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Please send prayers and good thoughts for DD11


AimeeM
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I've written before about her stomach issues. Over the past 6 months they've escalated to the point that she had to drop co-op and ballet, because she missed so many classes of each that she was getting upset when she couldn't keep up. She has so many plans for the upcoming school year... she wants to go back to ballet, she enrolled in some neat classes taught by hired teachers at a local co-op (IEW writing, Shurley grammar, anatomy, and engineering), and just the normal friends, family, and fun.

 

But I'm afraid that she'll get to do none of this if we can't figure out the stomach issues. The diarrhea, excruciating pain, and throbbing only happens occasionally (it can happen one time a month, one month, and then 6 or 7 times the next month - completely random), but when it does happen, she's out of commission for the day entirely.

 

We went in for another visit with the ped. A new ped. She's testing for several things, but is concerned that Autumn may not be either getting nutrients, or not retaining them (her weight hasn't budged in a year and she's very slim to begin with). Frankly, with the frequency with which she's been having diarrhea, I was surprised she hadn't LOST weight.

 

As of a couple weeks ago, she's also broken into hives for no apparent reason twice (and it really seems to have nothing to do with *anything* - the first time we were in the car on the way to ballet - she'd had nothing to eat, haven't changed detergent... nada).

 

If you could just send good thoughts and/or prayers. She's a vibrant, happy girl and when her stomach isn't hurting, she's on top of the world - skipping through the house showing off her latest crafts, chatting up about Twilight, rolling her eyes and tossing her hair like a normal preteen... but she's had to give up everything she loves and I'm afraid that her good spirits aren't going to last much longer. She doesn't appear to be SAD about it, but she does seem downright angry at her "stupid stomach".

 

I want her to have her life back so badly. It's heartbreaking to listen to her tell me that she's hungry but afraid to eat because it makes the stomach pains worse. I can't stand the thought of her hungry, hurting, and not able to do the things she wants to do so badly.

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That's so hard when they are in pain. I had extremely stomach issues when I was in college. They finally said it was IBS and gave me some medication. I'm not entirely sure if that is what it was, but things settled down some after I started on the medication.

 

Have you had her tested for parasites? They can cause all sorts of problems.

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She's testing her for everything under the sun - I would assume that includes Celiac's and parasites. If she had parasites wouldn't others in the house have it as well? Everyone freely shares plates, cups, etc and nobody else is having problems.

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I'm so sorry! Has she been tested for Celiac's because it can present with a skin rash called Dermatitis Herpetiformis. I pray you find answers quickly.

 

I did just look up Celiac's. It appears that it presents from birth or shortly after, right? DD has only had the symptoms for about a year now.

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I did just look up Celiac's. It appears that it presents from birth or shortly after, right? DD has only had the symptoms for about a year now.

 

 

Celiacs can appear at anytime. A friend of mine's dd was just diagnosed with it this winter. She's 5. They thought it was the flu for several weeks. It took multiple doctor's visits, ER trips, and a trip to Children's Hospital with her INSISTING that they run more tests before releasing her.

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So sorry to hear about your dd. My 9 year old dd was diagnosed with migraines 3 years ago. I can relate to what you said about being out of commission for an entire day and about not being able to predict when symptoms will occur.. It must be so frustrating for you and your dd.

 

This may sound crazy, but there is such a thing as an abdominal migraine. It might be worth researching it if you haven't already.

 

Sue

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My older daughter developed horrible intestinal pains (no diarrhea) during sixth grade. Writhing on the ground type of pain. It almost always happened during the late evening or at some point after bedtime and would continue for many hours. I couldn't connect it with anything she ate, despite diligently recording everything for the doctor.

 

One morning she woke up with a rash on her legs which I didn't recognize as hives. I got her in to an allergist that day (she already had an appointment for weeks later). It turns out she is allergic to soy and was having allergic reactions almost every day. I felt like such a horrible mother for essentially poisoning my child. Soy is in everything.

