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Tuesday, March 23, 2010

March of Dimes, Casting, G-Tube, Migraines




This year we are finally walking for the March of Dimes on May 8. I wanted our name to be Team Ellie but that was taken. So we are team "Warrior Princess". It's such a good cause. I am glad to be participating and feeling like we have the space in our life and the health to do so. If you are interested in joining us for the walk you can sign up on our site and we will see you there!

Serial Casting Update: Not so good
Ellie got through her first cast after one week of no sleep and with a cut/dent on her left ankle. This cut turned into a crater when the donut that they put to protect it in the second casts slipped. She made it through 4 days. The wound is still not healed. The gains she made - because it is clear that serial casting does work - are slipping away on that side. Her feet are becoming clubbed. It's upsetting. Ellie knows how to walk. She deserves feet that will hold her up. It's frustrating. We are reconsidering trying Botox one side at a time to see if the systemic reaction we got last time was a fluke. That may sound crazy, but check out these alternatives:

Phenol Block. Phenol in 1% of people it causes life long pins and needles at the block site....no thanks.

Baclofen: this relaxes tone systemically. Good bye head and trunk control.

Bacolfen pump inserted into the spine - forever. This delivers Baclofen to the nerves in the legs only but is 3+ inches in diameter and is a permanent implant....God that bums me out. It can still cause systemic side effects like fatigue....

Rhizotomies - where they cut the nerves that are effecting the muscles most. This works great for kids who are already walking because they can isolate the nerves most effected and the kid's brain is already wired up to walk, the muscles are there, etc. In kids that are not yet walking there is a good chance they never will with this treatment because what nerves do you cut? Which ones are the ones Ellie's body will self select to support her walking? Since it is in no way clear to me that she will not walk, this is a no go.

Her spine is ever so slightly curved too. I told the doctor that we had been doing less tummy time. I think he sensed my guilt. He was quick to point out that Ellie's tone on one side is much higher (her right side) and her left is weaker. He said it was the tone (the nerve signals flexing the muscles constantly) that is causing the spinal curve. He also said it is very hard to work the muscles on only one side of the body but that, that would help.

Her hip is the same amount effaced which is good because it didn't get any worse.

Other things we can try that there is no research to support they help or hurt:

Conductive Education
and
Feldenkrais
and
Hippotherapy
and
Start up again with TST
and
Hyperbaric O2 treatments
If we win the lotto I can quit my job to not only afford all of this but to get her there too...

Other things on the docket:

Dentist Visit: her first baby tooth is gone and I am not sure where...it's sad. There was nothing for the tooth fairy. I worry about how many teeth she can swallow...will those little baby teeth hurt her intestines? Then there is the obvious fear of her chocking on them.

G-tube revision: The good news is that she has gained back the weight she lost since September (can you imaging it taking that long to gain weight!) but now that she has, her g-tube is rubbing again and causing her pain.

Migraines: still a problem each month or sometimes every other month.

Adaptive Equipment needed: Potty seat, roll in shower for said Potty seat, hospital bed, stair lift, wheel chair van. Lovely things on our horizon that take months to get if they are covered under insurance and only half of them are.

It's a sea of medical issues and concerns in the murky land of brain injury recovery.

Let me tell you some good things too. She is eating up a storm and making progress on chewing soft things like banana. She is sipping slightly thickened liquids from a nosey cup! AND she is way, way into feeding herself! This is HUGE great news.

She is having success in Potty Training, we don't have a seat at home she can use which sucks and is the only thing holding her progress back.

School is going very well. She is being assessed for voice output devices FINALLY. I could sing! I can't wait till she shares with me any thought in her head that I don't have to muddy with my own interpretation! Right now I understand her much of the time, but sometimes she is communicating and I have to ask her questions to try to understand. Sometimes I ask her a question and in doing so influence her communication - that is what I mean by muddying.

Her fine motor is improving fast. And she is growing, growing, growing. She thinks it's funny when I tell her "Shhhhhhh let me listen to you grow!" And then I lean close and listen. She is way into They Might Be Giants which is the most age appropriate new thing she is into and what balm and relief from Signing Time and Baby Einstein! (No offense - but 7 years of those daily is a Looooooonnnnnnnngggggg time!).

She is maturing in her wants and needs. Her expressive language has taken a real leap forward increasing the need to give her better access to language. This is my favorite current problem to have. Also, as reported, the iPhone is still in favor and she is getting good at flipping between screens and tapping to make a video play. In the second picture up above, that is me and Ellie watching TMBG videos on the iPhone while taking advantage of a rare and lovely 65 degree day in the park.

Ellie is still such a sweetie who loves to laugh and laugh with you and include you in the fun. She is also, hands down, the cutest 7 year old I know. (not that I am biased). ;-)
I hope and think, when she is not in pain, she's a happy kid. Not as happy as she was last summer, because of all the pain on so many fronts right now, but hopefully we can stay on top of it and figure out how to move through this part of the story and get to a place where she is not in so much constant physical pain.

11 comments:

Candace said...

