Sunday, August 31, 2008

Update Finally!!!

I haven't forgotten about blogging but Charlie has been confusing me for the last couple weeks. He hasn't been progressing very well but nothing specific enough to put into print. His effort, connection, agitation, and stiffness varied day to day and even hour to hour. Something wasn't right but it was so variable I had a hard time describing it.
3 weeks ago Charlie started jerking around 10pm. This was consistent. He falls asleep at 8 and then would wake up sometime between 10 and 11 and starts jerking. I've written before about how this time we felt Charlie connected with us but now he was waking up and do funny movements. Typially he is throwing his arms up and to the side, his head to the left (opposite than the normal positioning) and pursing his lips for a second then relax back for a few seconds only to do the jerking again. At first he would do this 15-20 times then stop and fall back asleep. In between the jerks he would move like normal and his eyes even would follow movement. This pattern continued mostly every night so the Dr. I work for let me take the old EEG machine home to do an EEG. I didn't start until 10:00p so Britton wouldn't mess up the electrodes and ended up recording until 2a. I recorded a long time so I could make sure to get the jerking on record. It looked like he was having seizure ..... even for the 2-3 hours before he was jerking. SO the next morning I called the neurologist who had seen us in the hospital. After getting a little bit of the run around from the neurologists office we tried Phenobarbital from 17.5 to 20. We did this for a week and it didn't seem to help. He then started doing this jerking occasionally throughout the day, usually after he wakes up and his chin started twitching. We drew his blood and he was as high as he can go on Phenobarbitol medication without causing problems. Dr. Filloux worked Char in early Wednesday morning and he spent over an hour with us getting everything figured out. I showed him the seizures I had videoed and the EEG I had recorded. I figured he would say that Charlie was having breakthrough seizures and that we would try changing his medication. It was somewhat true...He believes that Charlie has Infantile Spasms. These usually occur in children under the age of 1 and are a type of seizure that typically happens upon awakening from sleep. They jerk and then relax several times. Read here or here for more info. The video below is what I showed the Dr.. I'm not sure how to cut the video so it's sort of a lot of the same thing.

video
I've read that there is a decline in the children's progression due to the infantile spasms. The therapists and I had been noticing this over the past couple weeks with Charlie. He had shown glimpses of better head control, purposeful movements and tolerance for therapy but all of this had either plateaued or declined recently.


The treatment the Doctor recommended was ACTH which is a hormone that increases the body's production of steroids. It usually stops the infantile spasms if the child is an infant but has a lesser chance the older they get. Dr. Filloux and I decided that we would try this more aggressive therapy despite the side-effects. If it doesn't work then we will try different seizure meds.
Things Dr. Filloux told me about ACTH
* It is an injection that I will need to give him daily for at least 6 weeks (probably more like 8-10) into a muscle.
* It costs $29,000 for a 30 day supply. Where do I sign up to sell hormones for that much profit? I'm so grateful we have insurance!
* We will know in about 2 weeks if it works or not. It is usually all or nothing. If it isn't working we will will try an increased dose once and if it still doesn't work we will taper off and try something else. If it does work then after the treatment the seizures shouldn't return.
* It has similar side-effect to steroids- excessive weight gain, water retention, “moon face” characteristics, Irritability, Anger. Sound fun yet?
* It can affect the kidneys and liver and mess with his blood sugars so he will be monitored every 2 weeks.
* It can increase his blood pressure so he will need to have to monitor it nightly.
* It decreases his immune system- This is what I am most nervous about because we are just about to start cold season. I was just starting to feel comfortable taking both boys with me everywhere. I guess we are back to staying home and limiting sick visitors.



Highlights from appointment with Dr. Such Neibar (rehab dr)
* Results from his hip X-ray show that he has mild hip dysplasia (they come out of socket) so she wants us to put him in his stander more often (3 times a day for up to 1 hr each) to erode the joints.
* Tight ankles and hands- keep stretching them every day and go back to using the leg and arm braces.
* Neck tortacollis- he still can move his head to the left but the fact that he prefers to have it to the right is making his right neck muscles stronger and shorter. We will start using a neck brace to keep his head mid-line and possibly botox his neck muscles in the future.

