Jump to content

Menu

Any ideas on what could cause these deficiencies?


Recommended Posts

Dd12 is my kid who has seen 19 doctors over eight years with no real diagnosis for puzzling symptoms she has which come and go. I do want her to see one last doctor, a GI specialist. I just want to make sure there are no absorption issues with her.

 

Anyway, she saw a doctor which specializes in metaabolic disorders. He ran TONS of tests on her, taking over 10 vials of blood as well as a urine sample. She also had numerous vials of blood taken from an endocrinologist recently. The only thing we found out is that she is deficient in protein, potassium and vitamin D. The vit d doesn't concern me at all, that is an easy fix. But the other two do concern me. She was hoping to do mainly vegan like me, but I cannot allow this because of her special issues. The doctors are also really concerned about her not having animal products. So I make sure she has plenty of nuts, legumes, eggs 2 - 3 times per week, meat or fist at least twice weekly. We have cut out dairy and gluten because she seems crampier with more bowel movements on them. We did this before her testing and her celiac panel came back negative.

 

The doctor asked her if she is making herself vomit, because that is what could be causing this upset. I know for certain she isn't. First of all, I was on my quest for answers for years and one reason was her voracious appetite with no weight gain. Secondly, she is with me all the time. She is my shadow. She is NOT modest when it is only us girls at home and she never closes the bathroom door. I am absolutely certain this isn't going on. Also, when she is sick, she is really afraid to vomit. She HATES it.

 

I can't figure out why she would have these deficncies and wanted to ask here. I will be heading out shortly to buy potassium rich foods for her and will check in later.

Link to comment
Share on other sites

My dd is low on potassium, Vit. d, and adrenaline. SHe had an all day urine test to make sure she wasn't having kidney problems and she isn't. We are waiting to see an endocrinologist. We know that ours eats plenty of potassium- she is a big fan of chocolate and bananas. We also know that she is having some issue with absorption or ??? Because in her case, drugs screens don't show the adhd medications she takes and work.

Link to comment
Share on other sites

Potassium is related to vitamin D in the fact that it and magnesium and calcium all work together in your body. I would supplement Cal-mag with her too. Magnesium deficiencies are more common than people think and is often caused by protein malnutrition - something that you've mentioned also. Magnesium is very hard to test because your body tends to rob magnesium from your tissues in order to keep the levels in the blood as normal as possible. My suggestions would be to add an electrolyte powder (I like Ultima Refresh) to her water - esp. if it is hot or she is exercising. The best way to get magnesium is through epsom salt baths or there is a supplement called "Kid's Calm" that you drink.

Link to comment
Share on other sites

You mentioned cramping and more BMs with gluten and dairy. Was she having diarrhea? Does she still?

 

I wonder if she could be having residual effects from that?

 

Also, this is probably unlikely based off your confidence that she's not purging, but some bulimics use laxatives rather than vomiting. I had a college roommate for 2 years who was anorexic and bulemic. She eventually moved to ex-lax and then more powerful laxatives and ended up with an electrolyte imbalance that triggered a seizure. I know you don't feel it is likely, but I thought I'd toss it out there. The laxative thing may be easier for some to mask than purging through vomiting.

Link to comment
Share on other sites

My dd is low on potassium, Vit. d, and adrenaline. SHe had an all day urine test to make sure she wasn't having kidney problems and she isn't. We are waiting to see an endocrinologist. We know that ours eats plenty of potassium- she is a big fan of chocolate and bananas. We also know that she is having some issue with absorption or ??? Because in her case, drugs screens don't show the adhd medications she takes and work.

 

I find it intriguing that our Dds have similar issues and similar defincies. :confused: can you please let me know if you find anything out?

Link to comment
Share on other sites

Potassium is related to vitamin D in the fact that it and magnesium and calcium all work together in your body. I would supplement Cal-mag with her too. Magnesium deficiencies are more common than people think and is often caused by protein malnutrition - something that you've mentioned also. Magnesium is very hard to test because your body tends to rob magnesium from your tissues in order to keep the levels in the blood as normal as possible. My suggestions would be to add an electrolyte powder (I like Ultima Refresh) to her water - esp. if it is hot or she is exercising. The best way to get magnesium is through epsom salt baths or there is a supplement called "Kid's Calm" that you drink.

