On our own....

[andromeda31]

Hi,

<sigh> That is how I always feel when dealing with Caitlin's issues...like the doctors don't really solve any problems and just leave us hanging. As of this day, it has now been at least 9 days since C has pooped. I called ped on monday and she said give miralax (1 cap) 3x/day for 3 days and then to call back if nothing. Well, after 2 days, still nothing. I now notice her urine is dark brownish in color. She is still drinking water, but has hardly eaten anything the past few days. I feel like all she ate today was the medicine I forced her to eat (in applesauce). I 'yahooed' the dark brown urine and saw that that is a liver malfunction sign. With her starting the new med (felbatol) I will be calling dr back tomorrow and not waiting until thursday. This just isn't right. I said to Brian, it is so annoying that when I call I feel like 'oh silly mom worrying about not pooping' I know better than to call after only 3 days. I only bother calling to ask about stuff when it becomes a severe problem. The thing that pops into my mind most was the time when her shunt was overdraining (with vague symptoms) and I took her to a local ER after being sent home from the children's hospital...and they told me "school will just have to deal with her the way she is", when I remarked that the school kept calling me asking what they should do with her (as she was lethargic, etc). It's like, well geez, that really means that I will have to deal with her the way she is too, vs the doctors actually treating the problem!!! Just had to vent a bit! It is so wrong. In the meantime, she suffers. One good thing is tomorrow is our 'lab draw day', new med requires weekly blood draws so they will have that data and data from last week to compare with. It hasn't loaded into my online account yet (takes 2 weeks when it is ordered by an out of system doctor) so I can't see what the numbers are. I would love to see what the AST and ALT are now. Brian said, you'd think they would want to feel her abdomen or take a scan of her belly. I kindof agree.

Lisa O.

[Donna Thomson]

Oh Lisa, what a rotten hassle and your poor sweet Caitlin! Nick has awful constipation due to his CP and for sure, it IS a medical emergency if anyone does not poop for nine days. I'm surprised that she is not vomiting bile constantly. The dark urine could also just be dehydration? You must have trouble getting enough water into your girl, especially in this heat. Abdominal xray and serious intervention with fleet enemas, right? Poor you, my friend. I will pray that people will pay immediate attention without you having to raise a finger OR raise your blood pressure. Good luck! Donna

[Earth Mother 2 Angels]

((((((Lisa & Caitlin))))))

I'm so sorry! Your doc's office should take 9 days without a BM seriously! What if Caitlin has an impaction?

How is Caitlin's urinary output? Is she peeing her usual amount? The urine color of dark brownish is concerning. I wouldn't hesitate to follow up ASAP. Keep giving her water, more than her usual amount, to increase her peeing and to flush out her liver. If you notice a yellowing of her skin or the whites of her eyes, I'd call the on-call doc for your doc's practice. If she vomits, develops a fever, expresses pain, becomes weak or lethargic, I think I'd head for the ER.

What we found with the seizure med induced constipation is that stool softeners (which I mentioned in another post) are really valuable in getting the rocks of stool moving. Please mention these to Caitlin's doc for advice on whether she can take them. They are fairly banal and are OTC. And it wouldn't hurt, and might help, to give Caitlin prune juice every morning.

I've learned that BM's are something to stay on top of, not allowing more than 3 days without a BM before intervention. In Jon's case, we give M.O.M. But we've also been down the road of all of the other methods I mentioned in the other post. Including Fruit-Eze (http://www.fruiteze.com)

If she's not pooping, she's not clearing out the Felbatol. She needs to pee and poop regularly to get that stuff out of her system. These meds can build up if those two evacuation methods aren't functioning at their most efficient level.

Of course, you know that I'm not a doctor, but in your situation, which I've been in before a thousand times with both of my boys, I would do the following:

1. Step up the water intake

2. Give a liquid glycerin enema (just a little vial of liquid glycerin to lubricate the anus and soften stool ~ OTC in drug store)

3. Give Colace or Docusate Sodium to soften the stool internally.

4. Wait. If no positive results, then I would give 2 tablespoons of M.O.M. (or the child dose)

I'm very glad that Caitlin is having blood work tomorrow morning. I think you should ask for the results STAT, because she is peeing brown urine. You need to know by tomorrow afternoon how Caitlin's liver is functioning, not 2 weeks from now. If I were you, I would be aggressive about that "request."

You have 4 children, Lisa, and anyone in the medical profession should realize that you don't call the doc's office unless it's something unusual or concerning. You should never be treated like a pestering mom. Ever. I want to smack anyone, who disrespects you that way! Grrr!

The docs, like you, knew the red flags associated with Felbatol, before Caitlin started it. So when those flags start waving, everyone needs to be on the same page about addressing them. Your doc should be the first one on that page, notifying you of the results and what plans there are for handling any negative results.

I know all too well (am going through it with Jon currently) how it is when the doc doesn't take command, and that means I need to step up to the plate and make demands (nicely but firmly). It is not fun, but it is needed.

