where is Dr. House when you need him?

Logan had a follow-up with the pediatric sleep doctor this past Monday to re-check his iron levels.  As I've written about so many times, we're still trying to solve the puzzle of Logan's sleep (or lack thereof).  Its been three months since his last iron level check, and back then his levels had only gone up a couple of points.  We switched him to an iron pill (instead of a liquid) in early January, to be sure he gets his full daily dose. We've also made some dietary changes for him, trying to get more and more iron into his body.  We thought for sure his levels would be up by the end of February.

Turns out they were not.  In fact, his ferritin level was back down to 19, which is where we began last August, over 7 months ago.  Very frustrating, to say the least. I was pretty amazed it hadn't gone up one iota.  Since its our understanding his PLMD won't improve, and therefore his sleep quality won't improve, until his ferritin is in the 80 - 100 range, we have to keep at this little medical mystery until we've solved it.

Sigh. 

What causes iron mal-absorption?  Well, we're not exactly sure.  The first thing we're trying is to treat him for reflux.  If he's had on-going reflux (which we see no signs of, but we're told it can exist in  kids with no real obvious signs), that can cause iron to not be absorbed.   He's now on an over-the-counter reflux medication and will have more blood drawn at the end of May for another iron level check.  If it has not gone up then, we need to look into some other reasons.  One reason could be Celiac Disease.  I'm learning more and more, but again, there are no obvious outward signs he has this condition.   

Just in case though, I contacted a good friend who works with an allergist at the end of last week and she is doing another allergy patch test on his back this weekend to see if anything flares up.  The test isn't absolutely accurate, so it may or may not indicate a problem. We're testing for a reaction to milk, wheat, oats and corn in larger areas this time.  The patches will come off tomorrow afternoon, and we'll see if anything looks obvious.  Even if it doesn't, a next step might be to do just start a 4 - 6 week restricted diet for him, and we'll  have to decide if we're going to remove all milk, or all gluten first.   If we take one of those things out of his diet and see behavioral improvements and also see his iron levels going up by May, we'll know we're on the right track.  I suspect there may be something going on with milk, because he's always had what seems to be an addiction to dairy.  Removing dairy wouldn't be easy, as we've tried other types of milk (almond, soy, etc.) and he doesn't like them.

Gluten free might be more simple.  Fortunately, we have a lot of friends who are gluten-free and there are lots of well stocked stores nearby with tons of options.  I'll just have to educate myself on what to buy and what to substitute in for him to meet his little picky taste buds.  I'm sure it will be quite an undertaking at first, if we go down this path, since some of his main staples are cereal, macaroni & cheese, oatmeal, yogurt, pizza, PB&J.  But we'll figure it out.

Its just a never-ending science experiment for the poor guy, and I just sometimes wonder if we'll ever put all the puzzle pieces together to solve the behavior/iron mal-absorption/sleep disorder puzzle.  We started on this road over four years ago and have come to a lot of dead ends, a lot of appointments, a lot of questions, answers and research.   A lot of learning we have to be the ones to advocate for our son and stay on the doctors to give us answers.   And what we've been through with Logan doesn't even slightly compare to what parents go through with children who are truly ill with more chronic conditions. That, I can't even imagine.

We'll return to the sleep doctor at the end of May, and see how things look.  Chances are, she will schedule another sleep study for over the summer, just to see if his apnea is gone.

And we'll keep at this until we have some answers.

separate rooms

If you've been following this blog for a long time, you know that Logan has suffered from sleep issues since the beginning of time.  He did not sleep thru the night (at all) for the first 2 1/2 years of his life. I wrote so many times about it, as we tried to figure out why he never slept thru the night.   When he was 2 1/2, three years ago, we literally dragged his bed down the hallway into Dylan's room, and suddenly, he started sleeping.  It seemed he just didn't want to be alone in his bedroom at night.  Problem solved, at least for the time being.

Although he didn't get up at night screaming anymore, there were still other sleep issues going on but we didn't know at the time.  We've been treating him for severe anemia since August (via supplements and diet), which contributes to his Periodic Limb Movement Disorder, and prevents him from getting a good nights' rest.  His next 19 in August, and by the end of November, it had only gone up three points to 24.  It needs to be at least 80-100 in order for us to believe he has enough iron in his system to be getting a good nights sleep.  I can tell just by looking at his bed every morning (the sheets are so twisted its like a tornado came thru it). If his iron level continues to stay about the same, we will have to explore other possibilites as to why his body doesn't seem to absorb much iron.  And on top of that, we're probably looking at another sleep study in May to be sure his apnea has improved after his tonsillectomy and adenoidectomy. Another blog post for another day.  But before I drop the subject completely, let me just rant about the fact that I've had to spend hours on the phone with the insurance company getting his referrals documented for the care he's getting from the sleep specialist.  These are the times that try you as a parent, heck, even just as a person.  But you do what you have to do to make progress, and get your children the help they need.

