2 Year Old With LC
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KourtneysMOM
- Posts: 7
- Joined: Mon Mar 26, 2007 10:02 am
- Location: Chino, CA
2 Year Old With LC
Hello everyone! I'm new here and my name is Laura. My daughter, Kourtney, wil be 2 years old this sunday. She was diagnosed with LC last July. She started with her symtoms at birth. She has always been so sick (and was labeled failure to thrive for awhile). Once we took all lactose and fruit out of her diet she began gaining weight and is doing much better most of the time. Is there anyone else out there with a young child that has LC? I haven't been able to find anyone else in my same situation, but anyone's thoughts would be nice. Thank you.
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Hi Laura,
Wow! I feel so bad for your daughter (and you). It's hard enough to go through this when you're an adult and caring for yourself!
We have had a few (2 or 3 maybe) parents come through with kids anywhere from infant/toddler to teenagers diagnosed with MC.
Has Kourtney been tested for celiac? Many of us here do much better on a gluten free diet, but are negative for celiac. We have a sensitivity to it, but not full blown celiac disease.
Hang around and read the various sections on this board. The support is wonderful, and there is lots and lots of very good information.
Katy
Wow! I feel so bad for your daughter (and you). It's hard enough to go through this when you're an adult and caring for yourself!
We have had a few (2 or 3 maybe) parents come through with kids anywhere from infant/toddler to teenagers diagnosed with MC.
Has Kourtney been tested for celiac? Many of us here do much better on a gluten free diet, but are negative for celiac. We have a sensitivity to it, but not full blown celiac disease.
Hang around and read the various sections on this board. The support is wonderful, and there is lots and lots of very good information.
Katy
Wow, didn't realize there were even younger folks with me. I thought I was out of the ordinary getting it in my mid 30s.
Given what I think some causes are and given her age I would wonder about Vitamin D levels, use of NSAIDs, as mentioned some food allergy/celiac, and finally the one I would look at the most would be dysbiosis (gut bacteria being off).
I'm curious about whether she was breast fed or born c-section? Do you have any GI issues, any family GI issues?
Mike
Given what I think some causes are and given her age I would wonder about Vitamin D levels, use of NSAIDs, as mentioned some food allergy/celiac, and finally the one I would look at the most would be dysbiosis (gut bacteria being off).
I'm curious about whether she was breast fed or born c-section? Do you have any GI issues, any family GI issues?
Mike
Your daughter is ADORABLE. Thanks for posting the picture.
I am just floored that a child that young would have this and especially since birth. I am so very sorry.
Please give Kourtney a big hug from me and you both have my best wishes. I hope you'll be able to find some more answers soon.
Shirley
I am just floored that a child that young would have this and especially since birth. I am so very sorry.
Please give Kourtney a big hug from me and you both have my best wishes. I hope you'll be able to find some more answers soon.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
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KourtneysMOM
- Posts: 7
- Joined: Mon Mar 26, 2007 10:02 am
- Location: Chino, CA
Thank you everyone. To answer some of your questions:
Her poop was tested and multiple blood tests and biopsys were done. They said her stomach acid was way high, but there were no abnormal bacteria levels. She was given the biopsys because her blood test showed that celiac was a possibility, but the biopsy for it was neg. We decided to scope both ends at once, and that's how we found the LC. She was breastfed until about 9 months old--and she was born by c-section (she was 6lbs 3oz at birth--1 week early). I'm wondering why you ask that though--is there a correlation? She actaully started to improve once we put her on soy formula--it kills me to think that my milk contributed to making her so sick.
They tried giving her medication--the Pentasa didn't digest in her stomach (they came out in her diapers as whole little beads) and then they put her on Sulfasalazine. It was digested better since it was a liquid, but it caused her liver to stop functioning. So we control her with diet alone. She was never given any other medicines--and I don't take medication when I'm pregnant because it makes me nervous. If I missed adressing something let me know! :)
Her poop was tested and multiple blood tests and biopsys were done. They said her stomach acid was way high, but there were no abnormal bacteria levels. She was given the biopsys because her blood test showed that celiac was a possibility, but the biopsy for it was neg. We decided to scope both ends at once, and that's how we found the LC. She was breastfed until about 9 months old--and she was born by c-section (she was 6lbs 3oz at birth--1 week early). I'm wondering why you ask that though--is there a correlation? She actaully started to improve once we put her on soy formula--it kills me to think that my milk contributed to making her so sick.
