Friday, October 16, 2015

Nash's Chiropractor X Rays

Well, this kid has a gap too, but it isn't nearly as bad as his brother's.  There is however, something more ooncerning here.

The angle at which Nash's neck sits is way too steep.  His neck also curves opposite of the way it's suppose to.  If you look at the photo carefully you can see two lines that are drawn on the xray.  The first line (the steep one) indicates the angle at which his neck is now.  The second line is where the angle of his neck should be.  Even this isn't the most important thing we learned today though.

Nash's C1 is not being smooshed into his brain stem like Caleb's (good news).  However, because of the angle at which his neck sits, his C2 is pushed into the back of C3.  AND since his C2 is oversized it sits on top of C3 quite a bit.  If this is not treated it will cause degenerative bone issues in the C2 and C3 later on.  

GOOD TIMES AT THE BOWN HOUSE TODAY!

Considering what we've learned by having xrays of the boys done I went ahead and took Sam back in this afternoon (Nash's appointment was this morning) in order to have new xrays done on her.  She has had xrays before (the boys haven't) and we've never been alerted to a problem like either of the boys have had show up.  (That's good news.)  But, just to be on the safe side, I wanted to have her looked at again knowing that her brothers have issues with their C1-C3 area.  We will get her xrays back on Tuesday.  Until further notice the boys will be visiting the chiropractor 2-3 times a week.  Here's to many visits with our friend, the chiropractor!

Thursday, October 15, 2015

The chiropractor

We went to the chiropractor on Monday, Oct. 12th.  We have been seeing this particular chiropractor for years (like 6).  He has treated all six of us at one point or another.  When we got there I explained what was worrying me about Caleb and all the things we had already done/been through & the results.  I reminded him that Caleb has never had x rays at the office before and all of this was why I wanted him to have a full work up.

Dr. Fullmer proceeded to do a set of x rays and then do a brief physical exam.  Upon his physical exam he discovered that Caleb's C1 was turned.  I asked what could have caused this and he explained that it could be left over from birth, from a fall, from anything really.  He assured me he would go over the x rays with a fine toothed comb & look at all the systemic stuff,

We went back today to look at x rays and see what Dr. Fullmer had to say.
His biggest concern is this xray:
You can see a large gap between his skull and his spine.  That gap is not suppose to be there.  Essentially, his brain stem is being squished into the base of his brain.  This is your behavior center and could possibly be what's telling him he doesn't want to eat.  It could ALSO be what's affecting/causing his ADD.  Interesting....

 Here is his second xray.  This one shows that the spots in his spine that correlate to his stomach are off.  His intestines had a bunch of air in them as well.

This is his final xray and it's just a side view of his stomach/spine.

The recommended course of action?  Get him in there a lot more regularly to work on that spot in the first xray.  Dr. Fullmer said that fortunately it doesn't look like it has fused that way - yet.  I told him I wonder what Nash's looks like right there.  The difference between the boys is that Nash was diagnosed with ADHD and Caleb was diagnosed with ADD.  When Nash's meds wear off it isn't as drastically noticable.  When Caleb's meds wear off it's like Jekyl & Hyde.  I asked Dr. Fullmer that if that could be what's causing the ADD then how do the meds they give him help control his behavior?  He explained that the ADD meds are siimply treating the symptoms of the problem and not the problem.  The ADD meds are muting the neurosynapsis that are happening so it controls the behavior but it doesn't really fix the problem - which is obvious given his behavior when his meds wear off.  Dr. Fullmer took some xrays of Nash (like that first one of Caleb) so that we can see if the same thing is going on with Nash.  We go back tomorrow to take a look at those.  So, perhaps we can fix two things with one??  I'll hope but not get too excited yet (don't want to jinx it).

Tuesday, October 13, 2015

Baby steps for Caleb

Here's where we currently stand since our last post:

1-Parasite results came back....NEGATIVE
2-Turned in food/glucose monitoring journal.  Appointment with dietitican on Monday, Oct. 26 @ 3.
3-Visited the chiropractor yesterday & got a full work up (x rays, brief physical exam).  X ray results will be ready on Thursday.  Appointment at 9:30 am.  Upon physical exam it was found that his C1 is turned.  Dr. Fullmer said it could have been caused by anything - a fall, left over trauma from birth, etc.  He will be going over the xrays with a fine toothed comb looking specifically from C1 down at all systemic possibilities.
4-Called Peterson Wellness Clinic.  Appointment is scheduled for Thursday, Oct. 29 @ 4 pm.

