urination problem

[bmom]

My son had IVIG 10.5 weeks ago. Things had progressively gotten better with the tics. But now it seems that we are battling with the need to urinate. Prior to IVIG he had this for one night about 4 times. It would be stopped by a warm bath. He never had it during the day. Recently it seems to be nightly and some day time. It is not stopped by bath now. My question is, for PANDAS moms that have experienced this, what do you do? He is up til late hours, hates it and is now having trouble with it during school. What is this? A tic? Do you think I should have him checked for strep? He says he is not sick, but this has just recently come on and worsened and I dont know what to do about it. Any ideas? Do any of your children do this?

[Pudgeo]

My son has nver had this..but I would make sure there is not a bladder or urinary tract infection? drink cranberry juice and see if it stops? also I would look for signs of yeast as that make my son itch his crotch alot? good luck, Sarah

[Dedee]

My son did that for quite a while. So much so that we ended up at a pediatric urologist. Of course they couldn't find anything wrong. That was before we found out about PANDAS and got an official diagnosis. When we went over that with Dr. Murphy she said it was a common occurance with PANDAS kids and they should be strep tested when this occurs. Sometimes it occurs, (just as behavioral issues) right before the symptoms of illness and sometimes it correlates (sp?) more directly. In any event, I think it is absolutely worth testing. Is your son already on antibiotics? If so, that may be less likely.

 

Oddly enough my second son, who is not PANDAS, but has some anxiety issues, also has this issue intermittenly. I'm not entirely sure but his seems to be more of a compulsion to go back and forth to the bathroom. He never gets much out but insists he needs to go. I try to say as little as possible and it will eventually pass. Sounds like your son is really bothered by this, so I would start looking for possible causes. Sometimes it helps to increase fluid intake somewhat to flush bladder of irritants (that was the urologist only suggestion).

 

Hope things improve soon.

 

Dedee

[chrisw]

My son had IVIG 10.5 weeks ago. Things had progressively gotten better with the tics. But now it seems that we are battling with the need to urinate. Prior to IVIG he had this for one night about 4 times. It would be stopped by a warm bath. He never had it during the day. Recently it seems to be nightly and some day time. It is not stopped by bath now. My question is, for PANDAS moms that have experienced this, what do you do? He is up til late hours, hates it and is now having trouble with it during school. What is this? A tic? Do you think I should have him checked for strep? He says he is not sick, but this has just recently come on and worsened and I dont know what to do about it. Any ideas? Do any of your children do this?

I am very glad to hear that your son's tics are progressively getting better. My son is 9 and also began having tics with strep dx in Sept.08. We are currently awaiting proph. abx as our Ped consults with Dr. K. Enuresis is also one of my son's symptoms, and he hates it. Before we knew that it was from PANDAS, we had his sugar checked for diabetes, as that is a common symptom. Not trying to scare you, but something to consider ruling out? Also, do you think this could be "turning the pages" that I have been hearing about after IVIG, considering it is one of the symptoms of PANDAS? I really feel for him, and for you. Have most of his other symptoms also improved after IVIG? We are definitely considering doing this. I really hope things get better for your son soon with this.

Christie

[michele]

Glad to hear some symptoms are improving after IVIG. Dr. K told me tics are one of the areas that can somewhat remain, so it is great you are seeing an improvement in them. My son definately has had the urination frequency during PANDAS flare-ups. I don't know if you are currently on an antibiotic but he may need a stronger dose/type for a couple weeks. That is what worked best for us. It took 300 mg of Omnicef to resolve the urinary tics. He was previously on pen vk and augmentin and had the tics. I don't know if they are part of the compulsion or a tic but he also had to run in and out of the bathroom over and over. We did check the urine for an infection but it was always negative. I also notice when my son is coming down with a virus this frequency increases. Possibly your son is getting a cold, or has been exposed to strep. Another PANDAS mom told me they can still get strep on the antibiotics. If anyone gets strep in her house or if her son does get it they change his pen vk to clarithromycin. Hope this helps.