 

Oh, this is so helpful! Thanks!

 

I am wondering if her hot flashes and sweating is causing this? Hmmm.... I will look for that powder. Thanks!!!

 

and protein..... I think I will make her have one serving of animal protein per day and then have the GI specialist check again later.

 

Thanks!!!

 

ETA: Jean, is Kids Calm by the makers of Calms Forte? And that will be adequate for her?

Link to comment
Share on other sites

Oh, this is so helpful! Thanks!

 

I am wondering if her hot flashes and sweating is causing this? Hmmm.... I will look for that powder. Thanks!!!

 

and protein..... I think I will make her have one serving of animal protein per day and then have the GI specialist check again later.

 

Thanks!!!

 

ETA: Jean, is Kids Calm by the makers of Calms Forte? And that will be adequate for her?

 

Hot flashes are a symptom of magnesium deficiency.

 

Kid's Calm is by a company called Natural Vitality.

Link to comment
Share on other sites

You mentioned cramping and more BMs with gluten and dairy. Was she having diarrhea? Does she still?

 

I wonder if she could be having residual effects from that?

 

Also, this is probably unlikely based off your confidence that she's not purging, but some bulimics use laxatives rather than vomiting. I had a college roommate for 2 years who was anorexic and bulemic. She eventually moved to ex-lax and then more powerful laxatives and ended up with an electrolyte imbalance that triggered a seizure. I know you don't feel it is likely, but I thought I'd toss it out there. The laxative thing may be easier for some to mask than purging through vomiting.

 

Diarrhea sometimes but mostly no.

 

We have no laxatives in the house. And I k ow her weight concerned her last year when she got sick and lost 10 pounds. She was afraid to scare people at swim and questioned dropping out over it. She has been this thin since she was in first grade. Weight has always been an issue and slow weight gain is one reason of several/many that I have tried to get answers for.

 

i am mainly going to address GI issues now as her other troubling symptoms have seemed to pass again. Although drs tell me she isn't hypoglycemic, she certainly has the symptoms. She also can't regulate her body temp and has horrific hot flashes.

 

After the GI dr. We are done. This kid neads a medical break. Mom does, too. It is so hard putting her through all if this!

Link to comment
Share on other sites

Have you considered:

 

-low stomach acid: can take betaine Hcl with food to help. Could also try apple cider vinegar, sucked through a straw to protect her teeth

 

-digestive enzymes

 

-parasites: I was treated for a tape worm a few years ago and we don't have pets. I was also treated for another parasite called blastocystis hominis. I think I picked one (or both) up on a vacation where we went tubing on a river. My main symptom was fatigue, not GI issues.

 

-Homemade bone broths help heal the gut.

 

-Look into healing the gut with the GAPS diet.

Link to comment
Share on other sites

She can still go vegan if you make sure she gets beans and rice (which make complete protein together) every day.

 

To bulk her up I'd give her beans, rice, avocado, nuts, bananas, chocolate (dark if she will accept it), pasta, cereals/cereal grains, a variety of seeds, potatoes.

 

If she feels lacto-ovo vegetarian is okay include cheeses, eggs, honey and ice cream if she can tolerate it.

 

Bran (rice, oat and wheat) is high in magnesium. Leafy greens are high in calcium.

 

I'd try eggs, whole wheat pancakes, oatmeal, bananas, whole wheat waffles, and chocolate for breakfasts. For lunch a big salad with mixed greens, avocado, nuts, beans, other veggies or baked potato topped with broccoli and cheese with avocado on the side and a couple servings of mixed nuts. The for dinner lots of pastas with cheese (if she can tolerate the cheese) or creamy sauces. More bananas, ice cream, chocolate for after dinner.

 

Those foods should bulk her up a bit and address the deficiencies. Don't forget lots of time outside in the sunshine now that it is summer. Just sitting in a chair reading with lots of skin exposed will help. Of course start slowly and don't let her burn.

 

Remember too it is good to be a skinny kid. I was a skinny kid like that. I was 5'7" and less than 100 pounds when I graduated high school. If I'd been bigger then I'd have topped 200 with the weight I've gained since. Luckily the skinny has kept me in size 12s instead of XXL or bigger.

Link to comment
Share on other sites

Hope you find some answers!