And if all that isn't enough, the poor kid has to have his top four front teeth pulled on Thursday, Oct. 22nd as well!  We are having the same problem he had with the other two teeth he had pulled.  He for sure got the weird teeth gene.  He's in 2nd grade and has only lost 2 teeth - both of which were pulled in January 2015 because the permanent ones were growing in way behind the baby ones.  When he went in for his check up in May they told us that he had a cavity between the two top front teeth but that he'd likely be losing those any day so they wouldn't worry about fixing them.  In July we visited the orthodontist.  I asked if he was going to have the same issue with all his teeth as he had had with the bottom ones.  Dr. Guymon decided to do an x ray to see what was going on.  He told me that all his permanent teeth are right there and that they are very crowded because the permanent ones are BIG (big surprise, everyone jokes about the "big Bown teeth").  He said that if he hadn't lost them in 3 months that he would put in an extraction order.  We went back to the orthodontist in September and I told him that not one of those top teeth were even a smidgen loose.  He took a look and sure enough, not even a wiggle.  So, he put the extraction order in.  That was about the third week of September and the 22nd of October was the soonest I could get him into the dentist.  They told me they'd put us on the list so that if anyone canceled we'd get a call so we could get in sooner.  So far no call.  So now the poor kid has to have four teeth that are no where near loose pulled in addition to everything else!  I told Travis the Tooth Fairy better pay really well this time around!

Monday, October 5, 2015

A Caleb Update

Well, things have been....interesting.

Putting Caleb on an appetite stimulant still doesn't sit well with me.  I did speak with my pediatrician about the appetite stimulant having depression as a side effect.  He assured me that the one he prescribed is a histimine (or anti histimine, I can't remember!).  He said that anti dpression meds are out of the scope of a pediatrician so they don't every use/prescribe medications in that area if they don't have to.  That takes some of the worry out of this possibility for me.  However, I really and truly do not believe that an appetite stimulant is the answer.  The kid is hungry.  He TELLS me he IS hungry.  He just WON'T eat!  It's mind boggling for me.

I went back into the pediatrician's office last week to disucss all the options with the pediatrician.  At this meeting we went over all Caleb's labs.  His liver & kidney function are normal.  His mono check was negative.  His iron is good.  His thyroid is good.  His white blood cell count is normal.  The only thing out of the ordinary was his glucose level (217).  Dr. Clarke said that he really just thinks/hopes that something went wrong with that lab since everything else was normal.  He did say that it is possible that it's super early diabetes.  I did tell him that there is diabetes in both of our families - but, it's always been onset in much later years, not childhood.  I also mentioned that my sister was hypo glycemic.  I asked if we needed to be checking his blood sugar regularly to rule out diabetes.  He ended up sending me home with a glucose monitoring kit.  It only has 10 strips to check with and to get more we need a presciption, but it gives us a start and an idea.  He explained that we need to check his blood 1-2 hours after a high carb meal.  I explained that I had started a food journal for him.  He seemed happy that I had done that and said that when I had at least a week's worth of entries that he wanted me to bring it in for the dietician to look at.  At this point I did already have a week's worth of entries, but since we are now checking blood sugar, I'd like an additional week's worth of entries with the blood sugar checks noted by meals to get a better view of things.  I asked if the appetitite stimulant would effect the blood sugar readings and he told me that he wanted me to wait to start the appetite stimulant (good).  So, for now, we are just continuing on as normal and checking his blood sugar 1-2 hours after a high carb meal.  So far his numbers have ranged from 81-129.  A "normal" range is 80-120.

I have been speaking with just about everyone about what's going on.  I'm all for any input.  I know I don't know everything out there and people on the outside of the situation may have some ideas that I don't and haven't thought about.  One of the guys at work asked if he had been tested for a parasite.  I hadn't even considered that.  I called the dr.'s office back today and asked about whether that was a possibility.  I have never had to deal with a nurse as rude and snotty as the one I did today.   I was not happy by the time I got off the phone.  I had originally explained what was going on with Caleb, labs, etc.  I asked if his white blood cell count had originally been checked.  She told me that it usually is in one of the main labs that's run.  I told her I realize that but it was never mentioned so I wasn't sure.  She told me, "Well, they won't tell you if it's normal, they just say everything's normal."  I proceeded to explain to her that I had sat with Dr. Clarke and went over all of his lab results and white blood cell count was never mentioned so I wasn't sure if it had been checked.  I then asked her if it was possible that he could have a tape worm or some other parasite.  She told me, "Well a tape worm will usually make you eat a lot more, not lose your appetite."  I had to be patient at this point.  My friend that I had spoken with at work said his mom was a nurse for 15 yrs of his life.  That sometimes if the parasite doesn't like what you're eating it can make you sick so you don't want to eat even though you are hungry.  My line of thought is this, "Let's rule out all the really easy obvious stuff before we send him off to PCMC Failure to Thrive Clinic, k?"  So, I explained again that I understand but I'd still like to know what Dr. Clarke thinks.  She told me that she'd leave him the msg and that when he responded to it they would get back to me.  A few hours later she called me back to tell me that yes, his white blood cell count had been checked and yes it was normal.  Then she tells me that in order to check for a parasite, a stool sample would need to be taken, etc.  I proceeded to ask her where I needed to pick up the stuff for the stool sample.  Apparently, this caught her off guard because she goes, "Oh.  Well I'll have to let Dr. Clarke know that you want to test for that so he can put the order in."  At this point I decided I didn't care too much if I was nice and polite any more or not.  I told her, "Yes.  I want to test for that.  I'd hate to get to the Failure to Thrive Clinic at Primary Children's and have them tell me that it's just a parasite."  That pretty much shut her up.  I got a call earlier tonight to tell me that I could pick up the stuff for the stool sample so I went and picked it up.

