posted
I am curious what outher parents have experienced in regards to GI symptoms in their kids with Lyme.
My 5 year old son has recently seen a gastro doc, due to bowel accidents for over a year. We advised the doc that he has Lyme, tested positive in July, clearly had symptoms (of Lyme)since May, and has had stomach pain since just prior to Lyme Dx.
He felt that my son's problem was constipation, (ie: impacted stools) and that it would be corrected with 5 days of enemas and increasing the fiber in his diet. When I asked him "what if he still has a problem after this?" He glared at me then he said "more enemas."
I am not debating the constipation thing. I'm sure he is. It's just, we've tried the diet thing, (prior to Lyme DX) and the best we would get was 3 or 4 consecutive days without an accident.
We tried Miralax (admittedly for only one week, the week before the Lyme DX) and it made him...constipated.
And the weirdest thing, it is very rare for him to miss even one day of having a BM! I cannot remember anytime in his life where he went more than 2 days without one. How does one become constipated, yet have BMs 3 or more times a day, consistently, almost every single day of their life?
I've read the Lyme symptom checklists, for GI stuff, I've seen diarhea and constipation, stomach pain. I've read the article on Bell's Palsy of the Gut. I'm just wondering, what, in everday language, have other kid's had to deal with with Lyme?
If it helps any, my son's CD57 was 25 in October. He was CDC positive through Quest in July, with over 20 EM rashes all over his body. He is still CDC positive through Igenix in late November.
All of his symptoms finally showed improvement in November, but he at times is too tired to walk, has mood swings/behavioral issues, OCD-like behavior (likes to scrub tile floors for hours, things have to be organized or done in very specific manners) joint and muscle pain, his whole body hurt all over, tired, dark circles under the eyes which turn red at times, red ears, light and sound sensitivity (yet oddly enough he yells a lot) headaches, tummy aches, and I'm sure there's more but I'm sure you all get the idea.
thanx so much for your feedback!! KP
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wish I could help you. Both of my children have Lyme, but thankfully this
Is not one of our issues.
Bumping you up for more help.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
is your DS being treated by a Lyme-literate doctor?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Yes, he is seeing an LLMD (who is quite active in the LDA), and there is an LLMD gastro doc near where we live, but he does not accept insurance.
So we opted for a gastro that was recommended by a Lyme friendly ID doc that was consulted as a second opinion under the recommendation of our LLMD. (can you follow all of that?!!) As there was a concern that there would be costly things like colonoscopies involved in the treatment of this issue.
I've done a search on this site, and in the past other kids and adults have apparantly had this issue, but none of those folks seem to post here anymore.
If Lyme causes constipation, then it seems to me that he could go through a round of enemas, clear up the current obstruction, then no matter what he eats, it'll happen again, and again, until the Lyme finally starts to clear up for him.
I was hoping someone who currently posts would be able to educate me on the gastro stuff, so I can get a better feel for whether or not this is a lyme thing, or an unrelated issue that Lyme would have no impact on, or if it's unrelated, but Lyme has exacerbated it.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Lymemommy-
Dr. J in CT is the one who would know best whether your DS's problems are Lyme related or not.
i couldn't follow the referral sequence you explained, but i know that finding the right doc is everything.
My 5 year old DS has congenital Lyme. I don't think it was Lyme related, but when he was about 5 months old he went a full 2 WEEKS without pooping once.
His pediatrician at the time freaked out, and told us to give our poor baby suppositories at least every 2-3 days to make him poop.
We went that route twice, and then both my DH and myself began to feel very strongly that the advice was simply wrong.
We switched peds to a one who was much more familiar with breast-fed babies, and she told us that a 2 week stretch without pooping was actually not unusual for a breast-fed baby.
No more suppositories, no more screaming baby while we did the deed, no worries,and no problems.
all thanks to the right doc.
for your babe- have you tried the simplest thing of making sure he drinks a great deal of water every day,and is he on probiotics?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
We were at Dr. J's office last week and he mentioned this very symptom in a ped lyme patient (bowel accidents, and/or intentional soiling). He seemed to indicate that it was lyme related.
It was a casual comment so I can't tell you more. Best of luck.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Dilly, Sorry about the confusing chain of doctor info.
In answer to the probiotics and water question, yes to both. Once we found tasty chewable probiotics, rather than powders that had to be added to food (which he was convinced was making him sick), that annoying little itch down below went away.
He drinks copious amounts of water. Little if any milk. Last year we were told to avoid it as it cause it causes/aggrivates constipation. We were never big on fruit juices, cause apple juice equals accidents, and we have more than enough of those. Of course now it's back on the menu, as advised by the gastro doc.
his diet is VERY limited, cause he's a picky five year old with a tender tummy.
Chicken nuggets. Sweet and sour chicken. Cereal. eggs (sometimes) brown and serv sausages. Fruit (pinapple, peaches and pears). "healthy" kid snacks (cheez-its, grahamm crackers, gold fish, that sort of thing) vanilla pudding. sometimes yogurt. On rare occasions pancakes, french toast and waffles. sometimes pasta with no sauce, or mashed potatoes. That's about it. Beverages include water, oj, and now fruit juice. Breakfest is the only meal that allows for variety.
He refuses (ademantly) to eat anything else, even foods that he has previously liked, such as broccoli, string beens, corn, ham, macaroni and cheese, and peanut butter and jelly.
I'm not sure what on that menu would make a kid constipated, particularly since he drinks lots of water. But apparently he is.
Thanks again everyone. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
My 16 yr old has GI issues. It is one of her biggest symptoms. She bounces back and forth between diarreah and constipation as well and has
stomach pains, upset stomach, vomitting too. Before Lyme dx (congenital) we did colonoscopy/endoscopy because they found blood in the stool. She had "ulcers" but no Hpylori. So that tells me, since 2 weeks later we got Igenex results back, that the ulcers were/are from Lyme.
She did 6 weeks on the - oh what was it called!!!??? - it coats the stomach so it can heal, cant recall it at the moment, too early, only my 2nd cup of coffee, LOL!!! It really helped put her over the edge - bump her up to feeling a bit better and getting some relief.
BUt 2 weeks after stopping it started back up again. Not to the same degree however.
My youngest - 10 - we dont have results on her - but I suspect highly! - has constipation much more than 16 yr old. She complains of her stomach all the time! She does the tums but recently started prilosec and that is helping her at this point.
Both are "regular" though, just as you are describing! But they still have the GI issues as major presentation.
It is so frustrating watching your children suffer! Even more so than me suffering...
I wish you the best of luck!!! Sounds like a terribly tough case - so many EM's - crazy!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Oh - one more thing - started 16yr old on probiotics as well - "Critical Care" - this seems to help her a great deal as well!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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