Britt trying out Char's new sensory therapy (Thanks Suz)
GOOD THIINGS I'VE NOTICED:
A month ago Charlie was discharged from speech therapy because she thought we could do everything she was doing at home. He seems to enjoy baby food. On a good day he can swallow ½ jar of sweet potatoes. We try to practice this everyday. He also likes to suck on pretzel sticks.


Improved vision: He is doing so great with his vision. He is now following moving objects more and more. There are no indications that he recognizes anything that he sees yet. Eyes still prefer to be to the right but now he will occasionally move them to the left. The right eye also still drifts to the right.

33 comments:

Paige and Josh said...

Thank you so much for updating Ang. I have been so worried and I haven't known whether to call or to let you tell us when you were ready. I put Char's name in the temple yesterday so there are some extra prayers for him from there too. I am so happy for the positive things but a little disheartened by the negative side too. I know it isn't possible but I keep wishing we could have the smiley little boy back again. I love and miss you guys. Josh and I both have the flu so we won't be dropping in to visit! (If only we really could drop in to see you!)

Meghan said...

what a sweet little fighter. he isn't going to do anything the easy way and wants really badly to be in textbooks i think. smart boy. and who in our family hasn't had a rapid excessive weight gain? can't really think of anyone except. anni.

but in all seriousness, i know the next perhaps 6 months are going to be terribly challenging on you all.

i propose a new and invigorated fast next sunday for all of those who fast. I say we, as a group of people who love charlie and his family, fast specifically that the new seizure therapy will be effective and that he can maintain his health through the rsv/cold/flu season. i put it out here on the blog because i know a lot of people all over the world will share their prayers with charlie. i truly believe in the power of prayer and know that this sweet boy can benefit from our prayers and faith.

we all love you guys and i hope you can feel that over the next challenging months. let us know where and when we can help.

Anonymous said...

Good luck Charlie. Everyone knows you're a true fighter. A champ. That smiley, beautiful boy is inside. Good luck with the new medication and hopefully there will be few, if any, side effects. Especially a decrease of the immune system as this is the time of year for all the germs to appear. We check often for updates and keep you in our prayers as well as the prayer roll. Best wishes to you and your loving parents and brother. Be cheerful. It's BYU football season! We know your dad will keep you posted on games.

Anonymous said...

Is there anything the community can do to help you out? Fundraising? We know how the blogworld and communities can rally together in time of need. Please let it be known if there is anything that can be done to help out.

erin said...

Sweet Charlie... Hang in there guys and please know you are not alone. I am seconding meghans fasting plan. Strong work. You are amazing and I guess its time to tie another knot in the rope and hang on. Our prayers are with you. Love you so much!!!

Anonymous said...

Charlie, you are so sweet and so strong. As a mother, I wish so badly like your mom and dad that I could just make it all go away. Hang in there and be strong. We will definately be participating in the fast and prayers for you this next Sunday. What a wonderful suggestion, Meggie. I wish you and your family all the best in the winter months ahead. You have blessed our lives, and will continue to always be in our prayers. Love, The Danowski's

Anonymous said...

Hey, Angel,

I've been thinking about you guys a lot lately. I am excited about the progress in vision---but I imagine it's hard not to let the setbacks overshadow the progress sometimes. Remember that the Mennings (all of us :-)) are available if there's any way we can be useful.

Kara

seanteyatroy said...

I sure love you guys and pray for you daily. Hang in there

Anonymous said...

Hang in there ! Shyla

The Woolstenhulme Family said...

WOW I can't believe how much Charlie looks like Britton in that first picture. I love the picture by the way it is ADORABLE! Hang in ther Charlie and family I know you can make it through this. All of us here in Oakley will be fasting for you and I will ask EVERYONE I know to fast as well. Hang in ther we LOVE YOU SO MUCH.
The Woolstenhulmes

Anonymous said...

