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» LymeNet Flash » Questions and Discussion » Medical Questions » urination issues?

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Author Topic: urination issues?
2roads
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My family and I were playing a board game today and my son laughed so hard he peed in his pants four times. Each time required a change in clothing, and once dribbled through onto the rug.

It was not a lot, but enough.

He has had this in the past. I worry the Bactrim damaged something over all that time of use.

He also wets the bed at night. It can be so much that he pees through his pullup.

He has done this all his life. He is 11.

Anyone know what this could indicate?

Urine ran several times in the past showed high ratio B/C and slight BUN elevation. Creatinine okay, and results not always high.

Any thoughts appreciated-

2roads

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Keebler
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Make sure he knows it's:

1. not his fault (nerve signals can get "mixed up" and signal muscles to just relax . . . the bladder wall can become irritated and then "act up" . . . etc. )

2. something that will get better in time

I'm not a little boy but a woman and various bladder issues (also failure so swift that no bladder control pad could contain it) have been with me since soon after getting lyme.

3. other causes: certain medicines, supplements, foods, beverages,

4. Be sure to make light of it if it happens again. As if it's a sneeze, it's just something the body is doing and try to make it no big deal at all . . . but also assure him that with doctors, you will work to help figure it out so that he can be more comfortable with control.

Put precautions in place, mattress pad, etc. but be sure it does not make noise or make him sweat (as so many can do).

An anatomy lesson of sorts might actually be a bit of fun so he's less in the dark, age appropriate, of course. I'm sure there are certain diagrams or videos for whatever age he is. It's just all how the body works, or gets mixed up sometimes.
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2roads
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Thanks Keebler.

I have played it down. But, I am getting tired of washing those sheets, pads, dealing with urine garbage cans, hampers.......

Also, I am getting worried.

I know it's not his fault. I just wish it would stop. I also worry it means something more serious.

Thanks for your calming approach.

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Keebler
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What does his doctor say?

Have they ruled out any nerve impingements? Seizure activity?

Of course, if he has lyme, his LL doctor should be the one first advising you on this matter as it's very common with lyme and with treatment, even with the support methods also putting more work to the bladder.

If he has lyme, it is best that PT be LL, of course. If not LL, they can do some real verbal damage for any patient, especially if a child, because they will miss a lot of what is going on.

It's probably time for an appointment with a physical therapist who has specialized training in bladder control issues for little boys.

BIOFEEDBACK can help in some ways, even if maybe not all ways. Many PTs are trained in this. He could learn how to control what muscles he can. Don't assume this should come naturally, there may be specific reasons that he may need some expert instruction.

I know this makes more work for you and I'm not sure how you can totally hide any frustration you have over that but he will sense it and it can add to stress. Maybe make a game, or be honest when you exhibit stress and then work with him on ways to make some fun -- the "at least it's not . . . " game.

At least you don't live in the jungle (oh, but if you did, then maybe some things would be easier). It can divert attention in some ways.

When I start feeling like my own self is just too much of a burden, I go to the place of how lucky I am to have running water and a change of sheets, at least.

I got a special carpet cleaner just for accidents. It's a luxury to have such a machine (is how I have to think of that, even if I can't really operate it but have to pay someone to come and do that!).

Hey, bodily functions can cause us grief but, oh, what my body does for me to offer certain enjoyments and relationships so I've made a deal with whatever my body needs - to put up with it!
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[ 01-06-2014, 09:45 PM: Message edited by: Keebler ]

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GretaM
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I don't know about the bedwetting thing.

But the peeing when laughing hysterically thing I can relate to.

I have on many occasions peed a bit when laughing really hard. (Before I had lyme).

I had friends when I was a teenager, laugh so hard they peed their pants.

I think peeing a while sneezing, laughing or falling are normal. Ie: not a sign of something more serious going on.

I also have a male friend who wet his bed until he hit puberty. The doc said sometimes the bladder doesn't grow in proportion to the rest of the body in prepubescent males, so it fills up too fast during sleep. Hence the bed wetting.

When my friend went through puberty it stopped.
[group hug]

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MannaMe
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Has he seen a chiropractor? Sometimes if the spine is out of place where the nerves to the bladder go through, it puts pressure on those nerves.

