Well.. #54

Well the past 6 weeks or so have been pretty confusing. What we thought was some type of viral or bacterial GI infection seems to be some type of episodes. The reason I say that is, I can pin point other times this has happened this year which never mounted to being a full blown virus. No fever, no vomiting, no watery diarrhea. It has been soft mushy stool, intense stomach pains, and just this past few weeks mucus and blood.

We decided after seeing our surgeon that is NOT Hirschsprung's related. But it is GI related. So she suggested we meet with our GI dr right away. Which we did, on Wednesday. We had a pretty lengthy appointment. We discussed everything that has been going on and he felt we needed to take a look further into things. Which means having a Flex Sig and an upper GI study so he can see his small intestine and also his sigmoid colon. He will be looking at where this inflammation is coming from. The mucus and blood usually mean some type of inflammatory issue. He said it could be a wide range of things.. From a food intolerance, an autoimmune disease, IBS, or maybe even no cause behind it. There is a wide, wide range of things he said. He will take biopsies during the procedure. He is looking for specific things that will help with a diagnosis.

At first we had no time frame for these procedures because he wanted him to be in an "episode" so he could see what was actively going on. It's like how are you going to see the inflammation when it's resolved 2 weeks later? So we really didn't have a time frame for the testing. It could be next week, next month, or next year. But then today the symptoms started again and we believe he is in an episode.

His testing got fast tracked to this Monday. The 6th. Sunday is his 3rd birthday party and Wednesday the 8th is his actual 3rd birthday. I never ever figured we would be celebrating his birthday and dealing with these issues at the same time. But we are ready for some answers. I just pray it is nothing more than some type of food intolerance or even IBS would be ok. I just can't take another punch in the stomach with another diagnosis.

I have been having a lot of anxiety today thinking about Monday. I just don't even have the words for it. I am utterly speechless. Numb. Sad. Confused. Angry. And frustrated. I just keep praying that things will be ok and we breeze through this.

Please keep my baby in your prayers. That's all we ask for right now. I will update more this week and post a few pics from his birthday. ♡

More GI struggles.. Our life.. #53

Well this past month has been a struggle to say the least. We thought about 4 weeks ago Isaac was sick from a viral stomach bug or possibly a Hirschsprung's related infection. We did antibiotics for the first time as a preventative to be safe. Which totally messed up his whole system. We've been trying to get him back regular. Working closely with his surgeon, chiropractor, and nutritional practitioner. Fast forward to now.. a few weeks later and we are having issues again.

First it starts with stomach cramping, loose mushy stools (not diarrhea), and this past week has been accompanied by blood and mucus. This is leaving us stumped because nothing has changed in his diet. He has been food allergy tested. We don't do dairy, limit soy and gluten and absolutely no GMO's. We started thinking back to this past year and really believe all these situations are not all viral but some type of other GI episodes.

We saw his surgeon today who also feels the same.. this is not viral but some type of other GI issue. She does feel it is not Hirschsprung's related though. Which is good. She decided to consult with our GI dr (they work in the same clinic) and have him get in touch with us and see Isaac asap. She feels maybe more food allergy testing is needed or maybe our GI will have some other ideas of what it could be.

This week has been stressful, to say the least. More questions, some answers, and a lot to think about. We enrolled Isaac in a toddler parent program at a local private school.  He was unable to attend today because of what has been going on. We only go one day a week so it was a bummer we didn't get to do that today.

His 3rd birthday in about 2 weeks away. I can't believe it. I having planning a party last minute because of the issues he has been having. This year the theme is Ninja Turtles :) His current obession. I hope we can be healthy for his party we are so excited to celebrate. ♡ I will update more as I get it..

As always, thanks for following our journey!

CHIROPRACTIC care for Hirschsprung's!!.. #48

Please forgive me! I have been so sidetracked the last couple days, err weeks, that I have not had time to even update. I have been vaguely talking about how we started Isaac on chiropractic care and I have been getting floods of messages and emails about it. I think it's important, especially with special needs medical kiddos, to seek out ANY alternative (dont know why it is called alternative medicine because this is our choice in medicine) therapies you can. With that said, each child is not the same so results will vary. Hirschsprung's is a very tricky disease and there are so many ups and downs. Trials and errors.

So we saw our GI dr back in March that suggested we try some alternative therapies with Isaac. Chiropractic care was one he had mentioned. I had thought about chiro care in the past but with everything going on I just never got around to taking Isaac in. Boy do I wish I would of done so sooner.

