Monday, March 11

Just About the Boys and My Health

We've had a pretty rocky road to walk health wise. Nothing compared to what some families have gone through, of course, but difficult still. Tris didn't truly start getting really really ill till after we stopped breastfeeding (when he was 6 months old and just a couple weeks before the first time he stopped breathing). That correlation with Tristian not getting breastmilk and the almost immediate onset of symptoms was the single biggest reason behind our decision to allow Trace to self wean. There is a lot of evidence out there that suggest most human babies self wean around the age their immune systems finish developing. So if they might have a disorder that can put them at risk farther immune wise, well... it just seemed to make more sense not to risk it.

Trace is 2.5 and still breastfeeding (although lately he has slowed way down, mostly just before bed or nap now). Everything that has happened health wise with Trace compared to Tris has further convinced us that the breastfeeding has helped a lot. Of course it could be coincidence... but I very much doubt that, not when we know as fact that breastmilk offers immune support. Tris had started sleeping a few hours at a time around 6 months; but, abruptly switched to waking up every 20-30 minutes for the next year after we stopped breastfeeding and started having breathing troubles (Trevor and I switched nights so we each got sleep every other night. There was just no other way to really do it). Trace followed his brother's pattern up to six months... and then continued on lengthening his sleeping time (he still wakes up a few times at night to nurse, but Tris was still up every hour or so at this age). Trace has given us some scares, but not anything like Tristian did. We use to be in the er at the very least once a week with Tristian.

Figuring out food allergies with Tris has been amazing. It completely changed his health. Not a cure, didn't get rid of everything, certainly didn't get rid of all the autism like symptoms, but very very improved. Getting rid of food allergies did accomplish what even maxing him on maintanence steriods couldn't. Even after maxing his doses we were still in the er every week. We haven't been to the er for Tris' breathing for more then a year, incredible! The thing that figuring out food allergies seemed to have no effect at all on was his growth. Maybe the damage was already done by then, or maybe it's another part of whatever is really wrong with us.

In case you saw me talking about steroids and started thinking, "steroids cause growth problems!" We know for a fact that they in no way caused Tristian's, he had already been dropping off the chart and flatlining on growth documented for more then a year before the first time I let them give him a steroid, there are so many other, safer, drugs now, I kept hoping they could find another option. The steroids helped him so much in hind sight I felt like an awful parent. But because of that no doctor or insurance has ever been able to claim his growth disorder is from steroid use, so I guess my stubborness ended up serving a purpose anyways. It is still always the first thing a new doctor jumps on when they see his history- and I normally have to repeat myself a few times (and they have to check the prescription history just in case I'm wrong) that he did not have steroids for the first year/year.5 of the growth record before they will stop mentioning that the growth disorder may not be a real disorder but from steroid use.

And how do they explain Trace's growth problems and nearly identical just to a lessor degree labs if the steroids were the cause of Tristian's (Trace has never had steroids)? Coincidence... maybe something else and it's just coincidence it looks so similar... who knows? Doctors can be frustrating. When one or more of us is really ill they will concede this certaintly might be metabolic. That it's without a doubt genetic- but they don't know how to test it, it's not a metabolic disorder they know of. They will agree something is wrong and they don't know how to diagnose it exactly, but can treat the symptoms. They can diagnose parts of it. So we have ended up labeled with half a dozen supposedly unrelated disorders.... right, because that makes so much more sense then one root condition causing the rest. In a way it's almost worse when we are all doing ok... The doctors are suddenly backtracking, well it probably is just asthma, and kidney problems, and allergy problems that don't show up in our blood (but do skin test), and a growth disorder, and.....

You know that I grew until I was 25 years old? I started puberty at 11 years old but was somehow still growing at 25 (this is documented, before my first pregnancy I was 4ft 11.5inches, at the end of Tristian' pregnancy at 22 years old I was 5ft 1.5inches at the end of Trace's pregnancy when I was 25 I was 5ft 3inches). So even though we can't go back and test my growth hormone levels as a child, we can look at that and know there was something abnormal going on growth wise. And we can look at pictures of me as a child and see that I was tiny. But seriously, a normal healthy human does not continue to grow nearly a decade post puberty. Nor do they start showing symptoms of Thoracic Degenerative Disc Disease as a teenager. Or start passing out from low blood sugar as a teenager but never actually become diabetic (I still shake like crazy on prednisone from sugar levels but test after test and shown I am not deabetic, my levels are low, not high and haven't changed despite being over or underweight since I was a teen). Nor does a normally functioning human system spend 3 years at 50% lung capacity because of food and enviromental allergies while their blood levels indicate they are really not allergic to anything. And while were at it, most 4ft 11.5inch women don't have normal peak flows of 500-550 (pretty high, the norm for a 20 year old about 10 or more inches taller then I was). I'm inclined to believe my lungs were trying to overcompensate by drawing in more air.

