# what else can we do



## Guest (Oct 23, 2001)

We seem to have had all tests and all negative but Sam has been in non stop pain since June. What can make it stop? DOes this happen? Are there other tests?Sam's mom


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## Mike NoLomotil (Jun 6, 2000)

Mom,Is Sam's "story" posted on another thread so everyone knows his specific symptoms, history, test performed (specific), etc. so an answer can be formulated?If not it is hard to answer a question about non-specific pain. There are any number of ways to answer as there any number of possible problems.But if you are real specific, or point to where you posted it elsewhere, then answers can be formulated.







MNL_______________ www.leapallergy.com


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## Guest (Oct 23, 2001)

I didn't post. He had a virus in June and it passed quickly but he had non stop pain. Constipation. Started with the pediatrican (he is 17) and had some tests stool blood. then to a GI specialist at Children's Hospital and had stomach x-ray, went inpatient and had upper and lower endoscopy/colonoscopy and biopsy. The pain is still non stop. He is on 30 mg elavil for the last 2 weeks, has had 2 acupuncture treatments and nothing is helping. He has stopped playing baseball and often can't get to school and while colleges and coaches had been pursuing him he is unable to respond. We are scheduled to go for an overnight at Middlebury College and I don't think he can do it. GI person says it is IBS.I am watching him go from a happy active kid to someone so sad and in chronic pain.Please help in any way you canthank you


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## Guest (Oct 23, 2001)

If the medication isn't helping, it is time to call the doctor and have a re-evaluation. The typical dose range for Elavil in IBS is from 10-75 mgs, so he may need a different dose.He may also need a different antidepressant for the pain. In a study where they allowed patients to try different antidepresants over 90% found one that worked but a substantial number of people had to try more than one to find the one that worked well for them.Adding an antispasmodic to the mix may also help. If the pain is all the time then something time released like Levbid may be the way to go.Additionally some people respond well to Mind-Body techniques for controlling pain. These techniques may work both on coping strategies and help the person use the mind to turn down the pain. There is communication between the painful part and the brain and the brain can give feedback to the pain that either tends to reinforce the pain and make it worse or tends to reduce the pain and make it go away. For many people their natural tendancies tend to the reinforcing the pain side of the equation but they can learn to switch that over. Hypnosis and Cognitive Behavioral Therapy tend to be the two most commonly used techniques.In a recent (Summer 2001 Issue 12) or the UNC Center for Functional GI & Motility Disorder Digest there is an article by Dr. Robin C. Spiller on Post Infections IBS. It is common for the inflamation from a GI infection to cause "friendly fire" and it takes time for the bowel to recover. Usually that happens within the first few weeks after the infection, but if it doesn't it becomes the chronic condition IBS. For many people who have IBS after an infection the IBS does fade over time. For some it remains after 5 years, but there is some hope for it going away. ------------------Ph.D. in BiologyAuthorized Expert for IBS Association - Ask the Specialist forum


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## Guest (Oct 24, 2001)

DO some people have chronic non stop pain? WIll he always have that?sam's mom


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## Guest (Oct 24, 2001)

How long do we give the elavil before we know if it is working or not? he will be on it 2 weeks this Thursdau ### 30 mg daily.sam's mom


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## Mike NoLomotil (Jun 6, 2000)

Hi Mom.Sorry so slow...busy this week.You wrote:"He had a virus in June and it passed quickly but he had non stop pain. Constipation. "Please tell me a little bit about this "virus". What happened, what were the symptoms , how long did they last, and then what is the nature, frequency, duration of the pain he is now experiencing. Was he given any form of medication whatsoever for the infection, and if so what.Do not be alarmed that all the standard tests come back normal,as they have ruled out some of the major reversible things, but there are things, as KMOTTUS refers to, which happen in the small bowel which can cause a persistent post-inflammatory reaction in the structures of the small bowel. If this is the case when all is said and done there are other things that can possible help beside antidepresant therapy, especially in kids, as there ar certain things which can be part of this peristent response which can be avoided or some 'restorative work' can be done...but the histroy is very important. And do not be cioncerned if I talk about something the pediatric GI doc did not yet. Some of the stuff I come in contact with via the doctors I know is research on the small bowel that has just been published in europe, and some is so new the reports are just being written so its not even out yet. And some is as old as the hills but not been well disseminated in this country.Anyway, Also when you say "constipation" please describe in some detail. How does his bowel habit compare to what it ws before the "event". Also has the pain associated with this situation altered his eating habits in any way? Is the pain worsened by anything (like eat now and pain gets worse...or urge to make a BM causes pain to go way up, etc)?Sorry. Kind of a habit when you have had it for 40 years (I was 8 or 9 I forget) and you work with immunologists, alergists and dieticians. I just have to have more info before on comment on meds or anything else.Plus, as the famous Dr. William Osler once said "If you talk to the patient long enough he will tell you exactly what is wrong with him".be back tomorow, promiseMNL______________ www.leapalergy.com [This message has been edited by Mike NoLomotil (edited 10-24-2001).]