 

I had lingering health problems, and have been diagnosed and then undiagnosed for 2 years now (adrenals, Fibro, on and on).

 

When dd started having them too I got even more serious (and open to more 'alternative' practitioners). Finally someone found a cause... we have microscopic parasites! I am on month 2 of treatment and feel miraculously better. DD just started her treatment. Don't rule out the parasites! The tiny ones cause varying symptoms, some similar to what you are describing.

 

I also second the Natural Calm line of magnesium- it is wonderful!

Link to comment
Share on other sites

WOW, Jean!!! I never found this in all my searches! And no doctor ever told me this!!!

 

Denise - I've been spending hours researching magnesium. It explains so much of my troubles with fibro, my heart, sleep, adrenals. . . the list goes on. I'm supplementing daily now (still trying to find the right dose) and am starting to get some relief. And in 20 years, only one doctor brought it up as a potential contributor and even she dropped it when we had trouble finding a good dosage that didn't upset my stomach.

Link to comment
Share on other sites

Have they scoped her and looked for Celiac or other problems in her intestines? Many Celiac patients don't have any symptoms until they're in their 20's or 30's, but have Vit deficiencies from childhood. Every person in my family that has Celiac was misdiagnosed because their blood panel came back negative, but the biopsy/scope of their intestine confirmed that was exactly the problem. It sounds like they need to actually look at the inside of the intestine and see what's going on.

 

:grouphug:

Dorinda

Link to comment
Share on other sites

I would consider parasites also. http://www.myctm.org/articles/q1-2007-lh-parasites.php

 

I had terrible vertigo for over a year. I had been to my doctor, several ENTs, and a chiropractor. Nothing was getting rid of it. I kept telling the doctors that it was stemming from around my left ear. I saw a post on her last year about Humaworm, the parasite cleanse, and thought, I'm desperate enough to try anything, if it might help. By the end of the 30 day cleanse, the vertigo was gone. On day 2 & 3, I felt something moving around by ear and then to back of my neck. I think it might have been a tapeworm. I'm doing my third cleanse now and my health just keeps improving. I'm amazed at all the problems these buggers can cause.

 

If the doctors can't find a problem, I would consider starting there.

Link to comment
Share on other sites

Happygrrl - what are you taking for parasites?

 

mom2samlibby - Did you use the Humaworm?

 

I did a parasite cleanse a couple of years ago and it improved my health dramatically also. I was on prescription medicines, though. I'm thinking of doing a cleanse again and was thinking of doing it without going through the doctor this time.

Link to comment
Share on other sites

I was thinking adrenal issues. My dad was peeing all the time and his labs came back with him low in protein and potassium. His adrenal glands were putting out too much adrenaline--I think. He ended up having surgery to fix it. It also made his blood pressure high. That's all I remember off the top of my head.

Link to comment
Share on other sites

What kinds of GI tests has she had if you don't mind sharing? I'd be looking there closely. I assume they've done celiac but blood results can be false negative--it's good she's gluten free now. Someone mention EOS diseases and someone else parasites and I agree both are possibilities.

 

My son did a Metametrix comprehensive stool when we were having weight and GI issues. He had some really nasty parasites. All of us did the same lab just in case because his results freaked me out. The rest of us were clean (except my husband had h. pylori which is a bacteria). This test is well worth running in my experience if you can.

 

Even if you can't I'd be looking carefully into GI.

 

I am not sure what other symptoms she had that made them look into metabolics? Is it fatigue, nervous system, or muscle issues? If you're seeing anything like that please let me know because certain labs should be run.

 

 

I'd probably watch ferritin levels since her diet is going to be heavy on eggs, beans, nuts, and seeds. All block iron absorption pretty heavily. You may have that covered already via supplements. If not and you want to you could do Gentle Iron by Solgar as insurance there-just keep it away from those particular foods and give with vitamin C rich foods or supplement. It's very easy on the GI system so shouldn't cause her problems like other irons might.

 

:grouphug: I hope you get answers. I know how hard it is to watch your child suffer and have doctors come up empty handed. :grouphug:

Link to comment
Share on other sites

 

mom2samlibby - Did you use the Humaworm?

