Sunday, March 16, 2014

Yesterday was another down day.. #47

Saturday around 3 am Isaac woke up and vomited all over our bed. We put him in the bath, washed him up, and snuggled on the couch for a little bit. He ended up throwing up once more before falling back to sleep. When he woke up he was acting totally fine. He insisted that dada and I get up right away so we could play. Throughout the day he seemed 100% normal. He ate fine, drank fine, played fine, nothing seemed out of the ordinary.

Around 3:30pm he started complaining about his stomach hurting. Then the diarrhea started. Red flag! So he asked to take a bath. We decided to call his surgeon and see if there was anything we should be watching for. You know that extra reassurance this was just a viral thing and it will pass as soon as it came on. By the time we hung up with the surgeon and got him out of the tub we could tell him upper abdomen was rock hard and he sort of had a lump on the upper left side. At this point I was really concerned. We called the surgeon back and he said to bring him in. Luckily, it was one of the surgeons who has treated Isaac before and we absolutely trust.

The ER doctor did an exam, we had an x-ray, and they started him on an IV. They also drew labs. One of the PA's from the surgical team came down to access Isaac herself. After reviewing the x-ray the surgeon came down. He said he was a little concerned. I hate hearing those words. But I kind of already knew that something was going on. He told us the x-ray was not good. He said it could be 1 of 3 things...

 1. A large bowel obstruction (um what)
2. Enterocolitis (fabulous)
3. Colitis - like viral gastroenteritis

I was hoping it was number 3. Obviously. I knew that when I saw him that something was not good. Usually when surgery comes down it's like the oh sh@t factor. He told us he wanted to do his own exam and do an irrigation because that would tell him more about what this was. The irrigation went fine. He said he didn't feel any resistance while doing it which meant it was not an obstruction.  Hallelujah.  And since it wasn't explosive he was pretty sure it wasn't enterocolitis. Hallelujah x 2. He did want to admit us though for observation. And that would give them a chance to get the labs results back too. So we waited for our transport upstairs. Another hospital stay. The second one in less than 2 months.

We got up to our room around 9pm. I think. I can't even remember. The night was uneventful.  He got to eat. We watched cartoons and played with some toys. The labs came back normal. His inflammation marker was not elevated which confirmed he did not have enterocolitis. That pretty much left only one option.. Viral illness. Which was the best news. The only news I was willing to accept.

They woke up early this AM. Around 6am. The nurse told us we needed to get him to x-ray because the surgeon would be in the OR all day and wouldn't be able to read the x-ray until after 4pm and if it had improved he wanted to get us home asap.

The x-ray had improved drastically. The issues from not even 12 hrs prior had resolved. The surgeon came by and just did one last exam. And said we could go home.
Just another bump in this long road.. But hopeful of better days. ♡

Friday, March 7, 2014

He is my superhero.. #46

It takes a brave child to fight Hirschsprung's Disease.. Or any chronic, lifelong disease. Cancer. Autoimmune diseases. Crohn's. Cystic Fibrosis. Congenital Heart Defects. Any of them.
He is my superhero.. ♡ I love you Sweet Baby Isaac.

Wednesday, March 5, 2014

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.

Wednesday, January 22, 2014

It wouldn't be normal if we didn't have a hospital stay during this time of the year!!.. #44

I waited to post this until after I got my previous post up about how we are managing HD naturally. Last week Isaac had a short hospital admit. Blah. He was running a small fever last Sunday which went away within a few hours. But by Tuesday his stomach was making that awful grumble HD parents do not like. Then he was complaining about his stomach hurting. You could tell he was in pain. Soooo we packed up and went into the ER.

Earlier that day his surgeon saw him in the clinic and nothing showed up on xray. He had been complaining about his stomach briefly in the AM so I figured he should be looked at. Within a matter of hours the xray had drastically changed!! Happens super fast with HD kids. The xray they took in the ER showed he had inflammation in his colon. Not cool!!! The surgeon reviewed it and decided to admit us for observation.

