Anyone use Miralax?

    • Anonymous
      August 6, 2009 at 9:09 am

      Emily is having stomach pains again every single day. They seem to come on when she’s eating or shortly after eating.

      She says that she’s having trouble with bowel movements & when she does go they are “big”. I’ve seen a few of them & yeah…they are surprisingly large.

      A friend of mine has a daughter with similar issues & her dr said to put the child on Miralax. Friend said it really helps her daughter. I’m thinking we should try it.

      Just wondering if anyone here has any experience with it?

      We’ve taken Emily to her pediatrician & a gastro dr for these stomach pains. They have been an on-going problem for about 4 years now. The gastro wanted to sedate Emily & run a scope to look for an ulcer but her neuro refused because she’s been sedated so many time. The pediatrician had no idea what to do & suggested Prevacid – which has never really helped.

      Thanks.
      Kelly

    • August 6, 2009 at 10:35 am

      Abby usues it.
      Dawn

    • Anonymous
      August 6, 2009 at 11:01 am

      Hi Kelly,

      I tried Miralax a few years ago as I’ve always had a difficult time, especially after GBS. It didn’t work for me. ๐Ÿ™

      If Emily is having larger than normal movements, perhaps a stool softener can help or even a cup of warm prune juice (if she can get pass the taste).

      How much water does she drink? If possible, perhaps have her drink more water and apple juice as well.

      Last resort….GNC has Super Colon Cleanse (powder) which is all natural. The taste is awful, but I’ve found that I can drink it if I mix it with orange juice.

      Have the doctor tried to determine what’s happening by simply listening to her bowel sounds?

      I apologize for all the questions and suggestions, especially since you specifically asked about Miralax, but bowel problems can take a toll on you.

      Hope she finds relief.

      Take care,

      Tina

    • Anonymous
      August 6, 2009 at 11:47 am

      I use to have my daughter on it as my family has issues with extreme constipation. It did work with no problems but I didn’t like using a chemical on someone so young. Instead I started giving her peaches and pears everyday (full fruits size, not just one or two small pieces). The “P” group (peaches, pears, plums, peas, prunes) really helps with constipation. Grapes and raisins really help too. I cut back on apples and banana and other constipating foods. Considering our family history I was surprised that the foods worked so well. We haven’t used Miralax for many years now. It’s just a thought in case you haven’t tried it yet.

      Also apple and pear juice (especially pear juice) made a big difference when my daughter was a toddler…try those too.

    • Anonymous
      August 6, 2009 at 1:07 pm

      Tina – Emily drinks quite a bit of water everyday. We don’t drink pop often so she only drinks milk & water, with the occasional fruit juice. She only gets 1 cup of milk a day because we noticed too much milk causes her issues too. If she drinks skim or 2% milk she gets diarrhea so she can only have vitamin D.

      She’s had bowel issues since she was a baby. We used to give her prune juice & that helped but as she’s gotten older she won’t drink it anymore. For awhile we were giving her plum juice, which really helped but she got sick of it.

      The dr’s have tried everything to figure out what is going on – except the scope. They listen to her bowel sounds & everything sounds fine.

      Kristen – Emily is pretty much a vegetarian so her diet consists of mostly fresh fruits & veggies. She eats peaches, raspberries, blueberries & watermelon quite often – at least 2-3 of those every day. She’s also started eating salads too for the roughage. She’s not a fan of pears or raisins & she’s sick of grapes. She was eating peas for awhile but has stopped. She also isn’t the biggest fan of plums.

      She has naturally low potassium so we have to feed her potassium rich foods such as strawberries, potatoes, broccoli, tomatoes & cucumbers. She will sometimes eat 2-3 bananas a week, but that’s only when she’s not having bowel issues.

      I think the potassium rich foods may contribute to the bowel issues but we have no other choice but to continue with them. It’s just a never ending cycle. We’ve done blood tests to see if a daily vitamin would help with the potassium & it just isn’t enough so we added in the potassium rich foods & her blood work comes out really good.

      I have tried holding off on giving her things like Miralax because I wanted to try the more natural approach, but it’s just not working right now. I don’t think it’s something we would use all the time – just when she’s having problems. It’s kind of a last ditch effort when all else fails.

