Blindsided

[DebC]

There is hope! I posted this in another thread a few minutes ago:

 

"Her symptoms started literally overnight in January of 2008. She went to bed on a Wednesday night with no symptoms but on an antibiotic for a strep infection. She woke up consumed with fears and anxiety the next morning. This continued to ramp up over the next week or two. Looking back, she had minor exacerbations after strep infections from the time she was 4 on. We just thought she was going through "a phase" until the major onset at age 8. We are a bit over two years post serious exacerbation. With antibiotic treatment at the time of onset and now with a M/W/F course of azith prophylactically, she is symptom free. She still cleans a bit more than an average 10 year old, but that behavior was learned during her exacerbation and she is actually helpful around the house with keeping things in order. When we tell her to stop, she is able to. We see small flares if she is exposed to strep, even on antibiotics. We saw a flare in October when her brother had mycoplasma and we saw an uptic in cleaning this winter when her friend had strep and she contracted it. Her strep this winter was just a blip on the radar as she was on a prophylactic antibiotic and once we knew she had strep, she was put on augmentin. She is doing quite well now -- happy, well adjusted, enjoying ballet and jazz, school, and friends. She doesn't remember a lot of what happened during her time of extreme illness, thank heavens. There is definitely hope!"

 

As PANDAS parents, we do feel like we are standing on the edge of a cliff, waiting to see what happens next. It's hard to shake the worry, but I am gradually moving on. The worry is still there, but I'm incorporating it into my life and learning to push it to the back of my mind. Of course, it comes right back to the forefront whenever there is a strep outbreak at school which has pretty much been the constant since January at our school.

 

Here is a testimony that I gave at our church regarding our journey: http://www.watersedgefrisco.com/video/05232010.php

[NMom]

There is hope! I posted this in another thread a few minutes ago:

 

"Her symptoms started literally overnight in January of 2008. She went to bed on a Wednesday night with no symptoms but on an antibiotic for a strep infection. She woke up consumed with fears and anxiety the next morning. This continued to ramp up over the next week or two. Looking back, she had minor exacerbations after strep infections from the time she was 4 on. We just thought she was going through "a phase" until the major onset at age 8. We are a bit over two years post serious exacerbation. With antibiotic treatment at the time of onset and now with a M/W/F course of azith prophylactically, she is symptom free. She still cleans a bit more than an average 10 year old, but that behavior was learned during her exacerbation and she is actually helpful around the house with keeping things in order. When we tell her to stop, she is able to. We see small flares if she is exposed to strep, even on antibiotics. We saw a flare in October when her brother had mycoplasma and we saw an uptic in cleaning this winter when her friend had strep and she contracted it. Her strep this winter was just a blip on the radar as she was on a prophylactic antibiotic and once we knew she had strep, she was put on augmentin. She is doing quite well now -- happy, well adjusted, enjoying ballet and jazz, school, and friends. She doesn't remember a lot of what happened during her time of extreme illness, thank heavens. There is definitely hope!"

 

As PANDAS parents, we do feel like we are standing on the edge of a cliff, waiting to see what happens next. It's hard to shake the worry, but I am gradually moving on. The worry is still there, but I'm incorporating it into my life and learning to push it to the back of my mind. Of course, it comes right back to the forefront whenever there is a strep outbreak at school which has pretty much been the constant since January at our school.

 

Here is a testimony that I gave at our church regarding our journey: http://www.watersedgefrisco.com/video/05232010.php

 

Thank you! Your story sounds very similar and I realized while watching the video that you live in Frisco. I'm in The Woodlands, TX and my sister is in Frisco. I almost came to Frisco to look for a doctor but ended up going to Dr. L in DC. I had actually seen your news story before and think it's wonderful that you helped educate everyone who watched that newscast. It does give me hope to hear that others are having the same small blips that we seem to be having. My son is also well adjusted, happy and active - wish I could say the same for myself!! I'm trying...that's all we can do!

[DebC]

NMMom -- Such a small world! We lived in The Woodlands through 2002 before moving to the Dallas area. My husband worked for Enron. Glad you found treatment! Do you attend the support group in The Woodlands?

[NMom]

NMMom -- Such a small world! We lived in The Woodlands through 2002 before moving to the Dallas area. My husband worked for Enron. Glad you found treatment! Do you attend the support group in The Woodlands?

 

Yes- I found one of the other ladies when I started researching PANDAS and we started the group together with a wonderful nurse that does not have a PANDAS kid but has seen what PANDAS can do. It's usually just the three of us meeting now but it's still good to have some support locally.

[NMom]

Dr L had a major personal tradgedy early last summer.

 

My kids have had minor bumps when exposed to strep, that foe the most part go away a few days after exposure is removed.

 

I would agree to wait on the steroids- we have seen a pattern; with a bump in the road, we see symptoms crop up and plateau pretty quickly. With a relapse, we see either all symptoms back overnight, or a drastic worsening day by day. See what you think is going on over the next few days.

 

Is it a month long Rx- we have found that to be the only thing with sticking power....

 

You make a very good poitn about the different ways you've seen symptoms return. We are definitely not seeing a drastic overnight onset like last summer. This is very minor stuff and I immediately started panicking - but it has not been a sudden onset of major symptoms. Maybe that signals a smaller bump in the road. I do have a prescription for 30 days of steriods just in case. Right now I've just increased his antibiotic and we are watching...hate to use the steriods unless I really have to. Thank you for the feedback...information is key and you've helped a lot.