School And Coping With Pain

[PattiD2]

My 14 year old DD, has had a terrible couple of weeks where she has been in constant pain. The pain gets worse after she eats, so it is a challenge to find food she will try and she is losing weight. Our Pediatric GI person has now diagnosed her with IBS, in addition to the celiac and EE. She had a colonscopy and blood tests, in August, after 3 months of gluten-free, that showed the celiac disease was under control. She has definitively said that it could not be eos that is causing the problem, therefore it must be IBS. She told usthat it is not a "serious" disease since it doesn't cause long term damage. She reinforced the regular schedule - eating, sleeping, exercise and school. My husband and I are having a hard time coping with this. He is worried that she is becoming her pain. I worry about that too, but I'm more concerned about the pain that she is experiencing. He thinks that we should force her to go to school because otherwise we are "reinforcing her". I keep asking, what we are reinforcing? I agree that we need to get her to stay on as regular of a schedule as possible, but I can't agree to make her stay in school, if she is in pain.

She is using breathing exercises, relaxation, has started walking with me and is trying to keep eating at regular times. She went last week for several hours on Thursday, but ended up laying down in the office then coming home. Friday she made it all day. We have talked about trying to get her to school, for at least a couple of hours every day, but it is so incredibly heart wrenching for me to have to push her all of the time. Of course, I'm the one staying home with her so it is up to me to get her to go to school, eat, exercise.

How do you handle this? We are trying a variety of fiber, probiotics, and peppermint to help lessen the pain. We will be seeing Dr. Noel, in the Milwaukee Eosinophilic clinic, at the end of November. In the meantime, she ate and showered but is still feeling awful so I'm not sure if she will make it to school.

[Ursa Major]

She may be dairy and/or soy intolerant as well. Or it could be other intolerances altogether. There is no such thing as IBS. The irritable bowel is a symptom, not a valid diagnosis in itself. Your doctor (or you) needs to find the cause, so your daughter can feel better.

I am having the same dilemma right now. My 15-year old daughter is missing at least two days of school a week due to feeling absolutely terrible. And the days she goes she is usually late, missing much of first period (at our local high school they start at 8:00 AM, she'd do better if it was 9:00). Last semester she failed all her courses, despite having an IQ in the gifted range. It is sooooooooo frustrating!

I am in the process of getting her tested for problems. The full Enterolab panel is one of the tests, to establish once and for all if gluten is a problem (she tested negative on the normal blood panel, and therefore refuses to try going gluten-free). She is confirmed casein intolerant.

You are right that you can't force a kid that is obviously too ill to be learning, to go to school. There is a definite problem, and you need to get to the bottom of it. Don't settle for an IBS diagnosis, find out what foods are causing the problems! She may lose a year of school, which isn't the end of the world, even though frustrating, no doubt.

Where is her pain? Stomach, bowels, joints?

If she has joint pain, try taking her off the nightshade family (potatoes, tomatoes, peppers, eggplant). They often cause arthritis like symptoms. Rice will cause me to have joint, back and muscle pain as well, as do eggs and dairy. Plus, they cause stomach pain and bowel problems as well.

Foods high in salicylic acid also cause me pain, mostly in my muscles.

You see, there are many foods that could cause your daughter to be ill. I hope she is more receptive than my stubborn teenager to give cutting out some of her (possibly favourite) foods to see if it helps.

If you find out what the culprit is, and she refuses to eliminate that food (or foods) because she won't give up her favourites, then I agree with forcing her to go to school. That is one reason why I am doing the gluten intolerance testing for Susie. She said that even if she tests positive, she has no intentions of cutting out bread and pastry, she doesn't care. But if I know that she is making herself sick on purpose, because she likes her bread too much, despite knowing that she is poisoning herself, then I have a case when I force her to go to school anyway. Until I know what the cause of her ongoing illness is, I don't feel comfortable doing that.

[vanillazeis]

My 14 year old DD, has had a terrible couple of weeks where she has been in constant pain. The pain gets worse after she eats, so it is a challenge to find food she will try and she is losing weight. Our Pediatric GI person has now diagnosed her with IBS, in addition to the celiac and EE. She had a colonscopy and blood tests, in August, after 3 months of gluten-free, that showed the celiac disease was under control. She has definitively said that it could not be eos that is causing the problem, therefore it must be IBS. She told usthat it is not a "serious" disease since it doesn't cause long term damage. She reinforced the regular schedule - eating, sleeping, exercise and school. My husband and I are having a hard time coping with this. He is worried that she is becoming her pain. I worry about that too, but I'm more concerned about the pain that she is experiencing. He thinks that we should force her to go to school because otherwise we are "reinforcing her". I keep asking, what we are reinforcing? I agree that we need to get her to stay on as regular of a schedule as possible, but I can't agree to make her stay in school, if she is in pain.

