Wednesday, March 18, 2015

Tackling Constipation--without Miralax (PEG 3350)

Elena has been taking Miralax (or generic PEG 3350) since she was eight months old.

I never loved the idea; but even as a baby, she was severely constipated (only on breast milk)--and when your underweight baby is constantly vomiting due to bowel impaction, you do whatever it takes. I tried everything--prune juice, fruit juice, water, corn syrup, etc. as an infant.  Once Elena was impacted, our doctor recommended the "nuclear option" and had to get enemas.  I was scared to do this to a baby--I was afraid I would hurt her, not to mention I didn't think it was great for her bowels. The only thing that worked was Miralax.  And she's been on it ever since.

Until now.  Nothing drastic really happened; sure, I've heard it all from overemotional and often underinformed parents of the evils of Miralax.  As much as I preferred a natural alternative, I hadn't found one and Elena's life was better because of this laxative; period. I wrote about our last hospital visit due to impaction (because of an early fever) and decided I needed to try again--not to necessarily relieve Elena of her Miralax dependence, but to augment it with something natural if I could find it.

Blog comments were very helpful; my favorite was from a grown woman with CP who painstakingly found how much fiber she needed to stool every day--it's A LOT.  I tried to get Elena to have 20 grams of fiber per day (I calculated she needed 15g, and tried to go for just a little more) and it did help--and she dropped weight, b/c fiber rich foods replaced caloric foods and Elena's intake is pretty steady (I just can't add more food, she will only eat a certain amount).

The good news is Elena is knowledgeable about her bowel habits and we talk about them every day (even if she doesn't want to).  She knows she could end up hospitalized, and takes this seriously. She is willing to try new things, and is starting to be more responsible about food choices (even though she eats a wide variety of healthy foods).

Then the NYT article came out, which reinvigorated my hunt for Miralax alternatives. There happened to be a long break from school, so I decided to give our natural foods store a try (recommended from one of our PTs). I figured help would be in the form of a supplements and fiber options. (Please note; I will happily return to Miralax if it keeps Elena out of the hospital).

The first two weeks Elena received high dose omega-3 fatty acids (in a chewable gummy form), high dose probiotics (in a chewable fruity flavor), clear fiber powder (acacia fiber), and 1/2 tsp of magnesium citrate powder mixed in juice every morning, while trying to eat fiber rich foods.  She doesn't have a sweet tooth, and hated the sweet/tart gummies/chewables, and took them under severe protest (her sister ate them right up). The clear fiber powder was ok if lightly sprinkled on eggs, peanut butter sandwiches, pasta or other like foods, but did not dissolve in liquids and tasted pasty. She took the MgCitrate without issue. Overall she had a bowel movement once every 2 days, and was fine for about 9 days but then had lots of cramping and abdominal pain, requiring adult dosage of laxative suppositories (and hours of waiting). Still, over a week I considered a success.  I think the biggest issue was once school was back in session, I couldn't monitor her fiber and water intake midday.

I went back to the natural foods store and tried something different--Elena hated the chewables so badly  (almost vomiting several times) I started to cut them up small and she would swallow them whole--so I found a very tiny probiotic pill (pearls) that she could swallow.  She is very happy with this.  I also bought liquid fish oil (lemon flavor) and while she doesn't love it, she will take this off a spoon happily instead of eating an omega-3 gummy. I also bought some chewable sorbitol tablets (from papaya; sorbitol is also found in prunes, which she hates but will occasionally eat) in a mint flavor and she will take that without protest. She still takes the MgCitrate.  She promises me she drinks and refills her water bottle every day at school, and we continue to fill our fridge with veggies and other fiber rich foods.  Our biggest issue right now is she is not as active as I would like, given knee pain and overall fatigue.

Today we are just over the 2 week mark from discontinuing Miralax (abrupt total change, no taper). She has a bowel movement at least once every two days, which is not enough in my opinion but she tells me she does not have abdominal discomfort right now. I have spent over $200 on supplements (a large bottle of PEG 3350 costs what, $8?); I am not happy about this, but maybe once I find a cocktail I'm comfortable with, I can buy in bulk?