I'd especially get it checked out for the night time wetting since he's been doing it all along. Some of our children had that issue. Chiropractic adjustments helped.

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Keebler
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Hormones? Again, if he has lyme, his LL doctor should also consider that. Hormones that affect the bladder often get very much out of synch with lyme.

Greta,

That detail about the bladder growing speed is interesting.
-

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Judie
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My doc said it was bartonella. Incontinence can be a bart symptom.
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GretaM
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Judie-that is interesting.

As a few of you may know, I have recently had incontinence issues.

I never thought bart could be a player in that. Hmm. Interesting Judie.

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WPinVA
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My kids have had incontinence with seizures and PANDAS.

And I'm not saying he is having seizures - he probably isn't - but just so everyone knows, they can be very brief and they don't always look like seizures.

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Dogsandcats
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I know my boys hated to leave anything remotely fun to use the bathroom. Maybe make sure he regularly empties his bladder? Maybe it is a retraining issue....

Does he use the restroom at school? Sometimes kids don't like to use public bathrooms and their bladder gets off.

I am sure you have tried this - just thinking out loud.
Not a doctor- just a mom.

--------------------
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Rumigirl
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2roads, I understand how distressing this is. I have had pretty severe incontinence issues myself and have done a lot of research,

work-up, attempts to correct, etc. While I am female and much older (and therefore a different situation), some of the same causes may apply.

What MannaMe said is correct, that it would be good to see a good chiropractor or osteopath to correct any possible misalighments that might be impinging on nerves to the area.

Lyme, as many of us know, also loves the bladder (sadly), probably due to the fact that it's a sequestered area. I wasn't aware of Bart being involved, but anything is possible.

In fact, Babesia may be involved as well, as with malaria, people can walk down the street and gush pee. Lovely, huh??

You may know this, but there are different kinds of urinary incontinence, such as stress-incontinence, with pressure of the

abdominal muscles or gravity, such as when laughing, sneezing, etc. For women, Kegel exercises can help. Don't know if that's true for males, but likely.

Then, there neurological causes, such as either cranial or spinal nerves being affected and causing the wiring to not work properly. The cranial nerves would be either from a cranial misalignment, or from Lyme in the cranial nerves.

What does his LLMD say about it?

It woud be good to see a urologist to have some kind of work-up, or see what he has to say (if his LLMD thinks that it's warranted. You might get some answers.

Personally, if it were me, I wouldn't want to simply leave it to chance that he will grow out of it, although, of course, we would hope so. Of course, you also don't want to give the poor little guy a complex about it. But some knowledge might help.

It sounds like more is going on than just "he'll grow out of it." My guess would be TBD's. So maybe start with a chiro or osteopath, talk to his LLMD, and then consider a urologist.

I know for myself that in addition to stress-incontinence, I have had neurologically caused incontinence, too. That's far more serious, as I don't think that corrects, unless you haven't had it

long and get rid of the Lyme in the cranial nerves. Hopefully, for a kid, that would be easier to correct, if it were true.

I hope that it improves and that you get some answers. It is so unfair for kids to have to deal with this mess! Not to mention moms.

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Rumigirl
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I just saw wonderful Keebler's post about the PT (somehow I missed it before). That is a really good idea. Some PT's specialize in pelvic floor retraining (strengthening the muscles of the pelvic floor).

Usually we think of that for women, but men/boys can have the issue, too.

I would still work through the other routes, too, as you don't want to miss something here. My sympathies to both of you. I hate this stuff myself (who doesn't get frustrated who has to deal with it?).

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Judie
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Greta - I actually thought of you when my doc mentioned it, it was after you did that thread awhile back.

Apparently bartonella can effect the bladder. I had an "incident" while at the doctor's office. Talk about embarrassing, yet timely. I was pretty mortified.

I've been meaning to mention it to you, but it totally slipped my mind until now (you've got to love what these infections do to us).

Chalk it up to bart. I know you've been dealing with that awful infection too.

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surprise
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It is a sign of PANDAS/PANS, which I've posted before about in threads about your son, and I thought it again,

but it's a big ball of wax, that PANS/ PANDAS.
We aren't sure where you are at with your son as far as him being currently seen or treated by a Dr.,

and I know you've regretted advice taken on these boards before re: him,
so I'm hesitant to suggest my opinions,
but always want to help a child.
Keebler had sensitive suggestions about the emotional part.

