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

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!

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.. :)

Why?.. #68

I often get asked why I don't sleep. Or why do I always look like I have a million things running through my mind. The truth is, I have always been a thinker. My personality has always been more anxiety driven. I always have to be doing something. I am a go getter for sure. All of these crazy attributes of my personality have seemed fitting and crucial to fighting this disease. To exhausting myself physcially, emotionally, mentally and then some.. Seems to be the repetitive attributes to this disease. Ones that do not colapse me or limit me in anyway. When you feel like you have no more left, you dig deeper and just focus on the next breath.

When my 2 day old baby was taken from my arms and handed over to a nurse I had never met, I thought this could be it. I carried this baby for 9 months. 42 weeks + 1 day. I endured so many medical challenges during my pregnancy, went through hours of natural labor and delivery, just for him to be taken away from me. Maybe taken away from me forever. For once in my life, I felt completely hopeless. I had no back up plan or no way to figure this out. I knew that I had to rely on these complete strangers to help my son..

When you go through the initial shock of an experience like mine, this thing inside of you ignites. This switch is turned on and it never seems to be able to shut off. When your child is diagnosed with a chronic, rare, medical condition you become this person that you never even knew you could be. Times when you would sit down and be quiet have turned into times when you keep pushing for an answer. Times when you would let things ride out and see what happens are gone. There is no waiting in these types of things. Time is critical now. Your senses are taken up a notch and the slightest shift in your child's demeanor usually means a storm is brewing. Which storm do we have to fight this time? When you wake up in the morning just praying and hoping for a good day, medical wise. A day where you can just get done the bare minimum. Or one day that you don't have to worry about something. When you realize years have gone by and you seem to have really lost yourself in all of this. That you have one tiny person depending on you to give them the best qualify of life possible. That this little human depends on you to fight for them. To figure out the things that work. To ask for second opinions. If you have a slight glimmer of hope that one thing may work, you try it. You spend countless hours browsing medical journals, groups online, reading books, reading anything and everything that could even possibly maybe even help a little.

A lot of times when people want things in life, they work really hard to get it. Most achieve it. You know how this feels? Having a child with a chronic medical condition that there is no cure for.. You know what it feels like? That the rug keeps repeatedly being ripped out from under you. Like a big slap in the face. Like you work so hard and are about to reach the goal, and you fall back down again. After awhile, you feel hopeless. You spend a lot of time wondering what it will be like when your child is 6, 7, 13, 15, 18, 21.. Will it ever get better? Will he always have stomach upset and just want to cuddle on the couch? Will he be able to even eat a variety of foods to keep himself healthy because he has a multitude of food allergies. Will he learn to listen to his body and know what it needs. What if something happens to me, his mom? The person who has dedicated her life to keeping him alive. When you go back to the initial time you really felt like you may never hold your child alive again, you never want to go back to that feeling again. You never want to go back there again. So you keep fighting, fighting like you have for the last (roughly) 1,460 days your child has been alive. You go back to that day when that switch was turned on and you remember how that feeling felt. That feeling always is on the forefront. Taunting you sometimes. Sometimes when your child is really, really sick, that feeling sneaks it's way into you, and you just for a moment feel it. But then you remember how hard you have fought and for how long you have been doing this. You can't give up now. That little baby needs you. So you set your fears aside, and you focus on the challenge ahead. Afterall, you have no other choice.

Barium Enema results.. #67

On Monday July 13th Isaac had his barium enema procedure. Those are never fun but it went way better than the first 2 he had when he was a baby. He was able to understand what was going on this time. Which made a world of difference. There were barely any tears and definitely no red face hyperventilating crying going on. The actual procedure is very quick. It takes longer to set up than it does to take the images. We had the same Radiologist Assistant that has done both of the prior ones. So helpful. He knew our son and we knew him, trusted him, so that put us more at ease.

Short and sweet.. We got the results within 24 hours and..

THE RESULTS CAME BACK NORMAL. :)

Such a huge relief for us.

Hirschsprung's Disease and a Barium Enema.. #66

We had a follow up with our GI doctor on Thursday the 9th and it didn't go as planned. Back in April/May when Isaac was having issues, which included 2 hospital stays, one of the surgeons on our team suggested we redo a barium enema. He has done well overall but there have been some things and symptoms that we have not been able to pinpoint why they happen or for what reason. He has had 2 Barium Enema's before. One was when he was 2 days old, which they used to diagnose him, and they other was when he was about 3 months old. Both of which I talked about in my prior blog posts. 

A Barium Enema is a contrast dye study to show the full spectrum of the colon (large intestine). They give him an enema with water soluible dye in it which highlights the entire colon and then they take pictures of it. The solution basically dilates or inflates the colon so any abnormalities can be seen. The whole process takes about an hour. They also see how fast he passes the solution out. That will also tell us a lot about his evacuation process. 

Both BE's (Barium Enema) were not fun AT ALL. He was also very young and not able to understand what was going on. I am hoping and praying since he is older, it will go smoother. They both were a complete nightmare. Lots of screaming, red face crying, plus hyperventilating. 

In the appointment with his GI doctor we were discussing potty training. Which we started with Isaac recently. He is going on his own, at least twice a day, and has all the normal habits in a kid without Hirschsprung's. He can feel when he needs to go, etc which is really, really good news. On the flip side and the reason for the repeat BE, is sometimes Isaac's stool looks like a ribbon. So when I told our GI this, he consulted with our surgeon right away. They share a clinic so it's really convenient. I guess ribbon like stool can mean there could be a narrowing somewhere in his colon, amongst other things. Not good. The BE is to rule out any structural abnormalities in his colon. His primary surgeon felt a couple months ago when the other surgeon ordered the BE that it was not warranted at that point. Mainly because he already had a repeat BE (yes 3 years ago but results were normal) and all the other dozens of xrays and procedures have shown nothing. But I guess now that I am able to see the way his stool looks in the toilet vs a diaper, ribbon like stool is never good. Super disappointing and scary. I'm not sure what the outcome will be. He could have a narrowing in there somewhere which could be treated a number of ways.. Trying to stretch it under anesthesia,  doing botox to relax the area, even the possibility of another or redo surgery to correct it. All those outcomes mean more things Isaac will have to go through. 

Obviously we are hoping for a normal result. But the fear of the unknown is really really scary. I am glad we are moving on with this test so we can know for sure one way or another. But I hate having to put him through another traumatic experience. He has done really well so I am confident if anything is wrong, it will be an easy issue to address. I hope. And I pray for.

His test is scheduled for tomorrow, Monday July 13th at 9am. Please join us in saying a prayer or offering some kind of well wish to him. Thank you all!

Pictures from our 2 hospital admits... #65

Just some pics from our hospital admits from April - May 2015..