This week has been a wild ride for us in the HinJew household. Aside from the bottom dropping out of the economy and the gobs of "ripples" felt from that, aside from the fear of "what in the world is going to happen next", we're "enjoying" our own spinning teacups and bottomless free-fall that comes with Asher's disease.
On Monday, Asher's kindergarten class drew letters using corn grits. About two hours after the fact, Asher's teacher thought, hmmnnn...perhaps that's not such a good thing for Asher to be doing and called me. I wished she had called earlier.
Corn is like touching Drano for Asher. It really is like a chemical burn on his skin and it makes him horrifically sick. In the past, touching corn has caused Asher about two solid weeks of sickness and vomiting and a loss of several pounds of body weight. So I'm thrilled to report that he suffered no/little ill effects from the corn. This is HUGE! It's really amazing and is proof that we're on the right track. I really and truly can't believe that he didn't get sick, particularly after taking that huge allergen hit by rolling down the hill at the company picnic. Amazing.
That was Monday.
Tuesday was gymnastics. The kid was a disaster. They worked on the balance beam, which is Asher's worst area. He was particularly congested on Tuesday. He couldn't do a doggone thing on the balance beam. He even struggled with things that he's been able to do in the past. I am beginning to see a correlation between Asher's congestion and his balance/coordination.
Asher's gymnastics teacher got really frustrated with Asher. She's clearly never had a student like Asher before. She let her frustration get the best of her and, well, almost crossed the line of being hurtful to Asher. I'll give her the benefit of the doubt. Frankly, I've been in that state before and I can understand being that frustrated. But then again, I'm not a teacher.
On Tuesday, Asher brought home his progress report. In short, he's failing kindergarten. He got nearly all check minuses. We've said that we wanted him to repeat kindergarten but we didn't want him to FLUNK OUT of kindergarten! That's a different story.
Back to gymnastics: After his class, Asher came upstairs to where I was sitting and saw the jigsaw puzzle left behind by Simi (who just started his class) and excitedly started to do the puzzle. This particular puzzle is for age 2 - it's very simple. Asher quickly put three pieces together and excitedly looked to me for praise and I just died inside. None of the pieces even remotely matched and he really had to force the pieces together to "fit". They were a VERY obvious mismatch. After seeing his horrendous report card, watching this particularly atrocious gym class and now seeing this pathetic puzzle effort - I had to really struggle to keep my composure. It took everything I had not to bawl my eyes out in front of him.
Tuesday was not a good day for Asher.
So now he does jigsaw puzzles every day after school. I quiz him on simple math in the car on the way to school. And I'm feeling a small bit more optimistic about his intellectual capability.
We've been working incredibly hard to clear his congestion. Clearing his congestions helps him - a lot - or so it seems.
On Wednesday, I had a talk with the exception children's coordinator at Asher's school. I've been bugging him since this summer about Asher. Hopefully he'll start giving us some help. Asher needs it.
Now, toward the end of the week, Asher's energy level is rising to amazingly high levels. Raj even used the word "hyper-active" to describe Asher today. It's hard to believe, but Raj is right. I never thought we'd ever use that word to describe Asher. It truly was just a few months ago when I, literally, had to drag Asher out of bed in the morning. And now here he is unable to sit still for a minute. Unbelievable.
As you can see, Mr. Toad's Wild Ride is taking us for quite the spin.
Showing posts with label Eosinophilic Esophagitis. Show all posts
Showing posts with label Eosinophilic Esophagitis. Show all posts
Sunday, October 12, 2008
Monday, October 06, 2008
Asher Update
Asher has been taking oregano oil for nearly a month now and the results have been astounding. It's absolutely amazing. The most obvious ways: he seems so much healthier now. The puffiness and allergic shiners are gone (with the exception of today - more details to follow) and his sinus congestion is almost gone - still a bit of trace of that. The congestion really wants to hang on. The patch of eczema is gone from under his eye. We've been able to stop giving him two of his medicines - Prevacid and Ketotifen - which is a REALLY big deal. He has more energy - but that's probably from the B12 spray we're also giving him.
So here are the real interesting ways he's improved: he has more balance and coordination. I don't understand the connection between gastro-intestinal distress and balance and coordination, but there certainly seems to be in Asher's case. In Saturday's soccer game, a boy on the other team pushed Asher and he didn't fall down! He kept his balance. He kept his balance and I cried.
You should see him in gymnastics. He can follow directions, he can stay on task, and he can do what all the other children do in the class. He's been taking gymnastics for a year now. Every week, I watch him in the class and silently beg for him to pay attention, go through each of the stations, and do as well as the other children. I've tried bribing him. I tell him I'm watching - and I do. And no matter how hard he worked, nothing changed until we killed the MRSA. Now, I watch Asher and tears of extreme happiness run down my face. He looks just like all the other children. OK, so he's probably the worst in the class, but at least he doesn't look out of place now. Now when I watch him, tears of joy stream down my face and I say silent thank you's. It's amazing.
His running seems better too, although there's still a lot of room for progress. But, heck, I'll take what I can get.
His brain seems to have unfogged a bit, too, although, again, there's still room for improvement.