We had to wait over 5 hrs in the ER room because the hospital was so busy. Luckily Isaac had fallen asleep so when IV therapy came by to put his IV in they had everything prepped and ready. Of course he woke up when they put the IV in. I was heartbroken for him but it was almost better he was asleep. Last time it took an hour to get a line in because he was so upset and fighting. There is nothing worse than watching your child in that state of pain and panic.

We stayed 2 nights. He was only on NPO for less than 12 hrs. NPO means he can't eat or drink. He slept mostly but I knew he wasn't feel too bad. Just didn't want to be there.

The diagnosis was viral. Nothing that held him down too long. Things are on the up and up. Glad we breezed by this one.

Tuesday, January 21, 2014

Managing Hirschsprung's Disease naturally.. #43

This post has been long overdue! But this journey has been really difficult because there is not a standard plan of care to follow for HD kids. There is still a lot of unknown about Hirschsprung's. More often than not, the parents know what is best for their kids and what works or doesn't work for their kid. Over the past couple months we have really dug into the "alternative" and "holistic" care network. I have always been into natural parenting, natural remedies, organic products, etc but there isn't much out there in terms of the natural approach for kids with HD. I am going to explain what we have done and what we are currently using in managing my sons HD. 

First off, if you haven't read our entire story or know us, here is a little background. My son was born full term, natural childbirth. I had exceptional OB care during my pregnancy and on NONE of the ultrasounds did we see anything wrong. When he was 2 days old he was transferred from the postpartum floor to the NICU due to him not eating, having abdominal distention, and throwing up green bile. He did not have a colostomy. Instead he had his bowel resection (pull through) when he was 6 days old. He only had 5 cm's (2 inches) of his colon removed. He has what is considered Short Segment Hirschsprung's Disease or SSHD for short. His surgeon did the Swenson method. His recovery was fast and normal. He had no issues with weigh gain. He did have food allergies and he was fed a soy, dairy, gluten, nut, oat, free diet until he had his allergy testing at 2 years old. He was  put on a medical grade formula called Elecare when he was 2 months old. His HD case has always been pretty straight forward. 

Now to talk about the supplements we have him on... 

We took Isaac to see a holistic nutritional practitioner who does a technique called applied kinesiology. Most people have never heard of this, and there is not a lot of "science" to back this technique up. Some people say it is quack work, but I know from personal experience, this does work. And this IS working for MY SON. Our practitioner was able to read things off Isaac that we did not even tell her about. She knew what things in his diet were bothering his stomach. Before we began the supplements she prescribed him based on what she read off his testing, he was having issues with his colon not emptying fast enough. Which our surgeon was concerned about, obviously HD parents know why. She was worried about his colon getting stretched out, not functioning properly, and also him getting constipated. We did a series of xrays in a certain time frame. We tried chia seeds, dietary changes, all to no avail. Our surgeon then wanted to put him on senna. That is when we consulted with the nutritional practitioner. She did some muscle testing on him, based on her findings she put him on 2 supplements to start healing his gut. After a month under the supplements from the nutritional practitioner, everything changed for him. We cut out high fructose corn syrup and any corn products. GMO's are a BIG no no for HD kids. GMO's inflame normal peoples intestines, imagine how much worse this would affect an HD kid. If you do give your HD kiddo yellow corn, or corn products, MAKE SURE IT IS ORGANIC or to be safe do white corn. BE very conscious about these products in our foods. The supplements she put him on are.. 

Lymph-Tone 1
Which helps the lymphatic system and aid in digestion and excreting toxins from the body. Lymph-Tone 1 is designed to assist in the beginning stages of blockages where the body can begin to react due to insufficient resources to successfully excrete toxins. This basically is to help the digestive system move things along in a timely manner. 

Para-Chord 
Para-Chord was formulated to help with intestinal parasites, dysbiosis, constipation or diarrhea. Dysbiosis  refers to a condition with microbial imbalances on or inside the body. Dysbiosis is most prominent in the digestive tract or on the skin, but can also occur on any exposed surface or mucous membrane such as lungs, mouth, nose, sinuses, ears, nails, or eyes. It has been associated with different illnesses, such as  inflammatory bowel disease, as imbalances in the intestinal microbiome may be associated with bowel inflammation.

