encopresis

[michele]

Are any of you having encopresis or soiling self trouble with your PANDAS kids? I don't know if it is from the ADHD or what but he, seven years old, rarely makes it to the bathroom before soiling. He makes sucha mess in the bathroom plus in his pants and he smells. As if we didn't have enough issues to deal with. Any ideas on how to solve this one? I think it started a few months ago when we started Strattera but we stopped it last month and the soiling is worse now. Before it was loose and now it is hardened. Sorry to be so graphic. Plus his bottom is so irritated and he scratches at it constantly.

 

Michele

[amy s]

Are any of you having encopresis or soiling self trouble with your PANDAS kids? I don't know if it is from the ADHD or what but he, seven years old, rarely makes it to the bathroom before soiling. He makes sucha mess in the bathroom plus in his pants and he smells. As if we didn't have enough issues to deal with. Any ideas on how to solve this one? I think it started a few months ago when we started Strattera but we stopped it last month and the soiling is worse now. Before it was loose and now it is hardened. Sorry to be so graphic. Plus his bottom is so irritated and he scratches at it constantly.

 

Michele

 

Hi Michelle,

Sorry to hear your ds is dealing with this. My dd did have this strange phenomenon at the height of her most recent exacerbation. It lasted right along with all the rest of the symptoms for about 5 months and vanished the day after IVIg. I don't know what else to tell you about this.

 

My child does take a supplement "Mastic" and that seems to kept her gut problems under control?? I don't know. She doesn't seem to need a probiotic much at all anymore despite Augmentin 250mg daily. It (Mastic) was recommended by a lyme disease specialist that she saw once who is also knowledgeable on PANDAS. I did read that it was not tested for use past 30 days but we were given a 90 day supply and have had no problems. At this point I'm deathly afraid to change anything in our regimen.

 

Also have you checked for parasites? Just a thought. We had checked but there were none.

 

We got special 'wet' wipes for the bathroom. It seemed to happen for my dd even when she would sneeze she would be incontinent of stool. And she was completely paranoid of other people being able to 'smell her butt' and always in the bathroom to try to clean herself up but would inevitably make more of a mess.

Good luck to you.

 

It is simply amazing how many parts of their precious little lives that PANDAS infiltrates. It's sickening.

Keep us posted.

Regards,

amy s

[bronxmom2]

My son sometimes has "accidents"-- seems to wait too long to go to the bathroom. I never would have thought to connect this to the PANDAS, though now that I see this...

[michele]

We did two rounds of worm pills. He has been digging in his bottom since Feb. I at first thought it was hygene from poor wiping. Then thought it was connected to meds since Strattera can bother their tummies and then we stopped it, then I thought of yeast. Yesterday we started the Kefir, and Primodophilus again. Also I thought it could be a tic making him pick his bottom. I feel so bad because it has gotten this bad. I will call the ped tomorrow and see what she suggests. These Dr's don't seem to get any of these symptoms though!

 

Are any of you having encopresis or soiling self trouble with your PANDAS kids? I don't know if it is from the ADHD or what but he, seven years old, rarely makes it to the bathroom before soiling. He makes sucha mess in the bathroom plus in his pants and he smells. As if we didn't have enough issues to deal with. Any ideas on how to solve this one? I think it started a few months ago when we started Strattera but we stopped it last month and the soiling is worse now. Before it was loose and now it is hardened. Sorry to be so graphic. Plus his bottom is so irritated and he scratches at it constantly.

 

Michele

 

Hi Michelle,

Sorry to hear your ds is dealing with this. My dd did have this strange phenomenon at the height of her most recent exacerbation. It lasted right along with all the rest of the symptoms for about 5 months and vanished the day after IVIg. I don't know what else to tell you about this.

 

My child does take a supplement "Mastic" and that seems to kept her gut problems under control?? I don't know. She doesn't seem to need a probiotic much at all anymore despite Augmentin 250mg daily. It (Mastic) was recommended by a lyme disease specialist that she saw once who is also knowledgeable on PANDAS. I did read that it was not tested for use past 30 days but we were given a 90 day supply and have had no problems. At this point I'm deathly afraid to change anything in our regimen.

