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I need some advice. We just did our first IVIG almost 3 weeks ago. My daughter is on full strength antibiotics since the beginning of September (zithromax). She has cvid and is also positive foe Lyme (whew!). Since we have been home, she has definitely had a sawtooth pattern recovery , but I can see improvements. In the last few days the urinary frequency has shot through the roof. She is leaving the bathroom, and then turning around to go back in. She knows there is nothing left to pee, and is getting so frustrated, but she has the urge. I know there is a physical component, it is not just the OCD. I think someone has strep,but not necessarily her. She and her sister were both negative, but I am probably going to go again.

 

My questions:

 

What else can we do? Should I call Dr. B to add more antibiotics to the mix? If she is just "the canary" but doesn't have strep what can help her feel more comfortable? It was the lead story on the news how rampant strep is in our area, could it be she is just reacting to all the strep in the area? She is homeschooled so she is not around other children much. Could this be part of the sawtooth recovery?

 

She is uncomfortable and crying because she knows logically she doesn't have to go, but she can't fight the urge. Help.

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I need some advice. We just did our first IVIG almost 3 weeks ago. My daughter is on full strength antibiotics since the beginning of September (zithromax). She has cvid and is also positive foe Lyme (whew!). Since we have been home, she has definitely had a sawtooth pattern recovery , but I can see improvements. In the last few days the urinary frequency has shot through the roof. She is leaving the bathroom, and then turning around to go back in. She knows there is nothing left to pee, and is getting so frustrated, but she has the urge. I know there is a physical component, it is not just the OCD. I think someone has strep,but not necessarily her. She and her sister were both negative, but I am probably going to go again.

 

My questions:

 

What else can we do? Should I call Dr. B to add more antibiotics to the mix? If she is just "the canary" but doesn't have strep what can help her feel more comfortable? It was the lead story on the news how rampant strep is in our area, could it be she is just reacting to all the strep in the area? She is homeschooled so she is not around other children much. Could this be part of the sawtooth recovery?

 

She is uncomfortable and crying because she knows logically she doesn't have to go, but she can't fight the urge. Help.

 

I would like to know the answer to this question too!!! This was my daughters only symptom for about a month and then bamb, she has her first exacerbation of Pandas. I have wondered if the urinary frequency was actually OCD or if there was a physical component. The urinary frequency is a hard symptom to deal with. My daughter also felt the need to change her underwear everytime she went to the bathroom. She always claimed she dribbled, although they felt dry to me.

Edited by Haileymadison
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This subject is near and dear to my heart.

 

My now 7 year old daughter has had, and has now, this issue.

 

This is how pandas started for her, and has been the most difficult symptom to get rid of. It started with frequent trips to the bathroom, frustration, not feeling dry, changing panties, and eventually avoiding using the bathroom for as long as possible. After PEX, this symptom was completely gone upon returning home from the hospital. It returned during a later flare up, finally went away during a steroid burst, and was gone most of the spring and summer. It has returned since early october since her friend/classmate/busmate had strep (probably undiagnosed for 2 wks).

 

A few things- Dr Latimer spoke to a urologist and said the following- there are two controls for urinating, one interior and one more exterior (HA- I am obviously not a biology scholar- can't remember the appropriate terms). The basal ganglia is the control center for the interior control.

 

So- I think there is a definate and real biological issue. Yet, my daughter has ocd. This physical issue, very quickly, became a major ocd problem.

 

At its worst- she spent close to 4 hours of tears and frustration in the bathroom. At its least (where we are now) it is worst in the AM, she tries to avoid going to the bathroom, is annoyed 5 minutes prior, and 5 minutes after using the bathroom (some yelling, whining and occasional tear, and then moves on.

 

Like pandas, I really think the treatment needs to be two pronged. You must address the medical issue: whether that is antibiotics, advil or steroids. (We are not doing anything for it now, other than our usual daily abx, because otherwise she is really good- and I prefer to save the other meds for when things are getting in the way of her happiness or her functioning). The second is therapy, specifically ERP.

 

There are many moms more versed in ERP, but a few suggestions:

 

Get the book "What to do when your brain gets stuck- A child's guide to overcoming oCD." This book was great for my dd's. I find it best to actually let them decide which tool they want to use to work one a compulsion. However, an idea would be to use habituation. We used the term GUTI (get used to it).

 

My daughter was 5.5 when we did this, you may have to adapt for an older child. We played a game where you drew the name of a piece of clothing out of the hat (dad's watch, dad's tie, mom's hat, etc). Parents play too- you wear the clothing item you pick and then complete a task (that is fun). At the end of the task, you can discuss how you Got Used To It. Initially the new item was really annoying, you really noticed it, but after time and distraction it went away. Then you tell her you are going to try to apply this to the bathroom. See if she can go to the bathroom, wipe, and then leave. Then immediately do some really fun and active activity. (set up a long obstacle course is an idea- time her and compare times each time) Then, she gets a reward. By this time, hopefully, she has gotten used to it.