They tried giving her medication--the Pentasa didn't digest in her stomach (they came out in her diapers as whole little beads) and then they put her on Sulfasalazine. It was digested better since it was a liquid, but it caused her liver to stop functioning. So we control her with diet alone. She was never given any other medicines--and I don't take medication when I'm pregnant because it makes me nervous. If I missed adressing something let me know! :)
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Since you've noticed an improvement with some diet changes, I would suspect (based on the collective reactions of people here to foods of different sorts) that she has food intolerances. And if that is the case, it sounds like you are on your way to finding out what causes problems for her and while it will be hard, she will be far healthier than if this is just ignored.
Gluten is the most common thread here. I don't think we have any one who has figured out they have food intolerances who can eat gluten. The two next most prevalent are probably casin (the protien in milk) and soy (although it sounds like maybe soy is okay for her if she did okay on soy milk). Little story about soy milk...most, if not all the commercial brands have gluten in them!
THere is some info on here about doing an elimination diet to take out all the "likely" food sensitivities, and then slowly add them back in a watch for a reaction. It might be slower going for you because she can't really describe to you how she feels. For example, many of us feel very bloated, and more fatigued when we eat one of our intolerances. I'm sure she doesn't have the words for that yet. Although perhaps it shows up as general crankiness (makes me cranky for sure).
Pull up a chair and chat away. You'll find her path to wellness.
Katy
Gluten is the most common thread here. I don't think we have any one who has figured out they have food intolerances who can eat gluten. The two next most prevalent are probably casin (the protien in milk) and soy (although it sounds like maybe soy is okay for her if she did okay on soy milk). Little story about soy milk...most, if not all the commercial brands have gluten in them!
THere is some info on here about doing an elimination diet to take out all the "likely" food sensitivities, and then slowly add them back in a watch for a reaction. It might be slower going for you because she can't really describe to you how she feels. For example, many of us feel very bloated, and more fatigued when we eat one of our intolerances. I'm sure she doesn't have the words for that yet. Although perhaps it shows up as general crankiness (makes me cranky for sure).
Pull up a chair and chat away. You'll find her path to wellness.
Katy
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Liz
- Rockhopper Penguin
- Posts: 1540
- Joined: Tue Sep 13, 2005 5:23 pm
- Location: Qld Australia
- Contact:
Hi Laura
so sorry that your little Kourtney is suffering so much with LC. I did not know that you could have it so young either, but I expect many of us could have had it & not been aware. It must be dreadful for one so young to have had to endure what Kourtney has all of her short life. And terrible for you to have to watch it happen. You must feel so helpless. I always feel so sorry for parents of sick children. It must be so hard to see your little ones bear so much.
Mike there used to be a 19 year old male in Adelaide, here in Australia who had MC. & I believe that we have had several younger people on this & Sally's board over the years. Some have had young families & were also going through pregnancies with it. I myself have had problems in this area since my early twenties which was diagnosed as 'Non Specific Colitis" caused by an over production of bile salts. I rather suspect that it could have been MC all along as it was not found to exist 'til much later.
Love
Liz
so sorry that your little Kourtney is suffering so much with LC. I did not know that you could have it so young either, but I expect many of us could have had it & not been aware. It must be dreadful for one so young to have had to endure what Kourtney has all of her short life. And terrible for you to have to watch it happen. You must feel so helpless. I always feel so sorry for parents of sick children. It must be so hard to see your little ones bear so much.
Mike there used to be a 19 year old male in Adelaide, here in Australia who had MC. & I believe that we have had several younger people on this & Sally's board over the years. Some have had young families & were also going through pregnancies with it. I myself have had problems in this area since my early twenties which was diagnosed as 'Non Specific Colitis" caused by an over production of bile salts. I rather suspect that it could have been MC all along as it was not found to exist 'til much later.