So, as of right now we are
1-Keeping a food journal
2-Checking glucose levels after high carb meals
3-Waiting to do a stool sample to rule out parasites

I still need to
1-Call the Petersen Wellness Clinic
2-Call a foot zoner
3-Set up a meeting with the chiropractor to discuss the issue with him & get his input

So, we are making slow progress, but progress none the less.

Saturday, September 19, 2015

Caleb struggles

If you know Caleb very well, you know that saying he is a picky eater is putting it lightly.  Caleb is a horrid eater.  He wasn't always as bad of an eater as he is now.  Sure, there were a few things he wouldn't eat, and he was never as great of an eater as the two older kids, but he still ate.  The last year though, we've had a serious struggle.  What Caleb will and will not eat has gotten narrower and narrower.  For the last nine months Travis and I have talked to him about what happens to calves when they don't suck (figure relate it to something he's going to understand) - they get a tube up their nose and their milk goes up their nose to their stomache so they get the nutrition that they need.  I've talked to my pediatrician about these concerns multiple times over the last few years.  He's always assured me that Caleb will eat when he gets hungry and I have kept that as my mantra.

The first ADD medicine that we had Caleb on (Vyvanse) was a stimulant which means it could also act as an appetite suppresant.  Nash had this problem but after some discussuion he realized it was improtant for him to still eat something even if he wasn't hungry.  Nash also didn't want to be taken off his meds if he didn't gain weight which is what would have happened.  This summer we switched Caleb to a non stimulant ADD medication (Metadate).  This medication should not affect his appetite at all.

Knowing how picky Caleb is about his food, I hate having him eat school lunch because I can't keep tabs on how much he's eating.  So, since the beginning of the school year I've been sending him a home lunch.  This is not an easy task.  Caleb will not eat peanut butter sandwhiches.  He will not eat ham sandwhiches.  He will not eat spaghetti-o's or lunchables.  In fact, he will not eat meat...period.  He does not like sauce of any kind.  He will not eat the majority of fruits and generally won't eat any veggies.  He will eat: Pancakes, waffles, french toast, bacon, eggs, cheese quesadillas and go gurt.  Tell me how to pack that into a lunch.  He can't open the go gurts without help and won't ask anyone in the lunch room for help opening it.  If I put any kind of chips or cheetos in there he'll eat those but nothing else.  If I put a drink in he will drink a it and if there are fruit snacks, he'll eat those.  The first week of school I packed him a half of a ham sandwhich, cheetos, a fruit snack and a drink.  He would eat the fruit snacks and the drink and maybe one or two cheetos.

Mind you, the whole lunch thing doesn't sound too awful, right?  I mean, they do eat lunch early at school.  However, take into consideration the following:  Caleb will take 45 minutes after he gets out of bed to get his pants and shirt on.  This leaves him time to eat what he can in the car on the way to school.  That means he either eats a piece of toast or some dry cereal (he refuses to have milk on cereal anyway) or a go gurt.  Not exactly the most nurishing of what should be the best breakfast of the day.  Combine this breakfast with the lunch he just ate.

Now, dinner, well, that's a whole nother problem.  It use to be that I would dish a little bit of everything onto Caleb's plate and I would tell him "You have to eat all of something.  At the very least half of two somethings."  He would fight it for awhile but eventually (when he got tired of sitting there and watching everyone else get up and go) he would eat something.  If he complained I would tell him that I am not a restuarant.  He could either eat what was there or wait until breakfast.  This too, would convince him to eat something.  Now, remember how my pediatrician said he'd start eating when he was hungry.  Well, as of late when I give him his plate he will start complaining about everything on said plate.  When I tell him his options are to eat what's in front of him or wait until breakfast 9 times out of 10, he will choose to wait for breakfast!  Even though he has just said not 5 minutes prior that he was hungry.  Now don't get me wrong, if I make a big breakfast for dinner, he's all over that.  But really, how much nutrition is there in pancakes or waffles or french toast?  He can't eat eggs for every single meal!  If I feed him bacon all the time he's going to have a heart attack at 15!

And that brings us to today.