Charlie you are a fighter, keep it up little man. I am excited to hear about the vision? That is awesome. I love the picture with him and his big brother. You can tell they have a true bond. It will be fun to see how the BYU season goes. Keep up the great work Parents. You and your family are amazing people.

Love,

The Bountiful Family

Shani said...

Thanks for updating Ang. I love this little boy. I really liked the picture of Britton and Charlie at the top. It almost looks like Britt is wordlessly communicating with Charlie. You can tell just by the way he looks at him that he loves Charlie and will always have a protective bond with him. I agree with the fast. Strength in numbers. Love you all. Very much!

Through the Looking Glass said...

I second Meghan's comments about the weight gain - though he must get that from Rob, because you, my dear, are a golden wisp of sunlight (nothing personal, darling Rob)

Doesn't it always seem like life is a little good with the bad? I too will pray that Charlie's little system will be bolstered and that he will soldier on through this tough time. Ang, I hope we can still go out this month and that time will be a little respite for you in some way.

Peterson Fam said...

Hey Ang and Rob, I just want you guys to know how much we love you and you are always in our prayers. Zak said he sure enjoyed Rob in Michigan. I am glad he was able to get a little break. Ang if there is anything I can do to help you out let me know. I am sure you hear that all the time, but even if it is just a little trim on the boys, I am here! Love you guys!!

Kristine said...

I'm so glad that you updated! I think of Charlie often. I'm sorry to hear that he'll have some more challenges to overcome, but try to think 6 months out...it helps me. I have an 8 month old daughter who had bacterial Meningitis at three weeks of age. Charlie's story and hearing about the both of you help keep me going when I'm feeling worried about Katie. I DO plan to write a proper messsage giving my story and telling you why exactly Charlie has impacted my life. Just give me some time. Babies, so much work. :)

Anonymous said...

I am there with you on fasting next week. I always love having something special to fast for and nothing is more special than sweet Charlie! I continue to pray for all of you daily. I wear my bracelet all the time to remind me of your strength and courage. I will send Grandma Cheryl my story about the Charlie bracelet in China. I promise to take some time this week and type it up. It is a story that will remind you of how special your family is to many of us. I pray for peace and comfort for all of you.
Connie

EMILY said...

Hunter had infantile spasms for almost a year. In the midst of changing, increases, and tweaking with meds, we did ACTH twice. I would love to give you my 2 cents on the ACTH. Too much to write in a post. Give me a call if you want. 801-636-3825. good luck with everything. I was with Hunter at Primary's for three days last week. We started him on a new diet, called a ketogenic diet to try and help control his seizures. Seizures are very frustrating sometimes. I want to know how you got an EEG machine at home, that is not fair at all... You must have connections. We have been battling seizures for two years now, and have only recently reached out to get opinions through other people who deal with what we do. Every kid seems to be somewhat different, so you never know, but it has been nice to bounce stuff off others. It was nice to read the update, glad he is doing well with eating and his vision.

Bryson Bennett


It is a good thing that the Lord gave us husbands for things like ACTH injections. Hunter was seizure free on ACTH-that has never been duplicated by another med. Good luck figuring that one out! Charlie is so sweet. Love, Emily Bennett

whitney said...

Coop! He can't just be textbook can he? Next Sunday, check. I love seeing his cute face with Britt. I agree with whoever said they are communicating somehow - Britt is a special kid. I have a surplus of hormones, do you think I can sell mine for that much?

Jada Rose said...

Angel I have pictures of Rob Cheering on the Utes in his "UTAH FOOTBALL" shirt at the Big House! That's right un-photoshopped true Ute photo's. Ok he may have only been cheering on Paul Kruger. But he was in fact wearing a Utah Football shirt, and it was GLORIOUS! Photo's will be well worth the viewing! I think we will wait until he goes out of town to release them so he can't remove them from the blog! ;)

Thanks Angel for letting him break away, and spend the weekend with us! He is without a doubt one of my most favorite individuals to spend time with! Everything is more fun with him around! Sitting at that game with Rob made my month! I love you guys! -Troy-

Tammy said...