Love
Liz
A smile is a light in the window of your face that shows that your heart is at home
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Hi Laura-----and little Courtney is adorable---
Its so hard to imagine a wee tot being stricken with this ailment---
There isnt much that I can add---but am sure there will be plenty of info. posted here to get Courtney on the *WELLNESS ROAD*
Laura---I hope Courtney(and seeing as U have started) as she grows and grows will understand all about this and she will keep herself in good shape--
Keep us updated---
luve Barbara--CC
Its so hard to imagine a wee tot being stricken with this ailment---
There isnt much that I can add---but am sure there will be plenty of info. posted here to get Courtney on the *WELLNESS ROAD*
Laura---I hope Courtney(and seeing as U have started) as she grows and grows will understand all about this and she will keep herself in good shape--
Keep us updated---
luve Barbara--CC
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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Carol Arnett
- Gentoo Penguin
- Posts: 423
- Joined: Fri Mar 17, 2006 12:07 pm
Hello and welcome, Laura. What an absolutely adorable looking child! I feel sure you will find some answers here. I haven`t had anywhere near the problems some have had but believe me, I do know what it feels like.
You must get awfully frustrated at times but if you just post and post and read and read I know you will find some answers here. Some of the people on this board (if not most) know more than the doctors sometimes do.
Best of luck to you and beautiful Kourtney. Love, Carol
You must get awfully frustrated at times but if you just post and post and read and read I know you will find some answers here. Some of the people on this board (if not most) know more than the doctors sometimes do.
Best of luck to you and beautiful Kourtney. Love, Carol
Carol Arnett
Hi Laura,
Welcome to our internet family. I'm sorry to hear that your beautiful baby girl has this condition, but I'm glad to see that you are actively seeking solutions, because those who search for solutions, usually find them.
Since Mike hasn't had a chance to post a follow-up, I'll volunteer an opinion that the reason for his questions, was probably because of the fact that typically, a baby is not exposed to it's mother's gut fauna, until it begins it's trip down the birth canal, and the protective placenta breaks. Therefore, there is speculation that some babies delivered by c-section, may not be properly "inoculated" with the "correct" gut bacteria, early on, and be more prone to subsequently develop dysbiosis, and possible immune system problems.
Also, breast fed babies are vulnerable to certain toxins that can be transmitted in their mother's milk. Vitamin deficiencies, and other issues, can also be transmitted through milk. On the plus side, though, babies that receive the colostrum, (first milk), have a powerful advantage, because it contains some very special protective ingredients. At least this is true for animals, so I would assume that it is true for humans, too. (In case you're wondering, I'm not a vet, I'm a farmer).
I hope I haven't misconstrued any information here, because this is not exactly my area of expertise, and I'm relying on my memory to write this.
Hopefully, Polly will soon be along with some helpful insight. Since she's a pediatrician, she can address your issues with the benefit of her knowledge and experience. She controls her symptoms by diet alone, also.
Again, welcome aboard, and I hope that you find the solutions you are seeking for your daughter. Please feel free to ask any questions that come to mind. We will do our level best to answer them, and provide support in any way that we can. We pride ourselves in staying at the cutting edge of technology, when it comes to living with, and controlling, microscopic colitis, and we are anxious to help you, so that you can fine tune your treatment program for your daughter.
Wayne (aka Tex)
Welcome to our internet family. I'm sorry to hear that your beautiful baby girl has this condition, but I'm glad to see that you are actively seeking solutions, because those who search for solutions, usually find them.
Since Mike hasn't had a chance to post a follow-up, I'll volunteer an opinion that the reason for his questions, was probably because of the fact that typically, a baby is not exposed to it's mother's gut fauna, until it begins it's trip down the birth canal, and the protective placenta breaks. Therefore, there is speculation that some babies delivered by c-section, may not be properly "inoculated" with the "correct" gut bacteria, early on, and be more prone to subsequently develop dysbiosis, and possible immune system problems.
Also, breast fed babies are vulnerable to certain toxins that can be transmitted in their mother's milk. Vitamin deficiencies, and other issues, can also be transmitted through milk. On the plus side, though, babies that receive the colostrum, (first milk), have a powerful advantage, because it contains some very special protective ingredients. At least this is true for animals, so I would assume that it is true for humans, too. (In case you're wondering, I'm not a vet, I'm a farmer).
I hope I haven't misconstrued any information here, because this is not exactly my area of expertise, and I'm relying on my memory to write this.
Hopefully, Polly will soon be along with some helpful insight. Since she's a pediatrician, she can address your issues with the benefit of her knowledge and experience. She controls her symptoms by diet alone, also.
