Friday, October 28, 2011

I promise, we do more than just go to doctor's appointments...

I'd like to update everyone on regular life, because I promise, we do a lot more around here than just go to doctor's appointments. HOWEVER, it just so happens that we have been to see a doctor 3 times in the last week and the information from these appointments demand some attention.

First, Ben had an EKG and it was fine. However, we were encouraged to contact his psychiatrist, regarding his headaches. We think they are related to his medication. So, we did and the dose was increased. It does seem to have helped the headaches a bit, but he sure does hate the medicine. We are looking into natural remedies and nutritional changes in order to control the Tourette's, but until then, we are trying out the medicine.

One really good development we've had in the "Life with Tourette's" journey is that we met today with Ben's new talk therapist. His last talk therapist wasn't such a good connection for Ben, and while we like his psychiatrist, we WERE happy that he suggested we use someone else for talk therapy. So, even though the new counselor is a woman (and Ben had requested a man), she still has a dog, which was important to Ben, and she seemed so gentle and kind on the phone. Well, we met her today and we LOVE her. It's the first time I've seen Ben respond to a doctor or therapist the way he did; he's been so happy and animated since, especially when we talk about the appointment and her dog; and I feel so hopeful that this woman can help Ben gain some positive skills towards dealing with his challenge and accepting that there are fantastic things about BEN!

So, all day, I've been thinking about a few things...I can't believe sometimes how much I entirely love this kid. It's sometimes so hard to see that in the midst of his tantrums and issues and such. But seeing some peace in him, and watching him truly work toward making positive changes in himself, has been giving us glimpses of the the kid we knew was in there, and the reason for the hope we've held onto in the dark years of training and disciplining a "challenging" child...he is a fantastically intelligent child who has a tremendous amount of humor, love, gentleness, and spunk in him. He's observant, honest, tries to always choose to do the right thing, and loves being included and having friends. He doesn't understand how other boys can call him stupid or irritating, because when he feels that way toward a friend, he tries to stay patient with that friend and then unloads on me later. As Ben works through his challenges and grows, I am seeing a kid who has the world at his fingertips, who has such greatness in him ready to burst forward, and the best thing is, I get to go along for the ride (at least part of it)! When my 10-3/4 yr old son holds my hand (yes, in public and without shame, ladies! Be jealous!), I am reminded of how lucky I am to have this super duper challenging child, because often, the things that are the hardest are the things that give the best reward.

So, in a sense, Tourette's has given me a gift and I'm so excited as we open the package and see what blessings we've yet to find!

Finally, for a quick update on our other appointments...I had another Vitamin D blood test and my levels are normal now. I'm sure I'll keep taking it for another month, at least, and then taper off to a more normal dosage on a regular basis. Teddy had a retest of his Creatine Kinase levels, as they are double what they should be. They are still highly elevated, yet the cardiac tests we've run so far have been normal. So we are baffled at where this muscle injury/fatigue indicator is coming from. He has a great doctor as well, so we are confident he will find the cause. But I sure would love to hear some experiences anyone has had with this elevated enzyme, if any of you have had experience with it. Just for brainstorming's sake!

Tuesday, October 11, 2011

I knew there was a reason I became a CNA...

Gasp! Another entry in less than a month? I know, crazy! But I thought I owed an update on Ben to all of you dear friends who commented and emailed such encouraging words.

So, the short story is this...he's GREAT! The medicine seems to be having a good affect. He's not too tired, although does feel a little different. He has not had any huge fits or bouts of anger, and is a lot more polite, but all this is from 2 things. One, his tics are lessening a little and not as frustrating (although I do agree with the doctor that the dose will need to be increased to truly affect the tics); and two, he has hope. He no longer feels like he's a 'broken' kid who just can't obey...he understands, truly, that he's a 'broken' kid (like the rest of us 'broken' people) who has a unique challenge in life (like a lot of us) and sometimes, that unique challenge makes obeying harder (or controlling his anger, or not freaking out over noises--which he hasn't done as much this week!) The diagnosis of Tourette's has kind of made everyone around here ease up on each other, and also made us so thankful that it's JUST Tourette's. Not a whole bunch has changed, yet everything has changed. Weird, I know.

Now, for an update on some other medical issues I've broached over the last 2 years. Many of you have asked, and I forget all the time to update as things get resolved or as we learn new info.

First, Sophia. She has been seeing a doctor off and on for some embarrassing flatulence issues (embarrassing to us; she actually claims that she LIKES tooting so much and is quite proud of some of them...not sure who her parents are, but I don't know ANYONE like that). This issue, combined with her ever quickly increasing weight (despite what we feed her) have caused us some concern. Nutritionists say we're feeding her just right; lab results have shown no celiac, diabetes, thyroid, or other typical disease; and she eats less calories than Ben and Madeleine. Our next course of action is to explore gluten-free and food allergy testing. But we also know, just by looking at her, that her frame and metabolism take very much after her Aunt Heidi and Mommy, which will lend her to being "sturdier". It is affecting how she feels about herself, so that is what we're working on now, as well as making it fun to eat healthy and exercise more. Her issues with constipation continue to be watched, as that is what we thought led to her appendix rupture, but overall, her big issues have been handled.'s been two years since she had her appendix out! Can't believe it's been that long!