Just yesterday we went to a company picnic. The grass on campus is absolutely gorgeous. It's thick and lush and there are lots of fun places to roll down the hills. The grass is also full of chemicals and the blades of grass are so thick and sharp that it cuts you. Rolling on that grass is like giving yourself a bazillion paper cuts and getting tons of chemicals in your skin in the process. I've rolled down the hill on that grass and suffered skin rashes and itchiness so severe it lasted for weeks. When Lula, one of our dogs, was a puppy, I'd take her for walks on campus and she'd get red, patchy, itchy welts from the chemicals on the grass. So, when I saw Asher and Simi and a good friend of theirs rolling down the hill, I cringed. I wondered just how long he'd suffer a reaction. I wondered if we'd have to hospitalize him. And I wondered how long it would take until we'd see the inevitable reaction.
I'm thrilled to report that, so far, aside from a bad case of hay fever, he seems to be OK. The dark circles returned under his eyes and he's sneezing and has a runny nose. But that's it! No hospitalization. No skin problems. I consider that an amazing improvement in his health. And yes, I was dancing the jig that my son has "merely" a case of environmental allergies.
My goal is to take the oregano oil for six weeks total, then after a month being off the oregano oil we'll test to see if the MRSA is gone. But it's really hard to take the oregano oil. I take it with him because it's really nasty stuff. And it makes my stomach hurt. I can only imagine how it makes his stomach feel. So, I'll be happy if we get to five weeks. Heck, we may have to stop at four weeks- it's that bad. I'd really like Leila to take it too. Her congestion returned after she stopped taking it. Truthfully, it's really hard to get a 2 year-old to take this incredibly nasty stuff. They just don't understand. So, we may be battling MRSA for awhile.
Well, there's a lot more, but I'm really tired. Julie, my apologies for the delayed update.
Until soon..
So here are the real interesting ways he's improved: he has more balance and coordination. I don't understand the connection between gastro-intestinal distress and balance and coordination, but there certainly seems to be in Asher's case. In Saturday's soccer game, a boy on the other team pushed Asher and he didn't fall down! He kept his balance. He kept his balance and I cried.
You should see him in gymnastics. He can follow directions, he can stay on task, and he can do what all the other children do in the class. He's been taking gymnastics for a year now. Every week, I watch him in the class and silently beg for him to pay attention, go through each of the stations, and do as well as the other children. I've tried bribing him. I tell him I'm watching - and I do. And no matter how hard he worked, nothing changed until we killed the MRSA. Now, I watch Asher and tears of extreme happiness run down my face. He looks just like all the other children. OK, so he's probably the worst in the class, but at least he doesn't look out of place now. Now when I watch him, tears of joy stream down my face and I say silent thank you's. It's amazing.
His running seems better too, although there's still a lot of room for progress. But, heck, I'll take what I can get.
His brain seems to have unfogged a bit, too, although, again, there's still room for improvement.
Just yesterday we went to a company picnic. The grass on campus is absolutely gorgeous. It's thick and lush and there are lots of fun places to roll down the hills. The grass is also full of chemicals and the blades of grass are so thick and sharp that it cuts you. Rolling on that grass is like giving yourself a bazillion paper cuts and getting tons of chemicals in your skin in the process. I've rolled down the hill on that grass and suffered skin rashes and itchiness so severe it lasted for weeks. When Lula, one of our dogs, was a puppy, I'd take her for walks on campus and she'd get red, patchy, itchy welts from the chemicals on the grass. So, when I saw Asher and Simi and a good friend of theirs rolling down the hill, I cringed. I wondered just how long he'd suffer a reaction. I wondered if we'd have to hospitalize him. And I wondered how long it would take until we'd see the inevitable reaction.
I'm thrilled to report that, so far, aside from a bad case of hay fever, he seems to be OK. The dark circles returned under his eyes and he's sneezing and has a runny nose. But that's it! No hospitalization. No skin problems. I consider that an amazing improvement in his health. And yes, I was dancing the jig that my son has "merely" a case of environmental allergies.
My goal is to take the oregano oil for six weeks total, then after a month being off the oregano oil we'll test to see if the MRSA is gone. But it's really hard to take the oregano oil. I take it with him because it's really nasty stuff. And it makes my stomach hurt. I can only imagine how it makes his stomach feel. So, I'll be happy if we get to five weeks. Heck, we may have to stop at four weeks- it's that bad. I'd really like Leila to take it too. Her congestion returned after she stopped taking it. Truthfully, it's really hard to get a 2 year-old to take this incredibly nasty stuff. They just don't understand. So, we may be battling MRSA for awhile.
Well, there's a lot more, but I'm really tired. Julie, my apologies for the delayed update.
Until soon..
Monday, September 15, 2008
Day Six - Oregano Oil
We are one day past the "Dreaded Day Five" of Oregano Oil and all's well. Asher's dragon breath is gone, is congestion is improved (but not completely gone), and the allergic shiners under his eyes are gone. The kid has so much energy he doesn't know what to do with himself. He's getting into all sorts of trouble.
Asher had a soccer game on Saturday and did his best ever. And at today's soccer practise, he broke a sweat. He NEVER runs hard enough to break a sweat - so it's a VERY big deal!
Another milestone: On Saturday, Asher was able to sit down and put together a Lego Knight by himself (with a little guidance from me, but mainly by himself). He's never been able to focus that much before. I'm certain it's because his body feels SOOO much better.
It obviously seems like we're going down the right path. Even if this doesn't improve his EE, it certainly is helping his overall health. Raj made a comment yesterday that when we do the follow-up lab tests, he suspects we'll find a/some parasites (there seems to be some sort of relationship between parasites and bad bacteria). When the body has parasites, the eosinophils attack them, which causes eosinophilic esophagitis. Interestingly, even though parasites are one of the known causes of EE, Asher has never been tested for parasites before.