 

Also have you checked for parasites? Just a thought. We had checked but there were none.

 

We got special 'wet' wipes for the bathroom. It seemed to happen for my dd even when she would sneeze she would be incontinent of stool. And she was completely paranoid of other people being able to 'smell her butt' and always in the bathroom to try to clean herself up but would inevitably make more of a mess.

Good luck to you.

 

It is simply amazing how many parts of their precious little lives that PANDAS infiltrates. It's sickening.

Keep us posted.

Regards,

amy s

[bronxmom2]

Could the itchy bottom be perianal strep?

[T_Mom]

Hi Michele, yes our daughter had both urinary and bowel accidents periodically during the worst exacerbation last summer. It actually started about two months before her other symptoms exploded (OCD and tics.) Urinary incontinence is on the list for possible PANDAS symptoms (NIH--or Swedo work), but the bowel accidents were also disturbing for a 10 year old.

 

I am sorry, I cannot remember, is your dear child on antibiotics now? Were you ever able to get a doctor to give you the month of full strength antibiotics to try? Have you had high ASO and DNASE titers (not that those are fool-proof certainly)? I do think if it is PANDAS-type incontinence these issues go away when the inflammation goes away.

 

Take care,

T.Mom

[mom md]

My son has that issues and it is from inflammation of the basal ganglia. He has had that issue since he got PANDAS. Soem kids get urinary issues but because it is from brain swelling you get a mixed bag of tricks. When the Basal ganglia is inflammed the messages to the brain can not be filtered. All messages are equally compeating. He does not get the message and doesn't have to go until the bowle movement is right there. The treatment for this whole thing is to treat the swelling in the basal ganglia. Drugs like Strattera treat symptoms not the cause. I am starting to believe that IVIG may be the only true treatment.

Claire

Are any of you having encopresis or soiling self trouble with your PANDAS kids? I don't know if it is from the ADHD or what but he, seven years old, rarely makes it to the bathroom before soiling. He makes sucha mess in the bathroom plus in his pants and he smells. As if we didn't have enough issues to deal with. Any ideas on how to solve this one? I think it started a few months ago when we started Strattera but we stopped it last month and the soiling is worse now. Before it was loose and now it is hardened. Sorry to be so graphic. Plus his bottom is so irritated and he scratches at it constantly.

 

Michele

[michele]

Before we went on prophylaxis antibiotics he had the urinary issues where he ran in and out of the bathroom constantly thinking he had he urge to urinate but only a drip ever came out. That was when his symptoms were really waxing. I thought it was from the compulsions. We were on the Strattera for the ADHD symptoms. It just seemed to give him tummy issues and diareah so we stopped it. I bought him wipes and use vaseline on it. He has gotten it on everything even the floor resisters in his room, bedding, carpeting and driveway and walls. I don't know why he was wiping it there? Maybe because it itches? I really feel we need to see an expert in PANDAS again. I just don't think I will find them in OH and those in other states won't prescribe anything will they? His temper issues are better and his school work since the Celexa, but now this. Poor kid. I think once school is out I will see about the steroid and IVIG. Dr. K gave the email request but I have to get a Dr. to administer it. I should probably seek out a rheum or IDD again. I have a new neuro next month but I don't know how she feels about PANDAS. It is too mny Dr's and putting him through too many appointments.

 

Is there a way to measure or see the brain inflammation? I have not had tiers run in ages. I wonder if I should get the steroid treatment now and see if it helps? I am so scared the symptoms will get worse as Chemar's husbands did. How else can you treat the brain inflammation? Cquote name='mom md' date='May 12 2009, 10:43 PM' post='32900']

My son has that issues and it is from inflammation of the basal ganglia. He has had that issue since he got PANDAS. Soem kids get urinary issues but because it is from brain swelling you get a mixed bag of tricks. When the Basal ganglia is inflammed the messages to the brain can not be filtered. All messages are equally compeating. He does not get the message and doesn't have to go until the bowle movement is right there. The treatment for this whole thing is to treat the swelling in the basal ganglia. Drugs like Strattera treat symptoms not the cause. I am starting to believe that IVIG may be the only true treatment.

