Sunday, September 27, 2015

Update on motility testing.. #71

We got our call from Seattle Children's Hospital last week with a date to see Dr. Ambartsumyan, the motility specialist. We also get to meet with one of their pediatric surgeons, Dr. Avansino. Both of these doctors work as a team in the clinic so we get the pleasure of meeting them both and welcoming them to our team. They have a clinic on Tuesday's especially for Hirschsprung's kids so we got our appointment pretty quickly. We will be in Seattle (only a 35 minute drive from where we live, thankfully) on October 13th.

This appointment will be just to go over Isaac's medical history in detail. To look at all the studies he has already had, learn about the bowel regimen we've been doing, what works or hasn't worked for him, and then get these doctor's opinions on what additional testing Isaac needs.

I have heard the motility testing and bowel management program can vary from 3-7 days in inpatient. We will learn more about all of this at the appointment as well.

Hoping to hear good news! I will update after the appointment. With adding these 2 doctors, we now have 11 doctors/practitioners on Isaac's team. Wow. Eleven. That seems like so many. We have a regular pediatrician, 2 surgeons now, a GI, 1 motility specialist, an allergist,  a naturopath, a chiropractor, a nutritional practitioner, and 2 ARNP's from the surgical team at our primary hospital. All that have been such a huge factor in fighting this disease. ONE disease and 11 doctors to help us fight. Plus a huge family and friends who love our son so much. Definitely blessed.

We also have a Facebook page that I do update frequently... Link is here..

https://m.facebook.com/hirschsprungsstrong

Thursday, September 17, 2015

Hirschsprung's & Motility testing.. #70

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!

Wednesday, September 2, 2015

BioTek iGg food allergy panel.. #69

About 4 weeks ago we had a blood draw for the US BioTek iGg food allergy panel done. Our naturopath suggested we go ahead and do the testing to find out which foods trigger an immune response. Super awesome test and well worth the money. Insurance doesn't cover this type of testing so we paid out of pocket but it actually was pretty affordable... 189$ which we pay directly to our naturopath.

On Monday the 31st we finally got the results and went over them with our naturopath. In the past, Isaac has had a separate allergist (MD) who did the skin scratch testing. From those, we learned he had a coconut, turkey, oatmeal, and lactose allergy. So we have been avoiding these foods for about 2 years. This blood panel is a bit different but also more accurate. The results of the blood panels showed...

HE HAS NO FOOD ALLERGIES! None. Zero.

My mouth was wide open as I sat there in disbelief. His naturopath was kind of shocked as well. He tested NO REACTION on anything. The only thing that showed up as a VERY LOW reaction was yeast and garlic. Odd. But those aren't even considered an allergy because of the degree of antibody that showed up. We also learned that he has no inflammatory issues with his gut. When you have food show up in the High, Very High, or Extremely High areas, that also means you have a lot of inflammation in your gut.

Getting these results combined with good barium enema results in July really has put us in a good place. I feel really relieved and accomplished that I have been doing all I can for Isaac.

Our naturopath has us on a probiotic regimen. Rotating 6 different supplements. As soon as I order these new ones I will be doing a post about them. To be continued.. :)