      Thanks for the suggestions.
      Kelly

    • Anonymous
      August 6, 2009 at 3:21 pm

      [QUOTE=Emily’s_mom]
      I think the potassium rich foods may contribute to the bowel issues but we have no other choice but to continue with them.
      Kelly[/QUOTE]

      Or could Emily instead be having a magnesium issue? Is she is getting plenty of fish, cooked spinach, almonds, beans, etc (I will assume yes since you research stuff, but still something to think abt). Low magnesium would also reduce efficiency of the Na/K pump therefore making potassium entering the cells less likely. Low mag also contributes greatly to constipation. Helps muscle twitches and spasms (in case she gets those).

      My daughter is vegetarian too. ๐Ÿ™‚

    • Anonymous
      August 6, 2009 at 4:41 pm

      Magnesium has checked out just fine.

      She won’t eat fish. She does snack on almonds & will sometimes eat beans.

      Thanks for thinking about it though. I’m thinking I’ll have her dr order another blood test just to check things out again.

      Kelly

    • Anonymous
      August 6, 2009 at 6:11 pm

      i had gbs now cidpandd do have constipation isuues. I went from IBS to now constipation. WE tried the p’s and the worked somewhat but i used miralax for a long time. I yhink i will have to go back to it now. i worked well for me.

    • Anonymous
      August 6, 2009 at 6:24 pm

      [QUOTE=Emily’s_mom]Magnesium has checked out just fine.

      Kelly[/QUOTE]

      Serum values and tissue values can be/and often are very different. Magnesium is one of those elements that the RDA is suspected to be ~300% too low (and a push is being made to increase it…but gov is slow abt those things).

      If she were mine, knowing her health history, I’d be supplementing…but I’ve been researching it for a while.

    • Anonymous
      August 7, 2009 at 1:31 am

      Hi Kelly,
      They can test for heliocobacter which causes ulcers without doing a scoping.
      See the following info. All my best wishes to little Emily.
      Laurel

      HELICOBACTER PYLORI

      Helicobacter pylori infections (H. pylori) cause gastric ulcers (stomach ulcers).
      What is an ulcer?

      An ulcer is a sore or hole in the lining of the stomach or duodenum (the first part of the small intestine). People of any age can get an ulcer and women are affected just as often as men.

      Helicobacter pylori (H. pylori) is a bacterium that lives on the lining of the stomach. Although we used to think that spicy food, acid, and stress were the major causes of ulcers, we now know that nine out of ten ulcers are caused by H. pylori. Medicines that reduce stomach acid may make you feel better, but your ulcer may come back. Here’s the good news: Since most ulcers are caused by this bacterial infection, they can be cured with the right antibiotics.

      What are the symptoms of an ulcer?

      The most common ulcer symptom is gnawing or burning pain in the abdomen between the breastbone and the belly button. The pain often occurs when the stomach is empty, between meals and in the early morning hours, but it can occur at any other time. It may last from minutes to hours and may be relieved by eating food or taking antacids. Less common symptoms include nausea, vomiting, or loss of appetite. Sometimes ulcers bleed. If bleeding continues for a long time, it may lead to anaemia with weakness and fatigue. If bleeding is heavy, blood may appear in vomit or bowel movements, which may appear dark red or black.

      How can your health care provider tell if you have H. pylori?

      Your health care provider may choose to use any of the following tests to determine if your ulcer is caused by H. pylori.

      * Blood tests: A blood test can confirm if you have H. pylori. To perform this test, your health care provider sends your blood sample to a lab.
      * Breath tests: A breath test can determine if you are infected with H. pylori. In this test, you drink a harmless liquid and in less than 1 hour, a sample of your breath is tested for H. pylori.
      * Endoscopy: Your health care provider may decide to perform an endoscopy. This is a test in which a small tube with a camera inside is inserted through the mouth and into the stomach to look for ulcers. During the endoscopy, small samples of the stomach lining can be obtained and tested for H. pylori.

