Lions and Tigers and Auras, Oh My!

A few months ago Jack started seeing an intern therapist, D, who is supervised by a licensed Marriage & Family Therapist, MR.  MR was recommended to us by a friend and has a ton of experience working with kids. We see her intern because she operates on a sliding scale and is much more affordable (since this is not covered by insurance Рour HMO insurance has very limited mental health services).

So Jack meets with D every week, who then discusses his case with MR and gets signed off for her internship hours. Jack loves D and it seems like therapy in general has been really helpful to him. He told me just this week that when he got in trouble at school recently, he decided he wouldn’t punish himself and instead would sit with his feelings about it! This is HUGE.

Anyway, David took Jack to his regularly scheduled therapy appointment this week. When they got there, MR was in the waiting room and she asked, “Jack, can you see colors around me?” Jack said yes and identified two colors. MR looked at David and said she would explain more after Jack left the room. So Jack went into the office with D for his therapy session, and MR proceeded to tell David that Jack is a very special kid, has a rare ability to see auras/chakras, and that he was put on this earth for a purpose. She said she could refer us to an Intuitive who could teach Jack how to handle these abilities.

AURAS? An Intuitive? Whaaaaa? *blink blink*

What is your reaction? Ours was utter shock. We aren’t spiritual in the least and this is way out of our comfort zone!

Later that night, I casually asked Jack a bit about it (I didn’t want to make him feel weird about it OR steer the conversation) and he said he does see colors around people – but not all people. He said he didn’t know what it meant, although he said that he saw blue and green around me and that he thought that green probably meant I was interested in what other people are interested in. I asked if he’d ever talked to anybody about this before and he said no – not until yesterday when he talked to D about it. I don’t know if she brought it up or if it was on his mind because MR had asked that question.

David and I are struggling with this whole thing and are VERY skeptical. I personally don’t like the idea of taking Jack to see an Intuitive – that doesn’t seem right at 7 years old! Even if I didn’t doubt that it would be helpful, it’s definitely a spiritual approach and I want him to be old enough to think critically about these matters before he receives any sort of instruction on them. We treat religion in the same manner – beliefs are very personal and I’d like Jack to develop those on his own (as much as possible) when he is more mature and not as susceptible to suggestion.

We don’t necessarily think we should just change therapists, though – he is helped quite a bit by D and after seeing her for two months or so now, he’s developed trust and is opening up to her more. If we changed therapists that process would need to be restarted. Plus, we don’t even know if D shares this line of thinking or if it’s something she would discuss in her therapy sessions with Jack.

ne thought David and I had is that if, in fact, Jack DOES see colors, there is another possible explanation (a scientific explanation) that makes more sense to us. Jack is clearly an emotional and sensitive kid, and there is no doubt he is intuitive, as well. There is something called Emotional Synesthesia, where a person’s neurological system is wired so that their senses are crossed – and that causes a person to perceive colors when they have an emotional response to something or someone. The research on synesthesia, especially¬†on that specific type, is still very new, and from what I can see there aren’t resources for it as of yet – just studies to validate that it’s real and trying to figure out what it means and why it occurs.

I also don’t know that it matters whether he has this or not! It doesn’t seem to be a problem for him (unless that is why he has such a difficult time dealing with other kids at school getting in trouble and his teacher being in a bad mood). There doesn’t seem to be anything we can do about it other than to be accepting. And maybe nothing needs to be done – maybe this is just a special ability that makes Jack extra awesome. ‘Cause we all know Jack is awesome!

Regardless of her years of experience in therapy, MR could be completely full of crap. Or she could be interpreting something that is actually a neurological condition in a spiritual way, rather than a scientific one. Maybe (BIG MAYBE), auras exist and Jack can see them and an Intuitive can help him leverage that ability. I really don’t know.

This is such a strange situation for us and we still haven’t gotten over the initial “Whaaaaa?” reaction. I mean, is this real life? As much as we love science fiction and fantasy, this feels a little too surreal for us.

I would love, love, love to hear additional perspectives on this! What would YOU do if your child’s therapist told you that he/she has a special ability and recommended a completely foreign path to explore it? Especially if your child says he has this ability, as well? Would you explore a spiritual situation for your child that differs wildly from your own?

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We Just Don’t Know

Here’s what’s going on in our medical mystery world right now. (Note: I wish I had the brain power to write this more better but I just don’t. I won’t be able to decide if any of this even makes sense. If you know an oncologist or neurologist or some other amazing person who can decipher medical crap, please feel free to seek their opinion on my behalf. Because I’m losing my mind.)

Yesterday Jack woke up with thigh & pelvic pain and complained that his legs were feeling “floppy.” (The best guess as to what “floppy” means is weakness. When his legs are tested, he definitely has strength but no endurance.) He couldn’t walk…for hours. I carried him everywhere. He sat on the floor while brushing his teeth and crawled to the living room if I wasn’t right there to pick him up.

He also complained, at various times, that his back hurt and his sides (kidney area) hurt and his chest hurt. He’s on ranitidine for heartburn and we give him tums, too. His kidney function tests look pretty good. He’s going to the bathroom normally…

The pain and floppiness comes and goes and doesn’t seem to be related to anything. It does seem to be more prominent on the weekdays, which could be because he’s taxed more by school but who knows. I mean, on the weekends he doesn’t have to get up at 7am and has a lot more time to laze about.

New symptoms crop up every now and then. The other day he trailed off mid-sentence when answering a question. Maybe he was just tired? Maybe not? He has pains in his joints sometimes, which is not uncommon with his meds anyway. He had a period yesterday where he felt cold sensations on his body (trunk area), as well.