What have I seen in terms of changes in Elena?  I feel like I'm reaching here, but I believe that her hands are in better shape (she incessantly bites off the skin on her fingertips); OCD behavior has been (unconfirmed?) linked to long-term usage of PEG 3350.  That may or may not be related to this dietary change. She still does it, but not as badly. She's been very argumentative and whiny (it was really bad a week ago) (I think this is due to abdominal discomfort) but she has also been patient enough to figure out her night braces, and now I can sleep well since I don't have to help her at night.

So, I ask you, Doodlers:  if you or your child takes PEG 3350, how do you feel about it?  Have you tried an alternative that worked for you?  I am specifically interested in dietary supplements--we are tackling fiber here relatively well (although I am open to food recommendations).

Tuesday, February 24, 2015

Alice in Wonderland: The Review!

Elena's elementary school drama club is open to all 4th and 5th graders. Everyone who joins gets a part. This year, they put on Broadway Junior's Alice in Wonderland Musical.  Elena auditioned for, and won, the main role of Alice.

To say that was a shock was an understatement. Never for one second did I think that she won that role as some feel-good, pat-on-the-back display of inclusion for the school; she landed that part b/c the director(s) felt she would be a great fit. Elena's disability is obvious, but to the student body she's just another kid. (Sometimes I have to pinch myself to remember that's real.  It's a huge testament to the school, the educators, and the students, and in many ways hard to believe.) But, let's be real here--having a disabled main character does take a different sort of effort in creating the performance, and it was the first time (as far as I know) that the Drama club has tried something like this. (Good for them!)

Rehearsals were twice a week (since September); that's a time commitment for anyone…but for Elena, that's really taxing. And by taxing, I guess I mean our whole family became devoted to having Elena make it to the final curtain. For her, it was physically grueling, and she had a lot of lines to remember--I thought we'd all be spending every minute going through them. We didn't, actually; she learned most of the lines on her own. She and I would spend time with her in her stander, going over problem areas or working on voice projection and emotional responses in voice and facial expression. I can't tell you how many times Vivian saw or heard or had to sit for therapy, rehearsal, practice--but she enjoyed it too (she can't wait until she's old enough to join the Drama Club).  Most of our time was spent recovering from the physical toll of rehearsal; lots of stretching, massage, therapy, ice packs, bracing, epsom baths, forced rest, towing Vivian to doctor's visits, appointments. Did Elena enjoy rehearsal?  Absolutely. But it was so very draining for her. I kept getting emails from the director that she was doing well, so I didn't check in on her.  

As the performance week approached, illness swept the school.  Lots of kids got sick--lucky for us, Elena stayed well. I helped work on sets--and once they were finished, I brought them in to test out in dress rehearsal, one week before curtain.

The cast looked AWESOME. The kids were so excited! I had the opportunity to watch (I didn't think to do this earlier, b/c I figured the director didn't want parents distracting the kids) and noticed that Elena stood/crouched almost the entire time I was there. I felt like she was going to fall off the front of the stage. Her face deadpan; her knuckles white. I just smiled, and once rehearsal was over, gave her a hug and asked if she was feeling alright. 

"You didn't seem to be looking at your castmates…you feeling okay?"
"I guess. I'm tired."
"You weren't using your hands to wave or anything. Why?"
"Because I knew if I took my hands off my crutches I would fall."

Uh oh.  

I took her home, wondering how I would ask the director to make changes the week of their first performance so Elena could find a resting break during the show, and feeling rotten that I hadn't observed earlier to help problem-solve. How long had it been like this?

Turns out she was basically standing for the entire show--around 45 minutes. Yikes. The next practice I brought it up--turns out, making changes wasn't that big of a deal--the director was already making lots anyway, the kids were fantastically embracing the dynamic environment--and E found some places to sit and rest (not many) and her stability looked much, much better than the previous time I saw her. Maybe she was having a rough day? Who knows. 

The day of the first show--for preschoolers (some schools were bussed in as a field trip) I wrapped Elena's crutches to make them white.  We had tried many pairs of mary janes, but they wouldn't work with her braces, so I found a pair of black athletic shoes for her to wear. I curled her hair, which she loved. And she wore her costume, on loan from a neighbor. Adorable.

**I hope to add some audio clips to this post.  

White Rabbit is LATE!
Drink Me

Ocean of Tears

The preschoolers were dead silent, in awe of the show. They loved it! After that first show, the cast took a bow--they hadn't practiced it before, so it was surprising for everyone. I'm not going to lie…when E took her solo bow, I couldn't hold the camera straight (these pictures are a mix from all performances). Good thing I brought tissues!