Okay.  Time to move on.

After a very trying winter break (behaviorally), we decided for many reasons, it was time to try to move Logan back into his own bedroom.  Every night, bedtime was getting to be a challenge with them sharing a room. Logan still acts very impulsively and just couldn't seem to keep himself from climbing into Dylan's bed after we tucked them in, thus ultimately ensuing in fights and keeping them both up way too late.


It had been three years, and surely he had grown out of his not wanting to be alone at night right?  Plus, Dylan is 8 1/2 and although he never said it, I'm pretty sure he was getting sick of sharing his room.  I mean, we have a four bedroom house and for three years we've only used two bedrooms.  If we moved Logan out from under Dylan's loft bed, we could then set up a nice comfy quiet homework desk area for Dylan.  Sometimes after school behavior is very challenging for Logan as well, and its very disruptive to Dylan being able to focus on homework.  With a nice cozy homework area in his bedroom, he would then have another choice for some peace and quiet, when doing homework at the kitchen table isn't an option.  Logan could get some more responsibility having his own big boy room, and we'd let him choose stuff for the walls.  He would have his own quiet place to go to when he needs a break.  We filled it with his books, his beloved stuff animals and made it his own. 
 
This transition would also finally allow us to give Dylan more responsibility by having his own alarm clock and getting himself up in the morning.  We've always had to quietly wake him in the morning when they shared a room, so as not to wake Logan (if we could help it, since he needs all the sleep he can get).  We also let Dylan stay up a bit later, especially on the weekends.  This caused a problem of 'unfairness' in Logan's eyes when they shared a room.  But Logan needs to go to bed at a consistent time 7 days a week because he never sleeps in.  If we let him stay up until 9:30 or 10 on the weekends, we're basically setting ourselves up for hell the next day as we'll be up bright and early at 7 am no matter what. Dylan, however, taps into his future teenager, and will sleep until 8:30 or 9 or so. 

We made trips last week to Ikea, Michael's, Target and Homegoods last week and made it happen.  And both boys are really over the moon about their 'new rooms'.  Best of all, bedtime is now a breeze, and they both seem to be getting more hours of sleep.  Logan hasn't gotten up during the night at all.  His bedsheets are still twisted in the morning, and hopefully we're on the path to fixing that issue.  But behaviorally, he isn't having issues with sleeping in his own room all night.

We hung new curtains for both rooms, got Logan a new dresser, and let the boys choose what to put on their walls.   We created a homework 'office' for Dylan and I even found him a desklamp on clearance at Target that has a plug in for his iTouch.   We didn't have to spend a ton of money, either.  We didn't even have to paint, thanks to these awesome wall decals.

First, Dylan's room:

And Logan's, which  needed a little more work since no one has lived in this room for three years:

so cute hooks from Ikea

goodbye t & a

Logan did great today and it all went very smoothly.  We left his tonsils and adenoids at the Fairfax Surgical Center at about 10:45 this morning.  He stayed in recovery, sleeping in my arms, until about 1 pm.  

Now for the tricky part.  Keeping him subdued and resting for the next several days.  They told me not to let him outside, no running, no jumping, and to just keep him on the couch with movies and cold drinks.  Umm, yea.  They don't know my child very well.   He's already arguing with me to go outside and ride his skateboard which he will "only ride in the garage...he promises".  He has a giant bottle of hydrocodone so maybe that will help keep him still.   He wanted a cheeseburger on the way home, and a milkshake.  Its like it never even happened.

Andrew is upstairs resting.  I think in a few days he'll feel so much better.  I've been battling a head cold throughout this whole ordeal and truth be told, if I could crawl into bed right now and sleep for two straight days I would.

Here's my little bear prior to surgery this morning.  The nurses gave him a new little buddy to keep him company.

And here he is, snuggled in my arms post-op.  Friends of ours were there with their son, having the same procedure, and she took this photo.  Logan was so quiet, and so didn't cry or flinch even one time.  Such a brave boy!

getting some zzzzz's

Its been quite a long time since I've blogged about Logan's struggles with behavior.  There are so many avenues we've gone down thru these past years, searching for ways to help Logan appropriately express his anger.  He's such an incredibly smart, athletic, funny, creative and amazing boy.  He just continues to struggle with controlling behavioral impulses and emotions, particularly when things don't go his way. 

