Saturday, January 29, 2011

The one where I'm frustrated with a doctor

Unfortunately, I don't think we always portray a true and accurate picture of what having spina bifida is really like. Anna is on the extreme end of the spectrum. I hate to use the term lucky because I don't want to imply that others are unlucky.

Most kids with Anna's type of SB are not as mobile as she is. She loses her balance easily. She tires easily. She trips easily. But she walks (and runs) on her own. She has never had to use a walker or have leg braces. This is not the norm.

Anna's shunt had to be revised a week after her first surgery to place the shunt. She has not had any further shunt related issues. There are many kids her age with SB who have already undergone multiple shunt revision surgeries. Anna has experienced one UTI after being taken off of her antibiotics. No one wants their kid to be on a daily dose of "just in case" medication but you also don't want to run the risk of urinary tract infections (UTIs) which could lead to kidney infections. And I don't think I need to clarify that kidney infections are not a good thing.

Aside from the surprise discovery of a double hernia when she was 17 months old, Anna has been plugging along just like her sisters. Just like most kids her age. It is easy to forget that she has spina bifida. There are some days that I do make myself forgot. I stop thinking about what will happen when she's in kindergarten. First grade. Middle school. High school.

The majority of kids with Anna's type of SB have no control over their bladder or bowels. Those nerves were damaged and so they have no feelings. They can't feel that they have to go to the bathroom. On the pee front, most kids are catheterized throughout the day to ensure that their bladders are emptied. A lot of SB kids, even though cathed, will still leak pee. This is where medication comes in. We call it D-pan for short. Again, most SB parents despise the fact that their kids are on this medication but we've all been told that it is a necessary evil.

Kids who take D-pan and are cathed eventually go diaper free. Anna somehow still ends up with wet pull-ups. This post isn't supposed to be about that but I guess I'm discussing it anyway. Her urologist suspects that her muscles were contracting on their own. The odd part is that she is not supposed to stream out pee. And she sometimes does. The other day, she yelled out, "Someone do my peeps. I just peed my pants." She was wearing a generic brand of pull-ups, which didn't fit tight enough around the legs, and she peed right through everything.

This is not supposed to happen.

And every time it does, I get my hopes up.

Even though her urologist has told us that (barring any new medical procedures) she will have to be cathed and cath herself for the rest of her life.

Almost a year ago, we asked Anna's urologist how we could start her on a bowel management program. Most kids receive daily enemas so that all the poop is cleaned out of their system. It's not a foolproof system but for the most part it works. We were referred to a GI specialist.

Unfortunately, I was not able to go to those first appointments. With both of us working full time, Rich and I often times split appointments. At that time, I was in the process of trying to get Anna into the preschool with PT services. And then I had to bring Em and Allie in for testing to see if they would be accepted as peer models.

After seeing the GI doctor, Anna was placed on Pure-lax. Rich explained to me that the doctor had explained to him that being constipated can stretch out the colon and cause other issues, including urinary issues. I had questions. Why is he saying that she's constipated? Did he say that her colon was enlarged/irregular? Since when is she having urinary issues because of this alleged constipation?

To clarify, I wasn't attacking Rich in any way. We both agree that it is easier to have two parents at appointments because if one forgets something, the other usually remembers. Or one might think of a question that the other won't think of until the appointment is over. Rich felt like he understood everything while the appointment was going on.

The doctor also told Rich that they like to do this procedure where they can test the muscles of the child's bum (I'm trying to not use too many words here because I don't want hits from people searching for a.n.u.s, etc. so bear with me) to see how much control they have. Well, that's fine and dandy but ANNA HAS SPINA BIFIDA, SHE HAS NO FEELING. On his way out of that appointment, Rich had set up an appointment for this testing. We were going to go ahead with it until we received instructions in the mail a week before the procedure. We were basically going to have to get up at 4:00 in the morning, there were food and drink restrictions, etc. etc. We called and canceled because I wasn't going to put Anna through another procedure. Especially one that we did not feel was necessary.