 

 

I did and am now. I did a 30 day one in Oct., Jan., and just started again this week. I was having problems sleeping earlier this month, so I thought I would do another cleanse. I'm sleeping so much better now. And again, I can feel something moving -- this time in my leg. Hoping it's gone soon! :tongue_smilie:

Link to comment
Share on other sites

Happygrrl - what are you taking for parasites?

 

 

I am taking VRM 3 and VRM 4 fron Systemic Formulas (it is the brand carried by the dr. who diagnosed me). It is specifically for the microscopic ones. I have done cleanses before, but apparently they would have affected the 'big' ones while the little ones hung out! She also found me to have a huge folic acid deficiency. I am taking enzymes, Folic Acid, and the Parasite meds until the Parasites clear, then we can work on other issues. It is pretty amazing how much my pain has lessened in the last two months. I hesitate to talk about it to my friends, as this Dr. is more on the 'fringe', if you know what I mean!

 

Two words: Gut and Psychology Syndrome, by Dr. Natasha Campbell-McBride.

 

We did GAPS for one year (actually more like a year and a half). I truly believe that the diet helped me heal enough to be able to accept my current treatment.

Link to comment
Share on other sites

Have you considered:

 

-low stomach acid: can take betaine Hcl with food to help. Could also try apple cider vinegar, sucked through a straw to protect her teeth

 

-digestive enzymes

 

-parasites: I was treated for a tape worm a few years ago and we don't have pets. I was also treated for another parasite called blastocystis hominis. I think I picked one (or both) up on a vacation where we went tubing on a river. My main symptom was fatigue, not GI issues.

 

-Homemade bone broths help heal the gut.

 

-Look into healing the gut with the GAPS diet.

 

She has been on ACV for years. I healed her GERD using ACV with digestive enzymes because her prescriptions brought her no relief.

 

I had NO IDEA ACV was bad for teeth!!! That actually freaks me out as I have serious tooth issues, even with brushing at least twice daily, often times more, rarely ever eat sweets, floss.:001_huh: i need to check into that.

 

I want to check into the psychology and gut thing as reading some Diana Waring articles has me really wondering if her learning issues could be connected to this. While her year end testing results have shown HUGE improvements, above and beyond what I ever dreamed, Diana was the first one who ever even noted the gut can cause you to all of a sudden forget things you've known how to do for a long time. This has concerned me but now I am thinking it all comes back to her gut. I have a lot to read and consider.

Link to comment
Share on other sites

She can still go vegan if you make sure she gets beans and rice (which make complete protein together) every day.

 

To bulk her up I'd give her beans, rice, avocado, nuts, bananas, chocolate (dark if she will accept it), pasta, cereals/cereal grains, a variety of seeds, potatoes.

 

If she feels lacto-ovo vegetarian is okay include cheeses, eggs, honey and ice cream if she can tolerate it.

 

Bran (rice, oat and wheat) is high in magnesium. Leafy greens are high in calcium.

 

I'd try eggs, whole wheat pancakes, oatmeal, bananas, whole wheat waffles, and chocolate for breakfasts. For lunch a big salad with mixed greens, avocado, nuts, beans, other veggies or baked potato topped with broccoli and cheese with avocado on the side and a couple servings of mixed nuts. The for dinner lots of pastas with cheese (if she can tolerate the cheese) or creamy sauces. More bananas, ice cream, chocolate for after dinner.

 

Those foods should bulk her up a bit and address the deficiencies. Don't forget lots of time outside in the sunshine now that it is summer. Just sitting in a chair reading with lots of skin exposed will help. Of course start slowly and don't let her burn.

 

Remember too it is good to be a skinny kid. I was a skinny kid like that. I was 5'7" and less than 100 pounds when I graduated high school. If I'd been bigger then I'd have topped 200 with the weight I've gained since. Luckily the skinny has kept me in size 12s instead of XXL or bigger.

 

I do have much of what you listed above to help her bulk up a little. What is REALLY weird is that once she stopped swim and her appetite was cut by 75% (really! This shocked me too. She only swam two evenings per week.) she then gained 10 pounds. When she got sick last spring she was only an inch shorter but 20 lbs lighter. She looked awful!

 

Anyway, she is off of gluten and milk. She nearly landed in the hospital when she had a helping of each three days in a row. I am positive she needs to stay away from both or only have small amts. She does well on goat milk cheese.

