A Reason to Blog

I’ve been trying to come up with a reason to blog for a while now. Unfortunately, I now have a main topic area. Just about 5 months ago I was diagnosed with Ehlers-Danlos Syndrome (EDS) and just last week found out I have Multiple Sclerosis (MS). Apparently I’m hitting the genetic jackpot left and right. My mind has been overwhelmed with the news and perhaps blogging will bring some clarity, allow some place to vent every now and again, and to have a place to track how things are going.

I’m not sure where this will lead or how often I’ll get to post, but here goes nothing….

Ivy

Good-Bye Trial, Hello Rebif?

Last week I saw Dr. Specialist. Our discussion started out with, “I don’t think it’s a good idea for you to go without treatment for three months,” which is what I’d have to do to be part of the trial. I responded with, “So, I guess you have the MRI results,” which she did. It was a mixed picture.

The good news is that my upper spine is looking better, for the most part. The lesions in the cervical spine demonstrated either a “mild decrease in expansion” or were stable. Some decreased in “conspicuity” however one was more “conspicuous” than before (meaning they can see the lesion more clearly now.)

Moving further down the spine, the news got worse. Multiple lesions are stable in the thoracic spine, but there is new enhancement and extension of the lesions at T9-10.

The theory is that Copaxone isn’t working. Dr. Generalist would say that it’s too soon to know this, but I’m siding with Dr. Specialist on this one. I’ve been on the Copaxone since early February and seeing a new lesion and increased enhancement in October cannot be a good sign.

After this lovely discussion I got to do the standard “drunkard” tests. I can still walk a straight line, walk on my toes, walk on my heels, touch my finger to my nose and then her moving hands, see the correct number of fingers, etc. There was a medical student with her during the exam which was interesting. They were both fascinated at how far up I was able to get my feet when walking on my heels. We then had a nice discussion about Ehlers-Danlos and I was able to help education the med student. It almost seems as if the Ehlers-Danlos symptoms are making having MS easier than it would be otherwise. I don’t have the spasticity symptoms that can accompany MS. I may have poor balance, but my bendiness keeps me from falling over. I’m not sure there is any medical evidence behind this, so it’s just an observation on my part.

If I failed any of the drunkard tests, she didn’t mention anything. I’m pretty sure the only part of the exam that showed anything was the eye exam. I can still read the 20/20 line without glasses, but my right optic nerve is still pale and my color vision in that eye is still decreased. I’m pretty positive this is a permanent condition at this point. It’s generally not annoying, except that I’m having a hard time getting used to taking pictures with my left eye (I know, I should use the screen on the digital camera, but there’s still something about looking through the view finder that I can’t give up.)

We then talked about next steps. I need to get the brain MRI since I won’t be doing that as part of the study. That’s scheduled for next week. I don’t think they’ll find much. MS seems to be eating my spine, not my brain. Once we have those results, we’ll talk about whether or not to do a course of IV steroids again. I really hope to avoid that. We’ll also have a talk about switching off Copaxone and moving over to Rebif.

I’m less than thrilled about the idea of switching to Rebif, but when comparing the side effects of the interferon drugs (e.g., flu-like symptoms, potential liver damage, etc.) against the continued degradation of my spine, I think Rebif comes out on top. It’s only 3 times a week, so at least I will have less shots! There’s a positive part, right? Also, since I won’t get to do the study, I get to keep my Mirena (yeah!) I’m trying to look on the bright side. I have way fewer symptoms than I probably should have given the number of lesions on my spine and if starting Rebif will help fight the progression of my MS, I’m going to give it a try.

Autumn

Autumn is one of my two favorite seasons. I love the times of year when the world around me is in transition. I love the more temperate weather. I love the colors of the trees as well as the smells and tastes of fall foods. I love taking out sweaters, jeans, and jackets. I love spring, too, with it’s beautiful colors and emergence of life. I love being able to pack away those heavy clothes and dig out light weight clothing. I love that fresh produce is plentiful again. However, spring was always a bit less loved than autumn, because with spring comes tree pollen and tree pollen has always made me sick.