If the follow-up lab results show parasites, removing them will DEFINITELY help cure Asher's EE.
Asher had a soccer game on Saturday and did his best ever. And at today's soccer practise, he broke a sweat. He NEVER runs hard enough to break a sweat - so it's a VERY big deal!
Another milestone: On Saturday, Asher was able to sit down and put together a Lego Knight by himself (with a little guidance from me, but mainly by himself). He's never been able to focus that much before. I'm certain it's because his body feels SOOO much better.
It obviously seems like we're going down the right path. Even if this doesn't improve his EE, it certainly is helping his overall health. Raj made a comment yesterday that when we do the follow-up lab tests, he suspects we'll find a/some parasites (there seems to be some sort of relationship between parasites and bad bacteria). When the body has parasites, the eosinophils attack them, which causes eosinophilic esophagitis. Interestingly, even though parasites are one of the known causes of EE, Asher has never been tested for parasites before.
If the follow-up lab results show parasites, removing them will DEFINITELY help cure Asher's EE.
Thursday, September 11, 2008
Oil of Oregano
Now that Asher has recovered from his allergic reaction to the Bactrim, it's time to stir things up again. His dragon breath and constant congestion returned once he stopped taking the Bactrim, which indicates that the MRSA has returned. Good golly, it feels sooo good to know what's been causing these two things!
So here's the deal: we have a pretty good clue that the MRSA has returned. We also know that Asher cannot tolerate Bactrim. Our only other antibiotic option is Vancomycin, which can cause permanent kidney damage and/or permanent deafness. Hmmmnnn...
When the lab identified the MRSA, they also did sensitivity tests. That's when they found it sensitive to Bactrim and Vancomycin. They also found it sensitive to some herbal options - about ten of them. I googled each option, read about it, and chose Oregano Oil. I read about some startling antibacterial qualities of oregano oil and decided it to be worth a try. And yes, it's true, I have officially crossed the line to "crazy mum". But perhaps we can find a safe way to get rid of the MRSA.
We're all taking it. And interestingly, after a mere day - one teeny tiny drop of oil - and our congestion is nearly gone. All three of the children were rather congested. Their congestion has diminished considerably. Go figure.
This stuff is tough to take. I'm glad I'm taking it along with the children, because it's incredibly mean to impose on someone. I think the children get a kick out of seeing me hate it just as much as they do. Heck, if it helps Asher, I'd do a whole lot worse than take some icky burning nasty oil.
Information on oregano oil can be found here and here. You can find a million more sites by simply typing in those two words into Google.
So, stay tuned to find out if Oregano Oil helps cure Asher of his MRSA....
So here's the deal: we have a pretty good clue that the MRSA has returned. We also know that Asher cannot tolerate Bactrim. Our only other antibiotic option is Vancomycin, which can cause permanent kidney damage and/or permanent deafness. Hmmmnnn...
When the lab identified the MRSA, they also did sensitivity tests. That's when they found it sensitive to Bactrim and Vancomycin. They also found it sensitive to some herbal options - about ten of them. I googled each option, read about it, and chose Oregano Oil. I read about some startling antibacterial qualities of oregano oil and decided it to be worth a try. And yes, it's true, I have officially crossed the line to "crazy mum". But perhaps we can find a safe way to get rid of the MRSA.
We're all taking it. And interestingly, after a mere day - one teeny tiny drop of oil - and our congestion is nearly gone. All three of the children were rather congested. Their congestion has diminished considerably. Go figure.
This stuff is tough to take. I'm glad I'm taking it along with the children, because it's incredibly mean to impose on someone. I think the children get a kick out of seeing me hate it just as much as they do. Heck, if it helps Asher, I'd do a whole lot worse than take some icky burning nasty oil.
Information on oregano oil can be found here and here. You can find a million more sites by simply typing in those two words into Google.
So, stay tuned to find out if Oregano Oil helps cure Asher of his MRSA....
Monday, September 01, 2008
Dragon Breath Returns
In other news, Asher's dragon breath, stuffy nose, puffy eyes, and dark circles under the eyes have returned.
Saturday, August 30, 2008
One More Thing....
In different news, since we stopped the antibiotic, Asher's congestion has returned. It increased each day until now it's nearly back to what it used to be. Harumpf!
Sunday, August 24, 2008
Some Noteworthy Observations
Since Asher started the antibiotic to kill the MRSA in his gut, we noticed some interesting items.
- His dragon breath is gone. For as long as he's been on this planet, Asher has had the absolute WORST breath on the planet. No amount of tooth-brushing, dental flossing, or mouth-rinsing reduces the smell. But now it's gone. Completely gone. No more dragon breath for Asher.
- Interestingly, even though we're in the height of allergy season for grasses (8 on a scale from 1 to 10, with 10 the highest) and even though this allergy season normally kicks his butt and HAS kicked his butt recently, today I noticed that Asher's nose is completely clear. No congestion. No dark circles or puffiness under his eyes. Asher ALWAYS has congestion and dark circles under his eyes, by the way. Today it's completely gone.
I can figure out some logic for the breath, but the lack of congestion baffles me. I'm incredibly grateful and thankful for the two changes.
Wednesday, August 20, 2008
Speaking of Crashes
We identified the cause of Asher's most recent allergic reaction. He suffered an allergic reaction from the Bactrim that we're giving him to kill the MRSA infection. I figured it out on Monday after a rash popped out all over his body. A google search confirmed that others have had the exact same side effects as Asher. Why aren't these side effects listed on the literature given with the medication????