Here is what life is like with Anna. She poops throughout the day in her pull-up. She has no feeling that she has to go. She doesn't know that she is going. There are some days that we blow through 10 pull-ups. She is almost 4 years old and in school. Kids with SB start bowel management programs around this age because really soon she and her classmates are going to know that she shouldn't just poop in her pull-up.

This is turning into a book but I have to get it all out.

Back in the spring, Dr. X, the GI specialist, placed Anna on a dosage of Pure-lax to combat her alleged constipation. (Alleged is also one of my favorite words - for reasons I can't blog about.) After six months, we reduced her dosage and weaned her off of it. I am obviously not a doctor but this is my child and I've been changing her diaper for almost 4 years. In my opinion, the Pure-lax did nothing. Yeah, her poop was a bit softer but that was it.

Now at one of those appointments in the spring, Rich told me how Dr. X explained this surgery where Anna's colon could be cleaned out via water flushed through a stoma site in her belly button. Rich knew a lot of details of the surgery and I did some research online. This is great, I thought. Let's have this done sooner rather than later.

Now before I get to the details of the actual doctor's appointment, I need to explain my mood upon entering the room. I had just spent two horrific nights with Allie hacking up a lung and crying every 15 minutes so I was just a teensy bit tired. Traffic was horrendous and it took us two hours to make our way to the waiting room. It gets better. Upon our arrival, the receptionist told us that the doctor was running "a bit behind due to all the patients arriving late."

Anna's appointment was at 9:00. We checked in around 9:20-9:25. HE DIDN'T SEE US UNTIL 10:30! And then he had the nerve to say, "I just finished seeing my first patient of the day. My 8:00 arrived at 9:30." Back it up, please. Back. It. Up. Are you telling me that we were here before your 8:00 appointment, who was an hour and a half late, but yet you made us wait to see you.

I was not in a good mood.

And I have no doubt that there was triple booking going on as well.

We all know that hindsight is 20/20 so in reading my previous comments, it may appear that I was suspicious as to what this doctor was doing. I really wasn't. I had some questions but I wasn't overly concerned. Dr. X started off the appointment by asking if we had seen any changes. Ah, no. Of course, I stupidly mentioned the fact that Anna still had wet pull-ups and we needed to discuss this with her urologist.

We briefly discussed how Anna's overall condition is exactly as it was before she went on Pure-lax. Dr. X replied with, "Well, we tried. Sometimes you have to try to see if works." So as the five minute appointment progressed, I realized a few things:
  1. He didn't know Anna from any of the other kids out in the waiting room.
  2. He thought she was constipated.
  3. He was blaming her incontinence on this "alleged" constipation.
  4. We just wasted the past six months on something that was unnecessary.
He had her lay down on the exam table and performed a fairly thorough exam of her midsection. I know he was hoping he could find some evidence of this alleged constipation but he couldn't. And you better believe that I was gloating inside.

The whole direction of the appointment caught me completely off guard and I didn't have enough time or brain power to come up with a list of questions. I did try to throw out a few questions and I felt like he deflected. I didn't get a real answer.

I have a wonderful network of MoMs (mothers of multiples) along with parents whose kids have spina bifida. We are all in the same boat with our kids and I love how easy it is to share information and support these days over the internet. So I know another mom whose daughter happened to see this same GI specialist. And you know what the real kicker is? Dr. X made the same exact statements to her during her daughter's appointment. He told us both that when kids are constipated, they tend to hold the poop in.

KIDS WITH SPINA BIFIDA AREN'T HOLDING ANYTHING IN. THEY CAN'T. THEIR NERVES ARE DAMAGED AND THEY CAN'T FEEL ANYTHING. IT IS PHYSICALLY IMPOSSIBLE FOR THEM TO HOLD ANYTHING IN.

AND IF SHE IS HOLDING IT IN, WHY IS SHE POOPING ALL DAY????