    • Anonymous
      August 7, 2009 at 11:35 am

      Kelley,
      Miralax is what was used for me when “things just didn’t want to work right” I took it everyday for about 6 months but then again I was an adult and not a child. I don’t know what pediatricians advise these days but what I liked about it was it could be mixed in juice and it was pretty much tasteless…..Does Emily like Fiber One cereal? Personally I like the caramel flavor and it provides alot of fiber in one sitting but I think that tastes good.
      Hope your summer is going well otherwise! Take Care,

    • Anonymous
      August 7, 2009 at 2:20 pm

      Fiber one bars are really good, too. The apple streusel are the best.
      Easy to eat.

      just a thought.

    • Anonymous
      August 7, 2009 at 8:36 pm

      Thanks all –

      Kristen – We do supplement with a daily vitamin. I’ve been very reluctant to use any more than that because I’ve read too many horror stories about supplementing gone wrong. I’d love any links to good info you could pass on to me.

      I’m not sure of what the magnesium levels have been. That would require me digging through my binder &, honestly, I am too beat to walk to the other side of the house to get it, LOL. It’s been a long day.

      Laurel – I originally thought she had H. Pylori – I was so very convinced that was what the problem was. We had the blood test done & it came back positive but apparently IVIG alters those results. She was too young for the blow test. So the neuro spoke with the gastro & they decided to treat her for H. Pylori anyway. It didn’t make any difference. We’ve had her on Prevacid on & off for years & it makes no difference either.

      Ulcers do worry me though. Emily is such a worry wart – she worries about EVERYTHING. We do know that sometimes her stomach aches are caused by worrying but those tend to be different than the kind we are dealing with now.

      Jan – Emily will sometime eat Fiber One cereal. She goes through phases with it & it does help some. We’ll try the caramel flavored kind…maybe that will entice her. My friend’s daughter has been on Miralax for about 6 months now. She’s responded really well. I know another lady who had to put her 2 year old on it & she was on it for about 2 years. I don’t want it to be an all the time thing just something that can help her along when she really needs it.

      Stacey – We’ve tried the fiber bars & they help some – like the fiber cereal Emily gets sick of them. She’s not really a breakfast bar kind of kid. She is a picky eater. She doesn’t like anything remotely sticky & she’s not into candy too much. She LOVES fruits & veggies though, so I don’t complain too much.

      I don’t think the stomach issues are related to the CIDP. I was talking with my husband & we remember her having constipation issues as young as 2 months old. My Grandma had the same issues too. Also Emily is doing really, really well right now (KNOCK ON WOOD!) with the CIDP. I would think if the stomach issues were related to the CIDP they wouldn’t show up when she’s doing well.

      Thanks a million for all the ideas. I really appreciate it.
      Kelly

    • Anonymous
      August 8, 2009 at 12:10 pm

      Selah has never had problems with constipation until she started ivig. The Rheumatologist at Nationwide Childrens said to start her on Miralax as she has been having hard and large BM. I give it to her about evveryother day. It looks really natural and I believe that Selah’s stomach problems are from autoimmune and she has never had problems before. She is a big drinker and drinks like 25 ounces of juice a day and probably 15 ounces of milk. We are having similar problems it sounds like.

    • Anonymous
      August 8, 2009 at 12:25 pm

      Pam – IVIG makes Emily’s bowel movements very loose. About 2 hours after each infusion she runs to the bathroom – I think it’s all the protein.

      I called you the other day & left a message.

      Kelly

    • Anonymous
      August 8, 2009 at 6:08 pm

      Hi Kelly,
      Has Emily been tested to see if perhaps her CIDP has hit her autonomic system?
      It has with me, as you know, and besides hitting other organs/systems, it hit my digestive system, causing Dysautonomia with dysphagia and gastroparesis and esophageal dysmotility.
      Basically, the CIDP hit the nerves controlling the stomach, and when food goes into the stomach, it will just sit there as the stomach can no longer work well, and “dump the food”. If the food just sits there, it causes stomach pain, as well as nausea sometimes, and worse case–vomitting. That is why I have to take 3 pills to get the stomach to dump, (Reglan and Erythromyacin are two of the meds). The CIDP also slowed down the motility of the bowels, thus causing constipation. I HATE taking laxatives. I tried stool softeners, but they didn’t work. So, I wait for about 7-10days, and have 3 very large “ones” all on the same day. If it goes past 10days, then I take a lax.