Now, for Madeleine. She continues to be under the care of an awesome endocrinologist. She is making slow progress in the height department, but the endo is pretty confident that there is no Human Growth Hormone deficiency, and that she'll at least reach 5'2, which is good! It would appear that she has no Celiac disease, no diabetes, no thyroid issues...her tummy aches were probably due to stress, and her fainting episodes we think were related to hypoglycemia. So, we just have her eat more frequently, especially when she's going to be in a long rehearsal or something. Overall, she is doing well and we don't have many worries any longer about the "late bloomer" in our family (whom the endo thinks will 'bloom' AFTER little sister times for us, having two girls that are 4 years apart, sharing puberty almost on top of each other. Yay.)

Now for me. I have dealt with weight issues my whole life, as well as depression, skin issues, womanly issues including Polycystic Ovarian Syndrome, infertility, miscarriages, extreme some other things. Finally, after years of different tests and psychotherapy and drugs and whatever, I have a doctor say, "Let's check your vitamin D levels, and re-check your thyroid." The thyroid had possibly been done in the past, but I wasn't sure how recently. Well, I didn't come back with high glucose and cholesterol like we thought I would. I actually have a severe vitamin D deficiency and hypothyroidism. So glad to have found the answer to a lot of my issues. I'm feeling a little better and continue to lose weight on Medifast, although the thyroid issues makes it go a bit slower than I'd like.

Finally, Teddy. We thought he was just fine, until today. He went in to have his hands checked out for possible carpal tunnel. Turns out he does have moderate carpal tunnel, and they found this out after the painful nerve tests. Oh, and the painful muscle test where they insert a thicker needle into muscles in the hand, arm and bicep, about an inch deep, and kind of dig it around, to test for the electrical current. Yeah. I didn't tell him about that one, because I didn't have that one done when I had a nerve conduction test. So, the doctor also tested some blood levels, to rule out some things related to fatigue. We are going to take care of some sleep issues, and follow the protocol for the carpal tunnel to try to avoid surgery...but in the meantime, Teddy needs to think on some vocational choices, since the carpal tunnel will only get worse with his line of work, and surgery will help but not prevent it from coming back if the same repetitious movement is done. Also, if taking care of the fatigue doesn't help, and the carpal tunnel doesn't improve, then we're looking at testing for other things, things that I don't want to speak aloud because they are scary.

So, that's it in a nutshell. I tell it all in one place, at one agonizingly long time, because lots of you have caught snippets here and there of one child or the next, but I've failed to update completely. Contrary to appearances, we really are a healthy family. We just get odd medical issues, seemingly all at the same time!

Prayers would be welcome, as we continue to navigate Benjamin's issues, but also as the family's other medical things come into play. Madeleine is weary from being 13 next month, but all her 13 year old friends tower over her and sometimes, kids her own age treat her like a baby. Heck, kids who are a few years younger than her treat her like she's 8! Soph is weary from being overweight with no change despite our attempts. Teddy is weary from the pain in his hands and worrying about the affect on his job. And I'm the Mom. I'm just weary, period. LOL! Seriously, if we come to mind, prayers would be appreciated.

Wednesday, October 5, 2011

Life Altering Days

So I haven't posted since June. Yikes! Although...not like a lot of people noticed! :) So much has happened...a lazy summer; a new homeschool year begun; new dance teams; new sports teams; new, so much. But really, nothing really life altering. All things that could be caught up quickly, over a cup of coffee. Until today.

Because of today, our family's life was altered.

Some background info...Ben has been struggling this past year with severe negative emotions. He has been sassy and obstinate; he has called us names; he has threatened to call 911; he has asked for a new family; he has refused to eat, to sleep, threatened to run away; he has said he hates his sisters; he has said he hates us; he has said (more often than anything else) that he hates himself; and three times, he has expressed the desire to die or to kill himself. He's 10, by the way.

There's so much in this that's relevant. First, he's my mini-me...dramatic, emotional, deep thinker, argumentative, self-focused, a bit manic. Second, he's been parented in the past in a very reactive manner, with our emotions often winning over common sense, so he reacts differently to things than the girls do. Third, he's a boy who is encroaching on puberty. And finally, he has been in trouble more of his life than not. I own what parts of his current problem are based on poor parenting choices I have made. I have taken steps to rectify those and back in June, Ben started counseling again with Teddy and I attending as well (same counselor Ben had when he was 5 and 6).

After about 5 sessions, we didn't see much improvement or have ANY feedback from the counselor. Also, over the past 7 years, I have been conversing with Ben's pediatrician about his tics and school challenges, only to be told it's all normal. Two years ago, I discovered Sensory Integration Syndrome and Tourettes, and went armed with evidence that I think my son has both those as well as possible dyslexia...only to be poo-poo'd by both the pediatrician and the counselor. So, I chose to address the sensory issues at home, but left the dyslexia and Tourettes alone for now. Well, after realizing these counseling sessions were a waste of time, and after a particularly hard night (Ben woke me up at 2am, yelling that he didn't want to go to summer camp and he wanted to die, and it took 4 hours to calm him down), I decided to seek out psychiatry. At this point, a friend in the medical field suggested that Ben was showing symptoms of bipolar disease, which happens to run in both sides of my family to some degree. So, in August, we were given the soonest appointment with my second choice psychiatrist...October 4th.

