I just wanted to make a quick update in regards to our most recent scope. We went in Tuesday morning last week and all went well. There is just so much involved for a 15 minute procedure, not to mention the toll it takes on the kidos.
One of my biggest pet peaves while pre-registering and having Jason get prepped by the nurse was all of the negative comments, unintentionally of course. "Oh, poor kid, what does he eat." "Oh, how terrible." Etc. Well, I hear this and think that he's most likely hearing it as well and it just puts thoughts into his head. He really only needs to hear the good stuff, really. They shouldn't be saying all of those things out loud! They should stick to "Oh, he's such a cute kid." You know?!
We are very appreciative and grateful that the scope was clear! Jason took some awesome photos of his esophagus and he is very happy. The biopsies confirmed that all was clear.
Now, we continue on the Flovent steroids and the same diet, everything "as is" for at least six months. We'll revisit with the GI at that time and decide what to do. Of course, we're all thinking the next step is to reduce or eliminate the medications. And only then can we focus on that diet.
Our intentions are to use this six months to continue the EFT and focus on all of those supposed allergies, along with the enzymes and probiotics. And by that next appointment when they say to get rid of the Flovent, we go ahead and do that, and he has no symptoms. And then maybe we'll rescope and see that he's still clear even without the steroids. And then we'll do allergy testing and simply astound the Allergist when he sees that Jason is no longer allergic to the approximately 50 items from the previous testing. And then we'll be on our way to eating more foods. And we'll rejoice!
Here's to the next six months!
Sunday, May 24, 2009
Saturday, May 16, 2009
Hi Doc, I'm still fine! Let me prove it to you!
We went in for yet another regular GI visit. The labs showed this time that his iron and hemaglobin levels have increased! Almost, but not quite to normal. This is the best they've been. And he's been off the Cimetidine/Tagamet for 2 months. So, geez, maybe I was right about the meds being part of the problem, not the solution? He's had zero issues without those meds. We did also start giving iron along with Vitamin C at the same time, which could have helped with absorption as well. Or perhaps it was all the EFT tapping I did on Jason's behalf in regards to his body absorbing iron. There is no way to know for sure, but we will continue on with the iron, EFT, digestive enzymes and no reflux meds.
We'll be doing a scope next week to see for ourselves that all looks well. It's hard to hold him back from getting well because we don't have the doctor's orders or a photograph of the esophagus to prove to us how he already feels. If you feel good and focus on health and feel good and happy most of the time, then good health is your natural birthright. It's only when doctors and other specialists keep wanting to talk to us about how things are incurable or that we will have to deal with this forever that we block the perfect health and wellness that is our right.
We'll be doing a scope next week to see for ourselves that all looks well. It's hard to hold him back from getting well because we don't have the doctor's orders or a photograph of the esophagus to prove to us how he already feels. If you feel good and focus on health and feel good and happy most of the time, then good health is your natural birthright. It's only when doctors and other specialists keep wanting to talk to us about how things are incurable or that we will have to deal with this forever that we block the perfect health and wellness that is our right.
Thursday, February 26, 2009
February GI Visit - All is good
We went to visit the GI again today.... just the usual "I feel fine, why do I have to always come see you?" kind of visit! Jason did just come down with his first ear infection at age 5 and is on antibiotics for that, but otherwise, he's doing fine.
We talked to his GI about the newly introduced digestive enzymes, and she was supportive of that. She said they certainly wouldn't hurt anything, especially if they're just your regular non-prescription enzymes. She also supports the probiotics we introduced last summer. As well, she's good with us trying to find better vitamin and mineral supplements that are hypoallergenic.
Iron is still borderline almost normal, but not quite. That seems to be the case. So I asked her, being a Mom who reads up on things and has questions of my own, if we could take out the Cimetidine since it can cause absorption issues, especially with iron. She was all for that, so we'll take it out of his diet and see how he does. We're totally expecting him to be fine since they never made an improvement when they were first introduced 2.5 years ago! Perhaps that will help with his iron absorption. The other thing we were told to do to help with the iron is to give it with about 60 mg of Vitamin C per 0.6 ml of the ferrous sulfate. Crossing our fingers that this all works and then we can at least eliminate an unnecessary drug and the iron supplements. That would mean we'd be down to the Zyrtec and the Flovent along with regular enzymes, probiotics and vitamins/minerals. Oh yeah, and that peky restricted diet.
