Monday, September 17, 2007

Always More Questions

We had an appointment last week with a new doctor who happens to be both a "developmental pediatrician" and a "pediatric physiatrist", at the Center for Exceptional Families. I was happy with the appointment, because I felt like this doctor was very thorough, thoughtful, and had a lot of good ideas. The appointment lasted THREE hours. That tells you a lot, because if you have any experience with doctors, you know that you usually get to see them for less than 20 minutes where you feel rushed and forget what you were there for in the first place!

I want to sum up what we talked about with the doctor, mostly for my own benefit because we covered so much that I feel kind of scattered and overwhelmed, and I need to sort out my thoughts.


I'll start with Holland, cause she is a little bit easier. Holland's diagnosis remains the same with regard to her CP. She has a mild left-sided hemiparesis, with overall hypotonia. She will continue to wear her Jumpstart orthotics to help with balance, and also to keep her feet straight and her ankles from rolling. In terms of therapy, she will continue with once a week outpatient PT, as well as 30 minutes each once a week of school-based PT and OT. The doctor recommended any additional therapy be recreational, such as dance, gymnastics, hippotherapy, or swimming.

This doctor also recommended looking into vision therapy for Holland to help with tracking, and eye coordination. The jury is out on whether VT actually works, and as with everything, there are varying opinions as to whether or not to do it depending on who you talk to. We have talked to people whose opinions we respect on both sides of the spectrum.

The doctor was concerned about both girls' BMI, as they are both obviously underweight (DUH!). She recommended Benecalorie to increase their calorie intake, and Benefiber to help Holland with, um, another of her issues. I have to look into where to get it, and I know many of you have used the Benecal so I would be happy to hear any tips you might have on where to get a good deal.


Eden was originally diagnosed with Spastic Diplegia CP in August 2005, when she was just a year old (8.5 months adjusted). At this recent visit, the doctor changed her official diagnosis to Quadriplegic CP with mixed tone. I guess I have mixed feelings on this. It definitely sounds worse, but she is still the same old Eden, so I suppose it makes little difference what we call it. The doctor said that most kids who are truly diplegic will walk, and have less involvement of the trunk than Eden. I pointed out that Eden does have good use of her hands, and I thought that the quad diagnosis meant that the hands would be more affected. She said that she feels Eden does have some mild spasticity in her hands, but I don't know about that. I think she has some issues using her hands because of the low trunk tone at her shoulders (makes it sometimes difficult to get her hands where she wants them), but if she is in a good supported position, she has great fine motor skills. But whatever. Eden definitely functions more like a quad than a di, but it is mostly due to the severe hypotonia in her trunk, so we'll go with it.

The good news was that she feels the spasticity in Eden's legs is very mild, and she is not a candidate for botox, casting, or surgical intervention at this time. She said that IF it weren't for the trunk issues, Eden would definitely walk (whatever that is worth). She recommended more intensive therapy for Eden's trunk, in combination with hippotherapy. She made two suggestions, one being EuroPeds, and the other Conductive Education. Both are pretty intense approaches to PT and OT, with many more hours put in than we are doing now. Right now Eden gets about 3 hours of PT/OT a week. With EuroPeds or CE, she would be doing 6-20 hours a week. So, I came home and started doing some research. As soon as I make up my mind to maybe give it a try, I talk to our PT who hasn't seen kids have good results with either approach. There would likely be a lot of crying involved, both on Eden's part, and my own, and in Eden's case a lot of breath-holding, turning blue, and passing out. Our PT said that most of the kids she know who have tried it end up hating PT, and giving even more of a fight than before. She also said that what little gains they do achieve are usually not maintained. She has seen more success with kids who are a bit older than Eden, and are able to understand the therapy process a bit better.

As with everything else, there is never a right answer. Is more always better? Are the time and money we spend going to pay off? Is our goal really to get Eden walking, or just to have a happy well-adjusted kid who knows we love her the way she is? There are always more questions than answers. I need a crystal ball.

In other Eden news, we got a prescription for Periactin (antihistamine that doubles as appetite stimulant)! I am looking forward to trying it. As an aside, Eden has been doing some fabulous eating lately. I think that the Prevacid may actually be doing something to help. But I still think the Periactin is worth a try. I know a couple of kiddos who have used it with good success. We tried in April to get a prescription from our regular pediatrician, but she, in cahoots with the allergist/immunologist, told us no. They said that it is contraindicated in kids with respiratory issues (asthma). I looked it up, and could not find this contraindication. I talked to the new doctor about it, and brought up what I had been told before, and she was surprised. She had never heard of this, and has used the medicine many times in the past with other kids with similar issues. She was comfortable to put both girls on it. I decided to try it with Eden first, since she has much less respiratory related issues, and is also the smaller of the two. If we have good luck, we may try Holland on it also.