She is using breathing exercises, relaxation, has started walking with me and is trying to keep eating at regular times. She went last week for several hours on Thursday, but ended up laying down in the office then coming home. Friday she made it all day. We have talked about trying to get her to school, for at least a couple of hours every day, but it is so incredibly heart wrenching for me to have to push her all of the time. Of course, I'm the one staying home with her so it is up to me to get her to go to school, eat, exercise.

How do you handle this? We are trying a variety of fiber, probiotics, and peppermint to help lessen the pain. We will be seeing Dr. Noel, in the Milwaukee Eosinophilic clinic, at the end of November. In the meantime, she ate and showered but is still feeling awful so I'm not sure if she will make it to school.

I agree with Ursa Major. My daughters GI dr always tells all of his newly diagnosed celiac patients to go gluten free AND casein free. I think it is always necessary. Atleast go casein free. If that doesnt help, i would definately look into entrolabs testing and see if it is soy or dairy, or what! good luck!

[PattiD2]

I appreciate your insight. She has constant pain in her lower abdomen below her belly button, with occasional sharp pains on the side of her stomach, ranging from a low of 3-5, to a high of 7-8. Most days, her pain is constantly there. It has even started waking her up over the last couple of weeks.

She has been gluten free for almost five months. We had gone dairy free, at the beginning of the gluten free, but it seemed like it wasn't bothering her so she slowly started back with it. She can not tolerate drinking milk, but cheese and ice cream used to be ok. She is relatively compliant, although she has a hard time finding foods for her to eat. She is eating potatoes, rice,gluten-free pasta, cheese, olive oil, broccoli, pears, cantaloupe, grapes, sometimes apples. She will have a limited amount of chocolate and some gluten-free baked items.

The eosinophilic esophagitis is notoriously linked to food intolerance. Her doctor chose to treat her with swallowed flovent, as a topical solution, to the inflammation after a very short elimination diet didn't help her. I think that there is a food that could be causing eosinophilic inflammation in her stomach, but the biopsies came back clear so the doctor is adamant that eos couldn't be the cause. I think she is frustrated with me because I don't buy into the IBS diagnosis or the cure being getting her to go to school regularly. She told me that there is no need to try to figure out any more food intolerances because it is unlikely to be the cause. She was told to stop snacking and eat three meals a day. Now, Becca is afraid to eat all day due to the doctor's advice. She has dropped five pounds in the last month so I don't want her to lose any more weight.

In May/June, she had inflammation, an elevated ANA, achy knees and ankles, strange rashes, a sense of having to urinate for hours and one episode of difficulty breathing. All of those symptoms have resolved on the gluten free diet so we are not seeing the rheumotologist for another six months. We are going to see a EOS specialist in Milwaukee later in November. Perhaps they will have some new insight into this dilemma.

Becca plans on going to school tomorrow for the morning. Hopefully, she will be ok. She has agreed to go dairy free for a week or two to see if that will help with her stomach pain.

[Ursa Major]

You see, it takes at least a few weeks off dairy to see the inflammation resolve. She never gave it a chance to begin with. Just because it doesn't cause instant symptoms doesn't mean there aren't delayed reactions. Sometimes my reactions to certain foods don't show up for days.

So, a short elimination diet is also useless, for the same reason. You need to eliminate all suspect foods for at least two weeks, and then try them one at a time about a week apart, to see if she reacts. It is a long, drawn out process, but worth it in the end.

Eating three meals a day is about the worst advice possible. Eating six small meals a day with light snacks in between would be a lot better, much easier on the digestive system. Also, cooking everything for now is better, as raw foods are harder to digest (that goes for all vegetables as well as fruit).

I was unable to eat anything raw (including salads) for six months after going gluten-free, and still can't tolerate too many raw things, after two years. I'd get stomach cramps and abdominal pain from raw food.

Is she having anything with soy? That could also be a huge problem.

[DDloves]

My 15 year old son is having alot of pain as well. He wants to be home schooled. My husband said no, he feels our son needs to learn how to cope with this problem. In the mean time I am looking for a good blood test. I don't know if this well help but I had to let the Nurse at school know that he NEEDS to use the restroom with no questioned asked. The teachers don't like letting kids go out of the room. It might help having a designated place for her to use the restroom where your daughter feels safe and comfertable...remember how rude the other kids where in school when using the bathroom.