Claire

Are any of you having encopresis or soiling self trouble with your PANDAS kids? I don't know if it is from the ADHD or what but he, seven years old, rarely makes it to the bathroom before soiling. He makes sucha mess in the bathroom plus in his pants and he smells. As if we didn't have enough issues to deal with. Any ideas on how to solve this one? I think it started a few months ago when we started Strattera but we stopped it last month and the soiling is worse now. Before it was loose and now it is hardened. Sorry to be so graphic. Plus his bottom is so irritated and he scratches at it constantly.

 

Michele

[dcmom]

The first symptom of pandas for my daughter, (we did not know it was pandas at the time), were urination issues. All of a sudden one day she started running to the bathroom constantly. She was also extremely agitated. She constantly felt there was "a drip". This led to excessive wiping rituals, spending hours a day in the bathroom, getting "stuck" on the potty, and finally totally avoiding using the bathroom, holding it, and having accidents at home, at school, etc.

 

During that time we were to the ped 2x for urination issues combined with behavior problems. Both times we were sent home with vaginal cream and told to use "positive reinforcement". Turns out urinary issues/toileting rituals are a classic sign with pandas, and written about in a very good study. If only the doctor knew that, or could think out of the box, or listened to me, and had screened with a strep test, we could have avoided a few more painful weeks.

 

She is almost back to 100%, this is her last issue. It is so much better now, no accidents. But she still avoids using the bathroom as much as possible, and complains of a "wet hiney" after she does. I wonder, since this is brain inflammation, since this was the first symptom- does it make sense that it will be the last to go?

[T_Mom]

The first symptom of pandas for my daughter, (we did not know it was pandas at the time), were urination issues. All of a sudden one day she started running to the bathroom constantly. She was also extremely agitated. She constantly felt there was "a drip". This led to excessive wiping rituals, spending hours a day in the bathroom, getting "stuck" on the potty, and finally totally avoiding using the bathroom, holding it, and having accidents at home, at school, etc.

 

She is almost back to 100%, this is her last issue. It is so much better now, no accidents. But she still avoids using the bathroom as much as possible, and complains of a "wet hiney" after she does. I wonder, since this is brain inflammation, since this was the first symptom- does it make sense that it will be the last to go?

 

That is an interesting thought dcmom-- I have heard of Dr. K.s reference to "turning back the pages" sometimes happening after IVIG, and though I have not heard this from Dr. K. himself, I have wondered if this phenomena occurred with brain healing.

[ShaesMom]

My dd has been doing this for the last three years. She doesn't even try to make it the bathroom. She has always told us she doesn't need to go and/or doesn't feel it. We are thinking the PANDAS started 1 1/2 years ago but looking through her history she actually had her first strep infection about six months prior to her starting the pooping issues. So, maybe this was the first symptom and we just never caught it. She never had bathroom problems before then.

 

We will have her sit on the pot and she will go pee says she has tried and get up. Five to ten minutes later we will smell it in her pants (just a little bit will be there). She'll go sit on the toilet again and nothing will happen and then an hour later she will have dirty underwear again. This can happen up to four times a day. It is very frusterating. She doesn't even seem to care that her pants are dirty.

 

We have been to the GI and had tests run. The answer we get is that it is a behavior thing and we just need to get her to sit on the toilet after each meal etc... Like we haven't tried! We have also upped her fiber intake but haven't seen much in way of results. She was on Miralax for a long time--big mistake that stuff is poison and has never been tested on children.

 

I asked her about it again yesterday after reading your post and she said that her brain doesn't tell her when it is time to go. Maybe it is all related. I do know she has periods where she can go weeks without any problems. Of course this often occurs during the summer or holidays. So, is it because she is not at school or because she isn't around sick kids? Weekends are still a problem during the school year so maybe it is the PANDAS. Very interesting thought.

 

Sam