Kathryn,
It sounds like she developed pressure wounds from the casting. Faith did the same thing, on her first round of casting after Botox. They were on both heels and quite severe. We had to have wound care come to our house twice a week to work on them. They did heal but it took about 8 weeks and even today, nearly 2 years later, she still has problems with that area. She actually started breaking down two weeks ago, in just her braces. From what the dr's say, that skin is always extra sensitive after pressure wounds. She looks like she has a bubble on the back of both heels. I sure hate that she is having so many challenges right now. It is so hard to watch our babes suffer.

TheRextras said...

Tough decision - which treatment? (At least no one else is deciding for you.) I hear more botox success stories than not success.

If I was spending my money it would be for hippotherapy, in the belief that it would help her hips and above.

For her feet, I am very picky about braces/orthoses. Braces with flat soles do.not.control rotation (into 'club foot').

The very best braces (my opinion) are from Cascade, but there is work involved to get your locals to help you obtain them. Still, see dafo.com. They are very responsive and friendly on the phone.

Weight-bearing into well-aligned feet (in good braces) is powerfully effective over time and often underestimated by many.

Barbara

Anonymous said...

is there any way she can get that tube taken out, now that she can eat normally?

Chrystie said...

Kathryn,

This road sucks, for sure. But, then we have our Ellies and it sucks less :-).

I just wanted to comment on Conductive Ed. We've been involved with CE for 3.5 years now (since my Ellie was 1.5!) and we LOVE it. There are several kids in E's class who are more severely affected than your Ellie, and they are thriving with CE! Let me know if you want more info. Unfortunately, it's not covered, but a lot of CE centers keep the costs down (under $25/hour). I can't sing the program's praises enough!

Your Ellie just gets more beautiful with each pic you post! Sweet girl!

PrayforNathan.org said...

Have you heard of PERCS with Dr. Nuozzo? I am starting to look into it for my son - maybe less invasive than some of the other options, and I've heard some great stories about post PERCS accomplishments.

Lisa said...

We are trying for Hippotherapy right now for Samantha...I hope we get in!

I am so curious about CE. There is a camp in Canada (abilitycamp.com) and we are hoping to send Sam, but they don't have an appropriate session this summer. It is 5 weeks so it is a big commitment timewise, although it is really affordable. My parents actually volunteered to take Sam, and although it would be hard to have her gone, it would be such a great opportunity. So, we will see...


Thank you for your blog--thanks to you we are getting Sam an iPad--she can swipe on the iPOD touch and loves it, so I think the bigger pictures will be perfect for her!Then she can use hte communication stuff! It will be so helpful.

Lisa

Kathryn said...

Candace - it was certainly a pressure wound in the same spot she has ever had one - a gift of someone at her school who put her AFO's on wrong one day. :(

Anon- she is not at the point in her eating - for example she can't drink water yet or chew solids - where she is ready to be g-tube free. But that, of course, is the goal.

Barbara - I agree the weight bearing on feet is critical - hence trying to maintain her alignment.

Prayfornathan - Ellie had a PERC lengthening that did her some good for approximately 4 months. She hit a growth spurt and all gains were lost. That is not an option at the moment since she is still growing fast right now - we discussed that recently with her Ortho...But if I had to choose a PERC over a full on invasive heal chord lengthening the traditional way it's done - I'd go for the PERC

Lisa - Let me know how the iPad goes! if she has the fine motor to operate it - it will open up the world. Now if we can just get them to add a camera to it!

Retired Waif said...

I'm probably weighing in on something I know nothing about--but do you think it might be worth giving Baclofen a try? I was REALLY reluctant to start Baclofen for leg spasticity (MS-related) due to my (MS-related as well, lol) muscle weakness in my upper body.

I've found it to be a really easy drug that doesn't hit me too hard systemically, while still helping what it needs to help. Since it works so quickly, would it hurt things to give it a try? You can always take her off of it.

I promise I do not work for Baclofen.

Also, it's really nice to be back to blogging and reading yours, and I'm glad to hear that my birthday twin Ellie is doing well.

Hala (Retired Waif)

Laura said...

Kathryn,

I just want to say that I am so happy you blog about Ellie! My son is 2 yrs old and has a lot of the same issues as your daughter and in one night I read your full blog and that was a week ago, I wanted to let you know I took some of your ideas (like adding millet for cal) and he is accepting them with no problems. Your daughter is absolutly beautiful and am a bit relieved to see what excellent gains she has made and what might be ahead for my son(jonathan) again thanks!
Laura
jonathan25weekmiracle.blogspot.com

Penny L. Richards said...

"I worry about how many teeth she can swallow...will those little baby teeth hurt her intestines?"

Don't worry about swallowing baby teeth--they disintegrate in stomach acid, sharp edges first, the intestines never see them. At least that's what our dentist assured us when I asked the same question years ago.

Lisa said...

Kathryn, my kids are so into TMBG it isn't even funny. At least I enjoy them, too.

I'm interested to know the details of her fine motor progression. We are back to ground zero with William but I am hoping that he will gradually develop some skills with his right hand. He is a very determined and independent child so I am hoping that will help him along.