      I do hope the CIDP has NOT hit her autonomic system. The test is simple–it is a “Skin Biopsy”, where it is done in the doctor’s office, (my neuro did mine), where they just numb a small area of an affected thigh, use a “thick needle”, and a quick in and out, and they send it off to the lab. If the result shows, “small nerve atrophy”, there is a good probability that the CIDP has it or will hit the autonomic system.

      Again, hoping that this is NOT the answer.
      All the best,
      KEDASO
      (Ken)

    • Anonymous
      August 9, 2009 at 11:26 am

      Hey Ken – We are sure the CIDP hasn’t moved to her autonomic nervous system. She’s had constipation issues her whole life – starting at 2 months. She didn’t get CIDP until she was 4.

      Emily has been improving for awhile now. She hardly ever walks on her tippy toes & her eyes look good (cranial nerve involvement). I highly doubt the CIDP would progress with everything else going so well.

      In the last few months of my Grandma’s life she only had a bowel movement every 2 weeks or so. I know how uncomfortable she was & I feel really bad you are going through that too.

      Kelly

    • Anonymous
      August 10, 2009 at 10:45 am

      [QUOTE=Emily’s_mom]

      Kristen – We do supplement with a daily vitamin. I’ve been very reluctant to use any more than that because I’ve read too many horror stories about supplementing gone wrong. I’d love any links to good info you could pass on to me.

      Kelly[/QUOTE]

      I agree, supplements may do some more harm than good. I think food choices are superior…if they are available. you will find that many nutrients have toxic doses when used in pill form, yet food sources of those same nutirents do not have a toxic dose (ie you can eat more than what you can take via vitamin)
      The best thing I ever in in my life years ago was keep a journal of what I ate during the day. Peoples perception of what they eat and the reality of what they eat can be/and studies have shown are very different.
      Try journaling all of Emily’s food intake for 3 days. Then after that (and not before so that you see what she really gets with no intervention) go to [url]http://whfoods.org/nutrientstoc.php[/url] and go down to the section that corresponds to amounts of nutrient in foods. compare amounts to the foods eaten. The section below that says what amounts she needs for her age…although realize that these amounts often were determined based off of synthetic dosing vs natural source dosing (ie synthetics can have toxic doses even though their natural counterparts do not).
      Check Mg, Ca, K, copper, zinc and iodine. I mentioned copper and zinc as I recently read that they can lead to autoimmune disease BUT you can google and read the limited studies done on copper deficiency, zinc excess and CNS demyelination. Iodine is important with relation to myelin (supports thyroid which important for remyelination of CNS) but the food chart shows milk as a supply of iodine and I have been reading more info from farmers/etc that say that they no longer use iodine…hence I no longer think of milk as a source of iodine. That all gets muddied by poor toxic studies many years ago which inaccurately gave a toxic dose that is just a fraction of what it should be.
      There are so many important nutrients on that page, some directly linked to autoimmune diseases. if my child had GBS or CIDP, I’d be looking at their nutrition just to make sure I had that in control at least. That is just me though.

    • Anonymous
      August 10, 2009 at 6:22 pm

      Thanks Kristin. That was very informative. I’m going to save that link & use it, in 3 days.

      Kelly

    • Anonymous
      August 17, 2009 at 5:12 pm

      I noticed about eight weeks ago Mason started having problems going to the bathroom. He said it hurt and he would hold it as long as he could. Everytime he went the toilet would over flow. Allen acused him of using to much toilet paper. Then last night allen came to me, he said It was Masons stool not the paper. Masons stool was very dark and very large. I went to wally world and got him some childrens chewable stool softner. It has not worked yet, we will see when he gets home from school. I noticed he was asking for more gas-x, and he was getting a little fussy. I am not sure what brought this on. There still is only three or four things he eats!! Mirlax does not work for him, it did’t work for hannah either. She drinks the fiber sure. Mason liked the tablets, he said they tasted good. I was happy,no fighting to take!! If you have a answer let me know! ๐Ÿ™‚

    • Anonymous
      August 17, 2009 at 6:45 pm

      Hey Trish – How is Mason doing? Did he get back on treatments?