And I know the difference between constipated poop and regular poop. FYI.

Anna is supposed to have a follow up appointment with Dr. X in a few months. Rich told me that doctor's attitude with this appointment was different from the other appointments. I need to start a notebook with details of Anna's appointments along with notes, questions and answers to questions. We should have been doing this all along but we've never run into any issues like this before.

I'm giving this doctor one last chance. If he doesn't agree to start her on some type of bowel management program by the end of August, we will move on to another doctor.

As if this post isn't long enough, I need to add something else in here. As a blogger, I sometimes hesitate to post certain items because I'm afraid that my readers won't comment or find it interesting enough to even read. I've always hated how life is a popularity contest. This is our life and I'm going to stay true to it.

Thank you for reading.



Click To Vote For Us @ the Top Baby Blogs Directory! The most popular baby blogs

41 comments:

Meredith said...

Sarah that whole experience sounds so frustrating. Anna is so lucky to have you and Rich as her advocate. As a daily reader to your blog never think that you have to pick and choose what you can talk about. Like you said it is your life. The good, the bad the ugly, it is yours and this is your place to get it off your chest.I so rarely comment on blogs but I wanted to just say thanks for sharing your life with us.

Anonymous said...

trust your instinct, find a new doctor NOW. Don't wait, he sounds like he is in it for the money. God bless you for all the doctors you have to deal with.

Colleen said...
This comment has been removed by the author.
Colleen said...

Sorry, I deleted this message a second ago because I misspelled my email address. :)
(As I read what I wrote, I realize I could sound a bit bitchy, but that's not how this is intended, more like "go for it." With that disclaimer...) :)
IMO, if you want to start her on a bowel management program, just work around him. You know it needs to be done, and it doesn't have to wait on him to approve it or start it. In fact, he's probably going to be the least helpful when it comes to bowel management programs and how they actually work on a day to day basis at home. In my experience and from what I've heard from other moms going through this, the most helpful person is usually the urology nurse or the GI nurse. But I also know moms who just start a program on their own (the medical community probably frowns on that). I guess you need a script for the enemas, but you could always go through the pediatrician for that. IDK, these specialists are always so difficult, so I try to use the pediatrician for stuff as much as possible.
So it sounds like you want to start a cone enema program for now, and if that works, after awhile you could do the MACE to help her become more independent with it. So, what exactly do you need to get started? Do you need more information about what sort of enema? Instructions for how to do a cone enema program? Or do you just need a prescription? This is a great video that demonstrates (without an actual child in it) how to administer a cone enema:
http://www.youtube.com/watch?v=_hINaZkGWwg
If you want to chat, feel free to get in touch: ecolleen at hotmail dot com.

MandyE (Twin Trials and Triumphs) said...

Yes, it's a long post...with none of your beautiful pictures...but I'm still reading. :) I think we can always learn something from each other, and your post tonight was a reminder to trust your instincts when it comes to your child's medical care.

Wishing you all well on this journey, and please keep us posted. :)

Anonymous said...

i've been a reader for a while, and while i don't ever comment (i honestly don't have the time to be that involved), that doesn't mean i'm not interested in what you have to say.

i have no children but i follow a few mom blogs in hopes of gleaning insights into what it's like. i really want children some day, and i know that nothing can really prepare me for what it will be like for me when it does happen. however, that doesn't mean blogs like yours aren't a wonderful source of information.

i think you have a wonderful voice, beautiful children, and a good eye for photography, but in all honesty, i drink up the posts that show the more complicated side of parenting.

there is so much out in the mainstream that tells me "how things are supposed to be," but that doesn't mean that's actually how they are in reality. your blog does.

i'm also not a blogger, and i'm sure comments and views are important, but know you are being heard regardless of how many comments you receive.

-- c

Emily in ohio said...

