Update and brief recap

[dcmom]

I have been wanting to update the forum for a couple of months, but wanted school and a recent illness to end- to see where we ended up.

 

A brief recap for those who don't know my story:

 

My youngest daughter Julia was diagnosed with PANDAS in 2/09 after an overnight onset and snowballing of ocd type behavoirs over 4 a week period, and a positive throat culture. A short list of her pandas symptoms: ocd, temper tantrums, urinary frequency, restrictive eating, difficulty sleeping, pale face with dark circles, extreme emotional lability, major sensory issues, aversion to dressing, bathing, getting hair brushed, number and letter difficulty, homework aversion. We treated with several antibiotics with no success. A few weeks after diagnosis she started zithromax. After 30 days of full strenght zith- she was almost at 100%. Unfortunately a T&A a month later caused an overnight return of all symptoms. During the next three months, we tried antibiotics and steroids- but Julia just could not maintain improvement. We opted for plasma pheresis for her in October. Immediately following pex she had a total remission of symptoms- it was incredible. Unfortunately, within a month, she contracted H1N1. Within 24 hours of recovery, she was backsliding dramatically into another episode. We immediately started a month long steroid burst. By the second dose, the backslide stopped, and by the fourth dose, she was back to 90%. Julia remained fairly consistent at that 90% level during the rest of the school year. She is highly sensitive to strep, and has not gone a week in school without a classmate being ill. She would have 3-4 days of heightened emotional lability, and very minor ocd resurfacing when there was strep exposure. This would go away on its own. In April, we opted for another steroid burst, due to consistent strep exposure, and feeling like she was not getting back to her 90% base line. The steroid got her back to 90%. The last week of school she was sick with a virus. During recovery, it caused heightened emotional lability- but no ocd. Advil dramatically reduced these issues. She is now recovered from the virus, and out of school for a week. I would have to say, that for the last 4 days, she is at 100%. As I am writing this- I am thinking that the last 10% of improvement might be due to the lack of exposure to illness by being in school.

 

Julia's older sister Caroline contracted strep two weeks later. She was diagnosed with strep and treated with amoxicillin. She also developed pandas immediately, although we did not catch it with her because it presented differently, and was a bit milder. Caroline's symptoms at the time (in retrospect) were: ocd (she hid it- and we were not aware of it), daily stomach aches, difficulty sleeping, depression, difficult/oppositional behavior. We knew something was wrong, spent about 5 mos pursuing the stomach ache symptoms with no conclusion. Finally, after reading and re reading Dr K's synopsis for adolescent onset pandas- I knew that she had it. We started treating her with antibiotics in November, and did a steroid burst in December- it was amazing- we had a girl back we hadn't seen in 9 mos! Unfortunately, Jan 1 she got sick with a simple cold. She spiralled down hill really fast. The OCD went into panic mode, eventually she couldn't go to school- or even out much. She became mildly aggressive, extremely fragile, depressed, and riddled with ocd. It was horrifying. We got her into the hospital for plasma pheresis in early March. By the time she came home from the hospital, I would say her symptoms were reduced by 70%. There were still worries- but no panic. She went back to school, and started therapy. She has now come almost full circle! We did do a month long steroid burst in April to try to accelerate her progress, it did really help.

 

This week I am visiting my Mom's with them. Julia has been wearing panties all week- sounds weird, I know- but when pandas hit she got MAJOR sensory issues, and hasn't been able to wear panties in over a year. Caroline is participating in a ballet camp. Ballet was her passion prior to pandas- but ocd took that away. They are happy, getting along, sleeping and eating! I am relaxed (except hoping I am not jinxing things).

 

Reflections: I do not hold any hope that they are "cured". My only hope is, that we can manage episodes, and that they will be as few and as far between as possible. I hate to say it, because it is next to impossible to get- but I really think pex is a great route for our kids. Of course underlying infections, and immune deficiencies need to be adressed with antibiotics, and possibly IVIG- but pex is SO great for these kids because of the speed of relief. I also know that being in tune with my kids is so important. A temporary spike or blip for my kids seems to be an immediate jump in emotional lability, and some ocd that stays steady (which should be managed with advil, patience and love vs. an episode that worsens by almost 100% each successive day (which needs to be adressed asap with a thorough check up and a steroid burst).

 

My kids are still on daily zithromax- I am not sure when that will change. We do probiotics daily. Advil as needed.

 

I try hard not to overbook or overstress them. Health is our priority over everything else. That includes healthy food, plenty of sleep, and free time. School and hobbies (extracurricular) are equal to each other, and a far second behind health. I pull Julia out of school if I feel she is acting like she is being exposed. They are young, so we take advantage of not worrying too much about make up work. Their hobbies (horseback riding and piano) are therapeutic for them, and therefore are as important to me right now as school.

 

It is amazing, after such a long year, to have my kids back- happy- blossoming. Really puts life in perspective. Hope that it lasts......

[forjpj]

So happy to hear things are going so well!!

Sarah

[Fixit]

What a Wonderful Story...for 2 kids!!!

it is also hopefull in the aspect it wasn't smooth...needed to be managed but you made it!!!!!!

