Re: Re: Too All -- regarding stinging red bottom, grainy poop, cloudy urine, etc

[Guest guest]

LOL ! Thanks Auntie LeeAnn !

Yes, started the very slow weaning in January, like 10% every two or three

weeks.

She was taking 3/4 of a 5 mg tablet and is now at less than a 1/4 of that

tablet at bedtime

plus melatonin. The school is freaking out and cannot believe how she has

changed for the better.

The thing that I'm so thrilled about is that I have tried many other times

to do this and the result was

self aggression and aggression and no sleep. I really do think that the

Nordic Natural Pro-EFA plus

the CLO has helped with that weaning..................

With this, plus being off miralax she is on no prescription drugs! ( when I

take out the final 1/4 tablet).

Yeah !

Too All -- regarding stinging red bottom, grainy

> poop,

>> cloudy urine, etc

>>

>>

>> > The above symptoms are classic symptoms of oxalate dumping.

> Oxalic

>> > acid is a very harsh chemical -- and is a by product of the

> breakdown

>> > of PEG by some types of bacteria. There are 2 theories to

> oxalates --

>> > one is using a low oxalate diet, the other is the fat soluble

> protocol -

>> > I prefer the latter.

>> >

>> > Type oxalate and VSL#3 in search and you will get some posts

> related to

>> > the protocol such as this one.

>> >

>> > http://health.groups.yahoo.com/group/miralax/message/6113

>> >

>> >

>> > The best thing to 'mop up' the oxalates is high dose probiotics

> and

>> > magnesium citrate. Baking soda and magnesium sulfate (epsom

> salt)

>> > baths help too.

>> >

>> > This theory is not in mainstream medicine -- but most naturopathic

>> > doctors and chiropractors would be aware of it I'm sure.

>> >

>> >

>> >

>> > ------------------------------------

>> >

>> >

[Guest guest]

Thank you for all the advice, I will join the vitamin K group today and check it out. That is weird that you mentioned the oxalate issues, I have never heard of them until joining this group, but I have noticed after eating potatoes (thanks to info i've read off this group, or I would not have even known to look for behaviors from foods). that he is irritable, and also somewhat withdrawn, I have noticed behavioral changes since this all happened in January, he is (sometimes) like a totally different kid. See, potatoes are (suposedly) a safe food for him anyway you cook them baked, fried, mashed, so we have tons of pototoes on hand for something easy. Needless to say he has been eating them all the time, it also helps him to gain weight. When he got sick he lost 8 lbs., it's a battle everyday to keep weight on him. He is very active, he is on 2 baseball teams and a

runners club. He runs 4 miles a week, so putting weight on him in near impossible. All the docs claim his ability to stay active has helped him push through this, he pushes himself in everything he does, he also maintained all A's all year, he has missed 16 days of school since January, he usually makes perfect attendance almost every year. If you see him and know all the activities he is involved in you would never guess he is so sick. It comes and goes, it lasted a good 2 months straight, he is slowly getting better, but he is never back to the way he was before January. His paleness and his veins and his red eyes, I describe it as veiny in his body and eyes. Are red veiny eyes a symptom of the renal tubular acidosis? I know what ever he has the red veiny eyes play a part in all this. I know when that goes away I'll know he is better, by the way that appeared in January and has not faded away no

matter what kind of prescription drops are given to him. He usually has very pearly clear white eyes. Of course the doc play it off as allergies, none of this is really allergies at all is it? I think I am going to take him off (slowly) this elimination diet (rye, wheat, soy, and beef) and put him on this low oxalate diet and maybe even oxalate free diet (if possible), and just see for myself how this goes. All you mothers have really been such a GOD sent for me and my son. I could not have made it without you, you are the only people on this planet that don't think I'm crazy, including my husband. He just asked me, "is that all you're going to do is research this for the rest of your life?" Well, if that is what it takes I will, but I think we might have it all figured out. I just updated my husband on everything. He said all this information I have gotten today from this group, makes more since that

any thing the doctors have told us. I am so appreciative for all of you. You are making a difference. May God bless all of you. I am now going to reseach all this new information, print out some things including the FDA sheets and take them to the doc and have him do some testing for this renal tubular acidosis. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome).