I have been following your blog for ages and this is the first time I've commented. I thought this post was relevant and not at all one you need a disclaimer behind. I love it when blogs are honest and you do a wonderful job. As far as the doctor, why do you want to give him another chance? Do you have access to another specialist in this area? I work at a children's hospital, and if I were you I would call and report my concerns (with the unecessary med and the bedside manner) and seek a secnd opinion, at least the latter. If you know she needs it and you have the mommy intuition to start it now, find someone who will either help you or explain in a logical manner why you should wait. Good luck, and thanks for the stories and pics!

Michelle Vanderven said...

Hi Sarah, I too am a silent follower of your blog. I think I may have commented once or twice, but of all the blogs, yours is my favourite. I love your style of writing and your pictures, and the passion you show for your girls and husband. It truely is inspirational.

As for Anna, I agree with others, find a new doctor and trust your instincts. A Mother's instincts are always best. you and only you know what is best for your daughter.

Sarah your life with your girls is amazing, I love reading your posts, even ones like this, it really gives us (those without children with SB) a glimpse into life with a child with special needs :) I wish you all the best.

Michelle (mum of three)
Perth western Australia

mjvanderven@gmail.com

Teresa said...

I have been following your blog for quite a while (I think since just after the girls first b-day). And this is the first time I have commented. I love you're photography and your girls are adorable. I don't have children of my own yet, but I do read a few blogs.
I was first drawn to you blog because of Anna's SB. I have hydrocephalus (diagnose one month after birth) and also have a shunt. The only other surgery that I have had other than the placement, was done at 10yrs old to extend the tubing as I have grown. I as you say am one of the "lucky" ones.

I really think it's great that you share all the joys and the struggles of raising your girls. So many mom's feel like they have no place to discuss things so it is good to have an outlet. Plus you get great feedback and advice.

I also love your photography. It has been great to see your skills grow right along with the girls.

I hope things go well with getting Anna on a bowel management system soon. it is so frustrating to take time to go see a Dr. who avoids your questions and doesn't listen to you as the mom who knows their child best. I certainly wish you the best on that.

Anonymous said...

I totally agree with Sarah about finding another doctor. A doctor that knows his little patient and understands her SB issues.
Love, Anna's Grammy

Aimee said...

I definitely found it interesting to read. I have wondered in the past, when you've mentioned cathing Anna, if this had to be done constantly and if she could go to the bathroom on her own at all, so it was interesting to understand more about it. I hope you get some answers soon!

Rikki said...

I really look forward to reading your posts! You're my favourite blog! I have 5 month old twins and it's nice to see how other MoMs manage their lives. Please keep up the good work and best of luck!

JourneyWithTheCrosiers said...

I am a new reader of your blog. I have a 7 month old son, Beckett born with SB (also considered one of those "lucky ones"). Love your style of writing...just like it is. And of course those girls are precious. Thank you for sharing your story and all the info about Anna and her bowel/bladder issues. The more you can educate people and at least make them aware of what may be in the future, the better.
Meghan Crosier
http://journeywiththecrosiers.blogspot.com/

Meg :) said...

Not my first time commenting, but I've been reading for a really long time! I love your blog and it is a "must-read" for me every day. :) Your girls are just a bit older than my girls so I often take cues from you on what to do with them! Plus, one of our twins has kidney issues similar to Anna's ~ I Googled for it one day and that's when your blog popped up. It's always been nice to know that we weren't the only ones. :)

As far as the whole doctor thing goes, trust your instinct. That has been my biggest lesson learned (time and time again) during the last three and a half years of being a mom. :)

Good luck!! :)

Anonymous said...

I actually find these types of post VERY interesting, and I often reread them over a few times. Please don't turn your blog into a popularity contest. We all care about your children.

After all, Dr. Seuss did once say, "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

Whatever is facing you....share it as long as you feel comfortable posting it. This would still be my favorite blog if you wrote about poop everyday. You're honest, you're down to earth, and you're an excellent writer. You also make really cute kids.

hsw said...

