Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Probably magnesium and fruit fiber chews are your first too attack Since he swallows pills I'd start him on renew life's kid lax too. Have you had an OAT organic acid test done? Are there any kidney concerns? Post test results if you'd like and we " moms who seem to have it more right than the docs " here will help all we can. > > Hi everyone, > > I found this board from others on the eosinophilgastro board (hi Deanna!). I have been > reading old posts, and I am all freaked out now about what Miralax has been doing to my > son. > > Jasper has had abdominal pain on and off for almost two years. We tried PPIs three times > - it was hard to tell if they helped or not. Took him in again just before Christmas (07) > and the ped recommended an xray to see if he was constipated. Jasper was, so the ped > recommended Miralax, which was supposed to be very safe. We gave him a full dose every > day for a month or so. It did not help the abdominal pain, but it did help him poop, so we > kept him on it. > > Around Christmas Jasper also started to experience other symptoms, which the doctors > (eventually a pediatric GI and a neurologist) could not explain. Arm and leg pain so bad he > could not use the affected limb and sudden severe headaches. > > Then he started rolling his eyes, which he said he could not help doing. Soon after that, > when he walked through a doorway he would always knock his elbows against the door > frame. > > My husband teaches special ed and so we know the signs of OCD. But because of Jasper's > stomach problems we have been putting off seeing yet ANOTHER doctor about him. > > Now we know what his abdominal pain has been all about -- he was just diagnosed with > eosinophilic gastroenteritis, which was probably caused by so=far unknown food allergies. > But looking back, all the other stuff- the limb pain, headaches and neuro symptoms > started after the Miralax. > > Even more importantly - his stomach pain actually became more frequent after beginning > with the Miralax. > > He has been off the Miralax for about a week now. Also we took him off dairy, just > because I have a hunch about it causing him problems. So far, he's going just fine, but he > does have pain with BMs. I have been pushing fruit juice. Jasper has food aversion, so > getting him to try taking new things is a very stressful experience for him, and for me, > too. > > My first question for you all is, how do I help Jasper get the Miralax out of his system? > Keeping in mind, his food aversion means he will gladly swallow pills and capsules, and > drink powders that dissolve in juice, but he doesn't like to chew things, eat fruits and > vegetables, or drink thick drinks. > > Thanks so much! I am so glad to have found you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi , Welcome! So sorry to hear about all that Jasper is going through. We are working on getting together a beginner's file - but in the meantime, hopefully you'll get some posts with helpful info from everyone. Also, there are already some files on " what's working.. " in the files section. I'd recommend checking LeeAnn's file ( " mommtlc " ). Also, some previous posts for new members. (Sorry, I know that can be a pain to sift through previous posts!, but can be helpful). First, have you tried testing him for gluten intolerance/celiac? Have you heard of gluten ataxia (see links below)? If Jasper is in fact gluten intolerant and/or a celiac, this could be part of the lack of coordination he may be experiencing (bumping elbows on door frames, etc.). I'm not sure about the eye rolling - but if it's neurological (and seems likely it is), it could be related. Gluten intolerance/celiac can also cause constipation and other GI inflammation/damage/issues. Interestingly, gluten intolerance/celiac can result in general " neuropathy " - which can affect gut motility/constipation. I would HIGHLY recommend testing for gluten intolerance/celiac (personally, I think the stool test at Enterolab is the MOST accurate test - above and beyond the serum testing that most mainstream doctors will do...). Regardless of testing and/or test results, trying a gluten free diet could be helpful. Jasper's body and response should be your guide, rather than test results. I've posted a file in the files section here on celiac/gluten intolerance and there is evidence that it is highly underdiagnosed/misdiagnosed - especially in children. (NOTE: it is usually recommended to test PRIOR to going gluten free - but you can save a stool sample in the freezer before going gluten free and send to Enterolab later. Also Enterolab testing can still be accurate for a few months after going gluten free, but I'd recommend saving a stool prior to going gluten free). Gluten Ataxia: http://www.sciencedaily.com/releases/2002/04/020424073708.htm