Too All -- regarding stinging red bottom, grainy poop, cloudy urine, etc> > > The above symptoms are classic symptoms of oxalate dumping. Oxalic > acid is a very harsh chemical -- and is a by product of the breakdown > of PEG by some types of bacteria. There are 2 theories to oxalates -- > one is using a low oxalate diet, the other is the fat soluble protocol -> I prefer the latter.> > Type oxalate and VSL#3 in search and you will get some posts related to > the protocol such as this one.> > http://health. groups.yahoo. com/group/

miralax/message/ 6113 > > The best thing to 'mop up' the oxalates is high dose probiotics and > magnesium citrate. Baking soda and magnesium sulfate (epsom salt) > baths help too.> > This theory is not in mainstream medicine -- but most naturopathic > doctors and chiropractors would be aware of it I'm sure.>

[Guest guest]

OMG YES! Exactly like that. Some days are worse than other (the worst being like that picture). It won't go away, just like his veiny body, the symptom came and it never left. Some symptoms come and go (like body pains and night jerks). But, the veiny eyes and body stay, just some days are worse than others.

Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome).

Too All -- regarding stinging red bottom, > grainy poop, cloudy urine, etc> > > > > > The above symptoms are classic symptoms of oxalate dumping. Oxalic > > acid is a very harsh chemical -- and is a by product of the > breakdown > > of PEG by some types of bacteria. There are 2 theories to >

oxalates -- > > one is using a low oxalate diet, the other is the fat soluble > protocol -> > I prefer the latter.> > > > Type oxalate and VSL#3 in search and you will get some posts > related to > > the protocol such as this one.> > > > http://health. groups.yahoo. com/group/ miralax/message/ 6113 > > > > The best thing to 'mop up' the oxalates is high dose probiotics > and > > magnesium citrate. Baking soda and magnesium sulfate (epsom salt) > > baths help too.> > > > This theory is not in mainstream medicine -- but most naturopathic > > doctors and chiropractors would be aware of it I'm sure.> >>

[Guest guest]

LeeAnn, Are you doing the LOD for oxalates? How about Cal Citrate? Abby

bruised in one huge spot

when I was started dosing 1/4 tsp. with breakfast and dinner. What do you

think of calcium carbonate?

Less problematic?

Kathy

Too All -- regarding stinging red bottom,

grainy poop, cloudy urine, etc

>

>

> The above symptoms are classic symptoms of oxalate dumping. Oxalic

> acid is a very harsh chemical -- and is a by product of the

breakdown

> of PEG by some types of bacteria. There are 2 theories to

oxalates --

> one is using a low oxalate diet, the other is the fat soluble

protocol -

> I prefer the latter.

>

> Type oxalate and VSL#3 in search and you will get some posts

related to

> the protocol such as this one.

>

> http://health. groups.yahoo. com/group/ miralax/message/ 6113

>

> The best thing to 'mop up' the oxalates is high dose probiotics

and

> magnesium citrate. Baking soda and magnesium sulfate (epsom salt)

> baths help too.

>

> This theory is not in mainstream medicine -- but most naturopathic

> doctors and chiropractors would be aware of it I'm sure.

>

------------------------------------

[Guest guest]

LeeAnn, He's only been off it since February of this year.............mommtlc wrote: This is just my opinion, but the EE diagnosis has thrown you off a track a little. I think your son is suffering from a severe reaction to PEG, and it looks similar to renal tubular acidosis. Please join the vitamin k group and read for about a week before you ask any questions -- there's a ton of information to wade through. If your son was mine -- here's what I would do:Per

's recommendations on the Vitamin K group, get the labs done.Epsom salt and baking soda baths -- every day IMO. Start with 1 cup each and 15min soak and build up to several cups over the next month or two.Add B6 and magnesium (preferable citrate)-- here's the study from a long time ago http://www.ajcn.org/cgi/reprint/20/5/393.pdfAdd fish oilEliminate the very high oxalate foodsOne VSL#3 sachet per day. You need billions!Measure first morning urine PH. The ph-ion strips is what I've used. I'm guessing -- but I'll bet $ that his PH will show up as alkaline. First morning urine should be acidic -- shows that the kidney's are working and clearing acids from the body. If this is correct, post back and I'll give you some options that worked for us.Your son's signs of 'bone pain' and road map veins SCREAM of oxalate issues. He

probably has a huge load of them in his body -- socked away in his bones. It will take YEARS to get them out and you will have to do a supplement balancing act to make it as painless as possible. My son was on miralax for 1 1/2 years -- and he's been off of it for almost 2 years. He still has symptoms of oxalate dumping. BTW -- some of the symptoms, diet recommendations, etc correlate with uric acid clearing problems =gout. An old man's disease!Don't worry about posting with reactions and observations on a daily basis. I think we all learn from reading about other's symptoms - what helped, what didn't etc. Does your son get easily chilled?Any behavior changes?What's the constipation status right now?>> When you say liver support and muscle testing, what is that and how do

