostic tests show no sign of anything going on in his sinuses or ears. ARGH. So, hmmm, do I hope he continues to have a runny nose and no pain or stays healthy except for the pain? Yeah, I know…I’m stocking up on tissues tomorrow and keeping my fingers crossed!

I have lots of things on my mind that I want to share —most of it really good stuff —but my brain is so fried. I blame it on the cold medication! One of these days I’ll get around to posting about the speech and feeding situation, our search for autism education support in a non-school setting in our tiny state (DE), and some more great books I’ve read. I have been meaning to write up my thoughts on the book the Kristen sent me —Jonathan Levy’s What You Can Do Right Now to Help Your Child with Autism. There’s some good stuff there.

Thanksgiving will be a low-key affair this year; my sister is not only hosting but doing it all. I think I’ll bring a few good bottles of wine and call it even! I am looking forward to the company of my family and expressing joy and gratitude for the wonderful things in my life. That includes some pretty nifty new online friends and acquaintances, too.

Meanwhile, I’ll leave you with Nik’s Thanksgiving training video…

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Well, I haven’t wanted to say anything in case I jinxed our very brief run of good sleep. Unfortunately, I was right. Nik made it through two consecutive nights with only waking once before resuming the prior pattern of multiple interruptions. The kid has been pumped so full of Advil and Tylenol that even they aren’t working now. In fact, the Advil has reached the point where it’s irritating his stomach and causing tenderness around his g-tube site. So we have to go cold turkey on the Advil for a few days. Please, please pray for us that we make it through this week with sanity and Nik’s poor little head in tact.

At the risk of sounding a melodramatic, something is seriously wrong with my child. The flashes of debilitating pain that seem to strike out of nowhere and bring Nik to his knees, quite literally, are increasing in frequency and intensity. Where they used to only happen in the middle of the night, Nik’s “episodes” are now occurring at random times and frequencies throughout the day. He will be happily playing or singing one moment and a mass of screaming, writhing, head slamming, face-punching pain the next. Thirty to sixty seconds later and my happy child is back —until the next one strikes. And, yes, they are still occurring in the middle of the night, too. I hear rumor that sleep is good for you; I’ll let you know the next time I can confirm that one!

Sometimes the episodes are as frequent as four or more an hour; at last count we were up to about fifteen episodes in a twenty-four hour period. When they occur, they are explosive and startling —especially if you haven’t seen it before. Poor Miss D, our wonderful OT, was beside herself yesterday when Nik had four episodes during his therapy session and playgroup. I think more than a couple of the mothers were frightened by the intensity and by Nik’s need to find a hard surface against which to slam his head. (For the record, we didn’t let him; we kept him on a mat for his safety.)

Niksdad and I have been videotaping and taking copious, detailed notes about these episodes and any other potentially relevant information. We aren’t seeing any discernible patterns yet but we are starting to see some evidence of early warning signals shortly before a full-blown episode hits.

Reviewing the tapes and cataloguing information has been the most heart- and gut-wrenching experience. Worse, almost, than any of our 209 days in the NICU or any of Nik’s surgeries. Back then we were in the safe cocoon of the hospital environment with doctors and nurses at our beck and call. Whatever we couldn’t figure out or soothe someone else was there to help us weather the storm. Now, it’s just us on our own trying as best we can to get the doctors and nurses to listen to us. It’s been an ongoing struggle for more than a year and —at the risk of stating the obvious —it’s getting really, really old.

However, never underestimate the power and fury of the sleep depraved, er uh, deprived. Or the desperation of a frightened mother.

After watching Nik’s symptoms change yet again and the intensity of his pain ramp up even more over the weekend, I called the pediatrician, “Dr. Mary,” on Monday morning and demanded an appointment. Fortunately, we are (too) well known there and it wasn’t a problem. Of course, Nik is usually fine by the time we get to the office so I prepared a CD containing video of several of Nik’s most recent episodes and gave it to Dr. Mary along with a two page typed list of all the various data we’ve collected. Dr. Mary agreed that it is time to bypass all the individual sub specialists who, for the past year, have kept pointing the finger at some area other than their own as a possible root cause of Nik’s distress or, worse, simply dismissing the episodes as “just behavioral.”

Dr. Mary is arranging for us to see the “big guns” in the diagnostic referral group at the children’s hospital we already attend; this group isn’t nearly as photogenic as Hugh Laurie and his gang, alas. They are, however, the ones to turn to when no one can find a specific single diagnosis. And one might presume that, also unlike House’s gang, they won’t misdiagnose and treat for half a dozen things before they find the right answer. Jeez, if I’d known a year ago that this group exists I would have pushed to see them sooner!

So, we are now waiting for an appointment —hopefully sometime within the month of November. Dr. Mary said if they cannot see Nik sooner then she will begin to order things like an MRI, another round of comprehensive blood work, and any other possibly useful diagnostic tools at her disposal.

Meanwhile, we wait. And hope. And pray that it is none of the things that have been mentioned in passing as “things we need to rule out.” Scary things. Life altering things. Yes, potentially more so than even autism.

I wrote in a recent email to another mom that I wasn’t “going there yet.” That was before the bottom dropped out this weekend. Somehow, I’ve landed “there” and it’s dark and scary and lonely. Watching Nik struggle and suffer so feels like watching an accident in slow motion and not being able to do anything to stop it. I have good moments when Nik does and not so good moments when he’s in the throes of pain. Then I take myself off to another room and fall apart. Then I pick myself up and carry on; I have no other choice.

I’ve taken to heart much of the support I received in response to my previous post. I’ve begun to carve out time for me where I can; I’ve resumed my twice weekly sessions with a trainer at the Y and set some goals to help me stay on track with taking care of my body. That helps with the mind as well. I’ve even let my mother do my laundry!

I’ve actively taken the advice of Redhead Momma and started to reevaluate everything in my life —to weed out the things that just don’t work. It’s been so hard to do but I have stepped back from some of the activities I’ve been involved in having to do with advocacy and helping to create a network of family services in my state. I’ve been working with a very dedicated group of parents for over a year now; we co-teach university courses in education, do professional in-service trainings for teachers, therapists, medical professionals, social workers and anyone in our state who may impact the life of a child with disabilities. It has been richly rewarding work and I have grown tremendously as a result. However, when I began the work Nik was in a much different and better place with respect to his health. Now it is time for me to take that outward flowing energy and refocus it inward on my immediate family.

It is difficult to let go of the “shoulds” in my head which make me think I am letting people down. I wonder how many of us live our lives out of those places within, fearful of not being “enough” if we don’t put ourselves out there in a bigger way. I have to remind myself that there will always be a time for me to jump back into the fray. That taking care of my family, especially my strong yet still-fragile child, is the most important thing I can do right now. It is my way of making a difference in this world.

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