Tonight we are going to explore another possible link to answers for him.  I'm taking him for an overnight sleep study at a pediatric sleep clinic, not too far from where we live.  I've been hearing and reading a lot that kids with behavioral challenges can have sleep disorders, without the parents even realizing it. And those sleep disorders prevent the kids from getting enough REM sleep, which in turn affects brain performance.  Particulary in behavior and impulsivity and focus. 

Its all very interesting.   And, it makes sense. 

I struggle with a sleep disorder myself and it surely affects my life in many ways.  Logan never slept an entire night, alone in his bed, until he was more than 2 1/2 years old.  I blogged about this quite a bit back in 2008, here, here, and here.

Yes, that was our life for 2 1/2 years. We were insanely out of our minds exhausted.  The kind of exhausted where you think your brain it literally going to pound right out of your head, and you accidentally brush your teeth with Benadyl ointment.

We were at our wits end and scheduled a sleep study then, but were going tohave to travel to a hospital in Baltimore since he was still so small.  Exasperated and not knowing what else to try, we tried one more thing.  We moved his bed into Dylan's room at that point, and he finally began to sleep.  Maybe he just didn't want to be alone.  He would fall asleep at the beginning of the night quickly, but he would always, always wake up throughout the night and could not get back to sleep.  Once he moved to Dylan's room, I cancelled the sleep study, thinking we solved the problem (I talk about this here).

He still had some night wakings here and there since that time, though that has also dissapated now that he's five.  But who's to say the sleep he gets is quality?  There must have been a reason he didn't sleep for those first 2 1/2 years, and all of the reasons you'd attribute (i.e. ear infections, G.I. issues, etc.) were not the case for him.

I first took Logan to our ENT so he could visually take a look in Logan's airway and see if anything looked enlarged.  At a glance, his tonsils appear normal size.  They aren't able to see adenoids without an x-ray, so that might come later.  The doctor did say Logan's soft palate in his throat is enlongated.  This could be a sign of possible apnea.  We've heard Logan snore at night, another possible sign of apnea.  And not only is there apnea, there are a whole other list of sleep disorders that can come into play and affect health and brain function as well.  These things all led us to scheduling the sleep study.  We've had to wait all summer, but tonight they'll record him for bout 9 hours and see if his sleep is getting interrupted throughout the night.  We'll have results by August 18th, and will know if any next steps need to take place.

It may not lead us anywhere. And the answer to what makes Logan, well, Logan, may simply be that he is who he is.  Physiologically, there may be no anwers.  But what if there is something to this, and we can help him?  What if.

We'll just have to see what we learn.  This is a very non-invasive type of study tonight, and he thinks we're just having a 'sleepover' at the doctors offcie.  He will probably never even remember we were there.  I get to sleep in the same room with him, and we'll be home by 7 in the morning.  Easy peesy.  He loves going to any kind of doctors appointment, so I know it won't be a big deal to him at all.

We may or may not learn anything, but we had to at least try.  I'll have an update once we have results later this month.

this is what its like...

...to be four, and to be Logan, and to be exhausted after a huge meltdown that happens at 4 pm after you bite your brother over a Lego spaceship. 

Sigh.

our Logan

Its been a long time since I've blogged about Logan's developmental progresses with speech and behavior.  So hold on tight, this will be a long post but there's no way around it.  In some areas, things have gotten easier and some areas remain quite challenging.  I try really hard to focus on the positive. 


Logan is incredibly smart on so many levels, its actually scary sometimes.  He recently sat down (for the first time) to play Dylan's (highly addictive) Rush Hour Jr. game and was able to quickly solve almost every card right away.  He is already sounding out words.  He's extremely athletic with terrific hand-eye coordination.    I just signed him up for T-Ball this spring for his first ever season and can't wait to watch him whack that ball.  He has no fears and goes off to preschool each and everyday with a smile on his face, ready to see his friends and do his work.  He's passionate, creative, sweet and strong-willed.  He not only knows how to have a great time, he could care less about any rules telling him to live otherwise.  He tells me he loves me a hundred times a day.  He can be such a sweet brother to Dylan, and always makes sure Dylan gets his share of any special treat we might buy during the day while Dylan is at school.


