Rare Disease Day is February 28th.. #62

Rare Disease Day is February 28th.. SHOW YOUR SUPPORT!

Hydrogen breath test results.. #61

The hydrogen breath test is a test for bacterial overgrowth, or intolerances to lactose, fructose, or sucrose. He tested negative for the malabsorption portions but he did test positive for small intestinal bacterial overgrowth or SIBO for short. Issues with breaking down foods (malabsorption) can cause SIBO but because he doesn't not have an issue with that, his Dr thinks it's because of the structural abnormalities of his colon and small intestine. He has motility issues obviously because of his Hirschsprung's.. So the small intestinal waves as they call (waves of bowel wall muscular activity) them don't function properly which causes the bacteria to overgrow. Kids with Hirschsprung's are prone to slow motility and it is causing his small intestine to not function properly. We aren't sure if this will be a reoccuring situation, it may very well be. We don't know how long this has been a problem because we just started noticing the symptoms after he was sick at Christmas. But looking back we think this is what was causing his issues on and off all summer which subsequently lead to his sedated procedures back in October. That testing would of not caught this as all we were looking at was his large intestine. Right now we are treating with antibiotics (yuck) and then will work to restore the good bacteria. We will also do certain small diet restrictions to keep it under control. We may take him to naturopathic dr, who specializes in SIBO, in Oregon. We haven't really gotten that far yet. 

Managing Hirschsprung's Disease naturally PART 2.. #59

(My son did have the pull through surgery for any newbie readers. This is what we are doing to manange Hirschsprung's Disease AFTER the pull through. I guess there was a little bit of confusion. Some people are thinking we never had the surgery and are just managing it without surgery. NO. Not the case)


Over the past few weeks I have had a huge increase in contact about my blog regarding managing Hirschsprung's Disease naturally. I wanted to take some time to update everyone and post a part 2. So here I am! Over the past few months we have had a lot happen, not just medically, so I do need to do a recap of our 2014 year. I will get to that in the coming days. I hope :) 

Just a reminder, I feel like I say this a lot but I can't stress this enough... As always, I am here for support, encouragement, ideas, recommendations, but I am NOT a doctor or licensed in any form of a medical practice. I am just a mom who has done A LOT of research, tried A LOT of things, and this is what has worked best for my son. We have 7 different medical professionals we manage Isaac's care with. I love helping and giving recommendations, but I don't have all the answers or am not in a place to give medical advice. 

One of the supplements we use (specially the Energetix line) is prescribed by a medical professional. You cannot buy these in the stores, you can buy them online but I would suggest not doing so. The recommended dosage is based on an adult dose, not a children's dose. Our provider does a specific kind of testing called muscle testing to see what supplements Isaac's body is needing at that time. At the most, we do a supplement for 90 days. Most of the time, less. She also tests his body to see exactly what dose (in drops) he needs. It is very complex. So this is why I suggest seeking a medical professional who is qualified to dispense and prescribe these supplements. These may not even benefit your child. They are very specific to certain medical conditions or aliments. Please read on their website for more information. You can also search for a provider in your area. Here is the link: 

http://www.goenergetix.com/find-a-holistic-practitioner/

So I am going to breakdown the 4 ways we manage Isaac's Hirschsprung's Disease naturally in our daily lives. 

First, is nutrition. We eat only organic, non-GMO, whole foods. We don't eat any processed foods. Which means I cook 3 meals a day :) I enjoy doing it. And I know it helps Isaac. We shop our local farmers markets when the season is in, we do a lot of shopping at our local grocery store that carries a lot of organic non-gmo brands. We stay away from the foods Isaac can absolutely not have, which are allergies to him (oatmeal/oats, turkey, coconut, and lactose). He is lactose intolerant so we do not do milk. He can tolerate cheese and dairy products, just not milk. We usually try to stick to raw cheeses. It is easier for him to break down the enzymes. We also ALWAYS do a smoothie every morning. I will buy a bag of organic frozen fruits and then will put spinach in there, along with an organic juice for flavor. In the next section I will talk about the supplements I add into the smoothie everyday. 

Second, is supplements. It is easiest to add all his supplements into his morning smoothie. This way I know he is getting them and it also makes it easier to hide them. Because sometimes kids just don't want to take them! :) So here is a picture.. Then I will discuss from left to right.

Tiny bottle on left is Vitamin D liquid. We do 3 drops which is 1200 IUI's

2nd on left is by Energetix and it's Lymph Tone 1. We do 1 drop

3rd bottle in is Core Olive Leaf and we do 8 drops

Middle bottle is the Core Condurango Blend and we do 6 drops

2nd to right is Garden of Life Multi Vitamin. We do 2 vitamins

Last bottle on right is also by Garden of Life and it's their raw probiotics. We do 3/4 tsp

Not pictured but we also do Elderberry syrup (1 tsp) and Vitamin C (1000 mg's) daily for extra immune boosting properties. 