Alice is as big as a house!

 Elena had one costume change, where she had to enter the large house (as small Alice) and eat a cookie and grow as big as a house--shown above here.  Thanks to support staff for the quick change!

Girls of the Golden Afternoon
Girls of the Golden Afternoon

The show was packed full of songs--ensemble numbers as well as solos.  They were fantastic! The stage is also relatively shallow-so huge props to the director and cast for keeping things safe!

Unbirthday Party!

The second show was for the student body.  The cast was extremely nervous--performing in front of their peers for the first time.  It was also the first time the lights were used, which was unexpected for them.  They put on a great show!

Alice and the Tweedles

Wise Caterpillar advice

Cheshire Cats showing off

Painting the Roses Red

The third and final performance was designed for parents, family and friends.  We had lots of people come out to support us!  Thank you so much! The final show was at 630 pm--very late for Elena (she goes to sleep around 745pm). I wasn't sure how to keep her energy up, so the day of the performance I let her sleep late and brought her to school when she was ready. I figured between soda and excitement, she'd be ready--and she was.  They all were!  The energy of the last show was completely different--more confident, excited, more FUN.  It was wonderful!

Queen of Hearts, striking fear in her subjects!

Bowing before the Queen of Hearts

There was some serious movement while the Queen was around--lots of bodies moving onstage, a crazy game of Simon Says--Elena kept up the best she could. Which was not bad, really.

Alice strikes back at the Queen!

Flowers giving testimony against Alice

Alice defends herself at trial

Once Alice woke up from her dream, the ensemble led the crowd in a reprise of Zip-A-Dee-Doo-Dah and the crowd clapped and sang along.  For me--it was electrifying.  I think my face hurt from smiling so much!

Take a Bow


What a show!  What an experience!  It was emotionally and physically taxing, with physical setbacks and a lot of sacrifice for the rest of the family--

And worth every minute.

THANK YOU SPE DRAMA CLUB! BRAVO! The show was wonderful--and couldn't have been done without amazing teachers, students, parent volunteers, and help from friends and neighbors along the way.  And all the help from E's therapy team. Thank you from the bottom of my heart!

Monday, February 23, 2015

Surgery Postponement

Oh my goodness I don't even know where to start.

I've postponed any surgeries for Elena.  It's good, and bad, in many ways.  I'll try to explain.

Over 8 months ago we started noticing Elena's crouch getting worse. I brought it up to her regular doctor, mentioning that her movements had become labored and her endurance/ability to carry had declined. He dismissed it as nothing. I was not pleased, but I didn't know what else to do. Our main PT suggested finding another doctor for a second opinion. I dragged my feet on this for lots of reasons.

At the beginning of fourth grade, her gait looked terrible--to me, anyway. Aside from occasional complaints of knee pain, Elena was happy. Fourth grade was (is?) challenging for her, but not as bad as last year. She is keeping up well academically and socially; physically she has different issues, but overall school has been very positive. Elena has been healthy and overall happy and rests well.

Then she started complaining of knee pain more often. Crying, sobbing, several times a week…so I started looking for other doctors. We went several times to her main ortho, hearing every time that "it's not that bad"and getting dismissed. That's when I started going to other doctors, driving myself crazy with ways to try to help change Elena's situation.

Then Elena decided to join the Drama club. Everyone supported this decision. She landed the lead in the school musical, and everyone made her strength/comfort a main focus to try to get through the final performance. She got a neoprene leg brace to attempt to deal with her ongoing tendinitis (just above her left knee-her main weight bearing leg), we cut her PT time in half, Elena started seeing a massage therapist, she got lots of rest and stretching. And we kept going to doctors.

Second Opinion (SO) basically said that it was time to do something. His recommendation was knee capsule release and slight lengthening of her medial hamstrings as well as ilipsoas; she would be in full leg casts for ~6 weeks, weight bearing immediately, then out of casts/rehab for another 6 weeks. I was upset my SO didn't agree at all with our main ortho. So I went to another doctor, recommended by SO.

