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having a really hard time
I hate complaining on here because I feel like that's all I do but things pretty much suck lately and bad news is all I have to share.
Ongoing testing at Children's Hospital shows that my son's kidneys are declining. All the little things I noticed but never really questioned (swollen eyes in the morning and occasional complaints of a sore back) are now great big fat warning flags I should have been more concerned about. We are now going to be seeing a nephrologist as well as specialists from biochemical diseases. He's also been complaining about pain in his testicles and the specialist in biochemical diseases felt lumps or something in his abdomen when we were there on Monday. He's getting ultrasounds of his kidneys and abdomen and testicles. He falls down "too much" and I have no idea what that means but they seemed concerned about his lack of ability to stay upright considering he is a very active little boy who can do anything, he just will completely fall down for no reason a lot and they think that's bad although they didn't tell us what exactly that could mean. We have also seen a neurologist at Children's but she said nothing is wrong neurologically (thank goodness)
Because the douchebags at my husband's work laid him off from his real job he is back working with another department in the same company, away from home for the next 10 days. I'm all alone with a sick little boy, obsessing about what is wrong and trying my best to keep up with full time school work and failing miserably. This has been going on for 9 months (since testing showed something was actually wrong, or 25 months, if you consider this issue as starting when he was born and never slept) with all the answers we get leading to more questions. I don't know how much longer I can keep up with everything 
Re: having a really hard time
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I'd be complaining too! Poor little guy, it's hard when they're so young that they can't verbalize specifics and may not understand what's going on
So, they say there's nothing wrong neurologically? Do they have a theory as to what may be the problem? Sounds scary, I hope they can get some answers for you really soon.
One theory:
renal osteodystrophy, which is rickets caused by the kidney's inability to convert vitamin D to an active form that can be readily used by the bones. In adults with this condition bone problems don't show up until well after kidney problems have asserted themselves but in young kids with growing bones the bone problems show up earlier, sometimes before the kidneys fail
Another theory:
the kidney problems are a coincidence and we are lucky to have caught it, completely unrelated to everything else
Neither of those theories addresses the testicle pain, or as far as I'm aware, the falling and the lumps in the abdomen
I tend to lean towards option 1, and it's a theory the awesome pediatrician we were dealing with put forward but at that time his kidneys seemed to be working fine so the theory was shelved. The specialist at biochemical diseases leans towards theory #2, probably based on the fact that his kidneys did seem to be working fine when tested 9 months ago. I can't accept that this is just a coincidence. I'm thinking either the test 9 months ago was wrong, or the problems weren't bad enough to show up on a test yet even though they were causing problems (they didn't do urine tests 9 months ago, only blood tests, and I don't know if blood tests are more or less accurate than urine?), or there is a mysterious option 3: a condition that is causing everything from the testicle pain to the bone problems to the kidney problems that we don't know about yet.
ETA: another thing that supports theory 1: in September we did an isoenzyme test to determine where the alkaline phosphatase was coming from (elevated ALP was our first conclusive sign of bone disease). At that time his levels of ALP were 7100 (under 360 is normal, over 1000 is "very high", and 7100 was higher than our pediatrician had ever seen). Most of the ALP was identified as coming from the bone so that's what they focused on but I found out later that over 2000 units were coming from the kidneys, which means his kidneys were over-producing ALP back then, although still passing kidney function blood tests. The total amount for his whole body from all sources shouldn't have been more than 360 but his kidneys and bones were hemoraging it.
God Lisah, that sounds so stressful. Not much is worse than your LO being sick.Are there supports available for you at the hospital? Can you take a leave from your program? I think it would be more than okay if you determined that it was all too much and needed to take a break from school.
Sending positive vibes for Ethan.
I'm so sorry you're still dealing with your son's health issues. I truly hope they find the answers very soon. In the meantime, your stress levels must be through the roof. I'm with CB: for your own health and sanity, perhaps you should consider taking a break from school.
And please, vent all you want. It's more than justified.
*hugs*
ITA with the above - vent all you need. I'm sorry that Ethan is struggling health-wise.
Hope you get some answers soon.
So sorry
Keep us updated. We are all thinking about you and the little man.
Oh man, one thing after the other hey? Don't ever feel bad about "complaining" here. Sometimes we just need a neutral spot to vent. I am sorry that you are going through this and I hope things resolve quickly for you!
I agree with PP - post as often as you need to. I think you're doing a great job even if you feel pulled in a million directions.
I sincerely hope the doctors figure things out as soon as possible so that they can start treating your little man.
Time to call in Dr. House!
I'm really sorry you're having to go through this. I'm with the other on maybe taking a leave from school for the time being. With all that stress at home about your LO I can imagine how incredibly hard it would be to focus on school.
My H's BFF's son was in Sick Kids for a while after he was born (smallest of triplets, had some sort of infant leukemia that goes away, but was still scary, among other things) and they were really fantastic there, so at least your son is in great hands.
Definitely keep us posted, and keep posting!
We'll just not tell H about this little fact, m'kay?
I'm not much of a regular poster but I am a regular lurker. That did not sound like a vent to me. It sounded like a very worried Mom. I agree with the others though that a Children's hospital is the best place for treatment. I hope that you get a diagnosis soon...
I have been trying to reply for a few days now (darn nest)
Complain to your hearts content.... you have earned it. Just remember that you are your child's voice so never feel bad asking a million questions, asking for clarification or for a second, third or fourth opinion or additional options.
Hang in there.