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positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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2roads
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thanks for everyones input.

There is so much to think about.

I guess it's best attacked by what I do know.

He has had a 24 hour EEG and shown to have no seizure activity. His sleep cycles are indeed off to say the least. About nine hours of sleep, rises early no matter when he gets to bed, and appears to have fewer sleep cycles then the average bear.

He has been tested for all three strep antibodies per Doc. J. Unlike my daughter who had all three titers high and not nearly the symptoms of my son, I am left to believe it's not that. He was also treated with copeus amounts of antibiotics at a time when he was urinating, as he has done this all his life. I won't give him antibody therapy, so what's left if it is PANS?

His bladder can hold urine, and lots of it. I sometimes hear him pee for quite a long time. So, it's not a small bladder, I don't believe.

It could be a TBD. He was seing Doc J during the time this was an issue, and he wasn't overly concerned, but it's been two years since we've seen him and I don't know what he would say now.

Maybe it's time to check in with the good doctor and ask.

His local Ped says it has to do with a diuretic hormone in his brain which hasn't matured yet, but should. He too believes that by puberty this will be gone.

I am not completely convinced either, since he laughs and pees sometimes. It could be a different kind of incontinence then night time as rumigirl suggested, but it seems it could also be related.

I think the PT excercises you mention Keebler are a good idea in the interim, in case it's functionality.

I also was going to pursue the test that you mentioned Surprise looking at his urine. I will see if Doc J can back this testing. It's benign enough and could indicate bacteria or yeast.

I know when I too that seed extract as my son did, and I went to the ER to be tested, they found I had bacteria in my bladder and gave me Bactrim.

Not crazy about more Bactrim for him, as I worry it may have contributed to this. He has had uric acid crystals when on Bactrim, of which Doc J discovered upon testing 3 or 4 years ago.

Thanks for everyones thoughts. I welcome them and try to take from them everything that I can. Hugs

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Keebler
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An EEG cannot - cannot - rule out the possibility of seizure activity. It's just not that good of a test. And there are a million variables.

Still, it is great that no "typical" seizure activity was recorded during that test. But it does not mean it's not happening. The EEG machines can't detect all seizures and they just might not have happened during the test.

No need for another EEG, though, but it is helpful to be aware that seizure activity is on a broad line, a continuem. (sp?)

If he has ANY vestibular issues, "shades" of seizures may also be involved -- it is just too much excitatory action for the nerves.

LIGHTING? Do you have energy saving CFL (flourescent) or LED lights in your home? If so, I would change them all out and go back to incandescent lights and see if that helps. Soon, you won't be able to find these in the stores but you can still buy some now until the supply runs out.

Food additives? Has a product recently changed their recipe?

MAGNESIUM may help. But his LL doctor should be guiding. A LL ND might also be very good if that is at all possible.

Ultimately, whichever LL doctor who has been working with him should be the one to address this issue.

Exercises are not exactly what BIOFEEDBACK is. It's more complex than that, and very specific with learning first on feedback machine.

Nerve impingement should first be assessed.
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Keebler
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School lunch? New chemical exposures?

It just seems that the doctor has dropped the ball. His doctor SHOULD have taken this by charge by now and informed you both as to what all could be influencing this matter, and working down a list toward . . . (loss of words, loss of energy - sorry).

Hope you find a better doctor for him because I find myself angry that this is happening and he apparently does not have a doctor who is up to the task of the complexities involved.

Now, it may not be something that can be "cured" in short order but, I believe, that you and your son should have better medical input here as to the mechanics, the variables, the things that could help along the way.

It seems that you have both just been left alone on this. And that is a shame.

Good luck. Take care.

You might see out the Lyme in Autism website and actually talk by phone or in person with some of the parents there. They have surely dealt with this issue and may have good suggestions or doctors who can help.

Even if your son does not have autism, the lyme induced autism parents will still be a great reference and support source. So many thing overlap when it comes to nerve overstimulation from lyme and TBD.
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2roads
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I need to find someone who does Biofeedback in my town for muscle control. I will ask my local Ped, Keebler.

Nerve impingement could definitely be an issue as well.