 

I hope you and your dd get an answer soon. It stinks when you can't do anything to make it better :grouphug:

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Please ask the doctor what tests she is running. Don't assume the doctor is testing everything . Look up conditions and list symptoms your dd has that match disease and ask the doctor if he/she has considered testing for it. I had to do that for my dd. I had to be persistent, scheduling appointment after appointment to discuss symptoms and request tests be run. After the tests were run, it turned out I was right about the disease I thought my dd had. The doctor didn't want to consider it and really dismissed me for suggesting a rare condition. My dd could have gone for years undiagnosed without my persistence.

 

Celiac disease can present itself any time in a person's life, not necessarily from birth or early childhood. You have described some classic celiac symptoms. Among symptoms Crohns and IBS have some overlap.

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My younger ds has struggled with tummy problems all of his life. It might be time to see a pediatric GI doc. There are specific blood tests that a GI doc will do to look for inflammation in the body that could indicate IBD (not IBS). IBD is Crohn's or Ulcerative Colitis. Also it might be time for a lower endoscopy. They can look to see if there is inflammation and do a biopsy to test for Celiac's as well. I would also keep a close eye on her weight.

 

It's so hard watching a child in so much pain. The fact that you are having to pull her out of normal activities is a sign that something isn't right.

 

Good luck!

 

Elise in NC

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Guest submarines

She's testing her for everything under the sun - I would assume that includes Celiac's and parasites. If she had parasites wouldn't others in the house have it as well? Everyone freely shares plates, cups, etc and nobody else is having problems.

 

 

Please don't assume anything.

 

Both of my older children are gluten sensitive. DD's symptoms have never been that severe, but she had stomach issues since she was 4--mostly occasional mild diarrhea. Five doctors over the years (we saw different ones because we moved several times) said "There's no way it is gluten. She's too this, too that, and in any case, it is impossible."

 

DS started having severe stomach pains when he was 6. This actually included hives, but it seemed that they came after a meal, so we assume he was allergic to something. But in the 3 instances he had hives, there was nothing new that he ate. We ended up in the ER several times because of his pain. Again, doctors said, "There's no way it is gluten related. Celiac is rare, he doesn't have typical symptoms. There's no such thing as "gluten sensitivity." When I asked about parasites, I was given the same response, "There's no way it is parasites."

 

I never tested them. I think it *is* better to test. But DD was needle-phobic, her symptoms weren't typical, and I just decided to take her off gluten as an experiment. She was so much better, we never looked back.

 

With DS, I was too fed up with the doctors refusing to test for anything, pushing medication, and saying, "Start him on meds, wait for 3 months, and come back." Since I already knew DD did better without gluten, we started a GF diet for DS as well. His symptoms are gone! He's been pain free for over a year now.

 

My experiences can be more typical for Canada. I find it is an absolute pain to get tested for anything, as we have "free" health care and they don't want to waste "the government's" money for those frivolous Celiac tests. The typical approach for stomach issues in kids is, "Wait for 3 months, then come for Zantac, then wait another 3 months."

 

Even if you aren't in Canada, please don't assume they are testing for everything. Do your research, trust your gut feeling, and ask for specific tests.

 

Hugs to you and your DD.

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While I am not familiar with all of the diseases listed above, my dd also had some severe stomach issues for a few months. She had some testing and nothing came up. Before we went to the more invasive testing, I decided to try some natural things to see if they helped. We put her on a very high quality probiotic. We mix it in a little juice every morning. We also gave her a digestive enzyme. Within a couple of days, her bellyaches went AWAY! Completely. We ran out of her enzyme a few weeks ago and the bellyaches came back. I won't let that happen again.

 

I'm not trying to minimize what everyone else is saying. I'd definitely be on the phone with the doctor getting every test in the book done for your dd. But, in the meantime, maybe try a probiotic and an enzyme. Can't hurt.

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I'm sorry you're going through this. I feel so bad for you and you're dd. We've been through it, too. I really know what you mean when you say it's making her angry, not sad, for all the interference it causes in her life.

 

I don't know if you remember me posting a lot last fall about dd's issues. She had nausea, unrelenting fatigue, and weight loss for months. It was very scary. I put off the endoscopy for as long as possible because I thought the procedure would be upsetting, etc. Now I wish I had pushed for it earlier. It was so easy, and it helped rule out a lot, and finally helped us figure out what the problem was.