But, he also still has a hard time controlling himself.  He has anger that is always right under the surface and if its the wrong situation at the wrong time, we have a Mount Logan eruption.  Its never a peaceful lava flow, rather, its gushing, bubbling and burning everyone that gets in its way.   I've talked about his anger many, many times, including needing to take a step away that this summer and get some perspective.  And for every one time I have talked about it on this blog, there have been a whole other slew of episodes that left us spinning and exhausted.  Its been a challenging time for our family.  I have lost my sanity many times, and somedays I feel like I've been hit by a truck.  But when that happens, you get up the next day and try to make it a better day.  Its just the way it is.


We're doing everything we can to help him learn how to control his emotions and reactions.  And I have every confidence, like a fine wine, he'll mellow with a little more age and experience under his belt.  Some anger can be good.  I'll certainly never worry about him being taken advantage of by other kids, for one thing.   However, I also don't want to worry about him being the bully in his class, or ending up at "Opportunity Station" as the principal in our elementary school calls the time-out work station next to her office.  

While there are a million great adjectives that can describe Logan's character, I don't envision "laid back" ever being one of them.  I'm fine with that.  We have one laid back child.  Dylan is just built differently.  He has his own easy going approach to deal with life.   And Logan is built the way he's built.  His passion and determination will be a huge benefit in some areas of his life, no doubt. There are plenty, plenty of descriptives we can be proud of.


Last year, we were under the impression that his behavior at preschool was much more controlled than his home behavior.  It seems that probably wasn't exactly the whole truth.   I had his fall parent teacher conference a few weeks ago, and it turns out he's having some issues with self control and expressing his anger appropriately.   This really didn't surprise me, since its true at home.  In fact, the thought of him having SO much more control at school than at home was somewhat alarming.  To be honest, it made me partly feel something must be setting him off at home to make it so much worse at home.  The fact that his lack of control carries over from home to school and back again makes more sense.

It turns out, also, he seems to have a few more issues with speech delay that need some extra help and focus right now.  So its been a couple of weeks of going back to the drawing board, making some phone calls, having some meetings and getting some help in place for him.


1.  He started speech therapy again today, and will go to speech once a week for an hour with an elementary school speech therapist.  He is in there with his teacher, and one other little boy having similar articulation issues.  He is struggling with consonant blends, sounds (especially at the beginning of words) such as "st-", "sp-", "sk-", "dr-", "th-", etc.   We listen to Logan all the time and get used to the way he talks.  But when he's around other people who aren't used to him, and he says the word "skateboard" and it sounds like "sateboard", well, it makes it hard to understand him.  You ask him to repeat himself, and then the anger kicks in.  He's frustrated you can't understand him (who can blame him?  HE knows what he means!), and then he starts yelling.

We have also found an excellent private speech therapist who will be working with him for the next few months, really honing in and trying to nip some of these phonological issues in the bud.  We're having to work the speech therapy in around his already busy preschool and taekwondo schedules, but it will be worth it in the long run.


2. We continue to work on the behavioral stuff at home and with his behavioral therapist.   We continue to use the jewel bear reward system, and every day is an ongoing series of reminding him what is appropriate and how to show respect for other people.    We have good days and not so good days.  We will be deciding this coming spring if he'll be going to kindergarten next fall as a young 5, or if (since he has a summer birthday), we'll wait until he's a young 6 year old.  These  next few months will be critical with the whole behavioral thing to see if we think he can handle it.   I'm very thankful for his excellent and helpful preschool teacher this year.   I had full disclosure with her and gave her Logan's history.  She is completely supporting everything we're doing at home, and giving me daily reports so I can talk to Logan about his days at school and find 'teachable' moments in them.  He's getting rewards for good days when we get home.


3. He continues to excel at Taekwondo, and in fact, is testing for his next belt tomorrow morning.   We'll all go to cheer him on and celebrate his success.   Taekwondo has become an important part of his life, he goes twice a week.  He's built a relationship with the other boys and his instructor.  And it reinforces all the things we are trying to teach him - focus, self control, discipline and respect.   Its been worth every penny.  If anyone has a child struggling in any of these areas and only has money to spend on one extra activity, this is where I'd put your money!


4. Back in September, we talked with a doctor friend of ours who thought it might be useful to have Logan allergy tested for food intolerances.    Logan has a history of not wanting to eat, asking only for very specific foods, avoiding entire food groups, throwing up easily and having a low gag reflex. We've also read a lot about the relationship between certain foods, particularly milk, and behavior.   Its all very interesting.   We took him to a popular pediatric allergist who did a patch test on Logan's back.  As I type this, I can't believe I never blogged about it back when it was all happening.  Its all been such a whirlwind with so many things going on at once.  I think I've also just needed some time to get my mind around it all.