you go about it? I asked Cody's doctor about testing his kidneys, I am concerned about kidney problems. See, he has EE, but not the typical symptoms. He never had outward symptoms of EE, it was just found in search of something else. His symptoms are: paleness, red eyes, muscle pain, & jerks in his sleep. He has never had EE symptoms, like I said we just accidently stumbled across that. Here is a summary of what happened to him:> > April 2007 (age 9) - his pediatrician prescribed Miralax for him 17 grams a day to treat his constipation he has had since he was 2, (I was scared of it so I only gave him 1/2 of that & not every day).> December 2007-pedi appt constipation worsened I also noticed he was pale and he was some what veiny, mentioned it to the doc (I never even thought about it being the miralax) He said it is just winter and he hasn't seen the sun in awhile,

he didn't seem pale to him. He refers him to a GI for his chronic constipation.> January 3rd 2008 - GI doc prescribes Miralax 17 grams a day & 1 exlax square (adult strength) a day & to stay on those for 1 year. I was very uncomfortable with that, he convinced me how safe it is & how Cody really needed it, I agreed to do it. He also scheduled him for the balloon test (anal).> January (exact date unknown) severe red itchy eyes (I thought was allergies & I treated it with saline drops, which did not help)> January 11th 2008- balloon testing done.> January 12 2008 - buckled over with abdominal pain for about an hour, he stayed in the kitchen chair the whole time it hurt, he wouldn't move. He was better and carried on with his normal day, but wasn't quite right.> January 15 2008 - (at basketball practice) complained of both arms & both legs hurting, had to lay down for 20 or 30

minutes, he was hurting so bad he couldn't walk. I finally got him home, he layed down in the floor soon as we walked in the door, said he wanted to just sleep there. I moved him to the couch, he slept there, I gave him motrin.> January 16 2008 (am) - he was in screaming pain, the muscles in his arms and legs hurt so bad he could not move, he was lay face down, and could not even roll over, his body was also very vieny, the veins seemed to stick out a little or something. - mother's instinct told me it was the combination of the miralax and the exlax and that he was dehydrading, his veins were very apparent and kind of sticking out. I had to carry him to the car (78 lbs), we went to the ER, I told them I thought he was dehydrating and told the ER doc what meds he was on, the doc argued with me and said that a GI doc would not prescribe both exlax and miralax at the same time, that I must have mis

understood him, OH NO I DID NOT, I QUESTIONED THE GI ABOUT THE SAME PROBLEM. Anyway, of course I won that argument, all the records are in the network of doctors including the children's hospital. Anyway they did urine and blood test, they claimed he was not dehydrating. Cutting to> the chase here, they sent him home with "viral symdrome". I told them this was not a virus, I know my child and he is not my first one, he is my 5th one, and I have been through many virus' and flu and have never one time ended up in the ER with any of my kids having just a virus. They did strep test, flu test, mono test, inflammation test, etc... still "virus syndrome" all the lab work came back normal.> January 16, 2008 (pm) - back to the ER, same symptoms, paleness, red itchy eyes, severe muscle pain (his skin was pink in the painful areas,no one would listen to that

symptom) only now he had a high fever also 103.7 & abdominal pain. one hour after giving motrin, they gave him tylenol and I wiped him down with cold towels, the fever went down to 102. They repeated alot of the same, still negative all was normal, the only thing that changed was his inflammation levels had escalated since that morning, they didn't seem concerned. > January 17 2008 - I took him to the GI, I was concerned about the meds causing this, or course he said no it is not the meds. I asked him about the balloon testing, if that could cause all this and of course he said no. I also asked him about his constipation issue, if he had thought he might have any blockages and maybe that is what was making him sick, he decided to schedule him for a colonoscopy and said since he is having other issues he said we might as well do a scope, to check for ulcers in

his stomach. He said he would give him an antibiotic just to see if that would help him, he thought he might have a sinus infection, WHATEVER! I gave him the antibiotic - it did not help.> January 19 2008 back to the ER, only this time I took him to a different hospital, not the children's hospital. They thought he might have meningitis, and transported him by ambulance to the children's hospital. When we got there they did not see any reason to test, he did not have the classical symptoms of meningitis. This doctor prescribed some eye drops and said "viral syndome". The doctors would not listen to any thing I had to say, "viral syndrome" was the going thing.> February 5 2008 - cleanout for colonoscopy and scope, he took the Golytely Pak. First the 4 pills then he began with the first 8 ounces of powder & water he buckled over with severe abdominal pain, and he was crying and begging to not

