Wow. Almost 4 years since Isaac was born and I am going to hit my 70th blog post. Last time I checked the stats on our blog we had about 20,000 views! How amazing is that. With that being said, I feel like I haven't had the time to really get into the work we've been doing to heal Isaac's gut. I've talked about all the alternative therapies we have been doing.. Chiropractic, seeing a naturopath, a special nutritional practitioner, and trying different supplements. Mainly talking about the supplements because these are often a huge part of it, but because we alternate different ones I haven't really gone into depth about them. I am hoping to do that in the next couple blog posts. It seems like when I finally sit down to write about them, something else has come up. Which is what this post is about..
Living with Hirschsprung's means that no day is the same. One can be extremely good and the next, well downright awful. I feel like for the last year things have been back and forth. Many good days, a lot of bad ones too. A lot of questions, some answers, not all the ones we need. Within this past year Isaac has had a lot of testing and procedures. Flex sig/colonoscopy with 10 biopsies, dozens of xrays, a couple of hospital admits, 2 rectal disimpactions, scratch allergy testing, blood allergy panels, barium enema, and now we are looking at another test and another specialist.
Our surgeon and GI doctor have felt for an extended period of time (almost 2 years) that Isaac needs to be on the bowel stimulant senna. They feel that he is not moving waste through fast enough. Which is common for Hirschsprung's kids. Slow motility just comes with the territory. Even after a successful pull through. We have tried for 2 years to find the right dose for him. We have tried small doses, large doses, splitting the doses, giving at night, giving in the morning, giving every other day.. You name it.. We've tried it. There comes a point where Isaac stops tolerating the senna and it causes a lot of adverse reactions for him. When he is on the senna he spends his days laying around in constant pain from the cramping it causes. Last week it was so extreme one day that I almost brought him into the ER. Nothing I could do to help him with the pain. This has happened so many times that I finally said NO MORE. Yes, the senna is keeping him clear but it is also bringing so many side effects.. Intense pain, cramping, making his appetite pretty much non existant, constant smearing which he is potty trained (another super huge accomplishment we achieved this summer) so that means he has to change his underware so many times during the day, things like that. He just cannot tolerate it, even in the smallest amounts. And small amounts don't even help him so there is really no point. We saw our GI last week and a nurse practitioner from our surgical team earlier this week. After the bout last week and informing both sides of our team, our GI decided to suggest Isaac be seen at Seattle Children's Hospital by their director of motility, Dr. Ambartsumyan. She comes highly recommended and we heard she is an amazing doctor who really knows everything in regards to motility. Things that our team down here cannot help with in any other way than they have. Our team wants him to have motility testing. Which I'm not even sure exactly what type yet. There is a study called manometry testing. Which is where they study muscles and nerves in the sphincter. Here is a link for more detailed information..
http://www.cincinnatichildrens.org/health/a/anal-manometry
However, I am not sure if the new specialist will want any further procedures or testing done. I am not familiar with any type of motility testing. This is a whole new area for us.
We are currently waiting for a call back so we can schedule our first appointment up at Seattle Children's. I am hoping to hear within the next week. I imagine our first appointment will be for Dr. A (that's what she goes by) to learn in detail about the issues we have been having. Then I would expect for her to get a plan in place for some testing. I was told that the motility testing is a 3 day hospital admit and the bowel management program is about a week admittance. So we could be up in Seattle for a minimum of 3 days but up to 7 days. When I have more information I will do an update.
In the meantime, we have a team meeting with our surgeon, surgical nurse practitioners, and our GI in less than 2 weeks to talk about the plan for the in between time. That way we can all be on the same page.
The care these doctors have for my son is nothing less than amazing. I am glad we have a team that can say hey this isn't working so let's see what another expert can add to this. The waiting part sucks.. And the fear of the unknown is anxiety provoking. Of course we never want our child to continue to endure all these medical hurdles, but I know I have to keep pushing and fighting for him because it's better to get him on the right track at this age, then to let things keep going with no real plan that is working.
Please keep checking back! I appreciate all the feedback on how my blogs help all of the readers.
Until next time.. Xo!
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