But anyway, here is what the patch test looked like when the patches were on his back:

And here is what the reactions looked like after 48 hours when the patch came off:

Its hard to tell what you're looking at, but the patch reveal seemed to show that he might indeed have some intolerance to milk (which is a huge part of his picky eating diet, he drinks milk by the gallon). 

That led us to Step 2 - taking him to a pediatric G.I. specialist in our area to pursue more answers on the food intolerance.  To make it as concise as possible, Logan is scheduled to have an endoscopy on Monday, November 22nd (just over a week from now).  He will be put under anesthesia and they'll scope down into his belly, doing biopsies down his entire G.I. tract. They're looking for the  presence of eosinophils and irritation in the G.I. Tract...a condition called Eosinophilic Esophagitis. Whether or not this is related to behavior remains to be seen.  It could be another piece to the puzzle, or we might be discovering a whole new can of worms.We won't have the results back until early December, but we're hoping we can either rule this out completely or, we can try some elimination diets so see if less milk in his diet has a positive impact on his behavior.





Whew.  Are you still with me? Its a lot to take it, believe me, I know. 


I've had my hands full with taking Logan to preschool four mornings a week, taekwondo twice a week, and now speech twice a week, and still having time to fit in playdates, giving Dylan everything he needs to be successful at school and have lots of fun in his life, maintaining the housework, managing the family calendar...  Its true what they say, a mother's work is never done.  Its been a very busy fall indeed.  But I'm just doing what any other mom would do... trying to do the best things for my boys all the while trying to  keep a sense of  humor and sanity.


I've said many times how thankful I am that I've had this time to be home with my kids and focus on what they needed.  I can't imagine trying to balance in a career while all of this has been going on.  I have an incredible husband who works very, very hard to make it possible for me to stay home and there isn't a day that goes by I don't appreciate that.  


Being home as enabled me to spends hundreds of hours on the phone with insurance companies and doctors, taken Logan to more hours with more therapists and doctors than any four year old should have to endure, and stay on top of everything it takes to manage a household.  Many, many parents do balance all of this and also manage a career.  I just don't think its something that would have worked for me, at this point in our world.


I'm sharing all of this because I know I'm not the only parent with a challenging young child.  I know it helps me everytime I talk to someone else who has struggled with their child.  Parenting isn't always a neat, pretty package full of cute moments and laughter.  Its sometimes messy, loud, and not what you expected. Its hard.  Really hard.  And if someone can read this and find comfort in that, I'd feel very glad. 


Logan, from the casual on-looker, just seems like any other four year old boy. And in many ways, he is.  He just has some extra little special nuances that make him, him.  There's never a dull moment with Logan in our family, and I wouldn't want it any other way.


I love you, little buddy.

jewel bears

I think I've solved the photo problem (for now).   Sheez.  Onto the next issue.

Coming off of summer and getting back into the school year routine, we've been having some issues with the boys listening and doing the right thing.   Logan always has ongoing issues about complying, being respectful, following the rules and being a good brother.  Dylan is much more compliant in those areas, but he's tired after school and it can take hours to get homework done with all the stalling, whining and dilly dallying.  Logan distracts Dylan from doing his homework and then a fight usually ensues.   Major headache by 5 pm everyday.

This past weekend, we got an idea from our good friends Micce and Maryann, so I told her I was going to steal it.  

It started Sunday morning with a family meeting.  Together, the four of us, came up with the Rules of Our House.  These are rules we all agreed on together to make our house a happy place to be.

I went to the craft store and bought little plastic bear jars...the kind you'd fill up to make sand art.  And plastic jewels.   Making sure all the jewels are the same size and color, so they can't argue over that.

Everytime they follow the rules, help above and beyond what we expect them to do in their normal chores, or do something really nice for us or for each other, they earn a jewel (or two).   Once their bear is full to the top, they earn $5.   We've done away with allowance.  We weren't doing a good job of keeping track of who was doing their chores, and it just seemed like a hand out every Friday. This is a great visual and get them competing with each other to race to the top of their bear.

Its only been a few days but they are both scrambling to earn jewels like crazy.  We're keeping it very positive...never taking jewels away for bad behavior.  If they misbehave, they just can't earn a jewel.  Its a missed opportunity. But once they start following the rules again and doing the right things, the chance to earn jewels returns.