The doctor wants us to complete a 3-day calorie count for both Holland and Eden. I thought I wanted to do this, until I started trying to do it. It is extremely difficult to quantify how much these kids eat. I tried measuring out their bowl of cereal for breakfast, then totally stressed out making sure that they ate every bite. It was horrible. I am not sure I want to know exactly how many calories that are eating. I really am doing the best I can. If I try the Benecal, and the Periactin, what more am I willing to do? They do eat, they like to eat, and they are growing, albeit very slowly. I don't want to mess with a good thing. We HAVE made progress. I wish one of these doctors would give us a little credit. Just a little acknowledgment for the extremely HARD WORK we have done to get them this far with eating. The blood, sweat, and tears that we have endured...well, maybe not blood, but definitely sweat and tears. Heck, they're on the chart for height. Doesn't that count for something???

Sorry, got off on a tangent. Back to the doctor appointment. We talked about Eden's swallowing issues. She does great most of the time, and can chew like a champ, but still chokes occasionally with thin liquid, like juice or water from a cup. We are finally going to take her in for a swallow study. Not sure what may come out of that except that they will say, yep, she chokes on thin liquids, maybe you should add thickener? But, it has been recommended more than once, and it's not so invasive, so we are going to do it and see what comes of it.

The doctor also wrote scripts for an adaptive toileting evaluation, and a motorized wheelchair eval. We recently applied for, and got, Children's Special Health Care, which is basically our state's Medicaid for children with qualifying disabilities. We pay a pretty affordable premium, and it will cover whatever equipment that Eden needs that our regular health insurance won't. We plan to take full advantage of it, and order all of the equipment that Eden needs this year. I am excited but also a bit worried about the whole power chair thing. I absolutely KNOW Eden will love it, and will learn to use it within the first two minutes. However, as with her pony walker, I am afraid that once she has it, she won't want to do anything else! My plan is that she will use it outside of the home, like at the mall, and the grocery store, and out to dinner, but not so much in the house.

Once we get the chair, we will need a way to transport it. John's car lease ends in 5 months, so I guess we will have to get a van and CSHCS will help us pay to have it adapted for a wheelchair. I can't believe I actually have to buy a minivan. It's not cool to laugh at me. I'm only doing it because I have to!

26 comments:

Anonymous said...

Wow! What a lot of news. I have just one comment on one issue -- have you talked to your doctor about Mirilax (as opposed to Benefiber)? My now 4-year-old son had many, um, issues, and adding fiber just didn't seem to do the trick. But he's been on it for 1.5 years, and it's improved things a lot.

abby said...

You are so totally cool it's not even funny. And John is cool and your girls are WAY cool.

I only have a sec 'cause I need to get to sleep, but I wanted to mention that I just found this new yogurt at Wholefoods called Mediterranee Liberte that's 260 calories for 6 ounces. 8% fat and totally un-bikini proofed. Unless you are a micropreemie. Hallie LOVES it (well, the strawberry variety, anyway) and it's super rich looking. Might be a nice complement to the Benecal.

I agree with everything your PT said about the more is sometimes less. Maybe for an older kid, but 6-20 hours a week of PT? That would totally turn me off. At that kind of level, it's so much work and so little game. I think that Eden is fabulous and that you guys are, too.

Mal said...

What a fantastic appointment! You sure got alot of information out of it. Your girls look happy, what more can we as parents want? I too wish I had that crystal ball.

Rollercoaster Parenting said...

Yep, i agree that a happy life is more important than therapy - we found we spend too much time chasing an unattainable goal ("being normal"). But hippotherapy is more fun than therapy (and soo many girls seem to have a "thing" with horses)and really does work. Our son (quad/di cp) really benefitted from it, especially for a good stretch and balance (kayaking is also good) and our daughter will definately do it too. Unlike CE (which is great, but hard work, and i would leave for later) i'd give the horses a try, especially if you can get to a "riding for the disabled" place where staff know what the're doing and it's cheap. These sort of things are fun, and you can take them up with the whole family if you like.

Kelly said...

Hi Billie! I didnt get to finish reading your whole entry but I saw where it said that you needed some BeneFiber. I use that all the time for myself and for Hattie. I buy it at the local Kroger. Im sure they will have it at your Kroger too. I just wanted to go ahhead and let you know this so I wouldnt forget to tell you. God Bless.