Unfortunately, autumn hasn’t been greeted with completely open arms anymore either. Since 2001, autumn has been a time when my optic neuritis flares up. My first attack was in October 2001. I now know that was probably my first MS relapse.

This October is kind of unique for me. The past 7 Octobers I spent expecting the optic neuritis to come along, but didn’t think much of it. After all, I had been told it wasn’t MS by a prominent doctor. It wasn’t until last year’s relapse that I even knew I had MS and that news didn’t come until closer to Thanksgiving.

I’ve been viewing this October as a test. Would my eyesight deteriorate at all this October, my first on Copaxone? When I started the shots, I always thought I’d have some indication of whether they were working once October came.

Well, we’re almost at the end of October. My eyesight never did recover after last year’s optic neuritis attack, so perhaps this isn’t a perfect test of Copaxone. I always see through my right eye as if I am looking through a fingerprint on a glass. I do think the vision is slightly worse than it has been the rest of the year. Unlike last fall, I do not have any pain behind my eye and I can still roll my eyes at my girls without any pain. I suppose that’s a good sign. I am concerned that the vision is slightly decreased, that the eye just feels different, and that it is puffy. I’m not sure why it’s slightly larger than my other eye. My chiropractor is actually the one who noticed it today when he asked how I was doing. I see Dr. Specialist tomorrow and look forward to seeing what she has to say.

Tomorrow is when I get the results of my latest MRI, which was a couple of weeks ago. I opted for just the spine MRI in case I end up participating in that drug trial I mentioned a couple of posts ago. The spine is where almost all of my lesions are anyway, so this is the part that I am very anxious to find out about. Here’s a picture of my spine from the MRI images I got to take with me on CD. I’m not quite sure what I am looking at, but in comparing this to other “normal” spine images I was able to find online, there’s definitely a lot more white on my cord than it seems there should be.

The amount of activity on my spine will be the clinical proof of how well or not well the Copaxone injections are working. If the activity level has remained the same or decreased, then I’ll have the Copaxone to thank and will be able to consider participating in the trial. If there’s activity, then we’re going to have to have a completely different drug talk and I’ll have to consider changing therapies. My fingers are crossed and I’m hoping for the best, but if you could send positive thoughts my way tomorrow afternoon, I’d greatly appreciate it! I’d ask you to send chocolate, too, but Posey already covered that part. (Thanks, Posey! The combo of dark chocolate and pear is extremely yummy!)

A Most Unique Breast Cancer 3-Day

For the past 2 years I’ve been involved with the Philadelphia Breast Cancer 3-Day as a Crew Captain.  As some of you know, I lost a friend (Posey’s best friend) to Breast Cancer in 2007.  She lost her life just before Christmas 2007 at the age of 35 after an 8 month battle against a very aggressive breast cancer. She discovered a lump while nursing her 7-month old daughter. She was a fighter and her strength was amazing and inspiring.

Just after learning about her diagnosis I decided I’d participate in the 3-Day and was a Crew Captain in 2008. I always thought I’d walk the event one day, but that year I wanted to help in a more direct way to help the thousands of people who embark on the 3-Day, 60 mile journey.  Last year I had an amazing time at the 3-Day, but had a very difficult time at night.  I was shivering and freezing and just couldn’t warm up, despite many layers of clothing and a ton of “hand-warmers” shoved into my sleeping bag.  One month later I was diagnosed with Multiple Sclerosis and it all made a whole lot more sense!  Now that I know walking likely isn’t the best option for me, I plan to keep helping in that more direct way. I love serving on the crew and have found my place in the 3-Day.

I was really excited for this year’s event.  I was assigned the same role as last year, so I was confident and knew what I was doing.  I had a larger crew assigned to me than last year which was pretty cool.  I got to meet some of them during the Crew Extravaganza in September and instantly knew I had a fantastic team.

About a week out from event, I started to look at the weather forecast.  I was monitoring it for a different reason than most people.  My concern was whether or not I’d be able to stay at camp.  After my difficulty last year, I received the okay to sleep off-site if needed.  I decided if the weather at night was going to be less than 45 degrees, I was going to commute instead of staying at camp.  The weather forecasts were looking pretty ominous.  A Nor’easter was coming our way.  It was going to be cold, wet, and windy starting Thursday, which is our Crew Day where we train our crew for the event.