Trust yourself. Our first allergist was booked for months, we got in finally and he was about to do the test we were there for and then he said he had to have us back for the test another time because of insurance authorizations having to be done first. We asked why he didn't do it 8 weeks prior and he said he had to see us first. I made the new appointment and called my insurance company to only find out he'd lied. If he'd said "I goofed" I could have handled it but lying? We found a new doctor. This guy's appointment mess is worrisome alone. I learned through our journey about my kids' health that parents are the best advocates. You're a great mom, hang in there!

Marcia (123 blog) said...

i actually like these posts the best (with a pic of course :))

I would go to a new doctor now - I wouldn't even wait.

Then again I'm hugely impatient!

Anonymous said...

Sarah....this is probably one of my favorite posts of yours. I have always wondered about Anna's SB and how it affects her on a daily basis.

I am in the same boat with the others who have said to trust your instincts and go with another doctor. Why put Anna through another potentially useless appointment with this guy? Maybe the nurse at Anna's urologist's office could recommend someone?

I've been reading your blog since you mentioned it with the MoMs board. I love hearing about the joys of parenting and what I can expect when L&M reach the same milestones...and boy do I understand the sleep issues.

Thank you for sharing your life and beautiful girls with us.
~Denice

Kari said...

Thank you for sharing your life with us. I often wondered about little Anna's condition. I don't comment often but always read and I love the pics of your beautiful girls!

Kelly said...

I have been reading your blog for about a year now and this is my first time commenting. I always wondered what Anna (as well as you and Rich) has to go through with SB. Thanks for posting this, it was very informative and helps me understand SB more. It sounds like Anna is doing well compared to other children her age, which is positive. I agree with the other readers - find a new doctor. No one knows your child better than you.

Love your blog and your girls are sooo cute!

Tracy said...

Sarah, I read and I comment often because I think Moms like knowing their post aren't falling on deaf ears. I comment even more when I read a heart felt honest post like this. I urge you to listen to your gut and intuition, trust me... if that little voice is telling you this doc just isn't right for Anna... he probably isn't. I also know you are a smart lady and know how to handle situations like this. Good luck!

Siné said...

There must be something in the air lately. I had an incredibly frustrating GI specialist appointment for my son this week. If I were to blog about it, my title might be "The one where I almost decked a resident". I hope that Anna's doctor gets his act together. Good idea about starting a notebook; I wish I had thought to do that!

The Cooper's said...

I loved reading this post. I love reading all your posts. I feel more educated about SB now. Thank you and good luck with Anna's Dr.

Anonymous said...

I am actually very interested in reading about Anna's Spina Bifida and wish you would post more about it.

I understand that you "cath" her several times a day and belive it or not I Googled a description of this and could not find a decent description of what this entails. I am honestly just curious about the procedure and all that it entails.

Like I said, I find it fasciating to read about this issue (SB). Reading about your family is fascinating to me and this is a big part of Anna's life and your life.

Please keep posting about this stuff.

Carrie

sww said...

hi sarah. i read your blog EVERYDAY!!! and i love reading about your life and seeing photos of your beautiful little girls. i just wanted to say that this post really made me understand more about anna and about spina bifida. i think it was one of the best posts you have written. you are a wonderful mother sarah, your 4 little princess's are so fortunate to have you as their mummy. kindest thoughts, shirley

Sarah said...

Oh my goodness! I couldn't believe when I came on here today and read all of your comments. Thank you all for your support and letting me know what you think. I have some other posts regarding Anna's SB that I need to post.

We are in Boston and have access to several major hospitals. We are going to contact Anna's pedi and get a referral to GI specialist with another hospital.

Cindy said...

Hi Sarah,
I haven't read all the comments yet and it took me two sittings to read the post because, well, kids were beckoning, but the point to this is I had to read how it ended. No I don't have a child with SB, but I read your blog every day because I am drawn to it. The good, the bad, the hard times, the great moments you post, reading it all, seeing someone else's life in all it's glory and mess, well, it makes me feel not so alone in this parenting thing.