So far the docs have lowered Jack’s Diamox dose to help with the acidosis and the floppiness. It hasn’t helped yet (after two and a half weeks at the lower dose).

Yesterday the docs said, what the hell, let’s try to give him sodium bicarbonate and see if that relieves his symptoms! Even though the acidosis is mild and most kids at that level don’t have any issues, maybe Jack is just more sensitive to it.

I’ve talked to all his doctors and the nurse case manager multiple times on an almost-daily basis. They don’t know what’s going on. We keep hearing suggestions that this is related to school avoidance. While that is possible, it’s really hard to buy when the kid is yowling in pain and refusing to walk for hours. And when he berates himself and hits himself in the head because it’s another day of him missing school?

I just don’t know. It doesn’t seem to fit.

Sure, he doesn’t like school very much and he doesn’t look forward to going. He thinks the subject matter is boring. But he has friends and loves his teacher and being at home is pretty freaking boring.

So everyone is scratching their heads. If it’s not a psychological issue, then other (also unlikely) possible explanations are:

  • Jack is more aware of what is going on with his body than your average kid, so is more sensitive to (and vocal about) the affects of even mild acidosis.
  • Jack has a neurological issue going on.
  • Something is going on with the cancer and they just can’t see it for some reason.

The sensitivity to acidosis is likely at least part of what is going on, but we’re not sure that it explains everything, particularly when the symptoms are getting worse but the numbers are pretty steady. The bicarb he started last night should answer that question one way or the other.

A neurological issue…would it come and go? I have no clue. He’s been examined by a neurologist for neuropathy and she said he shows very few signs of nerve damage – nothing that would suggest he would be unable to walk sometimes.

And then there’s cancer, which is what comes to mind first since that’s what he’s fighting anyway. The oncologists say that it would be VERY unlikely for relapse to happen while still in treatment. But, it does happen…rarely. Jack’s labs haven’t shown anything unusual, though. Cancer can hide in the spinal fluid…but Jack didn’t have it in his spinal fluid when he was diagnosed, so it would be super weird for it to appear there now.

Not impossible, but very unlikely.

The reason why I’m keeping this possibility on the list and asking questions about it is because when Jack was first diagnosed with Leukemia the symptoms were a lot like this. In fact, he had a virus around Christmas and even once that cleared up, he had weird issues. Pains that moved. Symptoms that came and went and were in different parts of his body at any given time. One minute he would be in pain on the couch and the next he’d be completely normal.

We worried he was trying to get out of school. Alas, he wasn’t! And thank goodness we had him checked out!

But he had a (slight) fever then. And he doesn’t now.

Anyway, he goes in on the 25th to receive chemo in the spine, so they can check the spinal fluid out then to be sure he’s cancer-free. Fingers crossed!

I just want him to feel good and be able to go to school. I want to not wonder what the next day is going to be like. I don’t want to worry about some sinister thing lurking around the corner to hit us in the head.

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Headache Season

Apparently headache season has begun. Most of this year my head has blissfully allowed me to go through life without threatening to randomly explode and I was very much enjoying it – until about three weeks ago. I don’t know if it’s the stress or hormones or the weather changes or a wonky alignment of the planets, but suddenly my head is either in great amounts of pain or threatening to be.

I’ve suffered from migraines all my life. As a kid, I didn’t know they were migraines – I just knew my head hurt and nothing seemed to help. I used to bang my head against the wall in desperation. It wasn’t until I was in my early twenties that I looked up these particularly bad ‘headaches’ and realized they were migraines.

This time two years ago I was having migraines several times per week. I tried various things and nothing seemed to help. It was like torture and I was going out of my mind! Then the abortive medication I took for them (Midrin) was suddenly taken off the market (apparently it had never been approved by the FDA!) and I headed to the neurologist’s office to see what else could be done. Because I have a sulfa allergy and the majority of migraine medications contain sulfa, my neurologist informed me that there were very few options. I could try Imitrex (which is a cousin of Sulfa, so might be okay) and if that didn’t work, I was left with Botox.

Uh, no. Please, no.

The neurologist prescribed a preventative called Topamax, along with the abortive Imitrex. Not only did the preventative make me utterly stupid (I started calling it Dope-amax) but I got break-through migraines anyway and the break-through ones ended up being worse! So I stopped the preventative and worked on being super strict with my diet and sleep routines. I stopped drinking any red wine at all because that definitely triggered sudden, severe migraines. Imitrex worked well enough and slowly my migraines disappeared as long as I was careful.

In the last two years, I’ve gone several months with no migraines at all. It’s been miraculous! I have no explanation as to why they’ve left me alone, but boy have I enjoyed it!

And now they are back in full, blind-in-one-eye force. I feel like I’ve been transported into Flowers for Algernon or Awakenings.

I still don’t drink red wine – or eat red grapes – and I have cut out chocolate, as well. But suddenly the migraines are back with a vengeance and seem unrelated to anything. Sure, maybe it’s due to the stress of having a kid with cancer but why NOW? We’ve been dealing with cancer for almost two years! It doesn’t make any sense to me.

And, as often happens with migraine medications, the damned Imitrex isn’t working well at all anymore. The medication reduces the pain to headache levels but I feel run down for days after I take it. Then the migraine comes back and the cycle repeats. As if that isn’t enough, my throat starts tightening when I take it now (perhaps an allergy is starting to develop?) and, last night, I had severe stomach pain afterward that nearly sent me to the emergency room.

So, I’m back to square one and feeling rather hopeless about it all. Why can’t my head just cooperate? Why are migraines so horribly difficult to prevent and control?

Do you get migraines? What helps?

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