End of summer check in.. #49

The summer has been great to us. We have spent a lot of time swimming and doing yard work in our yard. After starting chiropractic care for Isaac things did 180 degree turn. For the better. He now has normal bowel habits. He is completely off the senna and we are seeing his surgeon every 3 months instead of multiple times a month or monthly. We made it over that hump! I believe whole heartedly chiropractic care was the missing piece to our puzzle. Another great doctor to add to our team.

In February we are going to Disneyland!! 15 of us. My side of the family has planned a big family vacation and we couldn't be more excited. This will be our first big family vacation. Planning for that has already started. It is leaving me so excited but so anxious because February in the past has been a bad month for us. Just with all the viruses going around. We spent a few days in the hospital last February with a stomach virus. Really hoping we can be 100% healthy so we can enjoy our vacation. But we will probably have to talk to our surgeon about worst case scenario options for when we are in California. It's really hard being a parent with a special medical needs child sometimes because you always have to plan and think worse case scenario. Which means I will need to get hospital names and drs there. In case we have an issue arise. It has limited us as far as going on vacations because I guess we have always been worried about the what if. Which is not good. I really hope we can stay healthy and go enjoy this vacation :)

I just wanted to give a brief update and let everyone know we are doing well!! I hope to write again soon.. Before Isaac's 3rd birthday. Yep, he will be THREE.. 3.. THREE in 2 short months. Where has the time gone?!? I can't believe my baby will be 3.

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

Up down up down.. #45

January (my last update) and February seemed to be our sick months. Isaac had that viral thing that landed us in the hospital, then had a cold, then another cold with his first ear infection. Needless to say, we are looking forward to the summer. Hopefully all the sickies are behind us because I feel like we have been cooped up for weeks. I was down for a few days because I caught his cold. I haven't been sick in 5+ years!! Somehow daddy and I have managed to avoid all the colds and viruses. My first time being sick as a parent. Luckily I was only sick for 2 days.

We have continued to see Isaac's surgeon monthly to monitor his pooping. Things have been up and down, up and down. The x-rays have been all over the place.. good, not so good, ehh, lots of stool, ok, excellent, and anywhere in between. Largely in part because of him being sick on and off. It seems like whenever we get a good streak going he gets sick and then it messes everything up. We have had to hold the senna when he gets sick because it has caused some bouts of stomach upset. I didn't want to exasperate the issue with giving him senna on top of a sour stomach. We were having trouble getting him to drink the senna tea. It was getting hard to mix in with a smoothie because it would yield at least 8 oz mixed and trying to get a toddler to drink 8 oz in one sitting rarely happens. And that was causing some back up because he was not getting the full 3 oz dosing of the tea he needed. We decided about a month ago to start the senna medication. He only gets 2.5 ml's (1/2 teaspoon) a day. And it is such a minimal amount it does not throw off the taste of a smoothie or even a little juice. Makes it much easier to get him to drink. I can mix it in with 2 oz of a smoothie and he doesn't even notice. No more stressing about him drinking an 8 oz smoothie. He has tolerated it well. No complaints of stomach pain. Sometimes it can cause cramping for kids but he has seemed pretty solid on it. We haven't experienced any adverse issues. Which makes this easier. I was so concerned about giving him a daily "medication" but actually it has dimished my stress. I know he is pooping (a lot) and that's really what matters.

We continue to take him to the nutritional practitioner. He graduated off the 2 supplements she had him on before. Hooray!! They did their job and now at this point he doesn't need them. She did give us a new supplement called IBD Chord which I will talk about below. When he was in the hospital in January with a viral illness it caused some inflammation in his colon. This supplement helps decrease that and helps get things back to normal. She also had an alternative to using the senna medication which was an herbal supplement in capsule form. Which we were to open the capsule and mix it in with a drink or smoothie. I tried so many different things but because of it's strong herbal properties, I could not mask the taste. Isaac could taste it through anything and would not drink it.  Maybe if in the future he still needs help, we can revisit that option when he is older and understands. I will talk about it briefly below just in case it could help someone else.

I am hoping that the next x-ray will show progress. It is very stressful worrying about your child daily. I am really hoping for better days in the future. Right now we are just taking it day by day. I always remind myself this is just minor in reflection to what other families are dealing with. And for that, we are blessed.

Supplement info:

IBD Chord
IBD-Chord is a distinctive, complex blend of specific homeopathics combined to address the common causal factors behind Inflammatory Bowel Disease.

Colon Clear capsules
Colon Clear combines several wildcrafted botanicals traditionally known to alleviate bloating, pressure, occasional constipation, and overall support for normal bowel function.

First update of 2014.. #42

Can't believe we are already into 2014. Time just seems to fly right by us. In my previous post I had talked about some issues we were having with our surgeon wanting things to be moving along faster on the poop front. After our last appointment (December) we decided to consult again with the nutritional practitioner we had taken Isaac to earlier last month. She told us to increase his dosage on the supplements she put him on and instead of using senna medication to use smooth move tea. Which is senna but in the natural leaf form. We did that for a little under a month.

Yesterday (9th) we had our recheck with the surgeon and another xray. And the xray was excellent this time. He had no stool on the left side of his colon. It was completely empty. He did have some stool in the ascending/transverse (right side) colon but like I said none in the descending or sigmoid (left side) colon. Which is never a big deal (stool on the right), just means things are moving on down. So needless to say our regimen is working. We are continuing 3 oz of smooth move tea every other day along with his daily supplements his NP (nutritional practitioner) prescribed. I found that doing the tea everyday is too much for him. Every other day seems to be the key. Our surgeon wants us to continue this for another month.. We have a recheck in February.