      I gave Emily Miralax for 2 days, only half doses. They did do the trick & her bowel movements were back to normal. We skipped a few days & she had another larger stool. We’re thinking we’ll do the Miralax maybe 3-4 times a week for right now & see if that helps.

      Kelly

    • Anonymous
      August 21, 2009 at 7:24 pm

      Have you tried psyllium husk? It’s natural and very effective. Make sure she drinks lots of water when she takes it. And probably best to check with her Dr. for a child her age.

      Is she lactose intolerant? It sounds like she might be. If she’s getting sick during or after eating, is your doctor looking at food allergies or intolerances?

      I’ve been reading up on how auto-immune issues can be related to digestive health (75% of the immune system lives in the digestive tract), so I’m taking a long look at my own digestive health (with the help of my doctor). Even though my GBS/MFS is behind me, and I’m feeling pretty good, I am addressing some – what I consider mild – digestive issues (lactose intolerant), which I believe was caused by prolonged antibiotic use in my 20’s (prior to this, I was never sick – and after, I started getting lots of sinus infections, etc.). My goal in doing this is to prevent another episode of GBS/MFS. I know it’s rare, but if it can happen again, I want to do my part to prevent it.

      After almost 3 months of taking probiotics (Dr. prescribed), cutting sugar, soy, and gluten out of my diet (not sure if gluten is a problem, but giving my body a break, just in case), I am feeling better than ever. Going back for tests in October to see if my immunity has improved.

      Anyway, just mentioning it, in case it resonates with anyone else. I seem to see a lot of discussion on digestive health. Some people link GBS to their digestive issues, when maybe we should look at it like digestive issues may be linked to our GBS.

    • Anonymous
      August 22, 2009 at 11:27 am

      I was given Mirolax in the hospital. It was supposed to make your bowel movements become more regulated. I was having problems because of all the pain meds I was on. Just a word of caution on the mirolax-don’t make the doses too large. Instead of being more regular, I had to speed to the bathroom for extremely violant bowel movements after every meal! Since I have been home I tried Senekot stool softeners first and they helped. I then went on to just adding some fiber cereal to my yogurt or regular cereal and have had no problems since. It adds a nice little crunch and is not noticable as a “bad” taste or anything.
      Shie

    • Anonymous
      August 22, 2009 at 1:50 pm

      Just to add to the confusion, the doctor prescribed Mirolax because of a little problem caused by the pain meads. Long story short – it don’t do a thing. The store brand fiber and water seem to work for me. So it seems that “go power” ๐Ÿ™‚ depends on the person’s physiology. But us “old” people are not a good template to measure what would be best for a younger person. Sorry I couldn’t be more helpful.

    • Anonymous
      August 23, 2009 at 1:27 am

      thru it all again?
      First off, from ALL I have read….constipation IS a legit anecdotal diagnostic idication? Tho it seems to have ‘disappeared’ from most sources of late? It was there up to the beginning of this year… ????
      All I know is I HAD it prior to my onset and also relapse.
      Since then I’d fallen and was hospitalized plus surgery.;.. the pain-meds did the ‘stopping up’ number on me big time.
      I agree that Fiber One has helped me immensely! While in rehab [where the food was AWFUL!] My DH left me a box and I’d eat that instead. WORKED! But, you do have to drink a lot of fluids? More the better THEN, beware? When it wants to ‘happen’ it’s gotta be a very NOW thing. Since hospitalized I’ve been diagnosed w/an ‘intesntinal’ issue which could complicate things? BUT I believe that it’s a result of the CIDP.
      This whole thing is bad enuf for a grown up!!! Your son is far, far braver than I on any level! No doubt about it.
      Try the fiber one stuff and there’s even a web site of other goodies like pancakes and things? All I know is that it’s the most painless way to deal with some things than I could have expected!
      My gosh I won’t go into the qualities of POOP any more! Hugs!