Karen said...

Get a minivan with a navigator and a sunroof and you'll feel better! :)

kristin said...

Can't wait to see your van! You will just as cool as the rest of us now!

Shannon said...

Sounds like a good appointment!! I know people who have had good and bad experiences with CE. It does seem like A LOT for a young child but you know Eden better than anyone else.

I'm going to talk to D's doc about benefiber because she has those same issues.

Kbreints said...

Sounds like a VERY good doctor, seems to know her stuff. I am gald that she made time to really go over everything with you.

Your girls are adorable, and happy, and so smart-- really, everything will come with time, and of course all of your hard work!

You are great parents!

Jacqui said...

do minivans come in convertibles?

Anonymous said...

Even in a minivan you'll still be one hot mama (Your a hot daddy too John!). I'm glad you found a doctor who seems so thorough and took the time to really get to know the girls. I can just picture the look on Eden's face as she's tooling around on her new wheels. Better tell Holland to watch out! Luv you guys! Liz

E said...

Who came up with the saying "It will get easier"?

Do keep us updated on the Periactin. Cole's eating has gone from bad to worse and have been considering bringing something like that up to the peed again.

Anonymous said...

Hi- I was not going to comment, but guess I couldn't hold back about my own opinion/experience after reading other people's thoughts here.

My micropreemie was a 25 weeker. She never had CP. However, my PT
(who was the national president for the neurological pt something whatever) had a very different opinion than yours in that more IS better. You are retraining the body with more. Want to learn French? Is is better to practice every day or twice a week? Muscle memory happens with practice.

Also, at one point we did 7 therapy sessions a week. 3pt, 2ot, 2 speech. I'm not saying you're doing the wrong thing, but for me, my child BLOSSOMED with bombardment. Yes it was hell. She wasn't in hell, though. It was WAY harder on me than her. The therapists became like aunties to her because were always there!

In terms of therapy, the way I looked at it is that I could have her cry now or cry later, if you know what I mean. No matter what, there was going to be some kind of "price", so I opted for the one with potential healing.

There were no guarantees anything would work out. That wasn't the point for me. It was doing everything I could while plasticity (of the brain) was still optimum.

I hope I don't come off as preachy. Its just- balance. Balance her happiness today vs. at age 13, etc. Sometimes you don't always want to live in the moment. Now that she is happy and secure, you have more space for not great moments in order to potentially gain great things.

Really sorry if come off as a prat. Its not my intention- I just feel so passionate about this! -E (a different one)

Jacqui said...

You know what E (a different one), you do come off at a prat. You are right. Your child doesn't have CP and never had CP. Good on you for getting the services for your kid. But you know what, we (my family) did all that. We did conductive ed. My kid cried and cried. We put him through things that his body wasn't physically able to do. And it made absolutely no difference (positive difference anyway - it certainly affected his spasticity in a negative way). You may feel passionate about it, but if you haven't been there, don't make the presumptions. Billie will make decisions for her gorgeous girls cause she is a fantastic mom and knows them best. Cause you know, Eden's happiness isn't going to be affected by what she physically can or can't do at 13. It is going to be affected by how prats react to her and how accepting they are of her.

Sorry Billie.

Jacolyn said...

I fought the whole minivan mom thing too, but with our triplets it was inevitable. My husband showed up one night with a RED one...like that make it cool. Anyway, I love my minivan now and my ipod plugs into it. Way cool :)

Anonymous said...

I've had to do calorie studies for my daughter (not a preemie). You don't have to make them eat every bite. You measure out what you put in front of them and note it down, then they eat, then you measure what you've got left over (including scraps thrown on the floor). Then you can work out what actually got eaten. Three days is a long time but when you've finished, you feel such a sense of accomplishment it's like you've written a novel. And you definitely feel like you've done something productive in your child's medical care. (Of course the dietician looked at my laboriously-produced notes for about 0.3 seconds and said "oh that's absolutely fine"...)

Anonymous said...

Billie,

Sorry, I read your blog, but don't post. But talk about being cool, well, I'm going to speak up here. You, Holland and Eden are so "cool" it is suspicious that you are being copied.