For more information on the ENERGTIX supplements we use, visit their website at  
www.goenergetix.com

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I am also BIG on Essential Oils. We use a line called doTERRA. We specifically use the essential oil blend called DigestZen. 

 


DigestZen is one of the doTerra Blends that is considered an effective metabolic
blend. This is major active relief in a bottle. Dr. Hill’s experience with patients and his research has concluded that most gastrointestinal disorders are secondary to inflammation from bacteria, viruses, parasites and other microbes and a lack of good nutrition. Antibacterial, anti-inflammatory, anti-micorbial, anti-nausea, anti-parasitic, anti-spasmodic, soothes hangover symptoms (alcohol, sugar, carbohydrate or meat protein), soothes and subdues acid reflux,stimulates repair of damaged tissues of the digestive system, been credited with reducing polyps in the intestinal tract.

Ingredients:
Ginger:
anti-spasm and anti-nausea, dissolves old mucus, warming and comforting, can inspire courage, excellent digestive aid; warming to tissues and organs, uplifting and motivating of spirit. Excellent for Rheumatic Fever recovery.

Peppermint:
It relaxes the smooth muscles of the intestinal tract and promotes peristalsis. Soothing and cooling for the whole body. Kills bacteria, parasites,yeasts, fungi and mold. Known to help relieve distress from food poisoning, vomiting, diarrhea, constipation, flatulence, halitosis, colic, nausea, and motion sickness. Enhances bile processing. And reduces heat of fever so body can deal with restoring healing with less discomfort.

Tarragon:
Antiseptic and combats intestinal parasites and urinary tract infections; anti-infectious, prevents fermentation in the intestinal tract, assists absorption of B Complex vitamins in intestinal tract. Anti- microbial, reduces muscle spasms, is great in helping to relieve urinary tract infections.

Coriander:
Is soothing to the Pancreas and the Gall Bladder, besides assisting in processing of nutrients; anti-inflammatory, anti-spasmodic, and motivates good oxygenation. Increases action of basic digestive enzymes so nutrients can be absorbed to create healthy new cells.

Fennel:
Helps to improve digestion by supporting the liver. It may also help balance hormones.

Caraway:
Subdues acid reflux, anti-inflammatory, antidepressant, anti-parasitic. Good relief of gas and pain of colic.

Anice:
Calms and strengthens the digestive system, calms the sphincters ,balances acid and supports creating an environment for healthy digestion.

Protocols:
DigestZen on the wrists for indigestion.

DigestZen around the core of the stomach and on the wrists for nausea, severe indigestion, vomiting, diarrhea, cramping, food poisoning, acid reflux, esophageal burning, gas, bloating, colic (tiny baby on bottom of feet).

DigestZen ingested prior to each meal will assist in good digestion and depress
Candida overgrowth in the stomach, discourage mold circulation, calm acidic food
reaction, and assist in eliminating parasites, will reduce acid and inflammation of tissues it comes in contact with to allow system to return to natural state of excellent good health.

DigestZen applied on the forehead will help relieve cold and sinus infection congestion, applied along the nose and on the cheeks can relieve more congestion.

DigestZen applied to the reflex points on the bottoms of the feet and hands can assist people getting off of over the counter anti-acid medications. Will stimulate great digestion and assist in absorption of nutrients from food

DigestZen applied around the core of the stomach can relieve seasonal allergies.

DigestZen applied around the core of the stomach and on the low back for low back pain (and when the pain is relieved or lessened while in motion) can indicate that long term constipation can be relieved with consistent use and increase in water intake and walking for minimum of 20 minutes each day at a steady pace (not fast just steady and consistently).

DigestZen: 1 drop added to warm water makes a great soothing cup of tea when recovering from flu or during lots of travel stops to help body get back in balance.

DigestZen 3 drops, Melissa 2 drops, Lavender 2 drops, Oregano 2 drops in a capsule 2 times a day suggested upon return from a recently flooded zone (hurricane or flood where mold could have sprung up or after tornado destruction–like in Joplin,Missouri)...to eliminate molds that might have been
breathed or eaten from the air.