A Gathering of Many PTs urged me to make sure doctors didn't touch her hips; her hip flexors may seem to have contractures, but they don't--she has good range, and they didn't think iliopsoas lengthening would help her get out of her crouch. They argued for a Therapy Exercise program specifically targeted to get her out of her crouch. I was (am) doubtful this would succeed-but agree that it would't hurt.

Third Opinion (TO) disagreed completely with hamstrings, recommended distal femoral osteotomies instead. I was so totally confused and upset--how can none of these doctors agree? TO's argument for osteotomies made sense to me, at least at the time.

I finally got Elena's gait lab report (that I couldn't read, as it wasn't formatted in a way I requested) and sent it to SO and TO, as well as a new set of E's hip x-rays. TO got back to me first, and conceded that her gait lab study indicated that she could be helped by hamstring lengthening OR the distal femoral osteotomies. I mentioned that I know when they do the osteotomies, frequently they bring down the kneecaps (patellar tendon advancement) at the same time and asked if we should consider this, as E has patella alta and tendinitis from the pulling on the kneecap. Doc said we'd have to do an x-ray to look at her knees; I said do it RIGHT NOW. So she did. Both of Elena's kneecaps are fractured from stress of crouch gait. (Docs suggest stress, not impact, due to nearly identical break--the right crouches worse than left, which is true and inferred by degree of fracture.)

Left Knee. Fracture is close to cap
Right Knee. Fracture is separate from cap

I was crushed-my child is breaking her bones just trying to get around as best she can. I went ahead and scheduled the osteotomies and patellar tendon shortening (they don't do advancement on growing kids) so I could have her ready for summer break.

Then I got a call from SO, who warned me "absolutely do NOT do the osteotomies" and we talked for an hour why not. He said it wouldn't fix her crouch gait. Period. He said after examining her films and gait report (which his office returned my data disc, and printed out a report for me with his notes and recommendations) that he stands by his suggestion of lengthening surgery. He said the broken kneecaps are upsetting. It doesn't always happen but he has seen it before. He answered my question well about "when do you surgically intervene in a growing child?"--"When there is pain, and/or when there is a decline in function". We definitely have both.

I got in touch with some families I know whose children had broken legs; I found that rehab (in typically developing children) is closer to a year than 6 months, as I had originally thought.


I decided to postpone (indefinitely?) the osteotomy surgery. I immediately felt better about it. I was upset with myself--if it felt that wrong, why did I schedule it? Was it desperation? I never want to make a decision out of desperation. My first reason was she wouldn't be better by summertime; that was the main reason to do it at the end of February--after the play, ready for summer. Since that wasn't going to happen, the procedure was cancelled. I feel like others were hinting at me against the osteotomies--therapists, blog readers--but I wasn't listening. I wasn't open-minded enough? I needed more than a hint? I don't know. It's a lesson I'm glad I have the chance to learn. I feel like I am patient, but maybe not enough? I don't know.

I decided to give the PTs a chance. It can't hurt, and if decide to go with surgery it's better if she's stronger before any operation. I asked Theresa how long it would take to see results, assuming that Elena could do her exercise regimen; she said three months. This would end our exercise regimen too close to summer break to opt for surgical intervention afterwards, so I told Theresa I'd give her six months (until the end of summer).  If Elena could do it. If her pain is too much, we opt for surgery (most likely with the hamstring lengthening with SO).

There is also a clinical trial we might be involved in (more on that later) and some possible changes in bracing. Onward!

Wednesday, February 11, 2015


Just a teaser until the play is over.  This is from their first performance!


I can't wait to write about it.  She is a wonderful Alice!

Friday, January 16, 2015

Surgery Decision, Mostly Made

After three different doctor visits, a lot of time thinking and gathering information, I think a decision has been made (pending a few phone calls).

We are going with a different orthopaedic doctor.  She recommends  a distal femoral osteotomy, in both legs.  If this is the only procedure, Elena won't have to wear casts--just braces that we can remove if needed (bathing, etc.).  She may have something done with her patellar tendons; I'm not sure yet.  If she does, she'll need to be in casts for 6-8 weeks.  

That's the short version, anyway.  Her hips are fine (shallow, but fine).  The distal (femur end near the knee instead of the hip) osteotomy makes sense to me, given her femoral ante version and how badly her knees are angled toward her center line.  If this helps her posture/gait, which is the intent and which the doctor believes it will, less pressure should be on her knees/ankles/big toes, which should help alleviate (or at minimum, not worsen) her issues related to her crouch.  