http://www.medscape.com/viewarticle/462205 http://www.ataxiaalternatives.com/faq/index.htm#q1 http://www.thorne.com/altmedrev/.fulltext/10/3/172.pdf (don't be discouraged by the fact that they mention diarrhea as a symptom- it is a common (and the currently believed " typical " ) symptom of celiac/gluten intolerance, but research supports that constipation is also a symptom -see the file I posted) http://www.ncbi.nlm.nih.gov/pubmed/17497967?ordinalpos=8 & itool=EntrezSystem2.PEn\ trez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum (slow transit constipation related to neuropathy. This abstract does not link to celiac/gluten intolerance, but if neuropathy causes constipation and gluten intolerance causes neuropathy, then....) hth. Best, > > Hi everyone, > > I found this board from others on the eosinophilgastro board (hi Deanna!). I have been > reading old posts, and I am all freaked out now about what Miralax has been doing to my > son. > > Jasper has had abdominal pain on and off for almost two years. We tried PPIs three times > - it was hard to tell if they helped or not. Took him in again just before Christmas (07) > and the ped recommended an xray to see if he was constipated. Jasper was, so the ped > recommended Miralax, which was supposed to be very safe. We gave him a full dose every > day for a month or so. It did not help the abdominal pain, but it did help him poop, so we > kept him on it. > > Around Christmas Jasper also started to experience other symptoms, which the doctors > (eventually a pediatric GI and a neurologist) could not explain. Arm and leg pain so bad he > could not use the affected limb and sudden severe headaches. > > Then he started rolling his eyes, which he said he could not help doing. Soon after that, > when he walked through a doorway he would always knock his elbows against the door > frame. > > My husband teaches special ed and so we know the signs of OCD. But because of Jasper's > stomach problems we have been putting off seeing yet ANOTHER doctor about him. > > Now we know what his abdominal pain has been all about -- he was just diagnosed with > eosinophilic gastroenteritis, which was probably caused by so=far unknown food allergies. > But looking back, all the other stuff- the limb pain, headaches and neuro symptoms > started after the Miralax. > > Even more importantly - his stomach pain actually became more frequent after beginning > with the Miralax. > > He has been off the Miralax for about a week now. Also we took him off dairy, just > because I have a hunch about it causing him problems. So far, he's going just fine, but he > does have pain with BMs. I have been pushing fruit juice. Jasper has food aversion, so > getting him to try taking new things is a very stressful experience for him, and for me, > too. > > My first question for you all is, how do I help Jasper get the Miralax out of his system? > Keeping in mind, his food aversion means he will gladly swallow pills and capsules, and > drink powders that dissolve in juice, but he doesn't like to chew things, eat fruits and > vegetables, or drink thick drinks. > > Thanks so much! I am so glad to have found you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Another option might be to start researching detoxing in general. Here, at this list, you can find lots of options for staying off Miralax. But -- as I'm just starting to discover -- there's a world of research out there about how to detox one's body from all kinds of things. I've been experimenting with raw foods (working on increasing my kids' percentage of raw, and trying--though it's a bumpy process--to transition to 100% raw vegan myself), and find that's extremely helpful for detoxing -- so I'll just throw that out there as something you could look into. I would second 's suggestion about trying a gluten-free diet -- sometimes I think raw veganism works partly because it often ends up being GF -- but also would note that all grains, not just gluten-containing grains, might be problematic for some people. We tried the GF diet twice to no avail, and I think the reason it didn't help us was that we kept relying on rice and corn as substitutes -- a better choice would be to rely on fruits and vegetables as substitutes, IMO. What has helped my daughter so far: omega-3 supplements (we're using Coromega, but I think cod liver oil is probably better, especially if your child will swallow pills), magnesium, zinc, selenium, B vitamins, vitamin C, vitamin A (which will be in the CLO if you start using that), epsom salt/baking soda baths, aloe vera juice, probiotics, flower essences, and regular (first weekly, now biweekly) chiropractic care. Also, my daughter used to have abdominal pain. We were able to get rid of that by giving her papaya enzymes (we used the ones from GNC) and by