 

I would encourage you to consider a colonoscopy and endoscopy asap if your pediatric gi suggests it. I hope you are seeing a good pediatric gi.

 

If it goes on and on or the episodes become more frequent, besides the risks to her physical health, the emotional effects could come as well. I'd try to get to the bottom of it with the appropriate diagnostic procedures, not just blood tests which can be unreliable for things like celiac.

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Praying for her and you. If you haven't had an IgG done, I really think you should do that or an IgE. If you read the PaleoMom blog and try the autoimmune protocol, I think you'd have fast answers. She has you eliminate all of the top allergens and then add them back in a very systematic way that will make it quite clear what the culprit is and give her back her life. The easiest thing to do if you can't swallow going that far is to remove all gluten and dairy and eggs, but it may be none of these. For my dd13, it was eggs and sesame. We wasted 6 months of those terrible stiomach issues with her off of gluten and dairy (not a bad thing, just not her issues) before getting and IgE done and finding that it was eggs and sesame. My co-owner of our business had debilitating arthritis and could hardly work any longer. She did an IgG and found her culprits are beef and almonds!!! Her arthritis is GONE. I am not exaggerating. So, you can try just gluten, but that really might not be it. It could be any nut, eggs, dairy, gluten, nightshades (which include many spices), citrus, bananas, etc. Have you all been keeping a food dairy? That didn't help us bc/ we weren't thinking of sesame, which is my dd's big issue. Also, the book Gut and Psychological Syndrome is the BEST thing I've read to help me understand what was really happening. See if your library has it. it is so helpful! You can read a bit here: http://gapsdiet.com but the book is a rich resource of explanations.

HTH!!!

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BTW, the post about probiotic and digestive enzyme is dead-on as well. This is a great source: GI ProHealth

My friend's dd ignored these issues till she was 12 at which point she had Crohns so badly that she had all but 4" of her intestines removed. She now does SCD diet and is finally gaining weight! GI ProHealth sells probiotic and enzymes that someone with major allergies can tolerate - no gluten or dairy and no polysaccharides. HTH too!

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Before we went to the more invasive testing, I decided to try some natural things to see if they helped. We put her on a very high quality probiotic. We mix it in a little juice every morning. We also gave her a digestive enzyme.

 

:iagree:

 

I would try this first, and also have her keep a food diary. My guess is IBS, and often you can identify a very few foods that trigger an attack.

 

From webmd

 

2. Diet Triggers for IBS Diarrhea

 

Some foods can worsen IBS-related diarrhea. These include:

  • Too much fiber, especially insoluble fiber found in the skin of fruits and vegetables

  • Food and drinks with chocolate, alcohol, caffeine, fructose, or the sugar substitute sorbitol

  • Carbonated drinks

  • Large meals

  • Fried and fatty foods

  • Food and drinks with dairy, especially in people with lactose intolerance

  • Foods with wheat -- Some people may be allergic or have a negative reaction to gluten

 

Prevention Strategies:

  • Eat a moderate amount of soluble fiber. It adds bulk to the colon and can help prevent spasms. Good sources are whole wheat breads, oats, barley, brown rice, pasta, the flesh of fruit (as opposed to the skin), and dried fruits.

  • Don't consume foods with extreme temperatures, such as ice-cold water and steaming hot soup, in the same meal.

  • Stay away from broccoli, onions, and cabbage. They can cause gas, which can make diarrhea sufferers feel worse.

  • Eat smaller portions.

  • Drink six to eight glasses of plain water a day, but drink the water an hour before or after meals, not with meals.

  • Consult with your doctor or a dietitian if you suspect you may have a wheat allergy.

 

Some people with IBS have symptoms similar to lactose intolerance with excess gas. A trial of a lactose-free diet and avoidance of foods that produce excess gas such as beans, brussels sprouts, pretzels, bagels, wheat germ, raisins, and celery may help reduce symptoms.

 

 

For my dh it is onions and peppers. :glare:

 

Sometimes Pepto Bismol or Simethicone (Gas-X) is helpful.