As for your post, specifically, trust your instincts. If you are not comfortable with the doctor, if he is not getting to know your child in detail (medically, physically speaking), if you have ANY doubts about him, CHANGE doctors. Our guts are always right. Like I said, I have no experience with SB, but my daugther had plagiocephaly and it was so bad by the time she was 2 months old that I KNEW it was wrong and needed attention immediately. The doctors kept telling us to wait, to position her, to keep her looking the other way...on and on. We kept telling them that we were already doing that, from birth. Unfortunately, I listened to them instead of my gut. By 6 months old, I was done listening and demanded that we get the referral. We went and it really was just in time because now there was deformation happening in her forehead, eyes, ears. She got a band and it helped incredibly, her features are all perfect, my girl is really beautiful, but the back of her head on the right is still flat. Thank goodness she is a girl and her hair covers it, but when it's wet, it's visible and it bugs me to no end. What if I went sooner, would it be better?

Don't wait if your gut is screaming at you. Trust yourself. And God bless that Anna is lucky. It doesn't make others unlucky. It isn't wrong to say that. It's being thankful in a hard situation where it could be worse. And thank goodness it isn't. And there is nothing wrong with that.

Anonymous said...

Hi Sarah -
Wow, I think I'm a little famous (assuming I'm the mom with the OTHER girl who saw Dr. X)! :-)

You should make an appointment to see Dr. Sam Nurko at Children's. He's really great (and I've seen them both) and his nursing team is excellent and they do a lot of med/program tweaking on the phone if you need it.

We're really comfortable with him - he takes a lot of time to talk and even sat and talked through the issues that I had with our appt with Dr. X the last time we were in. Before you ditch Children's entirely, you should maybe give him a call.

I think I emailed you my phone number a while ago - feel free to call if you want or shoot me an email (I'll send you one now so you have my email in your inbox).

One thing to keep in mind is that it's probably good to have realistic expectations. I mean, I figured once we had this plan in place, we'd be good...right to undies and she'd be clean all day. Well, I think I've come to realize that the occasional accident (every few months perhaps) is something that might be in her future and we're going to have to come up with solid plans for dealing with that (clothes at school and good self-confidence training!).

Good luck - it's so frustrating, but we're getting there and have a really solid plan (which is important I think). We're back to having a fair amount of success with the program we're on.

Lilly's mom Amy

Jaime said...

I have been following your blog for a couple months now (i'm a fellow bumpie from the multiples board) and I must say i absolutely adore your girls. I have only commented once or twice, but I check your blog at least once a day to see if you have updated.

I, too, have wondered how SB affects Anna and your family on a daily basis so this individual post truely did interest me.

I also agree that you should change drs. I'm sure you can find someone who actually attempts to care about Anna's condition. That dr didn't even make an effort to care it seems, and that's not someone I'd want treating my child and I'm sure you feel the same. What a peach he seems to be!

I hope you continue blogging for a VERY VERY long time. You and your girls keep me so entertained :)

Joni said...

Sarah, wow! That sounds soo incredibly frustrating. While I do not have my own children yet, I am have been diagnosed with 11 chornic health conditions myself, and fight this regularly as it pertains to doctors. It is a very sad reality to those of us who have to deal with this regularly. My first gut instinct was to tell you to, make a second apt with another doctor now. Then actually GO to both and see which one you prefer. That way if this doctor is still not on par for the course, you have already established yourself with another doctor and don't have to wait months again for yet another apt. with yet another new doctor. This is soo frustrating, and sadly enough a reality that we are faced with daily. IF this current doctor changes his attitude well then you can decide which doc you like more and continue your care there. I've done this multiple times in the past for myself when it comes to specialisits. BTW, this is YOUR blog. Therefore, you can blog about whatever you want, whenever you want. If others don't like it they can go some where else and read ;) This is your place to vent, and share your story, and life isn't always roses! So please feel free to speak of your childs health condition as much as you wish because it is YOUR reality. My reality is diabetes, kidney issues, lung issues, fibromyalgia, and so much more. So blog as you may...it is your time to talk and vent, and us regular readers love it ;) I wish I had more words of wisdom, but I am suddenly fresh out. However, I am sure that whatever you decide to do is the RIGHT decision for you and your little one ;) God Bless you sweetie!