Again, welcome aboard, and I hope that you find the solutions you are seeking for your daughter. Please feel free to ask any questions that come to mind. We will do our level best to answer them, and provide support in any way that we can. We pride ourselves in staying at the cutting edge of technology, when it comes to living with, and controlling, microscopic colitis, and we are anxious to help you, so that you can fine tune your treatment program for your daughter.
Wayne (aka Tex)
Sorry, I should have added more info to my questions so as not to worry you. As tex mentioned some babies that are born c-section don't get the good bacteria that they would normally get when born via the other way. Good to hear that her bacteria levels were normal as this would be what I would have probably had tested if you had not. And by testing for bacteria levels they didn't just test for bad bacteria, correct? They also tested to make sure that she had the good bacteria normally present?KourtneysMOM wrote:Thank you everyone. To answer some of your questions:
Her poop was tested and multiple blood tests and biopsys were done. They said her stomach acid was way high, but there were no abnormal bacteria levels. She was given the biopsys because her blood test showed that celiac was a possibility, but the biopsy for it was neg. We decided to scope both ends at once, and that's how we found the LC. She was breastfed until about 9 months old--and she was born by c-section (she was 6lbs 3oz at birth--1 week early). I'm wondering why you ask that though--is there a correlation? She actaully started to improve once we put her on soy formula--it kills me to think that my milk contributed to making her so sick.
They tried giving her medication--the Pentasa didn't digest in her stomach (they came out in her diapers as whole little beads) and then they put her on Sulfasalazine. It was digested better since it was a liquid, but it caused her liver to stop functioning. So we control her with diet alone. She was never given any other medicines--and I don't take medication when I'm pregnant because it makes me nervous. If I missed adressing something let me know! :)
And breast milk is another good thing for babies as this helps the GI tract grow, build proper immunity and helps provide the food for the good bacteria. So everything is good there. Sounds like you're on the ball as for what to look for. Perhaps through diet alone she'll get better. I have a 4 yo daughter so I can imagine how hard this must be for you as I feel terrible when she just gets the stomach flu.
I'm guessing that she was tested for the other colitis diseases, ulcerative colitis and crohn's as these tend to hit the younger folks more often than the older.
I can't think of anything that you're missing either, but perhaps as tex said Polly might have more info.
I wish you and your daughter all the best.
Mike
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KourtneysMOM
- Posts: 7
- Joined: Mon Mar 26, 2007 10:02 am
- Location: Chino, CA
Thank you for all your thoughts and advice! When the doc did the scoping, he said that her large intsetines were bruising badly, so he took a biopsy of 4 or 5 different spots in her large intestine alone, and he said her small intestines were clean and the biopsy was neg for celiac. I'm not actually sure what else he tested for with the biopsy. I'll ask at the next appt.
I feel a little stupid asking this next question, but I quess I'll ask it anyway. I have just found out that I have endometriosis--I have my first surgery in a couple of weeks. I'm wondering, is there any correlation? Since I think they are both considered auto-immune I was wondering if there's a connection. We want to have one more child (which may not be possible with my endo anyway) but I wouldn't want to chance giving this to another child.
I feel a little stupid asking this next question, but I quess I'll ask it anyway. I have just found out that I have endometriosis--I have my first surgery in a couple of weeks. I'm wondering, is there any correlation? Since I think they are both considered auto-immune I was wondering if there's a connection. We want to have one more child (which may not be possible with my endo anyway) but I wouldn't want to chance giving this to another child.
Laura,
If she had UC, (Ulcerative Colitis), or Crohn's, the GI wouldn't have needed biopsies to diagnose either of those two diseases - their markers are clearly visable through the colonoscope.
Yes, they are both considered to be autoimmune diseases, but the only connection that I am aware of, is the tendency for patients with one autoimmune issue to sometimes develop other autoimmune issues. I'm not aware of any direct link between MC and endometriosis.
Our resident expert on endometriosis is Katy. Maybe she has more information about whether or not they might be linked in other ways.
A few other questions come to mind, (trying to figure out why Kourtney was either born with MC, or, most likely, developed it soon after birth, due to adverse GI tract influences):
Did you, by any chance, stop smoking while you were carrying her?