 

Anyway, if those things don't help, I'd have her see a GI doctor. But the next step is invasive (endoscopy, etc) and I'd want to try dietary modifications first.

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I would definitely take her to a GI, and I would take her to get her allergies tested. My dd is also struggling with stomach issues right now. She recently had to drop out of gymnastics because it got so bad. The GI found signs of inflammation that the ped did not, and we are currently following up with that. A specialist can really make a world of difference at times.

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*hugs* and good thoughts for your dd. I dealt with a "stupid stomach" until I had my first child. He is severely allergic to several things so we adjusted our diets. My stomach has been fine ever since. I don't know what caused my issues, but they appear to have been food-related.

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I would see a specialist for this - gastroenterologist, allergy specialist, etc., not just a pediatrician. :grouphug: :grouphug: :grouphug:

 

We are trying to get a GI. I've asked for a referral, as we've been to her pedi now half a dozen times for this, but they keep skirting the referral and I have no clue why. We need the referral for insurance. If it doesn't happen soon, I'll call our insurance and ask what we can do.

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Praying for her and you. If you haven't had an IgG done, I really think you should do that or an IgE. If you read the PaleoMom blog and try the autoimmune protocol, I think you'd have fast answers. She has you eliminate all of the top allergens and then add them back in a very systematic way that will make it quite clear what the culprit is and give her back her life. The easiest thing to do if you can't swallow going that far is to remove all gluten and dairy and eggs, but it may be none of these. For my dd13, it was eggs and sesame. We wasted 6 months of those terrible stiomach issues with her off of gluten and dairy (not a bad thing, just not her issues) before getting and IgE done and finding that it was eggs and sesame. My co-owner of our business had debilitating arthritis and could hardly work any longer. She did an IgG and found her culprits are beef and almonds!!! Her arthritis is GONE. I am not exaggerating. So, you can try just gluten, but that really might not be it. It could be any nut, eggs, dairy, gluten, nightshades (which include many spices), citrus, bananas, etc. Have you all been keeping a food dairy? That didn't help us bc/ we weren't thinking of sesame, which is my dd's big issue. Also, the book Gut and Psychological Syndrome is the BEST thing I've read to help me understand what was really happening. See if your library has it. it is so helpful! You can read a bit here: http://gapsdiet.com but the book is a rich resource of explanations.

HTH!!!

 

Thus far we have tried eliminating dairy, eggs, and gluten. We also kept a food diary - and that's where it gets odd. There is NO common denominator. If her stomach hurts after eating eggs one day, it may not the next time she eats eggs (and the same with gluten, dairy, etc). She's a creature of habit and generally eats similar things for breakfast and lunch, but the stomach issues only happen (generally) 3-6/7 times a month. It ALWAYS starts in the morning, when it does happen, and often she's had NOTHING to eat when it starts - preventing her from eating until after it simmers (afternoon or early evening). After trying to eliminate and keeping a food diet, I'm more and more leaning towards that it has nothing to do with a food allergy or intolerance. I know that some of the tests being run are thyroid, autoimmune, and a few others (some kind of ulcer that doesn't show on an x-ray? I forget the name).

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Guest submarines

Thus far we have tried eliminating dairy, eggs, and gluten. We also kept a food diary - and that's where it gets odd. There is NO common denominator. If her stomach hurts after eating eggs one day, it may not the next time she eats eggs (and the same with gluten, dairy, etc). She's a creature of habit and generally eats similar things for breakfast and lunch, but the stomach issues only happen (generally) 3-6/7 times a month. It ALWAYS starts in the morning, when it does happen, and often she's had NOTHING to eat when it starts - preventing her from eating until after it simmers (afternoon or early evening). After trying to eliminate and keeping a food diet, I'm more and more leaning towards that it has nothing to do with a food allergy or intolerance. I know that some of the tests being run are thyroid, autoimmune, and a few others (some kind of ulcer that doesn't show on an x-ray? I forget the name).

 

:grouphug: I had a friend with a child who was sensitive to salycilic acid. When she listed the foods her DD couldn't have I didn't see a common denominator, but they all had high salycilic acid content. Just wanted to throw it out there.

 

I hope you get the referral. :grouphug:

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