reducing her fiber (we had been pushing fiber like crazy, hoping it would help her constipation, but it only made her worse and gave her cramps). Reducing fiber worked as a preventative; giving her enzymes worked after the pain had started. There's also an herbal remedy for gas that helps with this kind of pain--it's a ginger/fennel combination. I think it's by Gentle Naturals; we found it at Walgreens. It kept my DD out of the emergency room a couple of times! What has helped me with general detox issues (though I was never on Miralax): greens. Greens are hard to get into kids (we have some food aversions too), but I've found that if you can juice greens, then you can hide them in plum juice. If sugar is not an issue, freshly squeezed orange juice can be really good for detoxing. Hope this helps!Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Cody and your son have a lot of the same symptoms. Cody did not have abdominal pain until after the Miralax. I think that is what caused his EE. But the arm and leg pain could not be explained by any one. Cody has been off Miralax for 3 months now and he is so much better. Yesturday he ran a 3 mile race and played a baseball game, 3 months ago I was scared for his life. He is currently taking Flovent, Nexium, and Elevert (eye drops). We tried to take him off the Flovent last weekend (per GI doctor), but after 48 hours food was getting stuck in his esophagus and the abdominal pain came back. Of course, I immediatly put him back on the Flovent. He is doing better again. He also has Allergic Conjunctivitis in his eyes (it has something to do with eosiniphils also). I will tell you what each doctor has diagnosed him with: Pediatrician dx: unknown, says he is a puzzle GI dx: Eosinophilic Esophagitis (due to an allergic reaction) Allergist dx: Food Allergies to: rye, wheat, soy, and beef (per patch test non-Ige) Neurologist dx: Possible Guillian Barre Syndrome (virus in central nervous system causing muscle pain) Opthamalogist dx: Allergic Conjunctivitis in his eyes (due to an allergic reaction) I believe he had a reaction to the Miralax which caused all of this. All his symptoms (red itchey eyes, abdominal pain, muscle pain in arms and legs, and jerking in his sleep) began within days apart. All his doctors claim there is no connection each dx is a seperate situation. That is when I lost trust in them, I KNOW it is all connected! The only doctor, which we just saw for the first time 2 week ago, was the Opthamalogist that agreed there is a connection and that yes it could have all been caused by a medication. We see him again tomorrow. I do not know how to get the Miralax out of our kids systems but this is what we are doing: Lots of Gatorade (I read somewhere that Miralax can cause dehydration type stuff in the brain, I don't know if it is true or not, but trust me the Gatorade is working for us). Also he takes Epsom salt baths every night (He takes a shower and washes his hair and soaps his body first, then soaks in the Epsom salt baths for 20 minutes, do not rinse it off). That is really all we are doing for that. It is really working or either it is just wearing off slowly, I don't know but I am going to contiue to do what we are doing. Now as far as the constipation issues go I give him Sunsweet Plum Juice (all he drinks basically all day is plum juice and gatorade and a little milk) and lots of watery fruits (grapes, pineapple, cantelope, watermelon etc...) He also like cucumbers I peal them and cut them in half and he eats them like that. Also, the epsom salt baths are supposed to help with constipation. I am going to Walgreens today to get some Aloe juice and try it, lots of people say it helps. I am also going to put him back on Activia yogurt. I have not really tried any type of vitamins or anything yet. When he got sick I stopped everything. I am intested in Probiotics but I haven't had time. You might be interested in reading this: http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/resources/faq/ Deanna,Fort Worth, TexasMom to Cody age 10. Diagnosed w/EE on 2/6/08. Also severe reaction to Miralax. New Here - Detoxing Hi everyone,I found this board from others on the eosinophilgastro board (hi Deanna!). I have been reading old posts, and I am all freaked out now about what Miralax has been doing to my son.Jasper has had abdominal pain on and off for almost two years. We tried PPIs three times - it was hard to tell if they helped or not. Took him in again just before Christmas (07) and the ped recommended an xray to see if he was constipated. Jasper was, so the ped recommended Miralax, which was supposed to be very safe. We gave him a full dose every day for a month or so. It did not help the abdominal pain, but it did help him poop, so we kept him on it.Around Christmas Jasper also started to experience other