[Ridgewalker]

She has constant pain in her lower abdomen below her belly button, with occasional sharp pains on the side of her stomach, ranging from a low of 3-5, to a high of 7-8. Most days, her pain is constantly there. It has even started waking her up over the last couple of weeks.

...................

a sense of having to urinate for hours

I may be completely off-base here, so forgive me in advance but... I don't suppose she's seen a GYN to rule out uterine cysts and that sort of thing, and have a general check-up? I know she's young to put through that, but... with your description of the location of the pain, I just immediately thought, Uterus.

-Sarah

[Piccolo]

Patti

I will throw out the suggestion could you home school your daughter for now? I speak from experience. My son was withdrawn from the third grade at the time. I tried forcing him to go to school. Sometimes he was doubled over. Many time when I took him I would have a call to pick him up just as soon as I got home.

The two years that I had him home were the best for him. This gave him time to calm down and recover physically. When I put him back in school he was better able to cope after that. He will now be graduating in the spring.

Susan

[Ursa Major]

Actually, the home schooling idea is an excellent one, if you are able to do that!

[PattiD2]

We are in the process of applying for a 504 for accommodations at school. They hired a school psychologist at her middle school, instead of a second counselor, who has been very helpful and willing to adjust things for her. We are beginning to talk about home instruction, further assessments and pre-tests along with compacting her curriculum. The teachers have been good about the extra work, although it has been a little ad hoc, so far. I find that she does not have the attention span to work independently on new concepts so I've been talking her through the information before having her do the homework. A limited amount of home instruction would be invaluable.

She was seen by a gynecologist in May, then got her first period in June. She had ultrasound done, at that first visit, that was normal. She had her first period in June as a light period, followed by a very heavy period just two weeks later. She started on the pill in August, so she could go canoing/backpacking with her father, which further messed up her body. The next month, she was bleeding about 19+ days out of the 28 day cycle. She started on a different pill, last week, containing more estogen, with the intention of keeping her on it continually for a couple of months, without menustrating, to settle her body down.

In retrospect, I see that the elimination diet was not done long enough. The GI doctor is not a proponent of dietary modifications for these issues. She was the one that called off the elimination diet. She told us last week that it couldn't be celiac disease because we were so good about being gluten free. We all know how hard it is to truly be gluten free. Why not do one more blood test, just to be sure? If it were up to me, I would put on the elemental formula, then slowly start introducing food again, but the GI doctor won't consider it because she feels she is not sick enough. Constant chronic pain, not able to function, losing weight - I'm not sure why she feels she is healthy.

Becca is getting ready to go to school this morning. We have arranged it that she can only stay two hours, so it is something that she feels she can handle. Hopefully, this approach will help her with any anxiety she has about returning to school while giving her skills to cope, when necessary.

[Ursa Major]

The GI doctor is not a proponent of dietary modifications for these issues. She was the one that called off the elimination diet. She told us last week that it couldn't be celiac disease because we were so good about being gluten free. We all know how hard it is to truly be gluten free. Why not do one more blood test, just to be sure? If it were up to me, I would put on the elemental formula, then slowly start introducing food again, but the GI doctor won't consider it because she feels she is not sick enough. Constant chronic pain, not able to function, losing weight - I'm not sure why she feels she is healthy.

It sounds to me like you should find yourself a new GI doctor, this one is obviously clueless. Plus, you don't need a doctor to do an elimination diet. NO doctor can stop you if you decide to change your diet or your kid's diet! Many here have done an elimination diet on their own, including myself.

[PattiD2]

I agree that we need a new GI, but as is often the case, not always easy. My DH is a pediatrician and coworker, of this GI. Although he is trying to keep an open mind, he tends to see things from the conventional medicine point of view. For instance, he was very relieved when they diagnosed IBS, because it is not a serious disease. I was appalled that they could give us no guidance other than send her to school, teach her to handle stress, eat 3-4 meals a day. This makes for some obvious tension, at home. He has agreed to eliminate dairy and take time off if it is helpful for DD to get back to school. He has encouraged me to share holistic options that I have learned through my many years of chronic back pain. DD and I are going for bi-weekly massage, with some acupressure. We are increasing the frequency of appointments with the therapist, to help her relaxation and meditation skills. In most things, he is willing to adjust eventually, but his natural reaction is to support the GI.

I appreciate the support and ideas. It feels very lonely trying to figure out all of these issues, knowing that western medicine knows very little about so many things. It is hard to know how to provide support without enabling behavior that, in the long run, is counterproductive, to a healthy life. I find these boards to be a great resource and comfort while going through this long ordeal.