Crew Day arrived and as promised by our weather forecasters, the conditions were far less than ideal.  It was wet, cold and windy.  Philly forecasters have been wrong more often than right (so it seems), so it sucks that they got it right this time.  Despite the weather, all but one of my team arrived at Crew Day and were so enthusiastic!  We had a great day and were ready for whatever came our way the next 3 days.  The plan at the time was to give up on trying to sleep at camp and we’d relocate to a local high school.  That solved my problem of sleeping outdoors, so I was thrilled with the arrangement.

Each year I have walkers stay at my house since I’m the closest to the starting point.  My mom stays overnight to be here with the girls in the morning while my husband takes on the role of chauffeur, driving me to the opening site and then the walkers there a couple of hours later.  I was heading home to get dinner together for our friends when I got a call on my cell from someone on my crew team.  She was still at Crew Day as her daughter was part of opening ceremonies and they were  practicing.  Word had just come out that Day 1 of the walk was canceled due to the weather and the fact that there was no way to set up camp.  It was just too wet and windy to even set up the event tents.  Without a dining tent, it’s impossible to have a camp.  Also, the medical team was extremely concerned about everyone’s wellbeing.  So, the plan changed to having Opening Ceremonies at Camp 5 p.m. Friday evening.  They thought things would improve enough by then.  We’d have dinner and Opening at camp, then get bused to the school to sleep, and begin with the walk on Day 2.

I immediately started calling my crew, many of which were in from out of town and staying at hotels.  It occurred to me that I was missing some cell phone numbers, but after a few hours I was able to track everyone down.  Only 2 of my team said they were heading home and the rest were hanging in there.  It turns out that not having the event was even more work for the Captains, Coaches, and Staff than having the event!  Most of my team were really disappointed, but they were hanging in there.  I have such an awesome crew!!

Well, that plan didn’t last for long.  By the next morning things had changed yet again.  My friends and I were headed over to the mall where opening ceremonies would have taken place.  We had a feeling other walkers would be there and we wanted to walk a bit and cheer them on.  Sure enough there were over a hundred people walking there.  It was really cool!  We had a nice lunch together and by then my phone started ringing.  My husband was stuck fielding calls at home and I knew it was time to get back to do another phone chain.

Day 2 had also been canceled.  The plans seemed to be constantly changing.  There were a lot of really angry walkers.  They had worked so hard to get ready for this event and this was not at all what they expected.  Some of my crew were disappointed as well.  Most of them checked out of their hotels.  It was just too expensive to stay.  A couple more people said they weren’t able to come back when the event finally happened, which I completely understood.  They are all going to try again next year though!  There’s some fear that this will turn people off to future events, but so far everyone I’ve talked to is signing up for 2010!

I was reading the message boards and sent an update out to my crew that there were a lot of walkers heading to local malls.  By 7 p.m. Friday night, one of my crew e-mailed to suggest that we go to King of Prussia on Saturday and set up a “pit stop” for the walkers.  By 9 p.m. we had a plan and many of our team were on board.  Some of us were bringing candy, others were going to offer foot massages, some were going to do face painting, others were bringing decorations, tables, chairs, etc.  We decided to set up outside of New Balance since they are one of the national sponsors for the 3-Day.

We showed up at 10 ready to go.  The folks at New Balance were so supportive!  Even more of my team showed up than I expected.  We also had someone from another crew team join us.  We set up an awesome “pit stop” with candy, posters for walkers to write messages, face painting (which was a HUGE hit!), foot massages, a photo area where we took team pictures for people with a “thank you” sign so people could use them in their thank you messages, information about breast cancer, stickers, etc.  It was fantastic!  We even raised a bit of money for the cause!

At 1 p.m. there was a large rally outside a store at the other end of the mall from where we were.  We all headed over there.  Turns out there were 600+ walkers!  The 3-Day staff brought in a truck with lunches for everyone.  My team helped distribute the lunches, get people water, etc.  I was joking that I was wondering just how many crew jobs I could do in one weekend.  I was having a blast!  After lunch we went back to our pit-stop until around 4 when things were quieting down at the mall.  I had to get home anyway as my walkers were coming back to stay the night.