Jan said...

I will always be here to read what you write about your beautiful girls!

Amanda said...

I've been following - and have no idea if I've commented or not. But your pictures are wonderful - and your kids absolutely beautiful!

It's very frustrating when you don't have a doctor that listens to you, or that you can trust. At our SB clinic we see whatever urologist that is on call that day and it's frustrating when it seems like they don't even read the chart before coming into the room.
I wouldn't give your guy another chance, but start looking at a second opinion right now.

On a completely unrelated note - and really off topic. I am a L&D nurse and recently cared for a woman who's child was born still as well. I think your phrase is very elequent and has so much more meaning than simple still birth. Just wanted to say that. I will be using that phrase for now on.

erinlaughs said...

I love these kinds of posts! I feel like it makes me much more sympathetic and understanding to other kids. It gives a much more complete picture.

We had a similar issue at the eye doctor. There was snow and it caused everyone (but us! we were on time!) to be late. I think that time he was running about an hour late. So annoying! At least they had stickers to keep my daughter entertained.

Mommy, Esq. said...

This post hit close to home - when we were dealing with Penny's issues I felt the same way. One thing I made the doctors do was (1) talk to me on the phone AFTER appointments so we could rehash and I could ask questions more coherently and (2) required all specialists (ENT, pulminologist, GI) talk to EACH OTHER. I asked to be copied on reports to each other and to our pediatrician. I should also not that BCBS did call asking me if I wanted a medical advocate so maybe you might want to look into that. Finally, I agree with you on constipation! I got a lot of flack about this with Penny when I finally just stopped trying to "deconstipate her" (and later Josephine). Every kid is different and if they are going who really cares...

Good luck with everything, and I'm so glad you felt comfortable enough to post (I've always wondered how you view things when you drop "cath"ing into so many posts so nochalantly.

Michelle said...

We switched GI docs recently because I felt like my little one was being treated like "one of the masses" and I was being treated like an idiot. It was the best decision ever. Little one is getting great care (the difference is absurd, I had no idea how bad the entire office was until we found a new one!) and I am happy too. Good luck in advocating for your daughter! Sometimes it's a full time job in itself!

Carol said...

I read every word you write. I don't even have little kids, but I stumbled across your blog and have been hooked ever since. You do a great job of writing and your photography is stellar.

Colon Cleansers said...
This comment has been removed by a blog administrator.
Sarah said...

What I love about spam comments is that I can delete you and report you. Don't mess with me especially on posts like this.

Leigh and Andy said...

Hi Sarah-
I've been following for awhile, but this is my first time commenting. My two year old son also has SB. We just started a bowel program and it, so far, has worked SO SO Great! I am so glad that we took this step. We actually talked with our urologist about it and he wrote the script. My email is leighegibbs@sbcglobal.net I hate to get too personal in a comment, but if you want any info on what we do, I'd love to share it. :) Oh, and he hasn't had any "poo accidents" since we've started this.

Sarah said...

Leigh - Thank you so much for your comment. I'm glad to hear that you've had success! It gives us hope.

TanyaMom23 said...

Hi Sarah,
I am just catching up your recent posts and I want to say that I think you're and amazing mom and much more patient than most... I think most people would agree that Dr. X really hasn't done anything to deserve a second chance. Also, regarding wondering if people would enjoy reading these types of posts. I work in Labor and Delivery at a big Boston Hospital, so I love anything medical. But also I always want to ask questions about Anna and her SB, but I never know if that is appropriate. Thanks for sharing your "real life" story. Anna is very lucky to have made the strides she has in her short 3.5 years and she's just as lucky to have such a wonderful mom.