The multivitamin and probiotic brand I use is Garden of Life. I have been so happy with this brand. The probiotic contains 23 raw fruits and veggies per serving and delivers 5 billion probiotic cells. How incredible is that! The multivitamin is also a key supplement I just started incorporating. This one has 24 organically grown fruits and veggies per serving. 

PROBIOTIC

MULTIVITAMIN

Here are the Energetix supplements he is currently on that are prescribed by his practitioner

CORE CONDURANGO BLEND 

Core Condurango Blend is a botanical blend designed to assist with temporary digestive discomfort. I put the ingredients in this because it contains senna leaf, which is what providers often prescribe as a medication for Hirschsprung's. Also, look at the other ingredients which are good to help aid in bowel movements.

CORE OLIVE LEAF EXTRACT

Core Olive Leaf is a botanical extract designed to support the immune system. Used historically to maintain normal circulatory function

LYMPH-TONE 1

Lymph-Tone I is a homeopathic combination formula inspired by the work of Dr. Hans-Heinrich Reckeweg who postulated that symptoms are an expression of the body’s progressive and strategic efforts to deal with toxins. Lymph-Tone I is formulated to address acute symptoms.

                                                                   

Third is chiropractic care. This is has been, in my opinion, invaluable to our son's care. He was having all sorts of issues with things moving too slowly before we sought our chiropractic care. We did try senna medication. Which helped, but did cause a lot of adverse side effects. Lots of stomach pains and cramping, gas, etc. It just wasn't very fun for Isaac. Our GI doctor was actually who recommended chiropractic care. I did a post on our chiropractor. You can reference it for any further information. We are seeing him once every week or every 2 weeks. 

Last  but not least, is essential oils. I have gotten really into essential oils over the past year. The main oil we use topically on him is by a brand called doTERRA. The oil is a digestive blend called DigestZen. I also included a full length informative section this oil on my previous blog about managing Hirschsprung's naturally. You can read all about it here.. 

http://sweetbabyisaac.blogspot.com/2014/01/managing-hirschsprungs-disease_21.html

I use this oil 2 times a day, topically. I put 2 drops on his stomach, rub in a clockwise motion. I also use it as needed for any type of stomach upset.

I think this about sums it up. It's really been trial and error for us. Nothing has come easy. Hirschsprung's parents know what I'm talking about. I hope maybe some of these things will be able to help your child. It's all about knowledge! :) And networking :) I have learned so much just by being on forums, groups, connecting with other HD parents.

Now I just have to add a blog about our holidays and recap 2014! That will come.. Hope everyone has had a great start to 2015!! 

Modeling for Zulily!.. #58

Last week I sent over Isaac's picture and stats to a company called Zulily. Many people know it, if you don't I suggest you go check it out!!! They have kids clothing, toys, art supplies, and they also have adult clothing, shoe, home goods.. The list goes on.

Anyway, they contacted me right away and wanted him to model. His event is called Story Book Wishes and will be live online tomorrow December 14th. Here is the picture that popped up today on their website as a preview for tomorrow's sales. I am so proud of him ♡ I will post all the proofs they send me as well.

Breezing by with Hirschsprung's Disease.. #57

I feel like I haven't updated since October when Isaac had some testing done. Between then and now he also had some allergy testing done with his allergist. It had been a year since we had seen him last and we decided since Isaac was having some issues that now had been ruled out with his procedure under sedation by his GI, that maybe it could be food allergy related. We already knew from last year when he was allergy tested that he was lactose intolerant and also had an oat allergy. But we felt maybe someone else was going on. 

This time the dr did a 35+ food panel. A lot more than his testing last year. And who would of know, he is allergic to TURKEY and COCONUT! How odd is that?! We eat a lot of turkey and chicken figuring it is a lean meat and easy to digest. We also gave him coconut water EVERY single day in his smoothie. After discussing with his allergist, we were pretty confident we should remove these foods from his diet. Especially after the episodes he was having. Everything kind of pin pointed to these foods at the culprit. What an easy fix! And relief for us. 

He had the simple scratch test again. This time it was a little bit more intense because of how many foods were on the panel. And well because Isaac is 3.. A little bit more aware of what was going on. BUT he did amazing. He really did. He is such a strong boy. 