I did start him on a little Mag glycinate again yesterday. A fresh bottle I just got in.

I am giving him 100 mg every other day. An adult dose is 400 mg a day, so I would hope I'm not exceeding anything.

I don't know which doc would support it either way. But, I will mention it to Doc J's office.

Yea Keebler I am a schleprock Mom in giving him school lunches. He has been on them for years though. I need to find food that he will eat other then lunch meat sandwiches. I need to buy a thermos again and put some organic soups in it. I bought all the lunch sacks advertised on TV this year, but have failed to use them consistently.

hmmmmm

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Keebler
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Please connect with the parents from LIA foundation. I am certain that they will be glad to share with you a wealth of information.

Sadly, the school lunches could be torpedoing him, in many ways. Soup will not be enough fuel, though. Again, parents with the LIA foundation -- or some similar parents' group has walked this path before you and could offer some organized suggestions.

There may be other parents / kids in that school who are facing the same nutrition challenges.

And the school food is just a start. Cleaning chemicals, new carpets, MAGIC MARKERS, etc. LIGHTS, BELLS, anything that adds to the stimulation load, etc.
-

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Keebler
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Magnesium should not be given all at once, but several times a day. Certain foods are rich with magnesium and those would be where I would start for a child.

Oddly, even as magnesium can slow down overactive nerve signals, it can also INCREASE urination as it is anti-inflammatory in nature and that usually involves release of urine. So, it's a balance.

Apparently, you / your son have consulted with Dr. J in the past. I would assume his office would have diet and supplement suggestions, articles, books, etc.

Can they suggest who to see for this matter?

I can't speak to a child's dose but in addition to talking with Dr. J's office manager -- AND parents from a lyme kids' group, basic details:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM LINKS sets
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Keebler
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- To find parents facing similar issues

- to let your son know he's not the only one

- to help you find professionals

- to help you find other parents maybe in your son's school district where you can team together for good lunches, lighting changes, etc.


http://www.lymepa.org/

Lyme Disease Association of Southeastern Pennsylvania


http://www.lymeinducedautism.com/home.html

LIA Foundation
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Keebler
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Foods and food products / additives that can cause bladder issues via over-excitation of nerve signals:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).

Gluten discussed, too.

Bottom line: it is not that you / he / anyone HAS to give up good food. But we (as consumers) have been fooled, deceived, neglected . . . and now that we know that we have the power to make choices that can help us discover how delicious real food can be & feel better in various ways -- or at least give us a better chance.

As all this can be overwhelming, cost more (or so it seems at first), and take more time . . . again . . . connecting with area parents who have children with similar issues can be a great help so you don't have to reinvent the wheel.

Perhaps there are parents near you who have found some great ideas -- or people - to help in the shopping or preparation of food to make it attractive and delicious to your son for his lunch.
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[ 01-07-2014, 06:25 PM: Message edited by: Keebler ]

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Keebler
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Although that likely means cutting out all school food (unless or until the school agrees to cut dyes) . . . and sulfites . . . etc. . . .

Even just starting by taking dyes out of diet could make a big difference. Loss of bladder control can be one symptom of hyperactivity. In any case, your son's bladder IS hyperactive &/or loss of muscle tone for some reason and it would seem this is one place to begin sorting it out.

Today's news highlight one little boy's remarkable change by keeping artificial dyes out of his body.

So far, 146,775 agree.


http://www.cnn.com/2014/01/07/health/mms-candy-artificial-dyes/

American mom wants European M&Ms

-by William Hudson, CNN - January 7, 2014

Video: 2 minutes - and article

Excerpts:

What gives M&Ms their bright colors? That depends on which country you're in. . . .


. . . Shutters says her son Trenton showed noticeable improvements in mood and attention span after she removed artificial coloring from his diet a few years ago. M&Ms were his favorite candy. "I just could not believe that something so small could make that big of a difference," Shutters says. . . .

. . . As of Tuesday morning, the petition had more than 142,000 supporters. . . .


https://www.change.org/MMsDyes

Change.org Petition: M&M's Candies: Stop Using Artificial Dyes Linked To Hyperactivity

Excerpt: Did you know that M&M’s candies contain harmful, petroleum-based, artificial dyes that can trigger hyperactivity in sensitive children? I believe eliminating these dyes did wonders for my family’s health. . . .