Michele

My son had IVIG 10.5 weeks ago. Things had progressively gotten better with the tics. But now it seems that we are battling with the need to urinate. Prior to IVIG he had this for one night about 4 times. It would be stopped by a warm bath. He never had it during the day. Recently it seems to be nightly and some day time. It is not stopped by bath now. My question is, for PANDAS moms that have experienced this, what do you do? He is up til late hours, hates it and is now having trouble with it during school. What is this? A tic? Do you think I should have him checked for strep? He says he is not sick, but this has just recently come on and worsened and I dont know what to do about it. Any ideas? Do any of your children do this?

[bmom]

I am wondering if it is "turning back the pages". It is that it came on a couple of weeks ago (3) with a day here or there and now it is steady. I emailed Dr. K. He is on antibiotic (Augmentin) and I am considering upping it for a few days to see if it will settle down. My daughter was sick this last week with a cold so perhaps that kicked his system up some. Who knows. Thanks for encouragement. These darn tics are hard even with the IVIG, but I have seen some improvement (80%) or so since IVIG. I am hoping for more as time passes (praying), but he is so much better. He still has separation anxiety at bed and some light sensitivity that provokes tics although it is better. His daytime fears and separation anxiety has ceased.

[Worried_Dad]

Hi, bmom:

 

My son had IVIG with Dr. K during the 1st week of October last year (coming up on 4 months). We've seen a lot of improvement - probably 60% overall - but his tics are the one area that has worsened since before IVIG. His motor tics are worse, and he developed a brand new vocal tic that has progressed from a bark to a shrill screech that makes us all cringe (despite our best efforts to ignore it or laugh it off, so he doesn't become more self-conscious about it).

 

We've had a lot of bugs infect our family this Winter; our other 2 boys just keep bringing stuff home from daycare and school, new bug every week. We think these are a big part of the problem for our PANDAS son. A sinus infection 1st week of January hit him especially hard and caused all his symptoms to worsen. (He was on augmentin at the time, too, but we had to do a 5-day course of zithromax to clear the sinus infection.)

 

Dr. K did suggest that the tics might indeed be "flipping the pages backward." Tics were among our son's very first symptoms in Spring of 2007. But Dr. K was surprised that the vocal tic emerged, worsened, and has not resolved for a couple of months now. Our son is 12, was sick for more than a year before IVIG, and had severe symptoms prior to IVIG, so Dr. K now believes he needs a 2nd round of IVIG to "finish the job." We're trying to get that scheduled through local docs.

 

If you're seeing 80% improvement post-IVIG, I'd say your son is on his way to recovery. Have talked to other parents whose kids took 9-18 months to fully resolve after IVIG or PEX. (That's what we're hoping for as well!)

 

Best of luck!!!

 

 

I am wondering if it is "turning back the pages". It is that it came on a couple of weeks ago (3) with a day here or there and now it is steady. I emailed Dr. K. He is on antibiotic (Augmentin) and I am considering upping it for a few days to see if it will settle down. My daughter was sick this last week with a cold so perhaps that kicked his system up some. Who knows. Thanks for encouragement. These darn tics are hard even with the IVIG, but I have seen some improvement (80%) or so since IVIG. I am hoping for more as time passes (praying), but he is so much better. He still has separation anxiety at bed and some light sensitivity that provokes tics although it is better. His daytime fears and separation anxiety has ceased.

[bmom]

Worried Dad,

Do you think you will move on to a second IVIG? Will insurance cover it if you do it locally? This whole thing is a maze even with IVIG!

[Worried_Dad]

Hi, bmom:

 

Yeah, that's the plan. We've already secured pre-approval from our health insurer (using diagnosis and procedure codes from Dr. K) and we see our local pediatric neurologist on Monday. We plan to beg her to schedule it locally (in-network doctor and hospital, etc.) and have a bunch of stuff to show her from Dr. K and other sources. We've only seen her once before, so I don't really know what to expect.

 

Just have to hope she's open-minded enough to read Dr. K's summary and contact him and/or Dr. Leckman if she wants more info. If she declines to order IVIG for us, I don't know what we'll try next; maybe a referral to a local immunologist. (The local DAN doc who diagnosed our son originally passed away in October, so we don't have a "go-to doc" in our area anymore.)

 

We'll definitely post results on the forum if we get the 2nd IVIG to let others know how it goes. Please wish us luck - we need a break right now!

 

 

Worried Dad,

Do you think you will move on to a second IVIG? Will insurance cover it if you do it locally? This whole thing is a maze even with IVIG!