The plan that had come out later on Friday seemed to stick.  The walk was now a Breast Cancer 1-Day!  The walkers would come to camp by 7:15 when the route would open.  Our team had to arrive at the Closing site by 4 a.m.  We’d do some work there and then go over to camp to resume our regularly schedule responsibilities.

We got to camp by 5, I think (I was trying not to pay attention to how early it was since I got up at 2:45 for all of this.)  Soon after that, walkers started to arrive.  It was sad to see camp without the field of pink tents, but as soon as we got there we understood exactly why they had trouble setting things up.  It was a muddy mess!

By 6:45 our team was in place to scan everyone out onto route.  I estimated that there were about 2,000 walkers and I was only off a bit.  There were about 2, 500 walkers out on Sunday!  That’s only about 500 less than we expected if the event went off as originally planned.  I was so impressed with the walkers’ determination.  After camp cleared out we helped clean up and then got on a bus to the holding site.  Usually that’s a nice park, but this year it was smart to have it inside, so we hung out at a high school for several hours.  While we waited for the walkers, we sorted all of the mail that usually gets distributed at camp.  I love doing this kind of stuff, so it was a fun way to pass a couple of hours.  Soon enough our team got called to get back to our normal role as walkers were arriving and it was time to check them back in.  We did that for a while and handed out “relo” legacy pins, too.  Then volunteers came in and took over so that we could enjoy some time with friends before closing.  I got to see Posey and our other friend and her mom.  It was great to spend even a little time with my 3-Day team.  The time for crew to hop on the bus to closing came too soon.

We arrived at the Navy Yard for the closing crew meeting.  By then I had huge blisters on my feet.  The snow boots I wore all day were not really meant for this kind of use, but at least my feet were warm and dry.  My physical state was easy to explain.  My feet hurt and my body was tired.  My right eye’s vision was a bit more off than usual.  It was warm at the holding site and I had on about 5 layers of waterproof clothing.  I really only noticed my eye when I went to take pictures.  For years I’ve used my right eye to look through the camera.  Now when I do that everything is blurry.  It’s hard switching to the left eye.

I’m having trouble formulating the right words for how I felt emotionally.  Last year by this point all of the excitement was carrying me through.  There was a different feeling in the air this time.  There was little cheering where we were doing the scanning because there wasn’t space for it.  Walkers were coming back in a different mood.  Some were excited, but others seemed like they still felt cheated out of the 60-miles.  It was hard to know what to say to them.  By this time last year, I felt like we had bonded with the walkers.  We had helped them during their final steps into camp, we had called medical teams for them, we had given them hugs as they came off of the sag buses disappointed, we were starting to know their names as we reached for their credentials.  I didn’t get those experiences this year.  I guess what I was feeling instead was pride. I was so proud of everyone for making the best of less than ideal circumstances.  I was proud of the grassroots efforts over the weekend to organize walks at malls all over the tri-state area.  I think they got even more press and attention for the cause than in typical years.  I was proud of my crew for hanging in there and for being so creative and determined to help the walkers wherever we could find them.  I’m in awe of the staff who pulled all of this off.  It was truly amazing.

I think everything really hit me during the closing ceremonies.  If you’ve ever been to one of these, you’ll know that walkers come into the ceremony first and fill in a giant circle.  Then crew enter and file-in in front of them.  Then we all take one sneaker off (or boots in the case of many crew this year) and hold it up as the breast cancer survivors walk in to honor them.  The survivors fill-in the inner circle in front of the crew.  That is when my heart warmed.  That is when I remembered why we are all here.  That is when I remembered why we need to continue to fight for a world without breast cancer.  Yes, I have MS, but it’s not going to kill me or rob me of time with my girls and my husband.  Breast cancer kills thousands and thousands of people.  An extremely aggressive form of breast cancer is why my friend wasn’t one of the women in the survivor circle last night.  We cannot stop fighting this disease.  We need to keep fighting so that the next generation of women never have to worry about breast cancer.  We all deserve a world free of breast cancer.