. . . found out that many families were using an “elimination diet” to isolate and remove harmful ingredients -- particularly artificial dyes. By removing dyes like those found in M&M's, they were able to delay, reduce, and sometimes eliminate the need for medication. . . .

. . . I’m not trying to keep my kids from being kids. They can have treats. But they don’t need petroleum-based dyes. . . .
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2roads
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Thanks for the link Keebler, and the nutrition info.

I totally agree. I buy organics from a local coop. It's where all the money goes when it's not on bills.

School lunches do get past me though.

I only give mag once a day because it's the lowest dose in the bottle. Again, I give it every other day. So basically he has one day of an adult dose throughout a seven day period. He's 105 pounds. I would think that was okay.

He does eat very well. He is really growing now. At least I can say that much.

I looked up autism traits. He really isn't autistic, but more hyper.
He can concentrate though. His Lumosity score is excellent. He's in the second highest math group out of five in school. His NWEA scores are well above.

Hs brain is hyperexcited though. I am trying meditation therapy in three weeks. He is also starting lymphatic drainage massages.

Still also in sauna.

so much to think about...and prey about.

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Keebler
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I know and apologize for not being clearer. He does not have to be autistic to gather research and practical advice from parents of the LIA foundation. I suggest them because they've really had to go the extra mile regarding sorting out diet stuff, they understand lyme and it could save you a ton of time and connect you with good sources.

The LIA Foundation has lots of great ideas for anyone dealing with lyme.

Sadly, it does not matter how good he diet is away from school if he gets any degree of food additive in his school lunch. The exposure - even just once a day - can be a torpedo that spans the clock all day and all night.

Same with gluten. The school sandwiches can torpedo kids beyond the lunch hour. While some changes can be seen in days and the early weeks of a gluten free diet, it can take six months for the brain inflammation and excitability to settle from even a trace of gluten exposure in someone sensitive to that.
-

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randibear
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I've worn pads for years. Coughing for me is a real problem. Not having any surgery either.

Do you have a plastic mattress pad on for protection?

I still use one and then put a mattress pad on top

--------------------
do not look back when the only course is forward

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2roads
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I went on the site Keebler, and will go back. I need to get into the forum section where I can talk with others. I agree that it will be a big help. On a multitude of fronts.

I have to get my act together with school lunches. Even if i throw fruit, peanuts and cheese in the bag, that's what I need to do.

I will pack his lunch tomorrow and then get to Target for a thermos, and then back to the coop for something to go in there.

Sick, I can't even begin to think of gluten free. I have given him gluten free things to eat and he hates the taste. My coop has things to choose from. Not alot, but some. The dyes are easy to avoid, even the preservs, but gluten free......I guess I need the lyme board Keebler link for that.

He had an MRI of his brain as well. Everything looked okay. No white spots. There was an anomaly 7mm large at the base of his brain near the ear canal, but medial. I can't remember the location description. He has had that since 3 years old, it's just gotten a few mm bigger. Doc's aren't worried. It is just behind the carotid artery though.

Is your sons depression, ocd and adhd gone? If so, when did it present and then go away? Thanks for the hope that the peing might subside. He's 11 though.

Hey randibear. Ye, I have a absorbant mattress cover that goes under the sheet. Thank goodness for it, otherwise his mattress would be mush.

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sickofthepain
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I think my son is still dealing with things. He was never tested for lyme although he did have a tick on him when he was 5. I think the adhd has

taken a back seat but he says things like he has no motivation and complains of neck pain and headaches. I am sure he still suffers from

depression but doesn't talk about it. He went back to NY.In hindsight, I wish I had been careful about food coloring and excitotoxins. I

don't think he deals with ocd so much anymore like he was one year in high school. The one year that he ran cross country and track, he got good

grades and didn't even need meds. I think he was detoxing and burning off some stuff.Then he quit running.

I hope the anomaly/or cyst on your son's brain will shrink. My son was born with a cephalohematoma and I thought

a couple of times he was having a small seizure. I told the dr but he didn't seem concerned as drs often aren't. My son was born with allergic

shiners. I had to put him on soy. I had to stop nursing at 2 weeks when I became so ill. He had chronic ear infections and had tubes put in his ears.