have to drink it. After 30 minutes, he was in the tub soaking hoping that would help the pain stop. I convinced him he really needed this to just try again, he took a couple of sips and said his stomach felt like it was going to blow up it was so full. he buckled over again sreaming bloody murder and vomited 4 times, this is not how he normally acts, it was out of character for him. I then called the GI, they were out to lunch. I called poison control, that is when I read the medication ingredients, POLYETHYLENE GLYCOL 3350, what??? OMG! poison contol said not a typical side effect of the drug but go to the ER anyway. On the way he started feeling so much better, we got to the ER went through triage and then I decided to> leave and go see the GI, since the ER docs only know "viral syndrome". The GI said try magnesium citrate, we really need to do the colonoscopy and figure out what is going on. We used the

magnesium, he responded good to that.> February 6 2008 - colonoscopy & scope - colonoscopy was normal, the scope - abnormal, that is how they found the EE and his esophagus was very inflammed also. Prescribed Nexium, Flovent, and Singulair. He referred him to an allergist for testing.> February (around 10th or 11th?) 2008 - Allergy doc - prick test - negative. doc said all the meds she required him to be on was Nexium. I took him off Singulair immediatly.> February 18 through the 21st 2008 - patch test...positive to rye, wheat, soy, and beef. (come to find out later, it was a mild positive). elimination diet begins. She said she could not explain the muscle pain and the night jerks maybe he needs to see a neurologist for that dx.> February 2008 - I took him to the neurologist- he said it is Gilliam Barra Syndrom (he strongly believes) and that he is past the worst of it and should

completely recover within 12 months of onset and I will see a great improvement within 6 months. He said for the next few months every time Cody gets sick he will have the muscle pain a long with the illness, it will eventually go away.> March 2008 - Opthamologist - allergic conjunctivitis. prescribed: Elestat drops.> During all of this I had been calling (numerous calls)the GI doc to have different tests run, stool sample for parasites, liver enzymes checked, etc...every thing always comes back good, nothing abnormal. GI gave a referrel to another doc in Dallas, we live in Fort Worth.> April 2008 - Allergy doc environmental testing...positive to mountain cedar and cats ( now that was a definite positive, he whelped within 10 seconds and it was huge). Prescribed Nasonex. I took him off the Flovent.> April 2008 - took him to a pedi that is a D.O. for a second opinion outside "the network". He

immediatly referred him to the GI specialist in Dallas. I'm waiting to schedule appt. the biopsy slides and the medical records have to be read by the doc before he will see him. > May 9 2008 - I pick Cody up from school, he said his foot hurts and he was limping and had a severe headache, back to the ER they did no blood work or urine they tested for strep the quick test was negative and sent him home with guess what? Yes, a "virus". 3 days later the culture from the strep came back negative. > May 12 2008 - back to the pedi... by now he had red spots on the back of his mouth (they hurt pretty bad) and down his throat. His gums in the front, top were bleeding also. doc tested for strep again, the quick test was negative. He gave him an antibiotic any way, just to see.> May 14 2008 - he returned to school, he is feeling better, almost good as new. > I am still waiting

on all the medical records to make it to the specialist in Dallas, they have received the slides, they are just waiting on the records, they have already been sent, they should be there any day now.> I need your help on this. This is what I think ( from 4 months of researching myself and all the infomation I found on this group):> The Miralax that was prescribed to him (which I was only giving 1/2 dose) was causing some problems with his kidneys which was causing the paleness. Then in January when the GI doc rx'd also, I did give it to him full strength daily, then days later is eyes became itchy and red then days later all the other symptoms began and all this I believe is some kind of kidney damage caused by the Miralax. What to you think, Jeanie? The EE was found but I think he got that from the miralax also, not from enviro allergies or from food, I just do not believe that at all. I now do not believe the

Miralax caused all the symptoms due to allergic or adverse reactions, I believe it has possibly damaged his kidneys and that is what is causing the symptoms. Keep in mind the symptoms that have remained from January to present day are: > Red, itchy eyes (allergic conjunctivitis), > Muscle pain > Night jerks> intestinal issues (EE) no outward symptoms except right before the scope/colonoscopy, I think was caused after the full dosage of Miralax, because he always complained of bloating with the Miralax. > Veiny - his veins some what stick out - they are much more apparent all over his body.> He never really had any . I could ramble on forever. I'm just trying not to leave out any thing important. > I know this did not seem like a summary, but trust me it is.> Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE, Food Allergies (elimination

diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome). > > > > Too All -- regarding stinging red bottom, grainy poop, cloudy urine, etc> > > The above symptoms are classic symptoms of oxalate dumping. Oxalic > acid is a very harsh chemical -- and is a by product of the breakdown > of PEG by some types of bacteria. There are 2 theories to oxalates -- > one is using a low oxalate diet, the other is the fat soluble protocol -> I prefer the latter.> > Type oxalate and VSL#3 in search and you will get some posts related to >

the protocol such as this one.> > http://health. groups.yahoo. com/group/ miralax/message/ 6113 > > The best thing to 'mop up' the oxalates is high dose probiotics and > magnesium citrate. Baking soda and magnesium sulfate (epsom salt) > baths help too.> > This theory is not in mainstream medicine -- but most naturopathic > doctors and chiropractors would be aware of it I'm sure.>

[Guest guest]

The protocol for what LeeAnn proposes is exactly what Pfieffer Treatment Center suggested. I commend her for finding all this information because it costs $3000.00 to walk in Pfieffer...........The research we've done here, has taken many man hours, years, and LeeAnn has indeed worked above and beyond in what she has found. I tried their protocol and because of headaches and behavior, I got scared and pulled out of the program. This may have been due to the high concentrations, although I only used 1/4 of what they prescribed. There is a couple things in this article that I wonder about? It states that in the 30 of the 36 patients, they had no reoccuring stones, but it doesn't say what the condition of 30 patients that took only water had? Also, it shows that they had a decrease in oxalic acid coming out, could this mean that it's still in there, and not coming out? How does one know? I certainly don't want to discourage anyone from

trying what is being proposed here, This may be beneficial, and could have minimized the time the stinging and burning my dd endured. LeeAnn has a male and they seem to have different side affects, meaning the stinging and burning while urinating seems to be less with males than female patients, and I have no female patients who've used this protocol to make any conclusions. Nor do we have any long term studies of our own to show any significant results? We also don't know the long term affects of what PEG does to the body either? This study was done giving EG not PEG, there is no studies done with PEG.............it could go either way, better or worse? We are pretty certain that it is breaking down into EG but because of what they did to it when they created it, it becomes a chemical all it's own and there will be similarities but they still have components that are different. We are

all still learning. It certainly has merit, and PEG clearly depletes calcium and magnesium, so giving it seems logical, I just choose not to give anything because I was once bitten twice shy, but LeeAnn swears by it and she does have the most knowledge on this situation and research to back it up. 8 years ago, we knew very little about this situation. I thank you LeeAnn for all your research, I also thank Owens for all her research and her low-oxalate group, and W for putting this group together, Kathy, Bonnie, , , Yvette, Deann, , and all the other Moms who've responded from their hearts to help these children they don't even know, they'll never meet, and only wanted to lend a helping hand to try to prevent an innocent child from chemical toxicity, without all of you, we'd all be in the dark. I also have one more question, what happens if one gives synthetic magnesium? how

does the body utilize this? Is there a difference if one gives natural magnesium, not chemically processed magnesium? I wonder if this mattters? Is calcium, calcium? or is there natural and synthetic? I also wanted to add, that if I had a chewable probiotic at the time, it would have certainly helped with the burning and stinging, I've noticed a reduction in the odor and better appearance in the bm's since introducing it................. I wonder how many children bypassed this whole horrific experience by having an intelligent doctor that simply prescribed a probiotic for their constipation and never had to endure the agony of what Miralax does? thanks everyone for sharing your stories................ mommtlc wrote: This is just my opinion, but the EE diagnosis has thrown you off a track a little. I think your son is suffering from a severe reaction to PEG, and it looks similar to renal tubular acidosis. Please join the vitamin k group and read for about a week before you ask any questions -- there's a ton of information to wade through. If your son was mine -- here's what I would do:Per 's recommendations on the Vitamin K group, get the labs done.Epsom salt and baking soda baths -- every day IMO. Start with 1 cup each and 15min soak and build up to several cups over the next month or

two.Add B6 and magnesium (preferable citrate)-- here's the study from a long time ago http://www.ajcn.org/cgi/reprint/20/5/393.pdfAdd fish oilEliminate the very high oxalate foodsOne VSL#3 sachet per day. You need billions!Measure first morning urine PH. The ph-ion strips is what I've used. I'm guessing -- but I'll bet $ that his PH will show up as alkaline. First morning urine should be acidic -- shows that the kidney's are working and clearing acids from the body. If this is correct, post back and I'll give you some options that worked for us.Your son's signs of 'bone pain' and road map veins SCREAM of oxalate issues. He probably has a huge load of them in his body -- socked away in his bones. It will take YEARS to get them out and you will have to do a supplement balancing act to make it as painless as possible. My son was on miralax