In my previous posts lately I had been talking about bringing Isaac to a nutritional practitioner, trying senna on and off, a lot of ups and down. We have been battling getting him regular for almost 7 months. Since October. It has been really stressful. So I figured, you know what, why not. Why not try chiro and see what happens. 

Fast forward to about 5 weeks of chiropractic care. We saw Isaac's surgeon on May 8th and for the first time in 6 months she was shocked. Shocked that he was completely clear. Empty. No stool at all. She even joked she could feel his kidney he was so clear. This was the first time in at least 12 visits she had said even something remotely close to this. About a week prior to that appt we had taken Isaac off his prescribed senna dose because it was causing a bunch of adverse reactions for him. Lots of gas, stomach pains, diarrhea. At this point I felt like it was just too much for him. So telling his surgeon what had been going on we felt at this time he should be taken off the senna. His bowel was now functioning normally. I believe the chiropractic care was the missing piece to this puzzle for my son. Chiropractic care is not just about back or neck pain, it's about allowing your body to function and heal properly through these adjustments. This essentially allowed his bowel to "wake up."

I am very much a science based person. So there is not question in my mind that this is not a coincidence. We finally found a combination of things that are working for our son that does not include medications or some type of medical intervention.

We take Isaac to an awesome, well known, chiropractor here in the Tacoma area. Dr. Mike Long at Renaissance Chiropractic Center. Dr. Mike is so amazing with kids. This is by far Isaac's favorite dr to visit.

I know a lot of parents question alternative care because they just don't know much about it or they are afraid they can't afford it. Chiropractic care for children is so inexpensive. So inexpensive. And so so beneficial! Isaac has been doing very well with it and only goes about once every 2 weeks.

It has been such a huge relief to not have to give him senna everyday. Or do rectal irrigations. Or some type of medical intervention just to get him to poop. It made me cringe every time I had to give senna to him. Not knowing if it would upset his stomach and cause him pain. Things really did a 180 degree turn in such a short amount of time for him. I hope it continues to look up.

Here are some pictures from one of his appointments with Dr. Mike!! And for more information about Renaissance Chiropractic Center here is their link to their website..

www.chirotacoma.com

Normal or Not?.. #10

Isaac did really well for the first few months he was home. We had no issues or have anything pop up in regards to the Hirschsprung's. We learned so much about what to look for and also A LOT about a new baby!! You don't know ANYTHING until you have a baby. It was really hard to decipher if things were "normal" baby stuff or something to do with the Hirschsprung's. As soon as we got into a routine, he would switch it up on us again. Isaac has always been a good baby. Never been fussy; always smiling.

I started to notice a little bit of what I thought was reflux. Spitting up, gassy, congested all the time. I decided to bring him into the pediatrician to have him checked out. They gave us a prescription for Zantac and basically sent us on our way. I respect all doctors but seriously if another pediatrician tells me "it's normal" I will blow up. The reason I am saying this is because I brought Isaac to the doctor numerous times because of his gas and spitting up. And also other things related to his tummy that I just didn't feel right about. And I was told every time it was "normal." One day I just felt deep down inside that something was not right with him. He had been straining really hard, turning bright red, and grunting A LOT. And then a boom in his diaper. Hirschsprung kids can get an infection called enterocolitis which if left untreated can be VERY life threatening. Kids that get enterocolitis get constipated before hand and then the back up stool causes bacteria to over grow, causing this terrible infection. It can also come on very fast and furious. We were given strict guidelines to follow and what to look for in regards to enterocolitis. When we went to change his diaper he literally was straining so hard and then it happened... Explosive diarrhea that literally launched about 3 feet on to the wall. THIS was one of the signs of enterocolitis. Explosive diarrhea.  At this point I was sure something was going on.. And it was BAD.

I immediately picked up my phone and dialed the on call pediatric surgeon. It was a Saturday and why does crap always go down on the weekends! I knew we would be heading into the ER.. Luckily we were given "in case" instructions beforehand so we knew what we needed to do. We were instructed to call the on call pager and speak with the surgeon on call to let them know what was going on so they could let the ER know we were on our way.. That way the surgeon could tell them exactly what tests they needed to run and then they would be down to check Isaac out. I kept telling myself I was just over reacting.. The phone rang about 2 minutes after I had dialed in our number and pressed pound.. The surgeon was calling back..