Thursday, December 05, 2013

I'm worried about my son and I'm not sure what to do.

So, I'm posting my thoughts here so I can start hashing through them.

1. He's been sick off an on (mostly on) for almost eight months now.

2. He's been to the doctor who ran the basic tests and reports back that everything is normal; but hasn't sent me a copy of the test results to see for myself.

3. Not sure it matters... as it 'feels' like the general malaise I'm dealing with. He's worse always after recess... which is when he exerts himself the most.

4. It's digestive issues, leg pain, feeling tired and 'off' along with a low-grade fever that comes and goes.

I know that part of the issue is that he doesn't enjoy the classroom environment. He struggles with some things and the more stressed he is? The worse his eye condition gets and it makes it hard for him to read.

He struggles with making friends... and ends up 'latching on' or expecting any friend to become his best friend... instead of 'going with the flow'. He tends to be a bit intense which can be hard to be social. Looking back? I was more worried about Adam at this age than I am Alex - and Adam is fine now... but he had hard lessons to learn to figure out how to get along with folks and make new friends.

My ideal world and solution is that Alex starts feeling better, goes to school, makes friends easily and has less stress.

Given I've spent the past eight years battling for medical treatment for my unidentified condition. And given that it's guaranteed he has at least a few of my genetics meaning he definitely has at least a little MTHFR. I'm not sure we'll be able to get him to a 'no symptom' state.

So my goals I need to set for this month to TRY to get to the ideal solution is:

1. Find MTHFR-related supplements in a chewable form
2. Keep trying gluten-free and dairy-free products to find items he will enjoy eating so that I can try to get him switched to a dairy-free and gluten-free diet.
3. Set up an appointment with www.refolutionarymd.com for Alex to start discussing his specific symptoms and anything else that the doctor would want to test for/look for.
4. Follow up with his psychiatrist and counselor about helping him with making friends.

In the meantime, I need to figure out what options might be available for what we can do in the mean time.

It's hard enough for me to believe that his illness isn't a ruse to get out of school... and I've been experiencing the condition myself and know that you can feel a little better and want to exert energy when you feel slightly better. So, him having energy about three hours after staying home from school? Isn't just him enjoying the free time I just conned me into. I get it, I do. But just barely. I still have my doubts. I know he knows my symptoms and it would be all too easy to 'claim' them for himself. But his symptoms aren't identical. I would think if he was trying to copy me he would complain of the same types of digestive issues, etc.

Now, it's at the point where I've been sending him to school. In part, hoping that he can 'toughen up' a little. THEN FEELING HORRIBLY GUILTY. I know myself just how hard it is to go to work every day and feel sick as a dog. The only reason I'm not on disability is because I'm just too stubborn and don't want to live on a disability income. I want more for myself and my kids and I can only do that by going to work every day even though I feel horrid.

Partly hoping that by sending him in the morning, that he'll feel a little better later in the day and not feel so bad (wishful thinking).

But, I've always said that he can go to the nurses office if he doesn't start feeling better and she'll call me and I'll come get him.  Only the nurse and his teacher have both refused to let him go to the office and to call me. So, he's getting worse because he can't come home when the condition worsens.... and trying to 'tough it out' is only making things worse.

I'm not exactly sure what to do about this part of things.... I think I've got a couple of ideas for what to start with...

1. Call school counselor and his case worker on his IEP. I think we need to discuss how to get him to be able to go to the school as much as possible, but not ignore the fact that he's ill as often as he is and what we might need to do to accommodate him. Maybe they can work with his teacher and nurse and give him 20 minute time outs to go lay down. If he feels better after resting - let him resume. If he doesn't then he gets to come home????

My issue is that I'm pretty sure he'd be needing the break EVERY day. And I'm  not sure how much accommdation they will provide without doctor involvement and justification of his health issues. And I can't even get justification of my own health issues from the standard medical practice.

I have spent months now trying to convince myself that my son isn't really sick. Heck, I spent years trying to convince everyone that I WAS SICK. Part of me feels like I'm letting him down so much. Part of me wants to pursue the same answers I tried to get for myself even though I'm pretty darn sure that it would be a complete waste of time.

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