For the past few years my peak flows on a normal day have been 250ish. Bad days saw me in the 100s (and the er) and good days at the end of prednisone runs saw me in the 350ish range, still short of breath- but able to function much better then what had become my norm. Figure out I'm allergic to dairy and corn and in months my peak flows are in the 400s again. Insane. But I'm not allergic to anything... the blood lab results prove it. I am pretty sure the pulmonologist I started seeing after my family doctor realized I didn't have a lung infection (after 5 rounds of antibiotics! Granted, I hadn't had breathing problems since Tris' pregnancy, it flipped a switch and suddenly I didn't seem to even have asthma, then Trace's pregnancy flipped the switch back and down a few notches for good measure). Anyways, from conversations at past dr visits with her, I am almost positive my pulmonologist did not really believe my peak flow was ever even as high as 500. Until this last summer when it crept back up to 450 and I demonstrated in her office; then further demonstrated it a peak flow of 475 after using my inhalor. I still remember the look on her face, I could almost see her thoughts realigning as she realized I hadn't been exaggerating the difference in my breathing after all.

Ah, rambling... I tend to do that while typing. I am a journaler, I am use to being able to type and type my thoughts out without worrying about boring whoever happens to come across it (cause it will just be me, and I don't really care if I bore myself). Switching from journaling to blogging has been an experience.

I don't really meant to get down on our doctors too much. They have kept us alive after all, and that's a huge positive (obviously lol). And not all the doctors back track when we are doing better. We have been blessed with a wonderful endocrinologist who when I asked if this might be metabolic even though we'd ruled out the known ones through testing (even for me, a couple years ago my pulmonologist had even considered that I might have adult onset cystic fibrosis, because sometimes my shortness of breath noticably lessons and my peak flows raise after drinking electrolyte drinks- we've noticed the same reaction sometimes in Tris). The boys endocrinologist told me flat out that he had considered it once Trace was born and his labs showed up as a metabolic disorder (even though the boy initial birth blood work showed up as different metabolic disorders). He even agreed when I asked flat out if this could be an unknown metabolic disorder that the symptoms and labs did suggest that as a possibility, but the science just isn't there yet to know for sure.

Anyways. Just venting a little :-/ Thanks for reading and please feel free to share any medical frustrations you have dealt with. I am always more then happy to 'listen' and lend and understanding 'ear'.

4 comments:

  1. That's a lot on your plate health wise! It's frustrating to not know why the body is not working the way it should.

    It seems as though our families have many similarities in terms of food sensitivities... my doctor won't even test us for allergies because we don't display typical allergy symptoms even though I KNOW certain foods have a immediate significant impact on us.

    And strangely enough I too was diagnosed with thoracic degenerative disc disease as a teenager....

    However, growthwise I'm very much the opposite of you. I was always the tallest kid in my class. I was always the awkward girl who was always put in the back with the boys in all of the school pictures... And then in grade 5 I stopped growing. I may have even shrunk some, in fact I know I have. I'm a small, albeit rounder, version of my 10 year old self... Most people don't just stop growing at 10.

    It's all just a mystery.

    And I don't mind the rambling. I find your rambling interesting. Much more interesting than my rambling which I tend to do a lot of lol I too come from the journal era!

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  2. Some if the similarities are what originally caught my attention on your blog :) The first post of yours I read was about food allergies... To which I nearly wrote a book in reply! I'm happy we conbected, it's very nice to have someone elses posts to read who sees to see things similarly and have had similar experiences, confirms it's not just me and my family :)

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  3. Nope, it's definitely not just you and your family. So many people are developing health 'issues' these days. I suppose people always did, but I think it's become a worsening epidemic over the years :/

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    1. I think a lot of it is that people are surviving now who wouldn't have. Before my mom everyone with these symptoms died before they reached adulthood in her family. My grandfather's (my mom's dad's) family went bankrupt trying to keep his sister alive and she still died as a child. So now we have people living who's previous times counterparts were dying and being labeled as pneumonia deaths, poor constitution, flu deaths, or infant deaths, etc... Now that we can treat the symptoms well enough to keep these people (aka us lol) alive, we are finding out that there are disorders out there that have never been looked into because nobody survived long enough and the science simply wasn't there.

      In fact that's the one line I get from our endocrinologist the most, the science just isn't there jet to know what is really wrong with us. We have a limited knowledge of how the body really works. We are only aware of a few hormones that control most functions. Like allergies. Almost certainly there are many more that play a part in allergies. But we don't know about them yet. So in our case where the iga and food serums and etc look like we are really really NOT allergic because they are so low... but we can show you the swelling caused from these foods. Chances are that we are using a different hormone(s) to deal with these allergies and foods then is known about. But since the science doesn't know about it we can't really diagnose the problem and do much more then treat symptoms and stay away from foods as we figure out we are allergic to them.

      Don't get me wrong, I'm glad we are all alive lol, but it's still frustrating. And I know you have been dealing with some similar situations. My bet is sometime in the next few generations there will be a break through and people will look at it not being treated correctly now like we look at the fact doctors didn't use to wash hands... or something like that lol ;-)

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