Candidate for MS Drug Trial

I was reading my local MS chapter’s monthly newsletter last week and a blurb about a MS drug trial caught my attention.  Dr. Specialist is one of the people involved in the research and it focuses on Copaxone.  It sounded interesting, so I called the research coordinator last week and it sounds like I’m potentially a good candidate for the study.

The study is based around the theory that MS symptoms decrease while pregnant.  No, I’m certainly not going to get pregnant again!  It’s a study that involves pairing Copaxone with either oral hormones or a placebo to see if relapses decrease.

After chatting with the point of contact I fit all of the things they are looking for, except there’s one problem.  I have a Mirena IUD.  I LOVE my Mirena!  It was inserted a little over 4 years ago and I have had very few periods since then and they’ve all been really light.  During my last OB-GYN visit we already discussed replacing it in March, which is about 6 months earlier than called for.  I don’t want to wait until the 5 year expiration date and find out that it doesn’t quite last that long.

So, here’s the problem.  The Mirena releases a hormone.  This would interfere with the study.  I certainly don’t want to get pregnant again, so I need to have some kind of birth control.  I refuse to use condoms.  They are fine when not married, but I was thrilled to get rid of them.  Going back on the pill isn’t an option either.  This leaves me investigating other alternatives.

I did a quick Google search, of course, and came upon another IUD, the ParaGard.  It’s a copper IUD and doesn’t have any hormones.  I know nothing about it beyond that, so I need to do some more research to see if that’s something I want to try.  I suppose there are other options out there to consider, too.

I was scheduled for my 6 month brain and spine MRI on Monday.  Since the study includes brain MRIs (which would save me my co-pay), I decided to only have my spine looked at this week.  That’s  where all of my activity is, so I’d like to know what’s going on there.  If there’s activity, then I may not get to stay on the Copaxone anyway and that would rule out the study.  While I’m down there I’m going to stop by to talk with Dr. Specialist to see what she thinks.  The point of contact is going to set me up with a time to talk with the OB-GYN that is part of this effort.

I think it’s interesting that they only look at the brain.  I know it’s more costly to do both brain and spine MRIs, but it seems that a study like this should look at both.  If I’d have had my spine checked earlier, I certainly would have had an MS diagnosis years earlier.  I can’t emphasize this enough — if you have MS symptoms, ensure to get both a brain and spine MRI!!  Just because the brain is clear or displays little activity doesn’t mean it’s not showing on the spine.

I’m looking forward to hearing what they all have to say.  I’m not usually one to go out on a limb to try things like this, but I love that I’d stay on Copaxone.  Most of the studies I read about recently involve getting some kind of placebo rather than a proven drug as the comparison.  Going without some kind of treatment at this point isn’t something I’m willing to consider.

Has anyone participated in any studies?  I’d love any stories or experiences you could share.

Also, if someone out there has a favorite non-hormonal birth control, I need some suggestions!

Tired

Today I’m more tired than I have been in a long time and I’m trying to figure out why.  I had a particularly busy few weeks (hence my lack of posts!), but this week was pretty calm.

Could it be that I’m finally exercising?  I just joined a gym and actually got there twice this week!  I figured my plan to lose weight by eating better wasn’t working, so it was time to try something else.  I found a place nearby that has an awesome family exercise room with a moon bounce, climbing area, etc. for the kids and bikes, treadmills, stairmasters, etc. along the outer edge for the adults.  The girls LOVE it and it gets us working out.  I even got to the pool with Big Sister one evening.  She’s recently overcome her fear of water and I love doing water aerobics.  I learned quickly that I can’t do land and water exercise on the same day.  Our first time there, I over did it.  I rode on the bike for about 35 min. and walked on the treadmill for about 15.  That afternoon we went to the pool and I did a couple of laps and some water walking.  That night my hips were in such pain!!!  Splitting things up this week worked much better and I didn’t have any pain.  But, I do think my body may be demanding more rest to make up for all of this!

How about lack of Vitamin D?  I started taking supplements a month ago.  I take them when I do my Copaxone shot each evening, but sometimes forget.  I realized that I’m more tired the following day if I forget the supplement.  But that could just be that I was tired enough to forget to take it in the first place, so that may or may not be the cause.