One less stresser for us. I am so pleased with the results we are seeing. We will see our NP probably this month for our second appt. She has been a great asset to Isaac's healthcare team. 2014 has started out really great for our family. I feel so blessed!!

Will keep you all updated.. :)

Super long update.. #40

It has been months since I have updated. The summer flew right by us! I didn't even update with pictures of Isaac's SECOND birthday. That will be in my next post. :) I feel like we have had so many appointments since I updated last, we added a new practitioner to Isaac's team - which I will touch on in the following paragraphs. We continue to see his GI and pediatric surgeon regularly. We have been seeing his surgeon more over the last couple months because Isaac started complaining that his tummy was hurting. This was in late October. So we decided to make an appointment with his surgeon to make sure nothing was going on. Well she saw a little more stool on his abdominal xray than she would of liked. She suggested doing some chia seeds daily to see if that would help move things along more. After a month of doing those we had a follow up appointment and within that time frame things did not change on his xray. So she suggested we add some Senna. I was so hesitant to start something like a stimulant laxative so I took the recommendation of few moms I know, and took him to see a holistic nutritional practitioner. She gave us 2 supplements to start with him but did tell us that we would need to do a round of them before we saw much of a difference.. Which would be between a month and a month and a half. So far we are 10 days in and I feel like I have seen some improvements. However, we had another follow up with Isaac's surgeon and the xray still showed his colon was full of stool. Right now we are at such a crossroads that we don't know what to do. We don't know if this is just normal toddler things, or if this is an issue arising from his Hirschsprung's. Our surgeon again recommended we tried the Senna for a short term. Hoping to get him cleaned out and reset his bowel.. And then hopefully be able to take him off of it. I placed a call into our new practitioner we are seeing, hoping to hear from her tomorrow before we go ahead on the Senna. It is so hard, I struggle everyday worrying about if I am making the right decision for my child. I worry about giving him Senna. I worry about not giving him Senna. And then him getting so backed up that his colon gets impacted or it causes some other issue. I want to get him bowel back working correctly but how do we do that? Will it be combination of a natural approach and the intense medical side approach? I believe you have to have a good balance of both worlds. I am hoping to get as much information as I can in the following days. But I can say one thing, I AM SO GLAD WE ARE NOT IN THE HOSPITAL THIS YEAR AROUND THIS TIME. Both years prior we were admitted into the hospital and spent 5 days there.. Barely getting out before Christmas.

We are expecting some snow tonight.. They said it would roll in about 12 midnight.. It's 12:48 so I better take a look to see if we have any yet. We didn't get any snow last year.. So this year better be good!!! This year we are all ready for Christmas. I am so happy! We got all our shopping and crafting done. I am having a date with on of my best friends on Saturday to run some last minute errands and pick up the last few small gifts. I am so excited to be able to enjoy the holidays this year.

 I am still stressed about what is going on with Isaac, but I feel like we have a huge network of people that will help get us over this. I just have to stay positive and always seek the best answer for my son. A lot of people don't understand what it's like being a parent of a HD child. If you read another HD blog, our stories are very similar, but some kids do have it harder. Each journey is different, but in the small scheme of things, it is all the same. I still have yet to meet another HD family on our area. Which makes it hard because no one really understands what we go through everyday. People don't understand why we have to eat a certain way, or why he can't have certain things - like juice or bananas. It is so tiresome trying to explain over and over and over again why we can't do this or do that, or can't eat that or eat this. Or why we label read. Or why we only eat organic. People just think it's an easy fix. Hirschsprung's is a LIFE LONG condition. Just because he had surgery does not mean his condition is fixed or cured. So sometimes I feel like we are alone in this. I just wish for once I could sit down with a mom of an HD child and talk over food. It really is lonely out here.. I would also like Isaac to have some HD friends. So he can relate to someone when he is old enough to understand. Sure it's hard going to parties or eat out of our home when other kids or adults are eating things he can't. That's why we hardly go out to dinner or eat at others houses. I take him to a tot class during the week and they do a snack. They give apple juice to the kids, and my kid is the kid who gets water. I hate having to bring his water out and him see look at the other kids and then look at me like why can't I have juice. We do some juice occasionally at home, but definitely not apple juice. That really upsets his stomach. I am already thinking about when he is older about how people will interpret his condition and react to it. I don't want his dietary restrictions to make him an outcast. If that makes sense? I already hear crap from my own family members about his diet, what will non family members say? Maybe I am over thinking it.. I don't know. We have also made some other dietary adjustments after seeing the nutritional practitioner which includes NO GMO's, no high fructose corn syrup, or any yellow corn products. All these things can cause a disruption and inflammation in his gut.

On another note, our Seahawks are doing amazing!!! I am positive we will be heading to the super bowl. We love watching the games every week. And Isaac is a huge fan already. His entire room is done in the Seahawks. We have even taken him to a few autograph signings and he loved it. Needless to say, he asked for a helmet and jersey for Christmas. :) And all he wants to wear is Seahawks gear. His favorite players are Russell Wilson and Richard Sherman. So proud!! We are big football fans in our house.

Last year Santa didn't go over too well, so this year I figured it would not be any better. But boy did he surprise me!!! He talked to Santa, sat on his lap, and told him what he wanted (a seahawks helmet and jersey) and then gave him a high five. I still had to be in the picture, just within arms reach. I was so proud of him. We should be getting the pictures soon, so I will post then.

So all in all, I think things are going well for the most part. I will be updating in the next couple days on the situation that is going on. I hope to have some answers soon. In case I don't make it on before Christmas, MERRY CHRISTMAS!!! Thank you all for following Isaac's journey.