August 28, 2009

Check up with Dr. Levitt is officially scheduled

I havent posted any issues with Dylan lately, because he has done rather well. He hasnt been sick (thank God) and hes just having the regular every day problems with loose bowel movements. I hope everyone found the other information that I posted about Hirschsprungs and the bowel management program helpful. I always feel the need to share the information I learn just because I know if it helps us in some way then someone else could benefit from it too!

OK, so at our last clinic visit with Dr. Levitt, he wanted us to try the pectin, also immodium, and begin with potty training before he sees us again in October. I just emailed the nurse today to go ahead and schedule the appointment and this will be October 9th. We havent yet started potty training and I am a little aprehensive about it....Dylan doesnt really show any interest, and this child has been afraid of everything since going through all the medical issues and hospitalizations last year. He seems to get nervous when he sees certain things, kind of like he has a phobia of anything that reminds him of being in the hospital or even having irrigations or rectal exams done. The poor little guy doesnt like dr offices and screams at well check ups with his pediatrician fromt he time we walk through the door until we leave, he also doesnt even like McDonalds, Im guessing the glass doors remind him of going into a dr office so he puts up a fight when going in. I guess this could be a little bit of post tramatic stress.

So, we will be heading back to Cincinnati to see Dr. Levitt in exactly 6 weeks, so this will give me a little bit of time to introduce the potty training at a more serious attempt before we go back...wish us luck!


  1. I wonder when we will get our appt. If it were around the time Dylan has his then we could meet. Of coarse it won't work out that way, but it is fun to wish.

  2. Okay, now I am following your blog and I sort of 'borrowed' your HD Awareness ribbon.

    Is that okay with you?

    Thanks for all the info. I am reading it in between laundry, baths, feeding a grumpy baby, being lost in my thoughts.

    I know you must have felt the same way....

  3. No problem at all that you borrowed the ribbon, I actually got it from the Facebook cause lol. And yes that would be great to have an appt at the same time and get to meet--crossing fingers!!!! Your more than welcome to copy, paste any information and post it anywhere, this is what I do...I search and when I find something interesting that I think someone can use I post it!!!!

  4. Hi Catrina, My son, Alex, is 4½ years old and also has Hirschsprungs. I just discovered your blog this morning and have been reading and reading and reading. You have shared so much good information! We were just at Cincinnati Children's yesterday and we are to start using laxatives and pectin starting today. We got through the first doses this morning and it was more than a little challenging! We added the pectin to lemonade and he drank it right up. Whew. I'm not sure what to expect in the next day or two so we'll see how it goes. Thank you for sharing your story, I will be following your blog for sure!

  5. Wendy, does your son have issue with loose bowel movements as well then? I know Dr. Levitt usually recommends the pectin for that....I am dreading Dylans appt next month because Dr. L wanted us to try potty training before we returned but Dylan just will not have anything to do with a potty no matter what i try! Have you started potty training or is your son potty trained? Do you have any advice to make it a bit easier?

    Thanks for reading and following my blog, I do what I can to help anyone with the same issues!

  6. Hi Catrina, Alex isn't potty trained at all. Well, he pees in the potty just fine but will not do the other. He has very loose stools which just kind of seep out all day. He is supposed to go to Kindergarten in less than a year and I'm getting worried.....what will I do if he still isn't trained or doesn't at least have some control?

    I actually have a question for you about the pectin. They said I could get it over the counter and they said it would be in liquid form but the pharmacists had no idea what I was talking about. I ended up buying the pectin that is used for canning. It has the consistency of thick gel. That's what we've been using the last few days ~ dissolved in a few ounces of lemonade. Am I using the right pectin? We go back to Children's next Friday for a follow-up so I can ask them then but I thought you might know.

    It's so nice to have someone in the same boat as we are! My friends & relatives just don't understand the challenges Alex faces. Their solution is to just sit him on the potty and make him go. I think my Mom got a big eye opener this summer when we spent two weeks at her house in Wisconsin. She was determined to get him trained and she realized how frustrating it is for all of us.

  7. Thanks for your reply Wendy--yes it does sounds frustrating for you, and Dylan being 3 1/2 I think we will be in the same exact boat!

    You do have the right pectin, that is what it is--its used for canning things like jelly and jams to preserve them and make them thicker, which is exactly what it is suppose to do to bowel movements too. I havent done alot of research on it but I do know there are several different kind but 2 mainly 1 with sugar 1 wihout...Please keep me updated on how your son does with this so maybe I can give it another shot with Dylan.

    At Dylans next appt I am going to ask about the probiotics, I did purchase some...but like any other supplement whether it be all natural or not you hate to give a smaller child anything without asking a dr first....but Ive heard alot of parents say that probiotics help their children....That might be something worth asking your sons dr about as well...just to see if they recommend them.

    I hope your little guy starts getting the hang of things soon---I know it must tough....

  8. Hi Catrina, Thanks for the info on the Pectin, I was worried I was using the wrong kind. He's taking 30ml with a half a glass of lemonade and is not having any problems doing that. He's also taking half of a chocolate Exlax. I think it may be too much since he still seems to be oozing a lot. He made a huge mess all over himself at preschool yesterday.....shirt, shorts, socks, shoes. He never does that so I'm thinking the Exlax is the culprit.

    We have an appointment on Friday morning at Children's to see how things are going. After we give this new regimen a try for a while, I will definitely ask them about the probiotics. We've been doing the pectin and Exlax for less than two weeks now so I don't yet have a feel for what to expect.

    I was wondering if there was an easier way for us to communicate....maybe via email? I feel like we're cluttering up your blog!

  9. Yes thats fine my email is

    Do you have myspace or facebook? I have both you can look me up on there as well...Catrina Johnson from Kentucky

  10. Oh I wanted to add, that Id love to hear an update about how the appt went...yes i think the laxative would have the explosive diarreaha effect so I wonder why they wanted you to try it...Probably to try to keep the colon empty, sometimes thats a trick to try with bowel management. Email me when you can, like i said id like to hear how the appt went!