Maybe it’s my diet?  I’ve eaten a ton more salt this week than I usually do.  I fasted on Monday for Yom Kippur and hosted the break-the-fast meal here.  We ended up with a lot of leftovers, consisting of mostly high-sodium foods like lox, smoked salmon, whitefish salad, etc.  Since I couldn’t let such great food go to waste, I’ve been eating it (see why I needed to join the gym?!)  I know there’s been a lot written about the importance of an anti-inflammatory diet and I’m sure I’ve been doing the opposite this week.  It’s time to get back to VitaMuffins for my morning snack instead of lox and bagel!

Perhaps it’s just the season?  Every October my optic neuritis gets worse.  I love fall and cooler temperatures, but my MS symptoms increase.  I’ve not been able to find any information on the seasonal nature of MS, but this has been happening every fall since 2001!  It seems strange to me that fall would be the trigger and not summer.  I’ve been complaining about my eyes the past couple of days.  This morning I realized that my vision in my right eye is a bit foggier again.  My next brain and spine MRI are in a couple of weeks and I’m so curious to see what it shows.

Maybe I’m just doing too much and need more sleep!  While I should probably stay home and rest this weekend, we’re heading down the shore for the MS Bike 150.  My husband is volunteering and the girls and I will be there to cheer on and thank the awesome riders!

Share your thoughts on MS and Genetic Research!

Please see this posting by Lisa Emrich over at Brass and Ivory regarding MS and Genetic Research:

Earlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia.

She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that “they’ve ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations.”

She is looking for solid numbers to include in her presentation, so created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research.

The survey is simple – only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.

Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.

Thank you,

Lisa Emrich

Feeling Blue

I’ve been trying to find time to organize my thoughts and actually sit down to write this post, but I’m either not near something to write with when my thoughts come together or my thoughts escape me when I am able to capture them.  The ideal time just isn’t happening, so I’ll make do with less than ideal.  Now if only the girls would entertain themselves long enough to stop interrupting my thoughts every sentence….

My MS has been under control.  For the most part I’m still benefitting from the Solumedrol/Prednisone experience last spring.  I’ve accepted the fact that my optic neuritis in my right eye is here to stay and that the vision will never improve to 100%.  While I’m not enjoying the Copaxone shots, they have become part of my routine and are going okay.  I’d still like to replace the arm shot location, but can’t think of another body part to use since I’ve already ditched the thighs.  Every now and again I’ll use an extra stomach shot or the side of my hips, but for the most part I just suck it up and deal with the arms.

Despite my physical health doing okay, I’ve been feeling blue most of the summer.  Little Sister has been extremely challenging the past few months.  Until now, I’ve always thought of myself as the parent of a child with a developmental delay.  She walked at 26 months and has had other motor-related delays.  In all of her evaluations for services, she always placed approximately 6 – 12 months behind.  I could handle that.  However, this past spring during her evaluation her motor skills and other abilities placed her at between 30 – 36 months old.  Chronologically she was 59 months old, so she’s now showing an overall delay of approximately 50%.  The scores themselves are between a 25% and a 75% delay, depending on the ability.  This struck me pretty hard.  I’ve known that she’s not where she should be for fine motor for a long time and have been saying this to the various therapists and administrative folks who have seen her.  I know that not writing letters or most shapes by 5 isn’t typical.  However, the tests finally caught up with me.  I suppose they finally expect more at 5 than prior to this and her scores just plummeted.  It’s not that she’s regressed or anything; it’s that she hasn’t progressed.

This together with her behavior has been a real challenge.  I’ve gone from being the parent of a child with delays to the parent of a special needs child, which for me is a very big distinction.  Before I could just pretend that she was about a year younger than she really was and that eventually she’d catch up or that being off a year wouldn’t matter in the long run.  I can’t do that anymore.  Her sensory issues have dramatically escalated.  For example, last summer we were able to take her to the circus, the movies, and other similar places.  This year we can’t even go out to a restaurant without a breakdown.  She flat out does not want to leave the house unless it’s to go to school, the family beach house, or her grandparents’ houses.  She cannot tolerate any loud noises, unless she’s making them.  Rooms need to be lit like broad daylight, regardless of the time of day.  Calling her eating style “picky” would be an overstatement.  Let’s not even get into how awful it’s been trying to potty train a 5 year old!