It's encouraging that he managed to go for 9-12 days before suffering a reaction. And hopefully that was enough time to rid his body of the MRSA. We intend to do a follow-up test to check and will use a different antibiotic if necessary.
Asher is still recuperating. This reaction wiped him out completely.
In other news:
It's encouraging that he managed to go for 9-12 days before suffering a reaction. And hopefully that was enough time to rid his body of the MRSA. We intend to do a follow-up test to check and will use a different antibiotic if necessary.
Asher is still recuperating. This reaction wiped him out completely.
In other news:
- On our way to the pediatrician's office yesterday to have him checked out, Asher and I got into a car accident. So we then got to go to urgent care for both the allergic reaction and the car accident. We were driving the Subaru. I'm hoping that it gets totalled; I've always hated that car.
- Our sweet 14 year-old Spotted Dog is really struggling health wise. He was still behaving like a puppy just a few months ago; now he's acting his age. The thought of losing him is devastating.
- I got a new job!
Sunday, August 17, 2008
CRASH!
Asher's good energy wave has come to an end. In fact, Asher is now sicker than he has been in a long time. He's completely crashed.
Asher was riding such a good wave for such a long time that we got used to it. In a way, I think we started taking it for granted that he was feeling so good. It started feeling normal to us. This low he is in right now is the polar opposite of the high he's been riding. I haven't seen him this sick since we trialed beef.
Asher has spent most of the week-end on the couch. He's complaining of a head-ache, tummy ache, full body ache, and whatever else he can complain about. It hurts to eat. He has no energy and spends every possible moment sleeping. Thank G-d for elemental formula, which lets him drink his nutrition. The elemental formula will get him through this bad spell.
Now we have to figure out the cause. That's the fun part. Let's figure out what seemingly innocuous thing is destroying my kid. Of course we have to figure it out quickly, to help get Asher out of the state he's in. Ugh.
Asher was riding such a good wave for such a long time that we got used to it. In a way, I think we started taking it for granted that he was feeling so good. It started feeling normal to us. This low he is in right now is the polar opposite of the high he's been riding. I haven't seen him this sick since we trialed beef.
Asher has spent most of the week-end on the couch. He's complaining of a head-ache, tummy ache, full body ache, and whatever else he can complain about. It hurts to eat. He has no energy and spends every possible moment sleeping. Thank G-d for elemental formula, which lets him drink his nutrition. The elemental formula will get him through this bad spell.
Now we have to figure out the cause. That's the fun part. Let's figure out what seemingly innocuous thing is destroying my kid. Of course we have to figure it out quickly, to help get Asher out of the state he's in. Ugh.
Wednesday, August 13, 2008
Friday, August 01, 2008
MRSA
Usually a lack of posts is a bad thing. In the case of the past two weeks, it simply means that there was nothing to say. Until now.
Yesterday, we met with the integrative medicine doctor to review Asher's blood, urine, and stool test results. To summarize: Asher has a huge amount of the MRSA bacteria in his gut and it's causing damage.
There are a few other minor issues which can be remedied, but the MRSA, obviously, is the big one. There were 50-60 pages of lab results and the ones that showed issues for Asher all point to the damage by the MRSA bacteria in his gut. If we take care of the MRSA (and, to a lesser extent, the Gamma Strep bacteria, which we can kill with the same antibiotic that we use for the MRSA), then his gut will heal.
After seeing these results, this is the first time ever in dealing with Asher's EE that I've felt hopeful that we're on the right track. I really and truly feel like we have found the cause - the reason for Asher's EE. I have read tons of medical journal articles which support the belief that harmful bacteria is one of the causes of eosinophilic esophagitis. I strongly suspect that if we can remove the harmful bacteria and help his gut heal, then his allergies will lessen.
The healing will not happen overnight. It's a 30-day regimen of antibiotic to kill the MRSA. We also have to repopulate his gastro-intestinal tract with beneficial bacteria too and create a healthy environment. And the gut heals slowly. But every journey begins with a single step.
We're on our way....
Yesterday, we met with the integrative medicine doctor to review Asher's blood, urine, and stool test results. To summarize: Asher has a huge amount of the MRSA bacteria in his gut and it's causing damage.
There are a few other minor issues which can be remedied, but the MRSA, obviously, is the big one. There were 50-60 pages of lab results and the ones that showed issues for Asher all point to the damage by the MRSA bacteria in his gut. If we take care of the MRSA (and, to a lesser extent, the Gamma Strep bacteria, which we can kill with the same antibiotic that we use for the MRSA), then his gut will heal.
After seeing these results, this is the first time ever in dealing with Asher's EE that I've felt hopeful that we're on the right track. I really and truly feel like we have found the cause - the reason for Asher's EE. I have read tons of medical journal articles which support the belief that harmful bacteria is one of the causes of eosinophilic esophagitis. I strongly suspect that if we can remove the harmful bacteria and help his gut heal, then his allergies will lessen.
The healing will not happen overnight. It's a 30-day regimen of antibiotic to kill the MRSA. We also have to repopulate his gastro-intestinal tract with beneficial bacteria too and create a healthy environment. And the gut heals slowly. But every journey begins with a single step.
We're on our way....
Wednesday, July 09, 2008
Asher Update
Asher's great energy continues. It's obviously the vitamin supplements we're giving him that's making the difference. I'd never guess that something as simple as a multi-vitamin would make such a major difference.