symptoms, which the doctors (eventually a pediatric GI and a neurologist) could not explain. Arm and leg pain so bad he could not use the affected limb and sudden severe headaches.Then he started rolling his eyes, which he said he could not help doing. Soon after that, when he walked through a doorway he would always knock his elbows against the door frame. My husband teaches special ed and so we know the signs of OCD. But because of Jasper's stomach problems we have been putting off seeing yet ANOTHER doctor about him.Now we know what his abdominal pain has been all about -- he was just diagnosed with eosinophilic gastroenteritis, which was probably caused by so=far unknown food allergies. But looking back, all the other stuff- the limb pain, headaches and neuro symptoms started after the Miralax. Even more importantly - his stomach pain actually became more frequent after beginning with the Miralax.He has been off the Miralax for about a week now. Also we took him off dairy, just because I have a hunch about it causing him problems. So far, he's going just fine, but he does have pain with BMs. I have been pushing fruit juice. Jasper has food aversion, so getting him to try taking new things is a very stressful experience for him, and for me, too.My first question for you all is, how do I help Jasper get the Miralax out of his system? Keeping in mind, his food aversion means he will gladly swallow pills and capsules, and drink powders that dissolve in juice, but he doesn't like to chew things, eat fruits and vegetables, or drink thick drinks.Thanks so much! I am so glad to have found you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Please try Plum Smart PLUM Juice. It helps my 8 y.o. dd go along with a very good probiotic. At least 25 billion per. HTH. Yvette New Here - Detoxing Hi everyone,I found this board from others on the eosinophilgastro board (hi Deanna!). I have been reading old posts, and I am all freaked out now about what Miralax has been doing to my son.Jasper has had abdominal pain on and off for almost two years. We tried PPIs three times - it was hard to tell if they helped or not. Took him in again just before Christmas (07) and the ped recommended an xray to see if he was constipated. Jasper was, so the ped recommended Miralax, which was supposed to be very safe. We gave him a full dose every day for a month or so. It did not help the abdominal pain, but it did help him poop, so we kept him on it.Around Christmas Jasper also started to experience other symptoms, which the doctors (eventually a pediatric GI and a neurologist) could not explain. Arm and leg pain so bad he could not use the affected limb and sudden severe headaches.Then he started rolling his eyes, which he said he could not help doing. Soon after that, when he walked through a doorway he would always knock his elbows against the door frame. My husband teaches special ed and so we know the signs of OCD. But because of Jasper's stomach problems we have been putting off seeing yet ANOTHER doctor about him.Now we know what his abdominal pain has been all about -- he was just diagnosed with eosinophilic gastroenteritis, which was probably caused by so=far unknown food allergies. But looking back, all the other stuff- the limb pain, headaches and neuro symptoms started after the Miralax. Even more importantly - his stomach pain actually became more frequent after beginning with the Miralax.He has been off the Miralax for about a week now. Also we took him off dairy, just because I have a hunch about it causing him problems. So far, he's going just fine, but he does have pain with BMs. I have been pushing fruit juice. Jasper has food aversion, so getting him to try taking new things is a very stressful experience for him, and for me, too.My first question for you all is, how do I help Jasper get the Miralax out of his system? Keeping in mind, his food aversion means he will gladly swallow pills and capsules, and drink powders that dissolve in juice, but he doesn't like to chew things, eat fruits and vegetables, or drink thick drinks.Thanks so much! I am so glad to have found you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Yvette, Thanks for the tip. Could you comment on the taste of it? My son has food aversion, and it is a trial to get him to try anything different. Also, at what store do you find it? > > Please try Plum Smart PLUM Juice. It helps my 8 y.o. dd go along with a very good probiotic. At least 25 billion per. > HTH. > Yvette > New Here - Detoxing > > > Hi everyone, > > I found this board from others on the eosinophilgastro board (hi Deanna!). I have been > reading old posts, and I am all freaked out now about what Miralax has been doing to my > son. > > Jasper has had abdominal pain on and off for almost two years. We tried PPIs three times > - it was hard to