Did you use NSAIDs prior to her birth, (NSAIDs are basically any non-narcotic painkillers, except for Tylenol, (acetaminophen).
Did you use any proton pump inhibitors, such as lansoprazole, during this time period, or earlier?
The reason I ask, is because all these events have been shown to trigger MC, in some individuals.
Tex
If she had UC, (Ulcerative Colitis), or Crohn's, the GI wouldn't have needed biopsies to diagnose either of those two diseases - their markers are clearly visable through the colonoscope.
Yes, they are both considered to be autoimmune diseases, but the only connection that I am aware of, is the tendency for patients with one autoimmune issue to sometimes develop other autoimmune issues. I'm not aware of any direct link between MC and endometriosis.
Our resident expert on endometriosis is Katy. Maybe she has more information about whether or not they might be linked in other ways.
A few other questions come to mind, (trying to figure out why Kourtney was either born with MC, or, most likely, developed it soon after birth, due to adverse GI tract influences):
Did you, by any chance, stop smoking while you were carrying her?
Did you use NSAIDs prior to her birth, (NSAIDs are basically any non-narcotic painkillers, except for Tylenol, (acetaminophen).
Did you use any proton pump inhibitors, such as lansoprazole, during this time period, or earlier?
The reason I ask, is because all these events have been shown to trigger MC, in some individuals.
Tex
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Also very sorry to hear of your endometriosis diagnosis. UGH. I had that too. I say had, because I had a hysterectomy a year and a half ago because of very problematic fibroids.
As for a correlation, you are right that they may very well both be autoimmune issues. I was diagnosed with endo in 2000 and MC in 2002. As I was reading all the information on what evolved into this website, I chose to start a gluten free diet for preventative purposes. I had read lots of stuff in endo references that some people have reductions in pain when they maintain a wheat (one of the gluten containing grains) and dairy free diet. And since there is a developing (or developed) trend linking gluten sensitivity with MC. I didn't want to develop another illness!
You may want to look into the testing that Dr. Fine offers through Enterolab (I know the link is on this website (I'm at work and don't have time to look right now). I know his website is www.finerhealth.com. Lots of good info on gluten and MC there. And probably a link to the lab site too. It may be possible that a gf diet will help you as well. I know it reduced some of my endometriosis symptoms (unfortunately not all, but that might be that I haven't been super good about maintaining gf...I do okay for a while then slip. I've gotten much more careful in the last 6 months).
I don't think I'd worry about passing these things on. Endometriosis for example runs in my family, but my sister doesn't have it. My mother doesn't have it. My maternal grandmother probably had it. and my paternal grandmother probably had it, one of my dad's sisters had it, the other didn't (although they both had bad fibroid problems like me). And you know so much more now than you did in Kourtney's first couple years, that you are better equiped to help your next child if that is your choice.
Good luck with your upcoming surgery. I wish you the best of luck and a speedy recovery.
Katy
As for a correlation, you are right that they may very well both be autoimmune issues. I was diagnosed with endo in 2000 and MC in 2002. As I was reading all the information on what evolved into this website, I chose to start a gluten free diet for preventative purposes. I had read lots of stuff in endo references that some people have reductions in pain when they maintain a wheat (one of the gluten containing grains) and dairy free diet. And since there is a developing (or developed) trend linking gluten sensitivity with MC. I didn't want to develop another illness!
You may want to look into the testing that Dr. Fine offers through Enterolab (I know the link is on this website (I'm at work and don't have time to look right now). I know his website is www.finerhealth.com. Lots of good info on gluten and MC there. And probably a link to the lab site too. It may be possible that a gf diet will help you as well. I know it reduced some of my endometriosis symptoms (unfortunately not all, but that might be that I haven't been super good about maintaining gf...I do okay for a while then slip. I've gotten much more careful in the last 6 months).
I don't think I'd worry about passing these things on. Endometriosis for example runs in my family, but my sister doesn't have it. My mother doesn't have it. My maternal grandmother probably had it. and my paternal grandmother probably had it, one of my dad's sisters had it, the other didn't (although they both had bad fibroid problems like me). And you know so much more now than you did in Kourtney's first couple years, that you are better equiped to help your next child if that is your choice.
Good luck with your upcoming surgery. I wish you the best of luck and a speedy recovery.
Katy