So now the conundrum is....do we scope or not? According to the protocol set by the specialists, Asher should be scoped every three months because the damage is occurring inside his body and symptoms may not be readily noticed. So, according to these guidelines, Asher needs an endoscopy at July's end. Thing is, it's incredibly invasive and it hurts Asher and there is evidence that general anesthesia damages the mitochondria. Seems to me like after every scope, it takes Asher at least a week to recover.
The doctor at Duke suggests we not scope unless symptoms suggest it. But how do we know the culprit unless we scope? How do we know if all the vitamins and supplements and additional food are true passes unless we scope? What if damage is occurring and we don't see the symptoms?
So...do we scope...or not?
So now the conundrum is....do we scope or not? According to the protocol set by the specialists, Asher should be scoped every three months because the damage is occurring inside his body and symptoms may not be readily noticed. So, according to these guidelines, Asher needs an endoscopy at July's end. Thing is, it's incredibly invasive and it hurts Asher and there is evidence that general anesthesia damages the mitochondria. Seems to me like after every scope, it takes Asher at least a week to recover.
The doctor at Duke suggests we not scope unless symptoms suggest it. But how do we know the culprit unless we scope? How do we know if all the vitamins and supplements and additional food are true passes unless we scope? What if damage is occurring and we don't see the symptoms?
So...do we scope...or not?
Monday, June 16, 2008
And Another Thing...
OK, perhaps you'll put this in the weird/crazy mom category. Or perhaps you'll see it as another piece of the "what's up with Asher" puzzle that will help us heal him:
Asher is SUPER ULTRA SENSITIVE to temperature. Until now.
For example, last year, both Simi and Asher took swimming lessons last summer. When I say it's HOT here in North Carolina in the dog days of summer, I ain't exaggerating one bit! Temperatures reach nearly 100 degrees and routinely hover over the mid-90s with 80-95% humidity. The swimming pool where they took lessons is heated to a temperature that it pleasing to the skin. Well, pleasing to everyone's skin but Asher. Asher was the only child wearing a thermal suit in a heated swimming pool in the hottest days of the Carolina summer. And he shivered.
At Asher's pre-school, they routinely have sprinkler days during the summer. The children love playing in the sprinkler! Asher wouldn't. He'd stay out of the sprinkler, stay on the perimeter of it and watch his friends play in the water. The cold water - even whilst wearing his thermal suit - hurt him.
I have mentioned this to Asher's doctors, who look at me as if I'm green and say, "everyone has different levels of sensitivity to things." I heard, "so what?" "It's no big deal." I always thought this temperature sensitivity thing was a piece of the "what's wrong with Asher puzzle" that was being overlooked.
Fast forward to two weeks ago: the boys were playing in a sprinkler. The temperature was about 105 degrees that day (really! that really and truly was the actual thermometer reading!). I didn't realize that Asher's thermal suit no longer fits him, and that it's also old, torn, and ratty. I found boys swim trunks that fit him and away he went to play with Simi and Leila in the water.
Water from the garden hose is COLD - A LOT colder than that lovely heated swimming pool. And here's my boy standing in the spray and getting SOAKED - with no thermal suit and looking as happy as I've ever seen him. Can it be that Asher is no longer super ultra sensitive to water temperature? Now...doesn't that seem bizarre?
Asher is SUPER ULTRA SENSITIVE to temperature. Until now.
For example, last year, both Simi and Asher took swimming lessons last summer. When I say it's HOT here in North Carolina in the dog days of summer, I ain't exaggerating one bit! Temperatures reach nearly 100 degrees and routinely hover over the mid-90s with 80-95% humidity. The swimming pool where they took lessons is heated to a temperature that it pleasing to the skin. Well, pleasing to everyone's skin but Asher. Asher was the only child wearing a thermal suit in a heated swimming pool in the hottest days of the Carolina summer. And he shivered.
At Asher's pre-school, they routinely have sprinkler days during the summer. The children love playing in the sprinkler! Asher wouldn't. He'd stay out of the sprinkler, stay on the perimeter of it and watch his friends play in the water. The cold water - even whilst wearing his thermal suit - hurt him.
I have mentioned this to Asher's doctors, who look at me as if I'm green and say, "everyone has different levels of sensitivity to things." I heard, "so what?" "It's no big deal." I always thought this temperature sensitivity thing was a piece of the "what's wrong with Asher puzzle" that was being overlooked.
Fast forward to two weeks ago: the boys were playing in a sprinkler. The temperature was about 105 degrees that day (really! that really and truly was the actual thermometer reading!). I didn't realize that Asher's thermal suit no longer fits him, and that it's also old, torn, and ratty. I found boys swim trunks that fit him and away he went to play with Simi and Leila in the water.
Water from the garden hose is COLD - A LOT colder than that lovely heated swimming pool. And here's my boy standing in the spray and getting SOAKED - with no thermal suit and looking as happy as I've ever seen him. Can it be that Asher is no longer super ultra sensitive to water temperature? Now...doesn't that seem bizarre?
Sunday, June 15, 2008
The Great Energy Continues!
Asher's still feeling great. I wish I knew its cause so that we know what to continue doing! He's been feeling great for the past two weeks, which is far longer than any good wave he's ridden in at least a year and a half. I'm on cloud 9!
Both boys had an absolutely wonderful experience at gymnastics camp. Asher did things I never thought possible - for him. On Tuesday, my jaw hit the floor when I saw him playing tug-of-war. He (age 4) and two 5 year-olds tugged against three 6 year-olds. After several minutes, one of the 5 year-olds on Asher's side let go of the rope and sat down. To my surprise, Asher and the other boy managed to keep the tug going for MINUTES after that. I couldn't believe it.