tell if they helped or not. Took him in again just before Christmas (07) > and the ped recommended an xray to see if he was constipated. Jasper was, so the ped > recommended Miralax, which was supposed to be very safe. We gave him a full dose every > day for a month or so. It did not help the abdominal pain, but it did help him poop, so we > kept him on it. > > Around Christmas Jasper also started to experience other symptoms, which the doctors > (eventually a pediatric GI and a neurologist) could not explain. Arm and leg pain so bad he > could not use the affected limb and sudden severe headaches. > > Then he started rolling his eyes, which he said he could not help doing. Soon after that, > when he walked through a doorway he would always knock his elbows against the door > frame. > > My husband teaches special ed and so we know the signs of OCD. But because of Jasper's > stomach problems we have been putting off seeing yet ANOTHER doctor about him. > > Now we know what his abdominal pain has been all about -- he was just diagnosed with > eosinophilic gastroenteritis, which was probably caused by so=far unknown food allergies. > But looking back, all the other stuff- the limb pain, headaches and neuro symptoms > started after the Miralax. > > Even more importantly - his stomach pain actually became more frequent after beginning > with the Miralax. > > He has been off the Miralax for about a week now. Also we took him off dairy, just > because I have a hunch about it causing him problems. So far, he's going just fine, but he > does have pain with BMs. I have been pushing fruit juice. Jasper has food aversion, so > getting him to try taking new things is a very stressful experience for him, and for me, > too. > > My first question for you all is, how do I help Jasper get the Miralax out of his system? > Keeping in mind, his food aversion means he will gladly swallow pills and capsules, and > drink powders that dissolve in juice, but he doesn't like to chew things, eat fruits and > vegetables, or drink thick drinks. > > Thanks so much! I am so glad to have found you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 How long are you seeing it takes for the PlumSmart to work? I bought my ds a container of it on Sunday, it's gone now and nothing yet... Thanks! New Here - Detoxing> > > Hi everyone,> > I found this board from others on the eosinophilgastro board (hi Deanna!). I have been > reading old posts, and I am all freaked out now about what Miralax has been doing to my > son.> > Jasper has had abdominal pain on and off for almost two years. We tried PPIs three times > - it was hard to tell if they helped or not. Took him in again just before Christmas (07) > and the ped recommended an xray to see if he was constipated. Jasper was, so the ped > recommended Miralax, which was supposed to be very safe. We gave him a full dose every > day for a month or so. It did not help the abdominal pain, but it did help him poop, so we > kept him on it.> > Around Christmas Jasper also started to experience other symptoms, which the doctors > (eventually a pediatric GI and a neurologist) could not explain. Arm and leg pain so bad he > could not use the affected limb and sudden severe headaches.> > Then he started rolling his eyes, which he said he could not help doing. Soon after that, > when he walked through a doorway he would always knock his elbows against the door > frame. > > My husband teaches special ed and so we know the signs of OCD. But because of Jasper's > stomach problems we have been putting off seeing yet ANOTHER doctor about him.> > Now we know what his abdominal pain has been all about -- he was just diagnosed with > eosinophilic gastroenteritis, which was probably caused by so=far unknown food allergies. > But looking back, all the other stuff- the limb pain, headaches and neuro symptoms > started after the Miralax. > > Even more importantly - his stomach pain actually became more frequent after beginning > with the Miralax.> > He has been off the Miralax for about a week now. Also we took him off dairy, just > because I have a hunch about it causing him problems. So far, he's going just fine, but he > does have pain with BMs. I have been pushing fruit juice. Jasper has food aversion, so > getting him to try taking new things is a very stressful experience for him, and for me, > too.> > My first question for you all is, how do I help Jasper get the Miralax out of his system? > Keeping in mind, his food aversion means he will gladly swallow pills and capsules, and > drink powders that dissolve in juice, but he doesn't like to chew things, eat fruits and > vegetables, or drink thick drinks.> > Thanks so much! I am so glad to have found you!> > > Quote Link to comment Share on other sites More sharing options...
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