[Ursa Major]

For instance, he was very relieved when they diagnosed IBS, because it is not a serious disease.

That makes my blood boil! IBS isn't a disease at all, but rather a bunch of symptoms. And since they are symptoms of something, how can anybody say it isn't serious? All unexplained symptoms (and IBS doesn't explain a thing) are potentially indicating something serious. The goal should always be to keep investigating until the cause of those symptoms is found, rather than being relieved that they've decided on the easy way, which is diagnosing the symptoms as a disease in itself. How illogical and infuriatingly arrogant, to tell a hurting child to pretty much suck it up and learn to live with it!

And while I agree that while things are being investigated you may need to try relieving the pain and cope as best you can, you shouldn't give up on getting your daughter well. And if neither one of your doctors can agree with that, you may need to find two new doctors, not just one!

[buffettbride]

Let me just clarify something. Your husband is a pediatrician and your child is sick with (whatever) and he thinks that IBS is a reliable diagnosis?

Oh my goodness!

As the previous post said, IBS isn't a diagnosis, it's a grouping of symptoms related to something else. Whatever that something else might be.

[PattiD2]

I'm sorry that I mentioned it but I do appreciate the other advice. Obviously, I am not going to get a new husband over this. We are both trying to figure this out, we just have different approaches. I think in some ways we help balance each other out.

[Daughter-of-TheLight]

Like those above, I say it's probably another food intolerance. Even though, i wish I could miss school because I was sick... (I'm homeschooled. No such luck. Though Homeschooling Is FUN!)

[Ursa Major]

I'm sorry that I mentioned it but I do appreciate the other advice. Obviously, I am not going to get a new husband over this. We are both trying to figure this out, we just have different approaches. I think in some ways we help balance each other out.

Oops, sorry, somehow I didn't see that you were saying your husband is a pediatrician. I hate all those short forms, like DD and DH (which I always read as dermatitis herpetiformis, by the way), because it doesn't register as PEOPLE to me! That's why I never use them. I have Asperger Syndrome, and I am very literal, and very visual, too. I like seeing husband and daughter rather than DH and DD, those are so impersonal (to me, anyway).

So, in this case, I obviously don't mean to get a new husband, when I said you need to get a new pediatrician, I am sorry about the confusion.

I guess your husband just knows what he has been taught, just like the GI. And they don't really teach them about celiac disease and food intolerances, or nutrition, at all, unfortunately.

I hope your husband will learn to rethink some of what he has learned, for your daughter's sake.

[Virgie]

Hi! I have been going through the same thing with my son for the past 3 years. 9th grade he missed 80 days, 10th 68 and some late starts, last year wasn't as bad about 20, but this year he has already missed 12. He doesn't have Celiac but does have stomach issues because of Ulcerative Colitis. He also has EE but that doesn't bother him too much (I think) And believe it or not the year he missed 80 he would have missed more but I did pretty much make him go because he did not want to fail that grade and neither did I. I felt horrible every time I dropped him off at school when he did not feel good. I know too that he did not learn much because he could not concentrate. I would have tried homeschooling but he did not want that. He wants to be like all the other kids in his class. It is hard and I can offer you no solutions. I too always tried to have him go in at least for a half day and if he felt well enough he sometimes would stay after if a teacher was available to work with him. I get so frustrated though when teachers (and other students) say that he should "suck it up" and just go to school anyway. One teacher even told me that "he can't be sick 24/7". Like how would he know does he live with us???

Definitely get a 504 plan. My son doesn't have that but he does have an IEP and that has helped too.

I really feel for you as I do know what you are going through. Feel free to message me if you want to "talk".

Take care & Hang in there !!

Virginia

son 18 UC/EE & daughter 13 Celiac

[mommyagain]

She was seen by a gynecologist in May, then got her first period in June. She had ultrasound done, at that first visit, that was normal. She had her first period in June as a light period, followed by a very heavy period just two weeks later. She started on the pill in August, so she could go canoing/backpacking with her father, which further messed up her body. The next month, she was bleeding about 19+ days out of the 28 day cycle. She started on a different pill, last week, containing more estogen, with the intention of keeping her on it continually for a couple of months, without menustrating, to settle her body down.

Could her pain actually be a side effect of the birth control pills? Did the increase in pain start at the same time as the pills? I know several people who have major problems with birth control pills, and cannot use them. I have a cousin who gets violently ill when she uses ANY hormonal birth control! Also, are the pills free of any "problem" foods, like gluten and casein?