Ulcer:
Dr. Hill recommends DigestZen, Oregano and Lemongrass in capsules 3-4 times a day to heal ulcer and balance H-Pylori that may have been cause.

Colitis:
DigestZen 3 drops, Lavender 2 drops, Melaleuca 2 drops

Headaches:
For headaches associated with flu, cold, cough or sinus issues apply DigestZen to bottoms of feet, especially the big toe and the bones behind the ear (may dilute with coconut oil if very sensitive skin) on the headache points on the hands and wrists. 

Candida:
Sometimes when applying DigestZen on the core for the first couple of times in people who are new to oils a little rash may appear on the stomach, which is just Candida that was already present in the system, that the wonderful pure oils released thru the skin. Discontinue use on the tummy area and just ingest or apply
to the bottoms of the feet.

Menstral Cycle Cramping and constipation: 
DigestZen 3 drops, Whisper 3 drops, Marjoram 3 drops rub on the stomach area of cramping as needed before sleep in anticipation of relief

DigestZen can be used in suppositories with virgin coconut oil in ratio of 20 drops of DigestZen with 1 tablespoon of virgin coconut oil to sooth vomiting and intestinal distress.

DigestZen may be used in a retention enema for ridding the colon of parasites and Digestive Candida.

Rheumatic Fever: DigestZen applied to chest after diluted 4-5 times a day. Avoid dairy products and white sugar during recovery.

Morning Sickness: Dilute with coconut oil and massage into tissue of the outer ear gently, and drink plenty of water. 

Caution: Not for use by people diagnosed with epilepsy.

This information was taken off the doTERRA website and PLEASE CONSULT a physician before attempting any of these techniques. I am NOT a medical doctor, I use just alternative medicine techniques for my son. I use the DigestZen blend on the core of his stomach to help with any of the listed about GI issues that it helps - cramping, upset stomach, constipation, etc. I dilute 1 drop of the oil with 1 tablespoon coconut oil. I massage his it onto his stomach clockwise at bedtime or when he is complaining of stomach pain. You can also rub it on the bottom of their feet. We do not ingest oils.

For more info on doTERRA's essential oils, their website is: 
www.doterra.com/us
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Smooth Move senna tea 
Lastly, we use a regiment of a senna tea instead of using the medication senna. The senna tea is called Smooth Move. For gentle, relief, it gets the “movement” moving again. Senna works by gently stimulating your intestines and aiding your body’s natural elimination process. It is combined with fennel, coriander and ginger to reduce the potential for unpleasant feelings like cramping. The traditional senna medication can cause cramping, nausea, upset stomach. However, the senna tea is from a natural plant that is combined with other herbs to avoid all the harsh side effects. 
 

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Chia Seeds 
We also do chia seeds daily. We add 1 or 2 tsp in a smoothie. They blend down nicely and he doesn't even know they are in there. You can use chia seeds in other recipes too. Some people do a chia pudding or add it to yogurt. I haven't tried that yet. We use the Bob's Red Mill organic brand but any brand would probably be ok. 

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As for the dosage on our all supplements, it is based of weight and age. My son is 2 yrs old (27 months) and weighs close to 33 pounds. Each supplement is as follows:

*Lymph-Tone 1 - 2x daily - 15 drops AM and 15 drops PM
*Para-Chord - 2x daily -15 drops AM and 15 drops PM
*doTERRA DigestZen - used as needed topically on the core of the stomach and/or feet - 1 drop to 1 tablespoon coconut oil. 
*Smooth Move senna tea - 3 oz every other day added into a smoothie. Standard adult dosing is 8 oz daily. You may have to do trial and error to see what works best for your kiddo. 
*Chia seeds - 2 tsp daily in a smoothie.

If you have any questions or would like some more info, please email me. Again, I am NOT a licensed medical practitioner. My son is under the care of 5 practitioners that guide me in dosing and usage of these products. Each HD child is so different, so what may work for my son, may not work for yours! :) 

Friday, December 20, 2013

Pictures from Isaac's 2nd Birthday.. (October).. #41






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.