So jump forward about a month, to the present. We just saw Isaac's surgeon and GI within the last week. Both of his exams went well. They felt around on his tummy, listened to his bowel sounds, and everything looked great! We didn't even need to go for an xray because they felt things looked really good from what they could see. Since removing those foods from his diet, we haven't noticed any of the symptoms we had been seeing. Which is such a relief. Now we need to get into our nutritional practitioner for a recheck. :) We also have continued chiropractic care which has been such an asset to this battle. In one of my other posts I also talked about the essential oils we use for digestive issues. We are still doing these as well, as needed. We seem to be breezing by with Hirschsprung's Disease. At least for now :) 

I wanted to add this little insert to this post because this is a supplement Isaac's nutritional practitioner has him on. Which has also kept him regular and has been helping to "heal" his gut. As you can see from the ingredients, this is really beneficial for HD kiddos. It has a lot of natural elements to help with bowel movements and for digestive upset. It is called Core Condurango Blend by Energetix. I will put the link to their site here.. 

http://www.goenergetix.com

**Disclaimer - I am not a licensed medical professional. I only administer supplements and natural products under a medical professional advice. I am not claiming to cure or treat any medical condition. This is what has worked for my child, but may not work for yours. Please do your research on ANY product you chose for your child. Speak to a medical professional. I am just a mom trying to help her son in any way possible. Energetix only sells their products to licensed healthcare professionals so find a reputable practitioner in your area. 

Flex Sig - procedure day.. #55

Last Friday, the 3rd, we decided to go ahead with the Flex Sig and additional testing under sedation. With the continuing episodes of mucus in the stool and stomach pains, we thought it would be a good idea to just go ahead with it. So they got us on the schedule for Monday October 6th. Check in time 10am, procedure time 11am. I really felt like I had been punched in the gut. Usually I feel like I have time to prepare, we had an additional barium enema and exam under general anesthesia with our surgeon and we had at least 2 weeks to plan for those. This was scheduled for 3 days away. His 3rd birthday party was Sunday. I was already stressing about preparing for that. 

We arrived at the hospital in the day surgery area. Had to get all checked in. When they brought us back to the pre-op (not necessarily called that but I don't know what else to call it lol) room they went over all the standard info - medical history, allergies, etc. They also explained to us how they have critical care nurses and a critical care dr in the room during the procedure. I was expecting things to be less formal. This seemed like surgery all over again. It was kind of anxiety provoking but I felt reassured that they were doing all the steps necessary to keep my son safe. We got to meet the pediatric critical care dr. We really liked him a lot. We also got to see Isaac's GI dr who reassured us everything would be ok. I was a complete mess. It's really scary having your child go through anything. Surgery, exams under anesthesia, sedated procedures. It just really got me emotional and upset. Luckily, our GI dr is super amazing and reassured me, and I obviously trust him without a doubt. He is an amazing dr. I was really struggling emotionally with this. I wasn't scared to find out the results, I was scared to let him be sedated. Plus, they do that through an IV and my son has always been hard to get IV's in. Lots of hours, screaming crying, miserable times trying to get the IV's in. So I was really nervous about this IV deal. But they do a lot of prep work and have a lot of tricks for kids who are hard sticks. I was truly amazed at their technique. 

First, they put lidocaine on 4 different areas of his hands/arms. 4 places prepped so they could get an IV in. Then they put little hot packs on them. The IV went in right away and he didn't even notice. Didn't even make a peep. How amazing. A child life specialists was entertaining him on the iPad which really really helped. I can't even believe how fast and efficient this team was. It made everything so much easier on Isaac and us. 

The actual procedure only lasted about 15 minutes. Originally he was just supposed to have a flex sig which just looks at his sigmoid colon but since his dr was not seeing anything concerning he decided to do a whole colonoscopy. He said to the naked eye he did not see anything concerning or anything that could tell us why these episodes were happening. There was no inflammation there. He did take 10 biopsies though while he was in there. He said everything looked great. Which was excellent news. 

Isaac never missed a beat. He woke up, asked for the goldfish crackers he was promised and the juice. :) He was charming his nurse and he even got a present from the staff since his birthday was just a few days away. I cannot believe how brave my son is. He never acted scared. Not once. NOT ONCE. He is only 3. He amazes me every single day. 

We got word on Tuesday night that all his biopsies were NEGATIVE. His dr thinks that the texture of his stool (which he saw on the colonoscopy) - gritty and thick - is the culprit behind the mucus and occasional blood. We are working on getting his stool and colon more hydrated, keeping the moisture in, and see if that helps with these episodes. Which makes sense. So as of now, that is our plan for care. We will see his GI back in less than 2 months. WHAT A RELIEF! 

Here is my BRAVE guy :) 

This last picture shows where he took the biopsies and the area that is circled is where his surgeon removed the diseased bowel and reconnected down 

Happy 3rd Birthday!.. #56

We celebrated Isaac's 3rd birthday on Sunday October 5th. He picked the Ninja Turtle theme :) Just like the 2 years past, the weather was in the 70's. Not bad for October in the Pacific Northwest. :) A few pictures below..