 

I will be ordering her vitamins Jean mentioned today. I am anxious to get her started on a good vitamin and soe zupplements. A friend of mine just told me today that her neice had a stroke at 15 and they found her to have a potassium defiency.

 

When I do take her to a GI specialist and request he test how she absorbs her food, I hope he can explain how she can gain 10 lbs in three months eating only a fraction of the food she once did, while the orevious 12 months she struggled to maintain.:confused:

Link to comment
Share on other sites

I do have much of what you listed above to help her bulk up a little. What is REALLY weird is that once she stopped swim and her appetite was cut by 75% (really! This shocked me too. She only swam two evenings per week.) she then gained 10 pounds. When she got sick last spring she was only an inch shorter but 20 lbs lighter. She looked awful!

 

Anyway, she is off of gluten and milk. She nearly landed in the hospital when she had a helping of each three days in a row. I am positive she needs to stay away from both or only have small amts. She does well on goat milk cheese.

 

I will be ordering her vitamins Jean mentioned today. I am anxious to get her started on a good vitamin and soe zupplements. A friend of mine just told me today that her neice had a stroke at 15 and they found her to have a potassium defiency.

 

When I do take her to a GI specialist and request he test how she absorbs her food, I hope he can explain how she can gain 10 lbs in three months eating only a fraction of the food she once did, while the orevious 12 months she struggled to maintain.:confused:

Have you taken her to an endocrinologist?

Link to comment
Share on other sites

Have they checked to see if she is hyperthyroid? I assume they have, but thought I'd mention it.

 

Oh yes... Checked twice or more in the past year alone.

 

Hope you find some answers!

 

I had lingering health problems, and have been diagnosed and then undiagnosed for 2 years now (adrenals, Fibro, on and on).

 

When dd started having them too I got even more serious (and open to more 'alternative' practitioners). Finally someone found a cause... we have microscopic parasites! I am on month 2 of treatment and feel miraculously better. DD just started her treatment. Don't rule out the parasites! The tiny ones cause varying symptoms, some similar to what you are describing.

 

I also second the Natural Calm line of magnesium- it is wonderful!

 

I am going to get the NC.

 

I first started to consider parasites due to this thread. Now i am convinced that it is necessary for me...... And I am keeping this in mind with dd.

 

DEFINITELY have more faith in holistic drs.

 

I also need to get on top of checking out her positive Lymes/negative Western blot. I tried to find some of the "under cover" doctors but they are hard to find. I can't believe these drs are somewhat in hiding.:confused:

Link to comment
Share on other sites

Denise - I've been spending hours researching magnesium. It explains so much of my troubles with fibro, my heart, sleep, adrenals. . . the list goes on. I'm supplementing daily now (still trying to find the right dose) and am starting to get some relief. And in 20 years, only one doctor brought it up as a potential contributor and even she dropped it when we had trouble finding a good dosage that didn't upset my stomach.

 

I am glad you ae working on this. I had no idea a potassium deficiency was related to a mag deficiency. Then when a friend told me her 15 yo niece had a stroke due to this, I truly did panic. I have had the Nature Calm sitting in my amazon cart and will be processing the order today. I can't thank you enough!

 

I can't tell you how thankful I am that you pointed out hot flashes/mag issues. Then I realized thatrecently I had some plumbing issues from probiotics so I increased my mag. Guess what? Noticed a HUGE difference in the intensity of my hot flashes.

Link to comment
Share on other sites

Have they scoped her and looked for Celiac or other problems in her intestines? Many Celiac patients don't have any symptoms until they're in their 20's or 30's, but have Vit deficiencies from childhood. Every person in my family that has Celiac was misdiagnosed because their blood panel came back negative, but the biopsy/scope of their intestine confirmed that was exactly the problem. It sounds like they need to actually look at the inside of the intestine and see what's going on.

 

:grouphug:

Dorinda

 

I did not know about the link between childhood deficiencies and CD. Thank you! I will be requesting a scope but am going to let dd take the summer off from seeing doctors.