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## Guest (Oct 25, 2001)

Thank you Mike for your time,He was about to play a baseball game and suddenly threw up a few times. Came home and it passed in 24. OK and then 2 weeks later he threw up once and that seemed to kick off a non stop pain and c that became chronic. He had never been c before and so the pain was the presenting issue. Went to the pediatrician and had the usual assortment of blood and stool all negative. Went to GI and again stomach x-ray showed stool back up put on miralax but the pain never stopped. Had the barium tests and pain sometimes was so bad he couldn't get up. It is worse in the morning and gets better as the day goes on and eating does make it worse. He is not sure what foods but has stopped diary. Spent today at Children's in Boston and the x-ray showed more back up. He was inpatient 2 weeks ago for colon/endos/biop and as I said all fine. He says he always pooped after a big meal and always easily. Now it can take days and is not normal. Eating does seem to make it worse and pooping better when that happens but never so much better that there is no pain.Loved the quote.Thanks again, look forward to your reply,m.m.


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## Mike NoLomotil (Jun 6, 2000)

Hi Mom...Curious....just trying to get a clear picture so bear with me here, esp. since when I was a kid the onset of my lifelong fight with my own guts was very, very similar. _____________________________Went to GI and again stomach x-ray showed stool back up put on miralax but the pain never stopped. Had the barium tests ______________________________did he have a barium enema as well as the barium swallow? And with the "swallow" did they do a series of xrays over time to track it through the GI tract on the pictures? I assume the barium enema was said to be "normal" and that if they did the "small bowel series" they said that structurally it looked normal but there is/was very slow movement (?)since you mention "back up" on "stomach" xraysAlso, when he got sick, not playing doctor just thinking, did he have a fever when he was throwing up the firt time or the second time....and did he get any antibiotic treatment for the first episode?I would also not stop keeping an intake log if possible. In fact, if you can, keep a timed log with the severity of symptoms as well. This can be very significant, and maybe not. If he was d-predominant it would be easier as the mechanisms of the c-type of IBS (if that is what this really is) is far less understood.Also when they did the stool cultures I assume they did the full array of looking for the usual suspects, plus parasites, plus fungi and they were all negative.Anyway the logging is not "diagnostic", per se, but it can, if kept over time and examined not like an "allergy log" but a "delayed reactivity" log, reveal patterns of certain elements which may provoke (worsen) the symptoms.I would also suggest he be encouraged to take the simplest first step, which is avoid all processed foods of all kinds. Kids hate this type of discipline, and it makes moms job harder, I know, but sometimes it can help. And you have to be patient as it might take a month or so to see the difference. I had to do this for my 3 year old (StephanieNL)who started showing early signs of chronic and severe constipation on a perfectly normal diet...and she was in great pain.I put her on a diet which is free as possible of processed foods (no fast food no frozen kids TV diners, etc) and high in such things a natural fruit-sources (grapes, pears, apples, oranges) for any snacks. Also removed all processed juices (she loves juice and most juice if you read their labels is not juice but corn syrup).I buy this one all natural punch called Kokomo Fruit Punch, for example, which tastes a lot like Hawaiian Punch but is ALL FRUIT JUICE AND FIBER no corn syrup...and actually has real fruit fiber in it...and she eats things that have fiber as much as possible. (all types)...if its not fruit for a snack then she gets a bran-banana muffin for example. She does get to cheat once a night with some ice cream or a few pretzels or Ritz crackers because she is now doing pretty good.She is alos kept on a "soft diet". No hard-to-digest fibrous meats unless it is all ground up. No steaks, no chops, no roasts...she eats all soft animal proteins like chicken, or if it is pork it is a patty made from ground up pork, mixed with lamb. Turkey. The only way she gets a cow or pig piece that is not ground up is when it has been in the crock pot and stwed so it is very soft and makes sure then when she chews it is ground up good. No rice.That is like feeding her a brick. But she likes beans, which is good. And broccoli if it is mixed in with other things.Also at the beginning of changing her over we used a form of the "mineral oil priotocol". Some mineral oil mixed in her juices and ice cream (if it is really cold they don't even notice it...I just kept it cold, poured it over the ice and shook the juice like crazy...then reshook it once or twice while she was drinking as the oild separates)...at the beginning as she had developed what a lot of kids start to develop right away...fear-related behaviors related to bowel functioning...you could see the stressa and fear associated with the pain and constipaton, thus making it worse as she tried to "withold" her bowel functions. The mineral oil is often well tolerated as it is basically neutral..not absorbed...is just a lubricant...so the stool just basically slid out of her. She started to lose her -gut-related fear of pain she related to eating and defecating etc. in the transition.That stuff can happen alot faster in littler kids like BabyNL than in older kids...Why am I digressing so much on stuff that probably has nothing to do with helping your boy? Well, (2) things. One is to show you that it can be done without major trauma..getting the chemicals out of the diet to see if it helps, and that it can help c as well as d. Plus, another thing that Dr. Olsler also said once:"Patients do not care how much you know until they know how much you care".I was a sick kid who spent alot of my childhood in terrifying situations in and out of hospitals, and worked with kids later on early in my profession (I am a "retired" Registered Respiratory Therapist). And I really do care, especially when its kids.be back tomorrow to see if you have a little more info. Eat well. Think well. Be well.MNL_______________ www.leapallergy.com [This message has been edited by Mike NoLomotil (edited 10-25-2001).]


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