I know eating gf is for the birds. It's funny. A local park that has lots of geese won't even let you feed them bread because it can cause angel

wing and lacks minerals. They won't say that for people though.Udi's bread in the freezer section is the best one that I found for bread. It does

have egg whites and I am suppose to stay away from too but there is nothing else out there that will hold it together.I have tried a variety of gf things and many are gross. There are a few good things.

Can your son take d-mannose? My bladder is terrible. I am up to pee at least 3 times in 7 hrs some nights.

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Keebler
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Eating GF does not have to be for the birds. Many store "products" do taste awful, though. But I'm talking about eating REAL FOODS, seasoned with garden herbs and spices.

I've been GF for decades now and I have hundreds of choices. Hundreds. When I go to a friend's house for dinner, I just ask what they are having and I match my meal to go with theirs. I did have to give up long ago the idea that I could just rely on their description of an intended meal, though, so I take my own.

The same could help kids feel more in synch with the school menu, looking ahead to tailor his lunch to be a GF chili if that's what's being served.

Foods that just happen to be GF can be delicious and satisfying. Usually, that is just real food, not packaged.

It can be daunting at first and, admittedly, it does take an eagle eye for kids who love packages. Still, there are some packaged foods that are fabulous. Some dark chocolate bars, too. It's just a matter of getting to know which brands.

Still, for a lunch, a good piece of chicken can be frozen and then put in a lunch box and just ready at lunch time. Same with wild rice. It can be frozen. Peas are great that way, too. With a little Brewer's Yeast, Sea Salt, garlic salt and olive oil mixed in, it has a cheesy taste.

Now, hot food would be better, of course . . . there may be a microwave that students can use to warm their food?

But cheese, itself, may be another category to avoid until this is all settled and then maybe just add a bit back in and see.

It will be easier to find other parents who are already doing this. Your local celiac support groups may be a good support for food choices, too.

If you get a thermos, be sure the inside is stainless steel, as plastic will be toxic when hot. It's hard to not have a plastic lid, though, so just don't fill it to the tippy top.

For food to stay hot inside a thermos, there has to be substantial liquid.

REI and camping stores will have the better thermos options.
-

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Keebler
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I'm not trying to make this more difficult, be judgement or minimize the effort for you and resistance from your son. It's just that, I truly believe, that until any possible holes in the diet "dike" can be mended, it's going to be hard to sort this out.

And, it may be that the diet changes would be enough to address this one issue.

Most kids with lyme do so much better on the kind of diet that many autistic parents have figured out for them. It took them years and years but they've really discovered some connections. Their work can save us all time.

Psychologically, though, were I to be a parent, I would just make the food, not making a big deal or even announcing that it will be or is GF. Of course, though, with outside influences, instruction would need to be evident so your son knows how to make choices when presented.

It's just that if he sees this as a punishment or even being different, it can make it harder. He will be able to find that he can eat from hundreds of food choices - but as a "consumer" he'll just have to think first. That's something I missed in my youth as I took the food industry for granted, hook, line and sinker. And I sank. Big time.

Book below: Most recipes are designed to be gluten free, or are easily altered as to the author's notes.

http://www.amazon.com/gp/product/1936608677/ref=as_li_qf_sp_asin_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=1936608677&linkCode=as2&tag=glufrecat-20

LADLED: NOURISHING SOUPS FOR ALL SEASONS

- by Kimberly Harris (December 18, 2012)

over 50 reader reviews, a near perfect composite 5 star rating.
-

[ 01-08-2014, 03:55 PM: Message edited by: Keebler ]

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2roads
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Thanks for the insight Keebler.

I'm gonna work on it.

[group hug]

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OtterJ
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Ask the doctors to do a check for the hormone vasopressin. Google vasopressin. It reulates water uptake in the kidneys. As it has been said before, lyme is a big endocrine disurptor. Also agree with the "this could be a food allergy" In food allergy the drain on the bladder swells open, not shut due to inflammation. At any age it is a problem but I've herad due to physiologic differences it is worse for boys.
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nefferdun
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I agree that bartonella affects the bladder. So does protomyxzoa.