 

It will get better :)

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Thanks for the replies so far. We are struggling so much right now. We just tried to eat dinner, she won't eat, won't drink, are keeps running to the bathroom. Needless to say, the stress of the company that is arriving tonight for the holiday in addition to the ramping up is not making for nice night at all.

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Thanks for the replies so far. We are struggling so much right now. We just tried to eat dinner, she won't eat, won't drink, are keeps running to the bathroom. Needless to say, the stress of the company that is arriving tonight for the holiday in addition to the ramping up is not making for nice night at all.

So sorry to hear you are going through this. This is one of the symptoms that is most annoying and time-consuming... ds can spend half the day in the bathroom when he is doing poorly. He also has had problems at night, and that was cutting into his sleep. At some point I suggested wearing pads, thinking he would totally be offended, but he actually embraced the idea. Now he just wears a pad every night and does not have to worry about soaking the bed. A few weeks ago it was worse, and he even asked if we could get something bigger, more like a diaper!

So maybe if you give your daughter a pad, maybe she will feel "safe" and at least she can get something done (like eating dinner maybe?)

I remember too ds changing constantly, not just underwear, but everything! He was running out of clothes, there were piles and piles of laundry, we had to change his sheets almost every night... The first steroid burst took it all away, he was in-and-out of the bathroom in a minute, no more issues whatsoever. So to me, it is a PANDAS issues, but probably more related to inflammation? Maybe if you tried a few days of ibuprofen and see if that helps?

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This is a problem I have had myself. Trust me, its real physical issue and I have no OCD.... It feels like you 'almost' have a bladder infection without the associated pain. Very little release and the urge. It did get worse initially with antibiotic treatment and then eventually went away. I assume the increase symptoms along with the antibiotics was herxing (I am currently being treated for LD).

 

How is your daughter being treated for Lyme? It wasn't until I was on multiple antibiotics that the problem truly went away. With just Azithromycin it was worse 'at times'. I also found out that I had excess WBC and RBC dumping into my urine which might have been the cause but is also associated with chronic infection. Elizabeth is right, Lyme does love the bladder.

 

I feel for anyone that suffers from this issue.

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This was my daughter's first FANDAS symptom that we really noticed about 3 months before the major exacerbation. Because she hates public bathrooms she always asks to go on the side of the road if we are driving somewhere, (and we are always on the road visiting her siblings at college/school). We would always try to get her to wait 10 more minutes, with her asking to stop every 20 minutes or so. Finally we both watched her going one time...and we were shocked - a huge quantity came out! Boy did we ever feel badly for making her wait all of the time. That has really subsided with abx and steroid treatments. I know with allergies this is sometimes a symptom as well. I believe I have read that in that case it is the body's way of getting rid of a perceived toxin.

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I think the tricky thing is that it can be any of the following:

1. a real physical symptom (so check for UTI's, see what is actually coming out, ask some questions). If they are wetting at night, clearly that is not OCD, that is 100% physical.

2. a real physical symptom (a feeling of needing to go, but not really having anything) which is then picked up and exacerbated by OCD. In this case, you can actually teach your brain through ERP therapy, that you can ignore this symptom.

 

In both cases, I do think that a real issue is the start to this symptom. OCD is a wicked illness, however, and it can take a real symptom and make it dominate a child's life - and if they are not eating, jeapordize their health. So if the child cannot even eat, then while you are waiting for medical interventions to help, I would recommend doing ERP therapy for this. The child needs to function, and with some coaching to use the tools of ERP, this can be a relatively easy symptom to work on, although it is never really easy to deal with OCD.

 

I have a number of posts on this topic - I can't find them from here tonight, but IF you want ERP tips for this problem, please let me know & I'll try to find tomorrow night or will write up a new one. I completely understand if you would prefer to find a medical answer first. In the meantime, you may find it helpful to read the workbook that DCMom recommends, as that would get you ready for doing ERP should you find you need it as one of the tools in your toolbox.

Edited by Meg's Mom
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This was one of my son's issues before we even suspected PANDAS. Our urologist did a flow test and his internal sphincter muscle would not relax enough to empty the bladder. They ended up putting him on believe it or not, prostate medicine, which helped a lot. His was truly a physical symptom, not an OCD symptom. I don't know if there are natural ways to help relax the muscle. Maybe take her to a urologist to rule out any physical symptoms first?

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a similar basal ganglia/urinary thing happens with parkinson's dz http://pdring.com/urinary-disturbance-in-parkinson’s-disease-overactive-bladder.htm

 

Just as a crazy idea...has any had their child drink a whole bunch of cranberry juice. I know it's helped me when I've had a bladder infection. I wasn't sure why it helped, but maybe it'd also help PANDAS kids. Worth a try?

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