for 1 1/2 years -- and he's been off of it for almost 2 years. He still has symptoms of oxalate dumping. BTW -- some of the symptoms, diet recommendations, etc correlate with uric acid clearing problems =gout. An old man's disease!Don't worry about posting with reactions and observations on a daily basis. I think we all learn from reading about other's symptoms - what helped, what didn't etc. Does your son get easily chilled?Any behavior changes?What's the constipation status right now?>> When you say liver support and muscle testing, what is that and how do you go about it? I asked Cody's doctor about testing his kidneys, I am concerned about kidney problems. See, he has EE, but not the typical symptoms. He never had outward symptoms of EE, it was just found in search of

something else. His symptoms are: paleness, red eyes, muscle pain, & jerks in his sleep. He has never had EE symptoms, like I said we just accidently stumbled across that. Here is a summary of what happened to him:> > April 2007 (age 9) - his pediatrician prescribed Miralax for him 17 grams a day to treat his constipation he has had since he was 2, (I was scared of it so I only gave him 1/2 of that & not every day).> December 2007-pedi appt constipation worsened I also noticed he was pale and he was some what veiny, mentioned it to the doc (I never even thought about it being the miralax) He said it is just winter and he hasn't seen the sun in awhile, he didn't seem pale to him. He refers him to a GI for his chronic constipation.> January 3rd 2008 - GI doc prescribes Miralax 17 grams a day & 1 exlax square (adult strength) a day & to stay on those for 1

year. I was very uncomfortable with that, he convinced me how safe it is & how Cody really needed it, I agreed to do it. He also scheduled him for the balloon test (anal).> January (exact date unknown) severe red itchy eyes (I thought was allergies & I treated it with saline drops, which did not help)> January 11th 2008- balloon testing done.> January 12 2008 - buckled over with abdominal pain for about an hour, he stayed in the kitchen chair the whole time it hurt, he wouldn't move. He was better and carried on with his normal day, but wasn't quite right.> January 15 2008 - (at basketball practice) complained of both arms & both legs hurting, had to lay down for 20 or 30 minutes, he was hurting so bad he couldn't walk. I finally got him home, he layed down in the floor soon as we walked in the door, said he wanted to just sleep there. I moved him to the couch, he slept there, I gave

him motrin.> January 16 2008 (am) - he was in screaming pain, the muscles in his arms and legs hurt so bad he could not move, he was lay face down, and could not even roll over, his body was also very vieny, the veins seemed to stick out a little or something. - mother's instinct told me it was the combination of the miralax and the exlax and that he was dehydrading, his veins were very apparent and kind of sticking out. I had to carry him to the car (78 lbs), we went to the ER, I told them I thought he was dehydrating and told the ER doc what meds he was on, the doc argued with me and said that a GI doc would not prescribe both exlax and miralax at the same time, that I must have mis understood him, OH NO I DID NOT, I QUESTIONED THE GI ABOUT THE SAME PROBLEM. Anyway, of course I won that argument, all the records are in the network of doctors including the children's hospital. Anyway they did urine and

blood test, they claimed he was not dehydrating. Cutting to> the chase here, they sent him home with "viral symdrome". I told them this was not a virus, I know my child and he is not my first one, he is my 5th one, and I have been through many virus' and flu and have never one time ended up in the ER with any of my kids having just a virus. They did strep test, flu test, mono test, inflammation test, etc... still "virus syndrome" all the lab work came back normal.> January 16, 2008 (pm) - back to the ER, same symptoms, paleness, red itchy eyes, severe muscle pain (his skin was pink in the painful areas,no one would listen to that symptom) only now he had a high fever also 103.7 & abdominal pain. one hour after giving motrin, they gave him tylenol and I wiped him down with cold towels, the fever went down to 102. They repeated alot

of the same, still negative all was normal, the only thing that changed was his inflammation levels had escalated since that morning, they didn't seem concerned. > January 17 2008 - I took him to the GI, I was concerned about the meds causing this, or course he said no it is not the meds. I asked him about the balloon testing, if that could cause all this and of course he said no. I also asked him about his constipation issue, if he had thought he might have any blockages and maybe that is what was making him sick, he decided to schedule him for a colonoscopy and said since he is having other issues he said we might as well do a scope, to check for ulcers in his stomach. He said he would give him an antibiotic just to see if that would help him, he thought he might have a sinus infection, WHATEVER! I gave him the antibiotic - it did not help.> January 19 2008 back to the ER, only this