Today, I considered skipping the appointment. He's been doing better, and I've been more consistent in our school routine which has helped with a few of the issues. He hasn't muttered anything about death or hate since August, but bedtime every night is a nightmare. He still can't sleep well; food is still a battle; he still bullies Sophia over the little noises she makes and the odd things she does that irritate him; and he still is lacking in self-confidence. So, we went.

He was scared and nervous. After I shared the gist of the last 10 years and Ben shared where he struggles the most, the doctor began to talk about medication. I was a bit ticked off, thinking, "I knew it, you're one of those doctors...running a pill palace, practically giving away prescriptions and rolling in the bucks." He said the pills would be for Ben's tics, that he could make them almost completely go away and it might help Ben have the mental capacity to cope with life better, since most kids with Tourette's struggle with tics, focus, short fuses, "crisp" personalities, sensory issues...wait. WHAT?

"Who has Tourette's?" I ask. "Ben?"

"Yes, hasn't he been diagnosed? He's a clear cut case. Vocal and motor tics, lasting over 6 months, that are migratory."

"But I asked his pediatrician, for 2 years now, and was told no way, that it's just a normal part of boys and growing up and he'll grow out of it" My Momma bear was getting riled up and it was either going to be directed at this psychiatrist or at our (now former) pediatrician.

"It's Tourettes, without a doubt." He went on to explain how all of Ben's challenges fall under this umbrella; how he will most likely grow out of it but the medication will help take the edge off for him so that he can sleep better, and slow down his "short fuse" so he can think through his actions better, help him obey us more and be nicer to his sisters just because it helps slow down his adrenaline reaction, and that we would combine that with talk therapy with a female counselor in the office (who also has a dog, which really helps Ben relax).

Now, don't get me wrong. I'm not a fan of medicating kids, and I don't plan to share publicly what he's on because, for whatever reason, people like to judge me and I figure I'm already giving enough fodder to cast a few stones. But, to hear that my son actually has a reason why he's been so prickly his whole life, and to see him get some relief from these emotions and movements, about which he has said "I just can't control myself and I hate it"...for this, I am willing to try the medication and see if it helps him just a little. He needs some hope, and this family was quickly running out of it. Madeleine and Sophie cry themselves to sleep most nights, because bedtime is when the fighting is the worst. School was becoming impossible because it was always a fight. Car rides were a nightmare, because he would yell and complain the whole time. And quite frankly, my son was getting awfully hard to be around, and I hadn't used the word "fun" in reference to any activity he's part of, in a very long time.

I don't share a lot of this with many people, and between this and some health issues I've been having (blog post for later on), the past year especially has been a challenge in ways that are hard for some to understand. I've asked for advice on how to deal with Ben's behavior and had well meaning friends tell me things like, "You feed him junk, change that and he'll act better" (because my organic apples and whole wheat bread and no candy and almost no fast food was all junk, right?) or "It's because you let him play video games and read Harry Potter" (not sure if 20 min a day, if that, of video games has that much power...and he's finally reading, praise the Lord, so I won't go there) or "It's all spiritual, you need more church and more prayer" (more prayer is always a good thing, not so sure on the more church yet)...anyway, you see my challenge. We have read every parenting book, tried every tactic, been accused of bad things and judged for good things, tried nutritional approaches, prayed, begged, researched...only to still have crying kids at night and terrible feelings of despondency all around. I have felt very alone and have quit sharing my struggles with most of the people I'm surrounded by, because of this. I have felt like no one understands what it's like to have a child who's just off a bit...not enough to necessarily require special help, but just enough to make life hard...that's Ben. Always been a little out of sync, a little disconnected, a little lost. My heart has always been broken for him; broken by him; and done some of the breaking as well...perhaps today, this will start to change.

To have a diagnosis means I can begin to help my son heal, be empowered, to cope. There's a lot to learn, a lot to process. We've already had a few deep talks, focusing on the fact that this is something you have not who you are, and that in lots of ways, it makes him very unique and special. He asked if he can tell people because he gets made fun of a lot for his tics, and he surprisingly gave me permission to tell whomever I wanted as long as it wasn't his friends because that's his job to share. :) His sisters sang him a song (I think something from Seussical) and cried a little.

Anyway, I share this with you few who read this, because I would ask for prayer (if you are inclined) or advice (if it is non-judgmental) or positive support in any way, as we explore this new area. It's scary, giving my son a pill that could change him, however temporarily. It's also scary to "own" this disease. But within this fear, I'm finding relief, and hope, and power. I'd love to have you walk this journey with us and share in the blessings I'm sure will reveal themselves to us.

And perhaps, this writer's block will take a vacation soon.