No one knows Caitlin like you do. You're the trusted and most revered member of her medical team. Remember that, Lisa. Even if the others on the team don't treat you that way, you ARE the most important member of the team. Believing that helps me to take the helm and push for the things that I feel Jon needs.

Trust your gut. My #1 rule. #2 rule is: it's probably the meds.

I am thinking of you and Caitlin and sending up prayers for clear urine and BMs. And for strength and wisdom for you.

Love & Light,

Rose

[andromeda31]

Hi!

I am happy to report....she pooped! She woke up around 2am and her tummy hurt but she went back to sleep. Woke up again aroun 5:30am, tummy hurting yet, so then Brian & I got up for the day but with her not pooping, I said, that's it, I am taking her to the ER. Well first I got dressed and brush teeth etc quickly and packed my bag with computer, lab draw order form, got her meds and a book to read while I wait, etc. Finally loaded up the wheelchair in the van and I had everything ready to roll except for getting her into her car seat...went in her room to get her and she had pooped!!! :) YAY! It was just a little liquid bit so I changed her and went to tell Brian. When I went back to her again (she was just chilling watching tv)...she had pooped again but this time it was the 'rock'. It was a little bigger than a golf ball but it was just like a stone...I am sure that must have hurt. So I changed her again and got her dressed as we still had the regularly scheduled blood draw. Went and had that done, worked out well....it is a new place I had never been to before, but their lab opens at 6am so that is going to be where we will go for the weekly draw as I can get right on the highway after and bring her to school within 10 min of the procedure. The boys got a kick out of the revolving door! LOL! It was funny...when we walked in and went up to the reception...we recognized the lady! She worked at the hospital and remembered us all! Nice to see a familiar face. :) The lab ladies were nice and got it in first poke, which was a relief. It took 3 of them-one to hold C (along with me) and 1 to poke, and one to switch the vials! With her pooping again, I am going to wait and see how her urine is today now that she is unblocked she should get back to eating/drinking her typical amount. After getting that rock out she perked up a lot so that was positive. :) So glad I was able to avoid a trip to the hospital! Had originally planned to take the kids school shoe shopping after the lab draw but with the miralax working we are going to do that tomorrow and just stay home for the day and let it work!!

Lisa O.

[Donna Thomson]

Thank goodness!!! Glad to hear the good news xo

[Earth Mother 2 Angels]

((((((Lisa & Caitlin))))))

I'm doing my Dance of Joy for Poop!!! What a relief all the way around, for her, for you, for everyone.

From your description of her output, I would venture to suggest that Caitlin would benefit from a stool softener, if not every day, then every other day. These meds turn poo into concrete. And since she does like prune juice, I'd go with a glass every day. Can't hurt. I know that I keep repeating myself ... I apologize. I've just lived through so MANY years of constipation with my boys, and I want to help you and Caitlin with the things that I know work over time.

In 2000, Jon's urine looked like rusty sludge. His liver functions were horrid. Terribly worried, I called Jon's doc, expecting him to say that he'd need to be hospitalized. He said, "Give him water. Lots of it. Lots of it."

Incredulously, I asked, "Really? That's it?"

And he said, "Yep. That's it."

So, we gave Jon lots of water, and his pee gradually returned to a normal color, and his liver functions returned to normal as well.

I'm praying that Caitlin's urine is a nice color now, and that she's peeing a little more than usual. And that you will get the test results sooner rather than later.

Love & Light,

Rose

[Mangosmom]

Yay poop! I remember those days of fretting about no poop and how relieved I felt when Amanda would just blow out everything. Hope C is feeling better now and that things are back on track.

[Earth Mother 2 Angels]

((((((Carrie))))))

Thank you so much for making me laugh!



I'm reminded of a mom of one of Michael's friends/classmates. She related a story to me that one of her complaining coworkers was whining about her "miserable" life and problems. After hearing enough of this woman's self-made problems, she said to her coworker, "Okay. Here's the thing. When you've been waiting for your kid to have a bowel movement for 10 days, and you've plied him full of laxatives, and on the 11th day, those laxatives finally work, and you are up to your elbows in poop, call me, and we'll talk about your problems."

Nary a peep from that annoying coworker from there on.

That's just one of several thoughts of yesteryear that raced through my head, when I read "how relieved I felt when Amanda would just blow out everything."

The many things that other people take for granted ...

Love & Light,

Rose

[andromeda31]

Too funny!! BTW, Caitlin has a doubled-up towel underneath her right now! Just in case....and yes, that was learned the hard way today, lol! Lots of errands to run tomorrow, but they are all close to my mom's house if C should have a blow-out, I can stop there to have a better place to change her than the back of my van...

Lisa O.

[Paul from Australia]

Goodness, poor miss Caitlin.

I reckon to go more than three days without a bowel movement needs some intervention.

Hopefully there are some natural foods (prune juice or something like that) that can help precious Caitlin.

We are thrilled of course that she did have a bowel movement.

God bless and seeya at the GUTS post soon :) wink, wink :)

Paul, Alison and Grant the champ.