No scope until the summer if all goes well with the removal of the Cimetidine. And I doubt we'll revisit with the allergist until after the next scope, so that means we wouldn't be re-introducing foods into his diet any time soon.
That's the hardest part for us (me), is wondering how he's doing on the inside. He looks and feels great on the outside! I guess I should not get ahead of myself. But instead be super grateful (and I am SUPER grateful) that he feels great every day and is growing and thriving just perfectly. And when the time is right, we'll add some foods back into his diet. He's managing pretty darned good considering what he's not currently eating!
We are also continuing EFT treatment to help improve health, remove allergies, and let go of any underlying issues that might be contributing to this condition. For example, the other day I said that we want to get rid of some of his medicines... he said "I don't want to get rid of my Flovent spray!!!" Why??? Only he can really know. Perhaps it makes him feel important, special, or something. Yet, he's been asking a lot to eat chicken and other things. So hopefully he'll realize that eating chicken, etc. is more fun than having an inhaler!
And onward we continue!
We talked to his GI about the newly introduced digestive enzymes, and she was supportive of that. She said they certainly wouldn't hurt anything, especially if they're just your regular non-prescription enzymes. She also supports the probiotics we introduced last summer. As well, she's good with us trying to find better vitamin and mineral supplements that are hypoallergenic.
Iron is still borderline almost normal, but not quite. That seems to be the case. So I asked her, being a Mom who reads up on things and has questions of my own, if we could take out the Cimetidine since it can cause absorption issues, especially with iron. She was all for that, so we'll take it out of his diet and see how he does. We're totally expecting him to be fine since they never made an improvement when they were first introduced 2.5 years ago! Perhaps that will help with his iron absorption. The other thing we were told to do to help with the iron is to give it with about 60 mg of Vitamin C per 0.6 ml of the ferrous sulfate. Crossing our fingers that this all works and then we can at least eliminate an unnecessary drug and the iron supplements. That would mean we'd be down to the Zyrtec and the Flovent along with regular enzymes, probiotics and vitamins/minerals. Oh yeah, and that peky restricted diet.
No scope until the summer if all goes well with the removal of the Cimetidine. And I doubt we'll revisit with the allergist until after the next scope, so that means we wouldn't be re-introducing foods into his diet any time soon.
That's the hardest part for us (me), is wondering how he's doing on the inside. He looks and feels great on the outside! I guess I should not get ahead of myself. But instead be super grateful (and I am SUPER grateful) that he feels great every day and is growing and thriving just perfectly. And when the time is right, we'll add some foods back into his diet. He's managing pretty darned good considering what he's not currently eating!
We are also continuing EFT treatment to help improve health, remove allergies, and let go of any underlying issues that might be contributing to this condition. For example, the other day I said that we want to get rid of some of his medicines... he said "I don't want to get rid of my Flovent spray!!!" Why??? Only he can really know. Perhaps it makes him feel important, special, or something. Yet, he's been asking a lot to eat chicken and other things. So hopefully he'll realize that eating chicken, etc. is more fun than having an inhaler!
And onward we continue!
Saturday, December 20, 2008
Complimentary Treatments
Based on the research and reading I've been doing of late, I'm deciding to break out and try some alternative things with Jason.
The first thing we've just begun is EFT (Emotional Freedom Technique) which is tapping of the meridian points of the body to help balance his energy to help him heal. I've been using it on myself and am quite amazed by the little things I've seen already. I've made some new friends in the world of EFT, and one in particular has been wonderful enough to get me started in the right direction. Coincidentally, she has a child who's been through a very similar experience to Jason's and he's now a thriving teenager. I have nothing to lose and only everything to gain, so I'm going with it!