The majority of stories I read related to surgery regret seem to focus on procedures involving the hips.  Has anyone had a distal femoral osteotomy (not involving hips) out there?  What was your experience? Are you glad you did it? How was recovery?

The procedure, as far as I understand it, is relatively simple and the cut site gets some sort of "cap" on the bone, which is supposed to make the overall process (including recovery) quick.  This doctor believes that changing the bony structure is a better way to help crouch gait than lengthening tendons.  I'm not sure I believe this, but regardless--I do think that in Elena's case, the osteotomies should yield good results.

I look forward to any and all comments.  

Monday, January 5, 2015

Happy New Year! Goals 2015

We talked about our goals as a family, and we have a few.  We try to think of these goals by season, as to work on them throughout the year.

Goals for E (* denotes a goal made on her own):
1.  Swim forward and back longways across the warm water pool.*  My guess is the pool is about 15m across.  E can swim across the short-side, but she isn't always successful. Sometimes she looks fantastic, other times she sinks. I think she just needs more time to figure it out.

2.  Try to get out of her crouch.  I know this is a lifelong issue.  We'll try something new this year.

3.  Use the walk path around the neighborhood.  There is a nice path around the houses here, but it's gravel and hilly.  We've never taken a walk on it.  I'd like to see how far we can go.

4.  Bike the river trail without help.  Trike or upright bike, I want her to be able to use the brake appropriately and pedal up the small hills.

5.  Start voice lessons.  E has asked for voice and piano a while back; she enjoys piano, but as we've learned from the psychologist, it accentuates almost everything that is difficult for her.  

6.  Help me cook more often.  E is enjoying being my helper, and can now use a sharp knife (thanks after-school class!).  It also opens up a lot of great opportunities to talk about real life math.

7.  Try yoga again.

Goals for Vivian:
1.  Go down a water slide.*  Vivian is almost an independent swimmer now.  If she passes the swim test, she can slide this summer.  

2.  Have after school activities.  Viv typically gets dragged around to Elena's appointments, but doesn't have her own. She joined a girl scout troop (once a month), and I enrolled her in a tap dancing class.  She also wants to take ballet, but we'll have to fit that in later in the year.

Goals for me:
1.  Finish the 40 for 40.  (Forty preferably-athletic events in the calendar year between my 39th and 40th birthday).  I'm halfway there.

2.  Try every class at the gym.

3.  Declutter.  Specifically the storage room and the garage.  

4.  Drink more water. I get headaches, mostly from dehydration.  

5.  Sleep better.  I am a horribly light sleeper and hardly ever rest well.  This got infinitely worse after I became a parent, accentuated by the fact that I had a child that could not get in/out of her bed on her own and every obstacle was a serious fall hazard.  Elena can do almost everything on her own (wearing her leg brace at night makes it very very slow) but I am constantly aware of every sound.  

6.  Try the garden again.  I constructed a compost bin last summer, and we've been adding to it since then.  I plan on trying raised beds of sorts, so E can garden without squatting so much.  We'll see.  

Goals for all of us:
1.  Be loud cheerleaders when Jason runs his 10-miler!

2.  Look at our world a different way.  E has been interested in astronomy (before they started studying it in school), and we had a special meeting with a hobby astronomer last year.  We'll have another stargazing party (we take out a mattress on the driveway and kids come over) or two.  And Vivian is really into amoebas (I think she liked the word) so we'll take water samples from the lake and see the small stuff.  I'm looking for a secondhand microscope, as well as making one of my own (my first attempt wasn't successful).  

3.  Everyone walk to the beach on their own.  Grown-ups will carry chairs, but not kids.

4.  Welcome our new baby cousin!  I am very excited about the impending arrival of my nephew!  Vivian has never seen a newborn.

5.  Send a card with family updates.  We used to send one out at Christmas, but we're two years behind.  

6.  Craft more at home.  I'm not into crafting unless it has a specific use (knitting blankets, decorating cookies, making Halloween costumes) but E and Viv could use the fine-motor practice.

7.  Find a game the entire family enjoys playing.  Right now Viv doesn't like to play our current favorites.