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.. :)

Friday, August 28, 2015

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.

Wednesday, July 15, 2015

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.

Sunday, July 12, 2015

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!

Wednesday, June 10, 2015

Pictures from our 2 hospital admits... #65

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

Lots of updates.. #64

I really haven't had the time to update from April until now. A lot has happened! Isaac had 2 hospital admits. One was for a possible infection (enterocolitis) due to a rectal impaction. But it ended up not being that! Thank God. It was a viral illness but he did also have an impaction. We battled constipation pretty badly for about 5 weeks. We had many, many visits to the surgeons office as well. Almost every other day it seemed like. 

At one point, we had to bring senna and enemas on board to keep things moving along. Then I just felt like that was also bringing unwanted side effects like lots of stomach aches, cramps, misery. Our GI doctor had recommended a naturopath to us quite a few months ago and I finally decided to call and make the appointment. I mean afterall, what else could I do? It was definitely better than to keep him on the current regimen that was miserable for him.

We had a great appointment with the naturopath. He recommended some different supplements to try to rebuild the gut flora and to get things working properly. We have him on 2 different probiotics, L-Glutamine, and a FOS to feed the good bacteria. I will post the pictures of the supplements for visual aid and talk more about them in another post. 

After about a couple days on the supps Isaac did a complete turn around. In a good way! Things became more regular for him. We have since weaned off the senna and not needed any harsh medical interventions. Which is a plus. The naturopath also recommended a no dairy diet. Which has been a little bit of an adjustment. But we already had been doing limited dairy. There are plenty of options for dairy free. Lots of yummy vegan cakes and cookies. I can't even tell the difference! And either can Isaac. Which is always a plus. 

Summer has snuck up on us. We had to move unexpectedly because the house we were in, the owner decided to sell it. Which was a big bummer and has been adjustment for us because we downsized. We will be looking to buy a home in about 6 or so months. For now, I don't have to worry about mowing or maintaining a lawn ;) We also have a swimming pool and playground literally within steps of our door. It has been a busy time for us. 

Hope everyone is doing well! 

Friday, March 27, 2015

One Year.. #63

March 16th marked a year since Isaac had a hospital admittance. ONE YEAR. We have managed to stay out of the hospital for one year. I can't say it enough. He has had some ups and downs this past year but it hasn't been serious enough to warrant a hospital stay. 

In fact, we just saw our surgeon 3 days ago and all was well on the exam. She told us after Isaac had his surgery that as he got older things would get easier. You just can never be sure with Hirschsprung's Disease so you learn to not count on certain things. But I do have hope. Especially with how well he has done recently. 

Today I took him for a Birthday Cake Frappuccino from Starbucks to celebrate. His first drink like this ever ;)