The other things I'm planning on doing is introducing digestive enzymes and weaning him from his Cimetidine (Tagamet). Long long ago, Jason was put on Zantac to see if that would make the vomitting stop. It didn't. Neither did the swallowed steroids given at that time. The only thing that made a difference was changing his diet. Some time later he was switched to Cimetidine (from the Zantac) and then I had even asked if he could stop taking it because it doesn't seem to make a difference anyway. I was told "just have him keep taking it... it won't hurt anything." Well, I'm now thinking that it might be hindering some things indeed. It's been known to cause certain vitamins/minerals to not be absorbed as well as they should, iron being one of them. Hmmmm... that's funny because Jason always tests low for iron and has been on an iron supplement for a very long time. He's always just under the cut-off to normal. I wonder if weaning him off the unnecessary Cimetidine would help improve the iron issue as well. In addition to that, I would like to introduce him to digestive enzymes. Another new friend had recommended this option. So I researched it like crazy and it sounds like it would be very beneficial to Jason's health. One very helpful website I found was http://www.enzymestuff.com/ . I am going to make my purchase and call the GI to keep her informed that this is what we want to do. I only hope she agrees without giving me any issue about it. I'll have to keep you posted.
Until then! We'll be busy enjoying the holidays and not thinking about all this crazy health stuff!
The first thing we've just begun is EFT (Emotional Freedom Technique) which is tapping of the meridian points of the body to help balance his energy to help him heal. I've been using it on myself and am quite amazed by the little things I've seen already. I've made some new friends in the world of EFT, and one in particular has been wonderful enough to get me started in the right direction. Coincidentally, she has a child who's been through a very similar experience to Jason's and he's now a thriving teenager. I have nothing to lose and only everything to gain, so I'm going with it!
The other things I'm planning on doing is introducing digestive enzymes and weaning him from his Cimetidine (Tagamet). Long long ago, Jason was put on Zantac to see if that would make the vomitting stop. It didn't. Neither did the swallowed steroids given at that time. The only thing that made a difference was changing his diet. Some time later he was switched to Cimetidine (from the Zantac) and then I had even asked if he could stop taking it because it doesn't seem to make a difference anyway. I was told "just have him keep taking it... it won't hurt anything." Well, I'm now thinking that it might be hindering some things indeed. It's been known to cause certain vitamins/minerals to not be absorbed as well as they should, iron being one of them. Hmmmm... that's funny because Jason always tests low for iron and has been on an iron supplement for a very long time. He's always just under the cut-off to normal. I wonder if weaning him off the unnecessary Cimetidine would help improve the iron issue as well. In addition to that, I would like to introduce him to digestive enzymes. Another new friend had recommended this option. So I researched it like crazy and it sounds like it would be very beneficial to Jason's health. One very helpful website I found was http://www.enzymestuff.com/ . I am going to make my purchase and call the GI to keep her informed that this is what we want to do. I only hope she agrees without giving me any issue about it. I'll have to keep you posted.
Until then! We'll be busy enjoying the holidays and not thinking about all this crazy health stuff!
November & December 2008 Appointments
I just thought I should check in and let everyone know what we're doing these days, or not doing. Mostly, we're just getting ready for Christmas and the kids are so excited!
In regards to Jason... we went to visit the GI doctor in November. Jason wanted to know "why am I going to the doctor if I'm not sick?" Good question kiddo! "Just to say hello to the doctor and to let her know we're doing great." So, we popped in for a regular follow-up visit and a lab slip to get the usual blood check. While we were there, she gave us a couple sample boxes of EO28 Splash, a fruit flavored formula to help supplement the diet of those who can't a great deal of things. Jason was so excited to try them. With both flavors he said "I really like this" with that contradictory facial expression. And by the third sip or so, he admitted he didn't like it at all. At least he tried. I think the GI was just wanting to help find ways to get more nutrition into Jason's diet, not that he's having any issues growing or staying healthy.