If he has bartonella, he would probably have skins changes like pea size brown spots or loss of pigment (mottled skin). He could have unusual swelling that does not leave a dent when pressed (not edema).

If it is protomyxzoa he might lose his voice now and then sounding horse, or he could have nasal congestion that you might believe is an allergy.

Both infections could affect his sleep causing insomnia, and they both could cause muscle twitching.

I would also get him tested for heavy metals. You can do an EDTA challenge and it is not very expensive. Metals can contribute to incontinence. If he has metals, as well as lyme, he is not going to get well.

If you can't afford IV chelation you can make your own liposmal glutathione or EDTA. There were instructions posted recently. THe machine you need costs $32.

I always look for a reason for these things. At 11 years old, something is wrong and you are right to be worried. It has got to be really hard on him because he is in school and kids do not understand he has no control over the problem.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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2roads
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Thanks OtterJ, I will look the hormone up. I wonder where the hormone is made.

He does have a chronic nasal drip. It's most evident when he lays flat. He swallows mucous. Could be a food allergy. Probably Gluten and dairy with my luck.

Could be protomyxzoa. We treated pretty strongly for Bart already. Are the antibiotics different for protomyxzoa, or is that anti-parasitics....I need to look that up too. Thanks nefferdun. He doesn't pee during the day. Not when he coughs, or runs....this last bout of laughing and peeing hasn't happened in a long while.

I guess I just expected that it was gone. He does pee at night though. He said to me tonight when I told him I plan on getting a queen bed and feather comforter when he stops wetting, that he did so last night because he didn't feel like getting out of bed.

That's different for the first time. Usually, he doesn't even know when he wets. So, maybe he is starting to get signals to his brain now to get up.

I just wish he wouldn't produce so much urine. Back to checking out vasopressin. I wonder if that's not lyme related, if there's anything that can be done with it.

HMMMMMM

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2roads
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oh neff, found the older post where we talked about this. Antimalarials or ivermectin. Got it-

Thanks

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CinMI
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I'm really new here but I am not new to PANDAS/PANS which my son has had for 4 years. Does he have other behaviors? Incontinence in a child of his age who has other behaviors screams PANS. You do NOT have to be strep positive. My son has never had a positive culture or titers. He has been treated for three years for PANS. He was doing better but not great. I found a new doctor who ran Lyme and co tests and found ehrlichia and anaplasma. He has been treated for those for nearly a year now with abx and he's doing really well.

If you want more info, I'd be happy to share.

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CinMI
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I'm really new here but I am not new to PANDAS/PANS which my son has had for 4 years. Does he have other behaviors? Incontinence in a child of his age who has other behaviors screams PANS. You do NOT have to be strep positive. My son has never had a positive culture or titers. He has been treated for three years for PANS. He was doing better but not great. I found a new doctor who ran Lyme and co tests and found ehrlichia and anaplasma. He has been treated for those for nearly a year now with abx and he's doing really well.

If you want more info, I'd be happy to share.

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2roads
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Thanks CinMI. Sent you a PM.
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2roads
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Question about endocrine disruptors.

Do toxins which are endocrine disruptors, turn off the normal mechanisms and render them inactive permanently, or can time and detox restore their function?

Anyone know?

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OtterJ
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2 roads, it depends. My pituitary is functioning less now, but I feel like my lyme is under more control. Everyone is different so you or anyone else could have part or all restoration.

Vasopressin is related to the pituitary. Your son may also need to invest in a pad that alarms at the first bit of wet and helps retrain the mind to wake up with a full bladder.

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2roads
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Thanks Otter.

I thought about the alarm pad too.

I guess it just depends on the cause. If it is a lack of vasopressin at night then I think the pad might not really work.

How can retraining help if a anti-histamine is underproducing?

Sorry, I'm a little bit stupid right now.........

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MannaMe
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Have you ever had him at the chiropractor to be sure his spine in in place?

That can make a big difference in a short time if it is part of the problem.

Not an invasive treatment, nor is it really expensive.

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Keebler
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I hope you can avoid an alarm pad. I know of nothing that would be more unsettling to my nervous system. I would be just fried, in so many ways. And it would add to shame, embarrassment anxiety and depression -- nervousness about even going to sleep at all, I would think.