time I took him to a different hospital, not the children's hospital. They thought he might have meningitis, and transported him by ambulance to the children's hospital. When we got there they did not see any reason to test, he did not have the classical symptoms of meningitis. This doctor prescribed some eye drops and said "viral syndome". The doctors would not listen to any thing I had to say, "viral syndrome" was the going thing.> February 5 2008 - cleanout for colonoscopy and scope, he took the Golytely Pak. First the 4 pills then he began with the first 8 ounces of powder & water he buckled over with severe abdominal pain, and he was crying and begging to not have to drink it. After 30 minutes, he was in the tub soaking hoping that would help the pain stop. I convinced him he really needed this to just try again, he took a couple of sips and said his stomach felt like it was going to blow up it was so

full. he buckled over again sreaming bloody murder and vomited 4 times, this is not how he normally acts, it was out of character for him. I then called the GI, they were out to lunch. I called poison control, that is when I read the medication ingredients, POLYETHYLENE GLYCOL 3350, what??? OMG! poison contol said not a typical side effect of the drug but go to the ER anyway. On the way he started feeling so much better, we got to the ER went through triage and then I decided to> leave and go see the GI, since the ER docs only know "viral syndrome". The GI said try magnesium citrate, we really need to do the colonoscopy and figure out what is going on. We used the magnesium, he responded good to that.> February 6 2008 - colonoscopy & scope - colonoscopy was normal, the scope - abnormal, that is how they found the EE and his esophagus was very inflammed also. Prescribed Nexium, Flovent, and

Singulair. He referred him to an allergist for testing.> February (around 10th or 11th?) 2008 - Allergy doc - prick test - negative. doc said all the meds she required him to be on was Nexium. I took him off Singulair immediatly.> February 18 through the 21st 2008 - patch test...positive to rye, wheat, soy, and beef. (come to find out later, it was a mild positive). elimination diet begins. She said she could not explain the muscle pain and the night jerks maybe he needs to see a neurologist for that dx.> February 2008 - I took him to the neurologist- he said it is Gilliam Barra Syndrom (he strongly believes) and that he is past the worst of it and should completely recover within 12 months of onset and I will see a great improvement within 6 months. He said for the next few months every time Cody gets sick he will have the muscle pain a long with the illness, it will eventually go away.>

March 2008 - Opthamologist - allergic conjunctivitis. prescribed: Elestat drops.> During all of this I had been calling (numerous calls)the GI doc to have different tests run, stool sample for parasites, liver enzymes checked, etc...every thing always comes back good, nothing abnormal. GI gave a referrel to another doc in Dallas, we live in Fort Worth.> April 2008 - Allergy doc environmental testing...positive to mountain cedar and cats ( now that was a definite positive, he whelped within 10 seconds and it was huge). Prescribed Nasonex. I took him off the Flovent.> April 2008 - took him to a pedi that is a D.O. for a second opinion outside "the network". He immediatly referred him to the GI specialist in Dallas. I'm waiting to schedule appt. the biopsy slides and the medical records have to be read by the doc before he will see him. > May 9 2008 - I pick Cody up from school, he said his foot

hurts and he was limping and had a severe headache, back to the ER they did no blood work or urine they tested for strep the quick test was negative and sent him home with guess what? Yes, a "virus". 3 days later the culture from the strep came back negative. > May 12 2008 - back to the pedi... by now he had red spots on the back of his mouth (they hurt pretty bad) and down his throat. His gums in the front, top were bleeding also. doc tested for strep again, the quick test was negative. He gave him an antibiotic any way, just to see.> May 14 2008 - he returned to school, he is feeling better, almost good as new. > I am still waiting on all the medical records to make it to the specialist in Dallas, they have received the slides, they are just waiting on the records, they have already been sent, they should be there any day now.> I need your help on this. This is what