Then, earlier this month we visited the nutritionist in the same office. The GI said the nutritionist would be able to help us make sure that Jason is meeting his nutritional needs and help find alternative foods and supplements. Well, let me just say, that was a wasted appointment. I was told I needed to bring Jason along, who just sat there bored the entire time until he stated that he wanted to leave, which he has never done at any appointment, ever. And instead of learning about how much of the various nutrients Jason needs, she played doctor and was telling us that we shouldn't be feeding him the foods that the Allergist approved, and that this is an uphill battle, that it's a lifelong thing, that he'll never heal and get better if we don't remove him from food, blah blah blah. I got pretty upset by the end of the appointment and wanted to leave quickly as well! Oh, she did tell me that he needs to get 800mg a day of Calcium. Geez, I could have found that on the internet. And she gave me a handful of alternative food sources such as seaweed... Yeah, well, I tried sweet potatoes the other day and he wouldn't eat them. Not only is his diet currently restricted, but he's being picky as well. The nutritionist gave us a can of Neocate to add to smoothies which is something I plan to try.
Anyway, I had to call the GI and talk to her because I was totally confused at this point. Am I doing him more harm than good? The GI told me to follow the instructions of the Allergist and her and that Jason will be fine, as he was in the past with their treatments. So, I felt a bit better, but I'm not one to just sit and wait for things to happen. She doesn't plan to rescope and biopsy him until summer! That'll be amost a year from the last one. And in the meantime we're just rescricting foods, giving meds and sitting here waiting!
I will tell you what my plan of attack is at this point in time on the next post....
In regards to Jason... we went to visit the GI doctor in November. Jason wanted to know "why am I going to the doctor if I'm not sick?" Good question kiddo! "Just to say hello to the doctor and to let her know we're doing great." So, we popped in for a regular follow-up visit and a lab slip to get the usual blood check. While we were there, she gave us a couple sample boxes of EO28 Splash, a fruit flavored formula to help supplement the diet of those who can't a great deal of things. Jason was so excited to try them. With both flavors he said "I really like this" with that contradictory facial expression. And by the third sip or so, he admitted he didn't like it at all. At least he tried. I think the GI was just wanting to help find ways to get more nutrition into Jason's diet, not that he's having any issues growing or staying healthy.
Then, earlier this month we visited the nutritionist in the same office. The GI said the nutritionist would be able to help us make sure that Jason is meeting his nutritional needs and help find alternative foods and supplements. Well, let me just say, that was a wasted appointment. I was told I needed to bring Jason along, who just sat there bored the entire time until he stated that he wanted to leave, which he has never done at any appointment, ever. And instead of learning about how much of the various nutrients Jason needs, she played doctor and was telling us that we shouldn't be feeding him the foods that the Allergist approved, and that this is an uphill battle, that it's a lifelong thing, that he'll never heal and get better if we don't remove him from food, blah blah blah. I got pretty upset by the end of the appointment and wanted to leave quickly as well! Oh, she did tell me that he needs to get 800mg a day of Calcium. Geez, I could have found that on the internet. And she gave me a handful of alternative food sources such as seaweed... Yeah, well, I tried sweet potatoes the other day and he wouldn't eat them. Not only is his diet currently restricted, but he's being picky as well. The nutritionist gave us a can of Neocate to add to smoothies which is something I plan to try.
Anyway, I had to call the GI and talk to her because I was totally confused at this point. Am I doing him more harm than good? The GI told me to follow the instructions of the Allergist and her and that Jason will be fine, as he was in the past with their treatments. So, I felt a bit better, but I'm not one to just sit and wait for things to happen. She doesn't plan to rescope and biopsy him until summer! That'll be amost a year from the last one. And in the meantime we're just rescricting foods, giving meds and sitting here waiting!
I will tell you what my plan of attack is at this point in time on the next post....
Thursday, October 16, 2008
The Biology of Belief by Bruce H. Lipton, Ph.D.
I just thought I'd share a book with everyone. In looking for a cure for my son's dis-ease someone recommended the science of Bruce Lipton to me. The basic premise behind his research is that our health is not determined by our genetics, but rather our beliefs. Our genetics can change, our biology changes based on our environment and beleifs. I know, it sounds odd, but it's the field of Epigenetics. I encourage you to take a look at his work and see if it doesn't click with you. It certainly does for me! I'll be continuing my research in this direction to help my son.
My son is the perfect bill of health, except for some silly picture they showed me after an endoscope. I believe that my son has internalized everything we've talked about in front of him and he believes what he hears because he is less than 6 years old, and in turn, his body has made what he believes and hears "truth". So it's time to help him believe otherwise, and ot STOP talking about negative things, specifically EE in front of him.