If I had had this situation as a child and they wanted to put an alarm pad on my bed, I would have run away . . . far, far away. For good. And I'm not being melodramatic. For a sensitive child, an alarm pad can be a very serious traumatic torture.

Even regular alarm clocks are very harmful to the nervous system of a regular person, though, IMO. They've been known to cause heart attacks in those with heart rhythm irregularities (QT) but it often is dismissed.
-

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2roads
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I haven't taken him to a chiropractor MannaMe. I am starting to have him get lymphatic messages. I will see what they think. Any type of manipulation though worries me.

I hear you Keebler. I know he has some type of over stimulation issue anyway now, and an alarm might make it worse.

I just keep preying it goes away on its own.

His uncle on my husbands side had bedwetting issues at night. I think he peed until he was, maybe 13. His parents eventually gave him a medicine for it, which I won't do. His uncle turned out to have reproductive problems with his sperm, and never good have kids.

I wonder what that means for us.

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TylerAdam
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I've had experience of the additives in tap water causing problems along these lines. They may effect the bladder, prostrate, and associated nerves and things. The additives may cause a allergic type reaction in the minority of the inner bladder or prostrate walls.

Try him on only mineral/bottled water or boiled tap water e.g. in hot drinks. No tap water direct from the tap. Although just one slip up can reset the condition back to square one for several weeks.

If you can, I'd try it for one month and see if it makes any difference to him. Good luck.

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2roads
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Never thought of this PV. Hmmmm.

I give him highly oxygenated, osmotic reversal water when he's home, and give him a metal water bottle of it to drink at school. But, it empties, and he fills it with tap there. I'll have to get control of that.

I just started getting into the groove of sending him with lunch in order to avoid the chemicals that go with school food.

There's so much to watch out for.

Thanks-

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ukcarry
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My son wet the bed regularly until about 11 or12 and occasionally until his mid-teens. I don't think he still does, now that he's 24. He was late out of nappies/diapers. I have a friend with a son who also took until his mid-teens to stop bedwetting.

We tried all sorts of things, but the main thing was to be very casual about it, as i'm sure you are, and protect bedding as well as you can. All the washing is a pain, I know,

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2roads
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thanks ukcarry. Did you find he wet through his pullups onto the sheet? Sometimes I feel like it's so much urine.

Does this run in your family?

My husband's brother had this.

His brother is also infertile. Do you think this issue is linked to infertility?

I hope not.

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Razzle
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I wet the bed at night until I was in College...talk about embarrassing...

What fixed this for me was sleeping on a Nikken magnetic mattress (no, I'm not selling these...).

I did not expect the magnetic mattress to fix the urination at night, but somehow it enabled my brain to finally process the "I gotta go" message from my bladder while I was asleep...

I wet my pants during the daytime until I was 10. All sorts of tests and such did not show any significant problems, other than I was unable to completely empty my bladder no matter how hard I tried.

So the doctors told my Mom it was behavioral... But I never could feel the urge to "go" until it was coming out already... I had many accidents at school, and socially it really impaired my ability to make friends...not to mention all the bullying & teasing...ugh!

So one more intelligent doctor suggested that the nerves involved with the urge to urinate hadn't finished growing in me...

But I have to wonder what role the Lyme/Bartonella played... It is thought that I got infected at age 4...

Oh, also, the alarm pad thing never worked for me...I slept too hard and wouldn't wake up...

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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2roads
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Oh Razzle....I'm sorry.

That sucks. Thanks for being so publicly honest. I can't imagine. What you must have endured.

How do you think the Magnetic mattress worked? I mean the science behind that. Do you think it really was that, or it finally just subsided (or you developed).

Have you hear if this is linked to male infertility?

Thanks

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ukcarry
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Yes, 2roads, he wet through onto the sheet and we had a special reinforced undersheet to help to protect the mattress; also a duvet with a special surface for bedwetting/eneuresis. I know what you mean about the sheer volume of the urine!!

There is an enzyme that may be involved in some way with bedwetting, but I can't remember the details.

Gosh, Razzle, you really haven't had it easy, one way or another. You are one brave person.

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2roads
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Ditto to Razzle.

The enzyme is mentioned above. I believe it's Vasopressin. It's an antidiuretic.

Thanks for sharing the urine volume.....wow. It's a lot.

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