I would consider parasites also. http://www.myctm.org/articles/q1-2007-lh-parasites.php

 

I had terrible vertigo for over a year. I had been to my doctor, several ENTs, and a chiropractor. Nothing was getting rid of it. I kept telling the doctors that it was stemming from around my left ear. I saw a post on her last year about Humaworm, the parasite cleanse, and thought, I'm desperate enough to try anything, if it might help. By the end of the 30 day cleanse, the vertigo was gone. On day 2 & 3, I felt something moving around by ear and then to back of my neck. I think it might have been a tapeworm. I'm doing my third cleanse now and my health just keeps improving. I'm amazed at all the problems these buggers can cause.

 

If the doctors can't find a problem, I would consider starting there.

 

I will be treating parasites for myself and am uncertain about dd. She was born with GI issues and had to see her first specialist as an i fant. :sad: She had GERD then at 5, and this year I noticed more stool. I will be addressing it as a health issue/imbalanced gut first. But thanks...... I actually HAVE had a parasite enter my leg and did feel it crawl around!

Link to comment
Share on other sites

I was thinking adrenal issues. My dad was peeing all the time and his labs came back with him low in protein and potassium. His adrenal glands were putting out too much adrenaline--I think. He ended up having surgery to fix it. It also made his blood pressure high. That's all I remember off the top of my head.

 

She doesn't pee a lot, and she also had her adrenals checked in March. I was worried it was an adrenal issue myself but the tests came back normal.

 

What kinds of GI tests has she had if you don't mind sharing? I'd be looking there closely. I assume they've done celiac but blood results can be false negative--it's good she's gluten free now. Someone mention EOS diseases and someone else parasites and I agree both are possibilities.

 

My son did a Metametrix comprehensive stool when we were having weight and GI issues. He had some really nasty parasites. All of us did the same lab just in case because his results freaked me out. The rest of us were clean (except my husband had h. pylori which is a bacteria). This test is well worth running in my experience if you can.

 

Even if you can't I'd be looking carefully into GI.

 

I am not sure what other symptoms she had that made them look into metabolics? Is it fatigue, nervous system, or muscle issues? If you're seeing anything like that please let me know because certain labs should be run.

 

 

I'd probably watch ferritin levels since her diet is going to be heavy on eggs, beans, nuts, and seeds. All block iron absorption pretty heavily. You may have that covered already via supplements. If not and you want to you could do Gentle Iron by Solgar as insurance there-just keep it away from those particular foods and give with vitamin C rich foods or supplement. It's very easy on the GI system so shouldn't cause her problems like other irons might.

 

:grouphug: I hope you get answers. I know how hard it is to watch your child suffer and have doctors come up empty handed. :grouphug:

 

Thank you!

 

She has not seen a GI specialist in years so we will be starting from suare one. I will be going in with notes from this thread.:001_smile: so, other than bloodwork with a negative celiac panel, no gi tests.

 

Her GI issues started this year with cramps, more frequent stools (although she is so quick on the toilet that I don't think she is taking the time to empty herself. ) slow weight gain, weakness, fatigue, severe hot flashes, knability to control body temp because sometimes would freeze but mostly heat intolerant (she went hiking with me and a friend in January. Friend and had our winter coats on, dd was in a tank top and was HOT to the touch) sometimes parts of her face would turn blue, dizzy, headache, looked like having a seizure.

 

She used to nearly pass out, fall over, face blue, incoherent,. This is largely controlled now. She has vasovagal syncope, has seen 9 doctors including an endocrinologist, four neurologists, three cardiolofists, metabolic specialist...... Nmerous others, four pediatricians. She has had too many tests, scans and MRI's to count, too many tests to rwmember, and I am sure I haven't listed all her symptoms. She did at one time eat more than my two teenage boys (at the time) and never gained weight. She. Is still wearing shorts from six years ago but is very tall now at 5'3.

 

Thanks for your suggestions!

Link to comment
Share on other sites

A friend of mine was deficient in several things and she needed enzymes. The deficiencies were causing the bi-polar symptoms and she was able to go off of the meds for that.

 

Do you know what kind of enzymes? Dd has no behavioral issues but she does have learning issues which come and go. She did year end testing on a good day and got exceptional scores but most years I am in panic mode..... Wondering if it will be a bad day. She will forget things she has known how to do for months or years, and we never could understand this.

 

Two words: Gut and Psychology Syndrome, by Dr. Natasha Campbell-McBride.