I have not gone off the deep end. I've just always been a more open minded person. It's hard to go that path though because most of society thinks it's strange and that we must believe the western world of medicine. I don't think so. There is more and more proof everyday about the mind-body connection. And now there is science to back it up.
Thanks,
Tracy
My son is the perfect bill of health, except for some silly picture they showed me after an endoscope. I believe that my son has internalized everything we've talked about in front of him and he believes what he hears because he is less than 6 years old, and in turn, his body has made what he believes and hears "truth". So it's time to help him believe otherwise, and ot STOP talking about negative things, specifically EE in front of him.
I have not gone off the deep end. I've just always been a more open minded person. It's hard to go that path though because most of society thinks it's strange and that we must believe the western world of medicine. I don't think so. There is more and more proof everyday about the mind-body connection. And now there is science to back it up.
Thanks,
Tracy
Thursday, October 2, 2008
Allergy Testing is Pointless
I haven't been on recently because I'm just frustrated with this disease and the lack of answers. Short update... after the upper endoscope in August that was not as expected (we expected it to be 100% clear and it was far from that) we were told by the GI to go see the Allergist and get his diet figured out. Well, we talked, and decided to do more skin prick testing to see if there are things in his current diet that could be causing the bump in the road. Well, out of 32 foods and spices we tested, he had a positive response to all of them except four! The doctor wanted to take out quite a few things that are basic standars in our house on an already modified diet. I left the office in tears not knowing how I was going to manage this. At least he didn't remove everything that was positive as is typical or we'd have to seriously consider alternative methods of nutrition. He said he'd call the GI and get back to me because he was considering removing additional items. Well, two weeks go by and no call so I phoned the GI directly. She called me back within 30 minutes. She was shocked but didn't want to take away all foods. She wanted to call the Allergist and get back to me. Funny how later that afternoon the Allergist called and said "did you talk to the GI? Because I did too!?" Duh, yeah, because I couldn't wait for you to get back to me any longer! So anyway, we talked more about all the foods to be removed and he doesn't believe that he's truly allergic to all of these things. But with a test that is only 55% accurate for positives I wouldn't base much on it!! How can you eliminate a child's diet based on such a flaky test!!! So my husband and I talked and we've agreed to remove the wheat again (which we think was the main problem in the first place) and increase the Flovent and as well remove some additional foods based on the most recent skin prick test. He is still eating many foods he tested positive for. But we also wondered, if we remove a ton of foods, how will we know which ones were truly the problem, especially, as mentioned before, it's such a non-accurate test!
The other reason I haven't posted much lately is because I really don't want to attract more energy to this stupid frustrating condition! I have been working with my son to stay positive, to focus on the knowledge that his body is strong and healthy and is getting better and better every single day. Honestly, if the doctor hadn't showed me the pictures of his esophagus, I'd argue that he is perfectly healthy! There is scientific support that the mind and body are very much connected. If he's hearing us talk about his dis-ease all the time, he's going to internalize it. If he's thinking about how strong and healthy he is and how he's getting better every day, he WILL get better every day. It was only after I started sharing our story and hearing about all the other cases out there that we did a backslide into the EE hole. So we're distancing ourselves a bit from the whole idea of having some sort of dis-ease and instead focusing on being healthy! I hope you can all understand that.
Thanks!
Tracy
The other reason I haven't posted much lately is because I really don't want to attract more energy to this stupid frustrating condition! I have been working with my son to stay positive, to focus on the knowledge that his body is strong and healthy and is getting better and better every single day. Honestly, if the doctor hadn't showed me the pictures of his esophagus, I'd argue that he is perfectly healthy! There is scientific support that the mind and body are very much connected. If he's hearing us talk about his dis-ease all the time, he's going to internalize it. If he's thinking about how strong and healthy he is and how he's getting better every day, he WILL get better every day. It was only after I started sharing our story and hearing about all the other cases out there that we did a backslide into the EE hole. So we're distancing ourselves a bit from the whole idea of having some sort of dis-ease and instead focusing on being healthy! I hope you can all understand that.
Thanks!
Tracy
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