[greeneyes48072]

If you hit a wall finding someone, let me know and you can try our peds dr in Bingham Farms. We are at the 9 week mark and my son's tics don't seem to be fading. We are 12 days into our attempt at 250mg Azith daily. He is a little less irritable and sleeps better, but tics are still going. After reading Dr K's info, our dr is slowly moving towards IVIG if we don't see improvement. He made the comment that he would want to call Dr K if we go that route, so that leads me to believe he's willing to do it...Good luck!

[michele]

I have never found a Dr. to write Azith in OH for PANDAS. When I told the neuro Dr. about Azith anti inflammatory properties as it is used in CF he said be glad your son doesn't have CF. Will your Dr. write scripts over state lines? Where is Bingham farms? We are currently on 250 mg of omnicef per day but still having tics, compulsions and emotional meltdowns. Now that he is on Abilify i wonder if the emotional behaviors could be coming from the meds? I even talked to Dr. K about a steroid burst, but without a Dr. willing to listen to his suggestions, unless I see Dr. K in person his advice is of little value.

 

Michele

If you hit a wall finding someone, let me know and you can try our peds dr in Bingham Farms. We are at the 9 week mark and my son's tics don't seem to be fading. We are 12 days into our attempt at 250mg Azith daily. He is a little less irritable and sleeps better, but tics are still going. After reading Dr K's info, our dr is slowly moving towards IVIG if we don't see improvement. He made the comment that he would want to call Dr K if we go that route, so that leads me to believe he's willing to do it...Good luck!

[greeneyes48072]

Our peds Dr already let us do a burst. We saw an 80% reduction with the tics. I like him. He always wants copies of any emails or websites I find with info. I'm not sure if by law he could write across state lines though. But he has been around a loooooooong while, so maybe he knows someone in your area. His name is John Dorsey.

 

http://www.iparenting.com/experts/bios/88.php

 

http://www.bhpediatrics.com/

[michele]

My sister lives in Dudee MI. How far is that from you? Because she is close to the border of OH they go to Toledo for lots of things. I found a ped rheum who has treated PANDAS in Toledo from someone here on the board. It will take four months to get in my appointment is in March. I wonder if your Dr. would treat and prescribe to someone in OH? Could you ask him next time you aee him? Does he take insurance? We are on an Anthem PPO. We have to go to a Network Dr. or they won't pay anything.

 

Thanks.

Michele

Our peds Dr already let us do a burst. We saw an 80% reduction with the tics. I like him. He always wants copies of any emails or websites I find with info. I'm not sure if by law he could write across state lines though. But he has been around a loooooooong while, so maybe he knows someone in your area. His name is John Dorsey.

 

http://www.iparenting.com/experts/bios/88.php

 

http://www.bhpediatrics.com/

[DawnMCH]

Hi, I'm new here (my sister has been around awhile: ColleenRN). This is my first post, but I wanted to let you know that my doctor in Ohio is prescribing longer term

Zithromax for my 8year old daughter. She was slow to get on board, but has been convinced by my daughter of the need for it - huge changes in her!

She is in Westlake, off the Clague Rd. exit. It takes us 35 minutes from Brunswick, so it shouldn't be too bad coming from North Canton.

Feel free to email me at justinsmama@hotmail.com if you want her name and number.

-DawnMCH

 

 

 

 

 

If you hit a wall finding someone, let me know and you can try our peds dr in Bingham Farms. We are at the 9 week mark and my son's tics don't seem to be fading. We are 12 days into our attempt at 250mg Azith daily. He is a little less irritable and sleeps better, but tics are still going. After reading Dr K's info, our dr is slowly moving towards IVIG if we don't see improvement. He made the comment that he would want to call Dr K if we go that route, so that leads me to believe he's willing to do it...Good luck!

[colleenrn]

Michele,

My sister lives in Brunswick, Ohio (just south of Cleveland) and FINALLY got her doctor to "believe" in PANDAS after talking to Dr. Leckman (Yale study- THANKS DIANA!) Her doctor has given her 30 days of Zithromax and they will "re-visit) it afetr 30 days. Do you live anywhere near Brunswick? Maybe her doctor will help you. Let me know if you want more info.

Colleen