Last night I went to bed at 11 pm and he was in bed asleep by then as well.  This was early for him - he generally stays awake reading until midnight.  I woke him up at 8 am so he had had 9 hours of sleep.  Should have been plenty, right?  He told me his stomach hurt so I told him to use the bathroom and then get dressed so he would have time to eat some food (he literally only ate 1/2 of a serving spoon of rice for dinner last night).  Caleb proceeded to sit on the bathroom floor for the next 35 minutes.  I walked back into the bathroom for about the 15th time and repeated what I'd already been saying "If you don't get dressed you aren't going to have time to eat before school so your stomach is going to keep hurting.  Hurry and get dressed so you can have plenty of time to eat!"  He just sort of started at me.  At this point I knew we weren't going to get anywhere.  We have to leave home by 8:40 to get to school on time so Nash doesn't end up with all his morning work as homework.  I just looked at him and said, "Caleb.  I don't know how to help you any more.  You won't get dressed so you can eat.  You don't eat and you don't feel well.  You don't feel well and you won't eat.  Just go lay on my bed.  I'm taking you to the dr. today to talk to him about how you eat."  Normally this would elicit a blood curdling scream and a quick response to action.  He sort of looked at me and shrugged like whatever.  I felt defeated at this point.  I got Nash to school and came home so I could teach preschool.  I had moved all my pm kids to the am class so I could haul him into the dr. this afternoon and still make it to work at the grocery store on time.  By the time I was done teaching and could go check on Caleb it was 1:00 pm.  The kid was STILL sound asleep.  He had fallen back to sleep after I went to take Nash to school and apparently didn't move.  I woke him up because by this point he had been asleep for 14 hours which is unheard of - even for him & he's my late sleeper.  We got him dressed and he said he was hungry.  I asked what he wanted to eat and he said toast with cinnamon and sugar.  I went and made said toast.  I did not cut the crust off.  I don't always cut the crust off - they've gotten use to that and will just pull it off if they don't want to eat it.  He finally came in and sat up to the counter.  He pulled half the crust off of one side of the toast and then laid his head n the counter in an attempt to go back to sleep!  He never ate his toast.  He did tell me he had thrown up earlier.  It wasn't true throw up - he's got his croup back and I think he was mostly choking on drainage that was stuck in the back of his throat.

We made it to the pediatrican's office at 4:20 and went in.  When the nurse came and got us they weighed him and checked his height (he's actually up to 40 lbs now and he's 3' 9").  The nurse asked what we were there for and I sort of gave her the run down.  She went out and eventually Dr. Clarke came in.  Dr. Clakre checked him over good and then pulled up his chart.  He showed me his growth chart and miracle of miracles the kid is actually gaining weight.  He's in the very lowest percentile on the growth chart but his numbers are slowly going up on the line.  That was a bonus I hadn't expected.  Dr. Clarke said he wanted to run some labs to check his mono status, his thyroid, his iron levels and his liver.  He said that if all the labs come back normal he wants to try an appetite stimulant.  It was at this point that I pointed out that Caleb is not eating when he's hungry.  That really threw the dr. for a loop - I could see the confusion written all over his face.  He sort of debated what to do at that point and then said, "I don't want to be hasty in getting a feeding tube in him.  Let's check to be sure that there's nothing else physical going on and try the appetite stimulant first.  If that will push him forward and get him out of that I'd rather do that than a feeding tube."  I told him that was fine with me.  He said that if the appetite stimulant doesn't work after a few weeks I will need to call him and there's a pediatric GI down at Primary Children's Hospital that runs a failure to thrive clinic.  I explained to Dr. Clarke that the failure to thrive is my biggest concern.  The number of foods Caleb's willing to eat is shrinking by the day.  Not only that, but the condition in which he's willing to eat those few foods is also changing.  There isn't a single food I can say that without a doubt he'll eat every time.  There are numerous other foods I can promise you that my other children will eat every time you put it in front of them.  I cna't say the same thing for Caleb.  My concern is that eventually he's going to start showing symptoms of someone with anorexia and those are things that are not easily fixed.  I am thinking this because he's starting to show some of the coping mechanisims that people with anorexia use - pushing food around their plate and flattening it out to make it look like they ate more - he does this all the time lately.

I love my pediatrician because he really does listen to me when I tell him what I'm concerned about with my kids.  He doesn't just brush me off.  And, I could tell by the look on his face that when I said he's choosing to wait until the next meal even though he said he's hungry concerns him.  But, we are eliminating the simple things first.  We did the blood draw this afternoon and lab results should be back by Monday or Tuesday.  If they come back normal (I'm assuming they will) I would think that he'll be able to start the appetite stimulant by Wednesday next week.  If we try it for two week sand there's no improvement, then I guess we'll head down to Primary Children's to meet the pediatric GI and get his input.  So for now, we wait....and hope Caleb disliked the blood draw enough today that he'll actually start to eat something!