Your last post had a responder who claimed to have 3 micro-preemies, all under 5, one just 23 weeks, and only 3 days old, with a link to their blog. After a day or two of the baby being on ECMO (I don't even think this is possible, but I'm not a NICU specialist)and having every conceivable (and inconceivable) complication, the blog (which never had photos of actual children) disappeared, and was replaced by 4 little micropreemies, in which the mom had three year old 24 week twin girls, a 2 year old boy (who we find out today is going blind, BTW,) and a 2 week old 25 weeker (another girl) in the NICU in critical condition, but despite all this, she still has time to blog! Again, there are no photos of children, and the mom of this critically ill newborn is prattling on about reflux and weight gain and blindness of her other children. The critically ill newborn is almost an afterthought.

The post about the twin girls doctor appointment seems to be regurgitated from your posts about Holland and Eden. I know this is incredibly creepy, but I thought you should know. Click on Chic mom from your last post. The Hattie Madison and William blog is gone, but the new one with the Holland and Eden copycat twins are still there as of an hour ago.

Sorry if this is too forward. You really are way cool.

sari

Kathryn said...

Billie - I really marvel at how on top of all these complex issues you are. You are amazing at sourcing resources and equipment and funds as well as advocating to get enough and appropriate therapies for your little cuties. It really puts me to shame at times!!

Two things - grapes are excellent for, um, issues.

And, I so hear you about the minivan - never thought we would need something like that either. But I heard recently that the mini-van was the new Hummer...just kidding - but you are still cool.

Billie said...

Sari,
I've noticed. It's something I can't for the life of me understand, as hard as I try.
Thanks!

Angela said...

Hey Billie! Wow, appointments like that always leave my mind whirling. It sounds like this doctor is going to be a great resource.

We've tried every calorie booster known to man. The benecalorie is hard for me to find things to mix it in. I would love to hear what you end up doing!

As for the minivan -- you will end up loving it, I promise! lol. It was interesting coming to terms with actually owning and driving one! lol -- and yes, you will always be totally cool in my book.

As for the intense therapy...it's so hard to know what's right. I do think it's best to take breaks, especially after several weeks of intense therapy. We do lots of extra therapy after Jack gets Botox -- to try and maximize the affects and strengthen his muscles while there's less spasticity. We are going to an appointment on Monday regarding possible surgery (SDR) and I know they suggest months of intense therapy following this surgery. So I'm rambling now and probably haven't helped at all! You will know what's right and both Eden and Holland will flourish (and have already ;) )

I agree with the other commenter -- I am so sorry you've got some sort of icky troll! I really wish I knew why this happens. Don't worry so many readers catch on to these kind of things...I am sure they'll go away when they realize people are aware.

Take care!!

Anonymous said...

I don't know if this is okay for children but I have a hard time gaining weight also and I have found 2 things that have helped me. One is Boost. I have tried them all and the best one I have had is in a can and I believe can be covered by insurance. Each can has 360 calories, 14 g fat and 14 g of protein. I also put them in the freezer for about 30 minutes and it is like a choc shake. My 8 step daughter tried it once and said it tasted like choc milk. The plastic container ones do not taste as good.

Second is coconut oil. My sister is really into health stuff and it has all good fat. 1 TBSP has I think 125 calories. I add it to fruit for a smoothie and it is like a virgin pina colada. HTH.

Also, I've always wanted a minivan. They can be cool. I like the Honda Oddessy.

Rachel
www.tripletbutterflywings.blogspot.com

Mete said...

Definitely a lot to digest, but that's the joy of a multi-discipline doctor. We normally see our physiatrist and orthopedic surgeon at the same visits, and go home with our heads spinning, too.

I can't comment on any of the eating solutions, since Ethan's issues with being underweight disappeared magically at 2, and we never knew why or how. We've been using mineral oil as needed for his issues "down below" and have never tried Benefiber. But I'll be curious how it works, if you do try it.

We got a gift certificate for a hippotherapy session for Ethan, and once things settle down around here, we're going to give it a shot. I'm not sure how much he'll get out of it, due to his blindness (will it frighten him?) and his level of mental disability, but we figure it can't hurt. I've heard it's fun, if nothing else, and every kid deserves a little fun, even if it's therapy underneath.

But I definitely agree with you that there can be too much therapy. Yes, more probably wouldn't hurt. But you don't want the girls to think they need to be "fixed" at any cost, including their own comfort and sanity. (They're practically perfect already!) You need to decide where the line is crossed into too much. Unfortunately, there's no magic number of hours, and you'll have to take it day by day.

Ethan just had his second swallow study, and you know what the results were? Same as the first one: "Ethan has trouble with thin liquids, as his parents told us." The GI doc wanted another since it had been a few years, but it seemed like a big waste of time (and our insurer's money) to do it. I suppose the real reason is to make sure the kids aren't aspirating, and like you said, it's not as invasive as some other tests, so we played along.