On Thursday, Asher walked on the balance beam by himself - which is only the second time that's happened to my knowledge - and even got up on one of the higher beams and walked sideways on it by himself. I couldn't believe that one! On Friday, Asher was thrilled to show me how well he could dribble a beach ball and he LOVED playing volleyball(!). He jumped up and down in sheer excitement and hustled to get the ball so he could hit it. I couldn't believe the energy level in my kid! I began to wonder if my child was replaced by a totally different kid who just LOOKED like Asher!
In comparison, prior to these past two weeks, if Asher exerted himself for an hour, he would be wiped out for the next week. So in addition to all these new skills he learned, I'm completely surprised (and thrilled!) at his energy level.
Back in early January (January 7th, I believe), Asher was trying to walk down the stairs by himself in our house. He couldn't do it. He was so weak and clumsy and uncoordinated that he nearly fell and stumbled down the stairs. When first realizing that her child would tumble down the stairs, a good mom would have run up the stairs to catch him. I didn't do that. Instead, I grabbed the nearby video camera and filmed it so that I can take the video clip to the doctor and get an understanding of why he was suddenly having trouble going down the stairs. The doctor was also concerned and said it looked like a muscular dystrophy sort of thing. Yeah, I know, like that's comforting.
I'm thrilled to report that this past week, Asher trotted up and down the stairs - by himself - like it was nothing! Woo hoo!
Another huge improvement is that his hands haven't been shaking. Until recently, Asher has suffered from "Parkinson-like shakes" in his hands. Really. It was hard for him to hold a cup of his elemental formula because his hands would shake so much that he'd drop it. I'm proud to report that this past week, his hands haven't shaken like that at all! That's HUGE!
Again, I wish I knew what is making Asher feel so great. We'll just enjoy riding this great energy wave for as long as it continues...and hope for a nice long ride.
Both boys had an absolutely wonderful experience at gymnastics camp. Asher did things I never thought possible - for him. On Tuesday, my jaw hit the floor when I saw him playing tug-of-war. He (age 4) and two 5 year-olds tugged against three 6 year-olds. After several minutes, one of the 5 year-olds on Asher's side let go of the rope and sat down. To my surprise, Asher and the other boy managed to keep the tug going for MINUTES after that. I couldn't believe it.
On Thursday, Asher walked on the balance beam by himself - which is only the second time that's happened to my knowledge - and even got up on one of the higher beams and walked sideways on it by himself. I couldn't believe that one! On Friday, Asher was thrilled to show me how well he could dribble a beach ball and he LOVED playing volleyball(!). He jumped up and down in sheer excitement and hustled to get the ball so he could hit it. I couldn't believe the energy level in my kid! I began to wonder if my child was replaced by a totally different kid who just LOOKED like Asher!
In comparison, prior to these past two weeks, if Asher exerted himself for an hour, he would be wiped out for the next week. So in addition to all these new skills he learned, I'm completely surprised (and thrilled!) at his energy level.
Back in early January (January 7th, I believe), Asher was trying to walk down the stairs by himself in our house. He couldn't do it. He was so weak and clumsy and uncoordinated that he nearly fell and stumbled down the stairs. When first realizing that her child would tumble down the stairs, a good mom would have run up the stairs to catch him. I didn't do that. Instead, I grabbed the nearby video camera and filmed it so that I can take the video clip to the doctor and get an understanding of why he was suddenly having trouble going down the stairs. The doctor was also concerned and said it looked like a muscular dystrophy sort of thing. Yeah, I know, like that's comforting.
I'm thrilled to report that this past week, Asher trotted up and down the stairs - by himself - like it was nothing! Woo hoo!
Another huge improvement is that his hands haven't been shaking. Until recently, Asher has suffered from "Parkinson-like shakes" in his hands. Really. It was hard for him to hold a cup of his elemental formula because his hands would shake so much that he'd drop it. I'm proud to report that this past week, his hands haven't shaken like that at all! That's HUGE!
Again, I wish I knew what is making Asher feel so great. We'll just enjoy riding this great energy wave for as long as it continues...and hope for a nice long ride.
Thursday, June 12, 2008
Amaranth - Day Six
We're one day past the dreaded Day Five of the amaranth trial and....so far so good. Phew! Of course it's just a tentative food trial pass until the definitive biopsy results.
Asher now has three tentative additional foods: banana, cauliflower, and amaranth. He's just about doubled the amount of foods he can eat. Gotta love that!
We chose amaranth because it's a low allergen grain which makes a great substitute flour to use in baking. Now, if only we could find amaranth flour. I can't find it anywhere! Who knew it would be so hard to find?
Asher and Simi are enrolled in gymnastics camp this week. Asher is attending in the morning; Simi attends all day. Both boys are doing GREAT at gymnastics camp. Simi is winning all sorts of ribbons for being the best in certain events. The counselors are coming up to me and saying how talented he is. Who knew?!
Asher now has three tentative additional foods: banana, cauliflower, and amaranth. He's just about doubled the amount of foods he can eat. Gotta love that!
We chose amaranth because it's a low allergen grain which makes a great substitute flour to use in baking. Now, if only we could find amaranth flour. I can't find it anywhere! Who knew it would be so hard to find?