Sorry that you are going through this. Hope things get better soon. I know what it is like to have to give your child injections. We had to give Kayden growth hormone injections and iron injections. He knew exactly when he was getting the iron injections. That was one injection that was very difficult to give to him and luckily we don't have to do that any longer. Good Luck and you are in our thoughts and prayers.

Anonymous said...

That was a great update! I cant believe how big he has gotten too! What a doll. Angel you are one tough cookie but you are also so smart and way to be proactive about the seizures!

Anonymous said...

Thanks for updating...believe it or not, there is still a large crew of people around the globe checking in on your family and Charlie. You guys are always in my prayers....and I hope that you have some good news with the new hormone therapy, and I second what another post says...if there is anything the community of people who care can do, please let us know! Keep fighting Charlie!

Love,
Leane Vandeman and family in Los Angeles!

Anonymous said...

The seizures are so scary. My now 6 year old daughter started having seizures when she was just 13 weeks old and had hundreds of them before they got them under control. We too, had the phenobarbital,and we also had tegretol. Happily she was taken off her meds at 5 years of age and has been great ever since.

I pray that your sweet Charlie will outgrow his seizures and that until he does, that meds will control them. It is a trying time for the entire family. You guys are doing great. During those quiet times that seem to be the hardest sometimes, remember that your little guy is in there just waiting to come back out and play.

I know that you probably already do this but...stimulate him, expose him to many different things to help bring him back out.

Good luck and know that you are in my prayers.

Oh...I also wanted to comment on the picture of Charlie and Britt laying side by side, their profiles look so much alike!

From a friend in Erie, PA

linds said...

thanks for the update ang. britt and char are lucky to have such a smart, sweet momma. obviously that is where britt gets all his smarts. we love you charlie, hang in there. we are praying and fasting for you.

Anonymous said...

I love you Ang!! I am so impressed with the way that you make sure that things happen for Charlie. You can see how much your family means to you and those around you. I wish i could be there to help you. Just know that you are in our prayers and we love you dearly. If you need anything let me know.

Stefanie

Steph said...

Thank you for the update. We're praying for more Charlie Steps forward and a "boring" cold and flu season.

Megs said...

Hey Angel and Rob,
What precious little babes...they are both so beautiful. We will be fasting and praying for you on Sunday...you continue to be in our thoughts, prayers, and hearts.
Megan

Anonymous said...

Dear Char: Thank you for showing me yet again that I need to be patient and wait in life even from my wheechair. This week has been hectic in my job and at my house too.It is definitely Not as hectic as mommy or Daddy's or even yours,but... I know Mom is worried about your spasms lets hope they subside a lot, I still have spasms and I am grown up. I think Mom is also worried that your PT has Plateaued. Maybe that is true,but your Spirit has not. We will wait and see. I know all the People who are going to fast and Pray Sunday love you alot.Shyla in MT

Jessica said...

One step forward and two steps back, it must seem like! But it seems like all in all he's heading in the right direction. Sorry about the seizure like activity, that must be so frustrating! We're thinking about you.

Meghan said...

just a little reminder from auntie meggie to remember charlie in your fast and prayers tomorrow. there is power in prayer and in numbers and charlie could use some of our faith right now. love you little man.

Anonymous said...

I am so sorry to hear about the spasms and I hope that the therapy (injections) work well. Thank you for highlighting the good things that you've noticed - I am very happy to read about him eating baby food and sucking on pretzels. That's great. The video was heartbreaking, but I have to say that it was wonderful to see Char on film. It allows someone like me feel as if I know him personally. He is the sweetest little boy and I loved seeing his sleepy face at the end.

-A friend in NC

Janene said...

Hi Angel,

I left your home yesterday uplifted I know that sounds strange considering your son is not at all in the condition you would like but I felt a Spirit there. Your son is fulfilling a calling that we may not understand in this life. He is a true treasure.

A the same time my heart just aces for you and the daily emotional roller coaster you must be on as a mother. I am overwhelmed by your positiveness and your strength. I know you just want to protect your little guy from ever germ on the planet, but I want you to know that if there ever is anything I can do to help you out, I would be honored.

My prayers - everyday, for as long as you need them!

Janene

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