Finally (this is all about me, isn't it?) regarding the van - we finally got a handicapped accessible minivan this year. With Miss Em on the way, we knew we could no longer squeeze the kids into my car. But we also couldn't continue to lift Ethan out of his chair and into a car seat, and vice versa, for every trip (see: no eating issues). He's just gotten too heavy and awkward, and it was becoming a safety issue.

I'm not sure what your plans are - if you will just need room to store a chair, or if you want Eden to be able to ride in it as well - but there are a lot of options out there. Our needs were best met in buying a converted minivan right from the factory. We chose not to get one with a lift, but a ramp van, which allows Ethan to be wheeled right in and locked into place in his chair. Of course, for the ramp to be at a reasonable pitch, the entire frame needs to be adjusted, exhaust system moved, blah blah blah. Something like that just wouldn't carry the same guarantee if it happened outside the factory or was done on a used vehicle.

The main problem with this kind of van is the cost. You basically have to buy a new van plus pay the nearly $20K conversion cost. We were lucky that friends and family around here threw a benefit for Ethan and raised a good chunk of the cost for us. It's terrible to think that every family that needs special transportation arrangements don't have access to these kinds of resources.

In any case, while you have a lot ahead of you, you aren't alone. Your girls are in great hands, and they'll let you know when you've made the right decisions.

Dream Mom said...

Wow, that is a lot to take in but a lot of good information as well.

I was just thinking the other day, that the early years are so difficult because you spend the vast majority of time trying to do everything so that your kids can "be all they can be." It's good but it can be exhausting for you and for them and at some point you find the right balance between doing things to help them and having some fun and a good life. You have always done an amazing job with both of them.

Dear Son has GI issues and uses both Prevacid and Miralax. The Miralax works very well but it took some time to find the right dose.

As for weight issues, Dear Son was thin as a child and I never thought he was going to gain weight. I bought slims until he was 11 years old. I didn't worry about it too much since it made him easier to get around physically and I just tried to make sure he got his five fruits and vegetables every day and ate as healthy as I could. I'd pureed fruit with the oatmeal, sneak in vegetables with his dinner and just do the best I could. He hated vegetables so I always had to work hard at that. I tried to make all of his food versus anything pre-packaged and that helped. He wore slims until he was put on PediaSure for the g tube feeds and then the dietician overcorrected and prescribed too many calories and he gained 50 pounds in a year. Just do the best you can.

As for swallowing, Dear Son used Thick-It which worked the best. The best price was at Target; some of the other places were always out of it. With Target, I ordered it at the Pharmacy and they called me when it came in.

Oh, the dreaded mini-van. I drove SUVs in lieu of the mini-van. I just made sure to measure the height of the back so that I could get his wheelchair in there. An SUB with a boxy shape or rear usually works well for getting a wheelchair in there.

Lisa Leonard said...

Sounds like a thorough review. It is so hard to make decisions about what is best..for each kiddo, for you. I am realzing its OK to say 'no' to a doctor's advice. David isn't wearing hearing aides. We tried it for a good six months and he hated it. So, oh well. We also haven't taken advantage of a couple surgeries reccommended for David. I think there is no right answer for everybody, just the right answer for YOUR FAMILY. And of course, you can always try something and change your mind. And although I am not a doctor, you are doing an amazing job with these sweet girls. Sending you hugs!

Kim said...

Just wanted to chime in and say that if you haven't found a place for the Bene- products, let me know because Stacey is a dietitian and has a bunch of phone numbers for suppliers in her office. She also told me to tell you that you might be able to get a prescription for it and get it covered by insurance.

Sadye Spirit said...

I am sure you have been told this before by now, but I had to put in my two cents too, since I have used both the Benecalorie and the Benefiber. I used to give the boys a tablespoon of the Benecalorie twice a day in their food (which comes out to a "cup" of Benecalorie each a day. Expensive but very worth it.

You can get both at Walgreens.com, and you can get them paid for (reimbursed) by Medicaid if you have the right forms (ask your Dr how to get them) and maybe even get insurance to cover it??

We get a prescription for Miralax so we do not have to pay for the Benefiber out of pocket, but the benefiber is more natural (it just requires more of the stuff to get the same results as the Miralax). I can SO tell if they skip a day and it keeps them regular without being too messy (The prune Activa yogurt is REALLY efficient too, the activa yogurt works great in any flavor but the prunes- whew!)