Asher and Simi are enrolled in gymnastics camp this week. Asher is attending in the morning; Simi attends all day. Both boys are doing GREAT at gymnastics camp. Simi is winning all sorts of ribbons for being the best in certain events. The counselors are coming up to me and saying how talented he is. Who knew?!
I was a bit concerned about Asher being in camp. Asher gets wiped out for a full week after a mere one hour of strenuous activity. You can imagine my concern about him being able to last for three hours a day for five days. So imagine my surprise at how great he's doing! Just today I watched Asher walk the balance beam all by himself. That's only the second time - ever - that I've seen him do that. AND, he got himself up on one of the high balance beams and walked sideways on it - all by himself. He's always been too scared to even venture on the high balance beam before - and to do it all by himself is absolutely amazing. I still can't believe he did that! He was also VERY proud to show me just how well he dribbled a ball. I think that's a milestone too. He was even more excited about that than anything else.
So, Asher's riding a great wave right now. It's a GREAT wave and a super-enjoyable ride. We'll just enjoy it for as long as it lasts.
Monday, June 09, 2008
Amaranth
We've declared cauliflower a tentative, preliminary success (until confirmed by endoscopy) and have now moved on to a new food trial: amaranth. Amaranth is a low allergen grain which makes a great substitute when baking. Raj has used millet previously, which is another low allergen grain with high protein. The downside of millet is that it's very crumbly. Hence the amaranth.
Saturday was day one of the amaranth trials. I cooked it according to the directions and served it to Asher. Simi, who was seated across the table from Asher, asked Asher what it tasted like. "Like cooked plastic", was Asher's reply. "HUH?", was my reaction. I tasted it and learned that Asher was right - it did, indeed, taste like cooked plastic. Poor kid. He's supposed to get some savory enjoyment from eating. It should be yummy, not disgusting. Why isn't it written anywhere that amaranth tastes like cooked plastic?
Asher's still eating it, though. Perhaps something new is better than nothing. I've started to add things like sugar and salt into it (so that it tastes like sweet/salty cooked plastic). Raj suggested to Asher that, since Asher is the Little Chef, that he do some testing with the amaranth to get it to his liking. We all loved that idea and now the Little Chef gets to do some cooking!
Saturday was day one of the amaranth trials. I cooked it according to the directions and served it to Asher. Simi, who was seated across the table from Asher, asked Asher what it tasted like. "Like cooked plastic", was Asher's reply. "HUH?", was my reaction. I tasted it and learned that Asher was right - it did, indeed, taste like cooked plastic. Poor kid. He's supposed to get some savory enjoyment from eating. It should be yummy, not disgusting. Why isn't it written anywhere that amaranth tastes like cooked plastic?
Asher's still eating it, though. Perhaps something new is better than nothing. I've started to add things like sugar and salt into it (so that it tastes like sweet/salty cooked plastic). Raj suggested to Asher that, since Asher is the Little Chef, that he do some testing with the amaranth to get it to his liking. We all loved that idea and now the Little Chef gets to do some cooking!
Friday, May 23, 2008
Excellent Story About a Boy With EE
Here is an well-written news story done about a six year-old boy in Connecticut who has the same disease as Asher.
Thank you, Timmy and family, for sharing your story with the world.
Thank you, Timmy and family, for sharing your story with the world.
Friday, May 16, 2008
La Leilita and Her Food
It's no secret that Leila loves her food. After her tonsilectomy, she gained six pounds in a mere two months. I honestly have never seen a child eat as much as she did in the two-three months after her tonsilectomy.
Before her tonsilectomy, I felt like those huge marbles were getting in the way of her eating; that concern was confirmed by her post-surgery gorging. Leila hadn't gained a pound, between ages 1 and 2, but she gained six pounds in the two months post tonsilectomy. WOW!!!
Leila also loves to cook in her pretend kitchen. She cooks up all sorts of things and delivers it to each one of us. She "cooks" eggies and pasta for Simi because that's his favorite dish. She "cooks" pork for Asher. She "cooks" all sorts of things for me. And she always brings me "tea" with my meal. She's very busy in her kitchen.
Now that Leila has recovered from her tonsilectomy, we've stopped giving her Flovent and have been preparing to submit her for an endoscopy with the thought that she might have the same disease as Asher. Now, that thought isn't so certain. She's been doing great ever since her tonsils have been removed.
Now we've been adding in all sorts of allergenic "Asher poisons", like wheat, eggs, and fish, into Leila's diet. Leila isn't certain what to make of the new foods - she just looks at it like, "what is this?".
While Leila is a bit perplexed on her new change of diet, Asher is - most definitely - very unhappy about it. I think he felt like, with Leila sharing his diet, he wasn't singled out. Now, he very much is singled out. It is difficult to upset my easy-going Asher, but this change in Leila's diet certainly has him upset. We add insult to injury by making Asher drink some nasty-tasting vitamin supplements twice a day. This kid just can't get a break.
Leila, when she gets mad, makes a "mean" face. Good golly, this girl gets MAD! Naturally, we all laugh at her when she gets all huffy. We point to her face -- all scrunched up -- and say, "Leila has her angry eyes on."
The other day, Leila and Asher were quibbling and Leila said to Asher, "Asher, I have my angry eyes on." All of us just fell over with laughter.
That's my girl.
Before her tonsilectomy, I felt like those huge marbles were getting in the way of her eating; that concern was confirmed by her post-surgery gorging. Leila hadn't gained a pound, between ages 1 and 2, but she gained six pounds in the two months post tonsilectomy. WOW!!!