 

Best wishes with your little one's health. :grouphug:

 

I absolutely have to get that book!!! Thanks! I was just reading about struggling learners and an out of balance gut. I think this is going to provide some answers!

Link to comment
Share on other sites

Have you taken her to an endocrinologist?

 

Yes, she saw one in March.

 

The only type of dr I have left to see will be for the GI issues. I also want to address the lymes with a dr who will listen to me when I tell them I don't care about the negative Western Blot, there is still something going on when her first test came back positive!

Link to comment
Share on other sites

Do you know what kind of enzymes? Dd has no behavioral issues but she does have learning issues which come and go. She did year end testing on a good day and got exceptional scores but most years I am in panic mode..... Wondering if it will be a bad day. She will forget things she has known how to do for months or years, and we never could understand this.

My friend takes ZenPep, which is a prescription and high strength.

 

I take this which was prescribed for my Ulcerative Colitis and it works really well for me. My doctor used an electrodermal scan to determine what I needed. I also needed support (specific minerals) and cleansing of my pancreas, liver and kidneys.

 

I hope you get this figured out.

Link to comment
Share on other sites

I wonder if being in the water swimming made her need many more calories to keep her warm? Even a warm pool would cause her to lose a lot of heat. Some people take cold showers and baths to help lose weight. When she quit swimming, it's possible that her caloric need went way down, since she didn't need to use as much food just to stay warm.

 

I used to have low cortisol. When it was low, I could only exercise if I drank salt water instead of plain. If I didn't have salted water, it would take me all day to recover from exercise. It sounds gross, but it actually tasted better to me. After many months, it started to taste gross, so I figured it meant I didn't need the extra salt anymore.

Link to comment
Share on other sites

I had NO IDEA ACV was bad for teeth!!! That actually freaks me out as I have serious tooth issues, even with brushing at least twice daily, often times more, rarely ever eat sweets, floss.

 

I don't know if it's true, but some people are concerned that the acidity in the ACV would erode the teeth. I wouldn't worry about using it on a salad. But drinking a lot of it could be a problem, hence the idea of using a straw.

Link to comment
Share on other sites

You do have metabolic signs. She was seen as an infant for GI?

 

I'm going to link you some mitochondrial information I made on the mothering.com forum when my son was diagnosed. I have a condition that affects mitochondrial function too but didn't know until I was an adult and my son was diagnosed. You may have had basic metabolic labs but I would be shocked if they worked her up for mitochondrial issues because most doctors just don't have the awareness. Here is the link if you want to look and see if you think there is enough to want a work up. The UMDF site here lists the beginning labs (basic for all patients section) so you can see if they did any of those on her. They would be done initially after an overnight fast to put the body under stress because labs can be normal at any given time and there still be an issue. Those are formal metabolic labs that genetics or metabolics would run to investigate this area. There is an alternative med. type test you can do instead that might steer you toward or away from metabolics if you would rather that than formal metabolic labs. That one is just a urine lab--Metametrix organix urine (comprehensive would be good in her situation though I think the basic does metabolics).

Edited by sbgrace
Link to comment
Share on other sites

You do have metabolic signs. She was seen as an infant for GI?

 

I'm going to link you some mitochondrial information I made on the mothering.com forum when my son was diagnosed. I have a condition that affects mitochondrial function too but didn't know until I was an adult and my son was diagnosed. You may have had basic metabolic labs but I would be shocked if they worked her up for mitochondrial issues because most doctors just don't have the awareness. Here is the link if you want to look and see if you think there is enough to want a work up. The UMDF site here lists the beginning labs (basic for all patients section) so you can see if they did any of those on her. They would be done initially after an overnight fast to put the body under stress because labs can be normal at any given time and there still be an issue. Those are formal metabolic labs that genetics or metabolics would run to investigate this area. There is an alternative med. type test you can do instead that might steer you toward or away from metabolics if you would rather that than formal metabolic labs. That one is just a urine lab--Metametrix organix urine (comprehensive would be good in her situation though I think the basic does metabolics).

 

I will go pull her papers from the metabolic specialist. I know it is very hard to get in to see him because he is so good, in high demand, and is triple board certified. But i know all her tests were done after breakfast.

 

I will look through this. Thanks!