I think ( from 4 months of researching myself and all the infomation I found on this group):> The Miralax that was prescribed to him (which I was only giving 1/2 dose) was causing some problems with his kidneys which was causing the paleness. Then in January when the GI doc rx'd also, I did give it to him full strength daily, then days later is eyes became itchy and red then days later all the other symptoms began and all this I believe is some kind of kidney damage caused by the Miralax. What to you think, Jeanie? The EE was found but I think he got that from the miralax also, not from enviro allergies or from food, I just do not believe that at all. I now do not believe the Miralax caused all the symptoms due to allergic or adverse reactions, I believe it has possibly damaged his kidneys and that is what is causing the symptoms. Keep in mind the symptoms that have remained from January to present day

are: > Red, itchy eyes (allergic conjunctivitis), > Muscle pain > Night jerks> intestinal issues (EE) no outward symptoms except right before the scope/colonoscopy, I think was caused after the full dosage of Miralax, because he always complained of bloating with the Miralax. > Veiny - his veins some what stick out - they are much more apparent all over his body.> He never really had any . I could ramble on forever. I'm just trying not to leave out any thing important. > I know this did not seem like a summary, but trust me it is.> Deanna,> Fort Worth, Texas> Mom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome). > > > > Too All -- regarding stinging red bottom, grainy poop, cloudy urine, etc> > > The above symptoms are classic symptoms of oxalate dumping. Oxalic > acid is a very harsh chemical -- and is a by product of the breakdown > of PEG by some types of bacteria. There are 2 theories to oxalates -- > one is using a low oxalate diet, the other is the fat soluble protocol -> I prefer the latter.> > Type oxalate and VSL#3 in search and you will get some posts related to > the protocol such as this one.> > http://health. groups.yahoo. com/group/ miralax/message/ 6113 > > The best thing to 'mop up' the oxalates is high dose probiotics and >

magnesium citrate. Baking soda and magnesium sulfate (epsom salt) > baths help too.> > This theory is not in mainstream medicine -- but most naturopathic > doctors and chiropractors would be aware of it I'm sure.>

[Guest guest]

No, I have not found out any thing on the allergy testing. Cody keeps getting sick he has been sick 3 times in the last week, the last 2 times haven't lasted long. He is beginning to have headaches, regularly. I haven't been able to be online much. The specialist in Dallas finally received all Cody's lab and reports. He is evaluating them and will call back tomorrow and let me know when his appt will be.

Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome).

Too All -- regarding stinging red bottom, > grainy poop, cloudy urine, etc> > > > > > The above symptoms are classic symptoms of oxalate dumping.

Oxalic > > acid is a very harsh chemical -- and is a by product of the > breakdown > > of PEG by some types of bacteria. There are 2 theories to > oxalates -- > > one is using a low oxalate diet, the other is the fat soluble > protocol -> > I prefer the latter.> > > > Type oxalate and VSL#3 in search and you will get some posts > related to > > the protocol such as this one.> > > > http://health. groups.yahoo. com/group/ miralax/message/ 6113 > > > > The best thing to 'mop up' the oxalates is high dose probiotics > and > > magnesium citrate. Baking soda and magnesium sulfate (epsom salt) > > baths help too.> > > > This theory is not in mainstream medicine -- but most naturopathic > > doctors and

chiropractors would be aware of it I'm sure.> >>

[Guest guest]

Yes, I understand what your saying about staying on the diet until we see improvement, but Cody has never had any outward signs of EE, we coincidentally found it in search for something else. His symptoms are: red eyes, veiny body, pale skin, muscle pain and now all of a sudden he is having frequent headaches. The doctors claim non of those are symptoms of food allergies or EE, and him having red eyes is the only symptom of environmental allergies. What I am trying to figure out is what ONE thing caused all these symptoms, I will never believe that they are not related. I think what ever caused all that caused the EE also. Lee Ann was definitely right when she said that the EE dx has thrown me off track, I totally agree! I am going to be testing his PH in his urine, I decided to

wait until this weekend, since I work early mornings (4am-11am). I have been researching like crazy all those symptoms and trying to link them and I have narrowed it down (thanks to all the mommies) to kidney problems or Kawasaki Disease/Virus. If any one knows any thing about Kawasaki Disease I would love to hear your input. Thanks again to all of you.

Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome).

Too All -- regarding stinging red bottom, > grainy poop, cloudy urine, etc> > > > > > The above symptoms are classic symptoms of oxalate dumping.

Oxalic > > acid is a very harsh chemical -- and is a by product of the > breakdown > > of PEG by some types of bacteria. There are 2 theories to > oxalates -- > > one is using a low oxalate diet, the other is the fat soluble > protocol -> > I prefer the latter.> > > > Type oxalate and VSL#3 in search and you will get some posts > related to > > the protocol such as this one.> > > > http://health. groups.yahoo. com/group/ miralax/message/ 6113 > > > > The best thing to 'mop up' the oxalates is high dose probiotics > and > > magnesium citrate. Baking soda and magnesium sulfate (epsom salt) > > baths help too.> > > > This theory is not in mainstream medicine -- but most naturopathic > > doctors and

chiropractors would be aware of it I'm sure.> >>