Leila also loves to cook in her pretend kitchen. She cooks up all sorts of things and delivers it to each one of us. She "cooks" eggies and pasta for Simi because that's his favorite dish. She "cooks" pork for Asher. She "cooks" all sorts of things for me. And she always brings me "tea" with my meal. She's very busy in her kitchen.
Now that Leila has recovered from her tonsilectomy, we've stopped giving her Flovent and have been preparing to submit her for an endoscopy with the thought that she might have the same disease as Asher. Now, that thought isn't so certain. She's been doing great ever since her tonsils have been removed.
Now we've been adding in all sorts of allergenic "Asher poisons", like wheat, eggs, and fish, into Leila's diet. Leila isn't certain what to make of the new foods - she just looks at it like, "what is this?".
While Leila is a bit perplexed on her new change of diet, Asher is - most definitely - very unhappy about it. I think he felt like, with Leila sharing his diet, he wasn't singled out. Now, he very much is singled out. It is difficult to upset my easy-going Asher, but this change in Leila's diet certainly has him upset. We add insult to injury by making Asher drink some nasty-tasting vitamin supplements twice a day. This kid just can't get a break.
Leila, when she gets mad, makes a "mean" face. Good golly, this girl gets MAD! Naturally, we all laugh at her when she gets all huffy. We point to her face -- all scrunched up -- and say, "Leila has her angry eyes on."
The other day, Leila and Asher were quibbling and Leila said to Asher, "Asher, I have my angry eyes on." All of us just fell over with laughter.
That's my girl.
Thursday, May 15, 2008
Cauliflower
Asher has begun a new food trial: cauliflower. We chose it because it's one of his formerly favorite foods and was one of the foods in the previous failed food trial. In that food trial, I felt that cauliflower was truly a safe food but caught up in a trial with a "bad" food.
I personally believe that Asher's just thrilled to be eating something new. He's loving the cauliflower.
Regarding the banana food trial, we're considering it - as least preliminarily - successful and keeping it in Asher's diet. Since he's been eating bananas, he has a VERY difficult time getting out of bed in the mornings. But once he's up, he has great energy and spirit. We'll find out in July - during the next scope - if the morning tiredness is indicative of a food trial failure.
I personally believe that Asher's just thrilled to be eating something new. He's loving the cauliflower.
Regarding the banana food trial, we're considering it - as least preliminarily - successful and keeping it in Asher's diet. Since he's been eating bananas, he has a VERY difficult time getting out of bed in the mornings. But once he's up, he has great energy and spirit. We'll find out in July - during the next scope - if the morning tiredness is indicative of a food trial failure.
Thursday, April 24, 2008
The Results Are In
The nurse telephoned with the results of Asher's latest endoscopy. Biopsies reveal three eosinophils (eos) per high-powered field (hpf) in the proximal and 15 eos per hpf in the distal esophagus. Results greater than 15 are bad, which means that Asher just barely squeaked by. Since Asher had over 90 eos per hpf in the distal esophagus in his last scope on October 17th, it's encouraging that the number has gone down that significantly. The general consensus is that it takes a long time for the eos to clear from the esophagus.
In other words, it's a pass. We can begin introducing additional foods into Asher's diet. One at a time, of course. One food, wait two weeks for reaction, then another food, wait another two weeks, add a third food, then scope three months from now.
Once Asher stops vomiting, we'll introduce another food. Right now he chooses bananas, but he's allowed to change his mind.
Asher had an absolutely horrendous afternoon and evening yesterday. He vomited up a storm - from 3 PM to about 6 PM. After there was nothing in his tummy left to vomit, he started to dry heave. His tiny little body shook like crazy while it tried to expel something from its empty stomach. I looked on helplessly, trying desperately to think of some way to help my sweet baby.
In a desperate attempt, I took Asher to the pediatrician's last night to see if there could be a virus or bacterial infection or some sort of medicine to sooth his tummy. No dice. Logic says that it's caused by some irritation due to the endoscopy, so it's best handled by the ped. gastroenterologist. Doctor did suggest giving Benedryl (short term) or Zantac (longer term) to sooth the stomach and help with the vomiting. I had never heard of that before. Something about how they are antihistamines, which suppress the histamine allergic reaction. Oh. good to know. So off I went to give Asher some antihistamine. We'll see if it helps.
In other words, it's a pass. We can begin introducing additional foods into Asher's diet. One at a time, of course. One food, wait two weeks for reaction, then another food, wait another two weeks, add a third food, then scope three months from now.
Once Asher stops vomiting, we'll introduce another food. Right now he chooses bananas, but he's allowed to change his mind.
Asher had an absolutely horrendous afternoon and evening yesterday. He vomited up a storm - from 3 PM to about 6 PM. After there was nothing in his tummy left to vomit, he started to dry heave. His tiny little body shook like crazy while it tried to expel something from its empty stomach. I looked on helplessly, trying desperately to think of some way to help my sweet baby.
In a desperate attempt, I took Asher to the pediatrician's last night to see if there could be a virus or bacterial infection or some sort of medicine to sooth his tummy. No dice. Logic says that it's caused by some irritation due to the endoscopy, so it's best handled by the ped. gastroenterologist. Doctor did suggest giving Benedryl (short term) or Zantac (longer term) to sooth the stomach and help with the vomiting. I had never heard of that before. Something about how they are antihistamines, which suppress the histamine allergic reaction. Oh. good to know. So off I went to give Asher some antihistamine. We'll see if it helps.
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