Speaking of potty training, I do finally have a name for the stomach problem both of our girls have.  It’s called Encopresis.   It’s a condition of chronic constipation, along with reflexive withholding of the stool (refusing to go to the potty and not even realizing that they have to poop.)  This was an “ah-ha” moment this week.  It’s nice to finally have a name for this and hopefully be able to track someone down who can help us with it.  Every doctor we’ve seen, including the pediatric gastroenterologist specialists we’ve taken them both to in two different major metropolitan areas has never once mentioned this to us.  They’ve given us the basic lectures about needing to have them do potty sits (“Every day, after dinner, have them sit on the potty for X number of minutes.” – Thanks, doc, that’s helpful….)  They’ve prescribed various doses of Miralax and FiberSure.  They’ve lectured us on making sure they are drinking enough, getting enough fiber, and so on.  However, what they fail to acknowledge is that this goes beyond typical constipation.  Neither girl even notices that they need to use the bathroom!  They don’t even feel it.  They’ve conditioned their bodies to completely ignore it!  Until they tackle the psychological part of this, we’re never going to see improvement.  For now we just keep throwing out an absurd amount of underwear (we should by stock in Hanes!) and trying any way we can think of to make them use the bathroom.  A couple of weeks ago we finally put Little Sister in underwear during the day.  She’s getting the peeing part down okay.  She has accidents about 15% of the time.  But, pooping is a whole other story!  I’d like to blame this on the Ehlers-Danlos and her hypotonia.  It makes sense that since she’s stretchy that something like this could happen.  But, Big Sister doesn’t exhibit any of the signs of Ehlers-Danlos and still has this problem, so there’s got to be something else going on.  I am going on a quest to find a doctor who can tackle this once and for all.

And as if this was stressful enough, I’ve had a difficult time handling Little Sister’s outbursts.  We’ve been at the beach all week, which is our typical week before school starts routine.  It’s our second long getaway of the summer (the first being Disney and you’ve likely already read how poorly that went.)  Going down the shore is usually low stress for her.  There are days when she flat out refuses to go to the beach, so I usually stay back at the house with her.  I love the beach, but if I don’t get down there every day, that’s fine with me.  However, I cannot handle being stuck in the house 24/7.  This week it’s been difficult to get her to leave the house at all.

Here’s the event that made me just lose it.  When we’re down here we almost always cook at home.  Saturday we decided to have lunch out.  Yeah!  I was going to get to try a new restaurant and I didn’t have to cook!  We found this nice looking Italian place in town.  We got seated and I picked out something that sounded yummy.  After ordering I noticed that Little Sister seemed to need to use the potty.  I made her come to the bathroom with me and once back there she started screaming and crying!  I’m sure everyone heard us.  Getting her to sit on the potty because a huge struggle.  I pulled her pant off and held her there, not sure why I was doing that because I knew it wasn’t going to work.  After about a minute I took her off and dressed her again and ended up in tears myself.  I just couldn’t take it anymore.  Potty training has been a disaster, her behavior has gotten pretty bad, we cannot even go out as a family anymore, and I’m not handling this well.  I ended up carrying her out of the bathroom and straight out of the restaurant, asking my husband and mom-in-law to box up my lunch and coffee.  My husband followed me out and helped me carry Little Sister out to the car, where she and I just sat in the car crying.  I’m at the end of my rope with her and not sure what to do next.

We’re meeting with her occupational therapist and physical therapist a week from today.  We’ve not had the chance to sit down with them yet and I’m hoping they have more insight on things than her case manager who meets with us to do her IEP.  Although her sensory issues are not a problem at school and have therefore been a struggle to get into her IEP, they are making life at home almost impossible.  There’s got to be something we can do.  I also ordered two books on sensory integration and they arrived just after we left for the beach.  I’m ready to seek family counseling at this point.  I’m tired of crying about this and feeling helpless.  It doesn’t help that we should be seeing her go off to her first day of kindergarten this week.  I know she’s not ready and I’m 100% certain that keeping her back a year was the right decision, but it’s still hard.