Link to comment
Share on other sites

My friend takes ZenPep, which is a prescription and high strength.

 

I take this which was prescribed for my Ulcerative Colitis and it works really well for me. My doctor used an electrodermal scan to determine what I needed. I also needed support (specific minerals) and cleansing of my pancreas, liver and kidneys.

 

I hope you get this figured out.

 

Was the GI specialist the one to tell you what to take? Did they also find the deficiency?

Link to comment
Share on other sites

I wonder if being in the water swimming made her need many more calories to keep her warm? Even a warm pool would cause her to lose a lot of heat. Some people take cold showers and baths to help lose weight. When she quit swimming, it's possible that her caloric need went way down, since she didn't need to use as much food just to stay warm.

 

I used to have low cortisol. When it was low, I could only exercise if I drank salt water instead of plain. If I didn't have salted water, it would take me all day to recover from exercise. It sounds gross, but it actually tasted better to me. After many months, it started to taste gross, so I figured it meant I didn't need the extra salt anymore.

 

Pool time was only just over an hour per night. It coild be possible but I'm not so sure. I have thought about this a lot but I just don't know. The thing I really wish I could understand is why she gained 10 pounds in a few months when her appetite decreased significantly. She can still pound down the food at times, but nothing abnormal now.

 

I don't know if it's true, but some people are concerned that the acidity in the ACV would erode the teeth. I wouldn't worry about using it on a salad. But drinking a lot of it could be a problem, hence the idea of using a straw.

 

I need to research that. Thanks!

You have been on my mind~ Hope you find answers! :grouphug:

 

Thanks so much? I have been on the search for eight years. The GI specialist and Lymes doctors will be docs 20 and 21. I have kind of just figured out along the way how to make her feel well. Her symptoms are largely decreased now, but unfortunately they changed significantly this year!

Link to comment
Share on other sites

Thanks so much? I have been on the search for eight years. The GI specialist and Lymes doctors will be docs 20 and 21. I have kind of just figured out along the way how to make her feel well. Her symptoms are largely decreased now, but unfortunately they changed significantly this year!

 

I haven't read the rest of the replies but have you thought to take her to a clinic like Mayo where multiple specialty areas could coordinate efforts? The people I know who've gone have said they are set up well to handle out of town patients, and if an answer is to be found they usually get there much faster than doing the one specialist to another route back home.

Link to comment
Share on other sites

The doctor asked her if she is making herself vomit, because that is what could be causing this upset. I know for certain she isn't. First of all, I was on my quest for answers for years and one reason was her voracious appetite with no weight gain. Secondly, she is with me all the time. She is my shadow. She is NOT modest when it is only us girls at home and she never closes the bathroom door. I am absolutely certain this isn't going on. Also, when she is sick, she is really afraid to vomit. She HATES it.

 

 

Is it possible she is going outside to vomit?

Link to comment
Share on other sites

Was the GI specialist the one to tell you what to take? Did they also find the deficiency?

My friend went to an Osteopath and was diagnosed based on symptoms.

 

I went to a Natural Doctor and diagnosed with electrodermal scan.

 

You might look at drrind.com for some pointers on metabolic problems. This book also helped me so much.

Link to comment
Share on other sites

I haven't read the rest of the replies but have you thought to take her to a clinic like Mayo where multiple specialty areas could coordinate efforts? The people I know who've gone have said they are set up well to handle out of town patients, and if an answer is to be found they usually get there much faster than doing the one specialist to another route back home.

 

She has been seen by numerous doctors at Boston Children's Hospital as well as Dartmouth Hitchcock. All have been baffled, none have answers. People travel from all around the world for these two hospitals.

 

intestinal parasites?

 

I am questioning that.

 

Is it possible she is going outside to vomit?

 

No. I am absolutely positive she isn't vomiting. Positive. She's always been afraid to vomit. It is something else, I know it is. And I have been on my search for answers to multiple issues, one being her failure to gain weight, since she was a young girl. Year after year after year I mention this to her pediatrician, who is actually wonderful but also baffled.

 

My friend went to an Osteopath and was diagnosed based on symptoms.

 

I went to a Natural Doctor and diagnosed with electrodermal scan.

 

You might look at drrind.com for some pointers on metabolic problems. This book also helped me so much.

 

Thanks!!!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...