And why not hope for a cure...i would say if you make it a full year...i would sttill be very caustious...but if you can make it 2 years.....

i would be extremely HOpefule and confident...

THANK YOu for not just going on and living a happy life and leaving us behind w/o this GREAT information!!!!

 

 

I have been wanting to update the forum for a couple of months, but wanted school and a recent illness to end- to see where we ended up.

 

A brief recap for those who don't know my story:

 

My youngest daughter Julia was diagnosed with PANDAS in 2/09 after an overnight onset and snowballing of ocd type behavoirs over 4 a week period, and a positive throat culture. A short list of her pandas symptoms: ocd, temper tantrums, urinary frequency, restrictive eating, difficulty sleeping, pale face with dark circles, extreme emotional lability, major sensory issues, aversion to dressing, bathing, getting hair brushed, number and letter difficulty, homework aversion. We treated with several antibiotics with no success. A few weeks after diagnosis she started zithromax. After 30 days of full strenght zith- she was almost at 100%. Unfortunately a T&A a month later caused an overnight return of all symptoms. During the next three months, we tried antibiotics and steroids- but Julia just could not maintain improvement. We opted for plasma pheresis for her in October. Immediately following pex she had a total remission of symptoms- it was incredible. Unfortunately, within a month, she contracted H1N1. Within 24 hours of recovery, she was backsliding dramatically into another episode. We immediately started a month long steroid burst. By the second dose, the backslide stopped, and by the fourth dose, she was back to 90%. Julia remained fairly consistent at that 90% level during the rest of the school year. She is highly sensitive to strep, and has not gone a week in school without a classmate being ill. She would have 3-4 days of heightened emotional lability, and very minor ocd resurfacing when there was strep exposure. This would go away on its own. In April, we opted for another steroid burst, due to consistent strep exposure, and feeling like she was not getting back to her 90% base line. The steroid got her back to 90%. The last week of school she was sick with a virus. During recovery, it caused heightened emotional lability- but no ocd. Advil dramatically reduced these issues. She is now recovered from the virus, and out of school for a week. I would have to say, that for the last 4 days, she is at 100%. As I am writing this- I am thinking that the last 10% of improvement might be due to the lack of exposure to illness by being in school.

 

Julia's older sister Caroline contracted strep two weeks later. She was diagnosed with strep and treated with amoxicillin. She also developed pandas immediately, although we did not catch it with her because it presented differently, and was a bit milder. Caroline's symptoms at the time (in retrospect) were: ocd (she hid it- and we were not aware of it), daily stomach aches, difficulty sleeping, depression, difficult/oppositional behavior. We knew something was wrong, spent about 5 mos pursuing the stomach ache symptoms with no conclusion. Finally, after reading and re reading Dr K's synopsis for adolescent onset pandas- I knew that she had it. We started treating her with antibiotics in November, and did a steroid burst in December- it was amazing- we had a girl back we hadn't seen in 9 mos! Unfortunately, Jan 1 she got sick with a simple cold. She spiralled down hill really fast. The OCD went into panic mode, eventually she couldn't go to school- or even out much. She became mildly aggressive, extremely fragile, depressed, and riddled with ocd. It was horrifying. We got her into the hospital for plasma pheresis in early March. By the time she came home from the hospital, I would say her symptoms were reduced by 70%. There were still worries- but no panic. She went back to school, and started therapy. She has now come almost full circle! We did do a month long steroid burst in April to try to accelerate her progress, it did really help.

 

This week I am visiting my Mom's with them. Julia has been wearing panties all week- sounds weird, I know- but when pandas hit she got MAJOR sensory issues, and hasn't been able to wear panties in over a year. Caroline is participating in a ballet camp. Ballet was her passion prior to pandas- but ocd took that away. They are happy, getting along, sleeping and eating! I am relaxed (except hoping I am not jinxing things).

 

Reflections: I do not hold any hope that they are "cured". My only hope is, that we can manage episodes, and that they will be as few and as far between as possible. I hate to say it, because it is next to impossible to get- but I really think pex is a great route for our kids. Of course underlying infections, and immune deficiencies need to be adressed with antibiotics, and possibly IVIG- but pex is SO great for these kids because of the speed of relief. I also know that being in tune with my kids is so important. A temporary spike or blip for my kids seems to be an immediate jump in emotional lability, and some ocd that stays steady (which should be managed with advil, patience and love vs. an episode that worsens by almost 100% each successive day (which needs to be adressed asap with a thorough check up and a steroid burst).

 

My kids are still on daily zithromax- I am not sure when that will change. We do probiotics daily. Advil as needed.

 

I try hard not to overbook or overstress them. Health is our priority over everything else. That includes healthy food, plenty of sleep, and free time. School and hobbies (extracurricular) are equal to each other, and a far second behind health. I pull Julia out of school if I feel she is acting like she is being exposed. They are young, so we take advantage of not worrying too much about make up work. Their hobbies (horseback riding and piano) are therapeutic for them, and therefore are as important to me right now as school.

 

It is amazing, after such a long year, to have my kids back- happy- blossoming. Really puts life in perspective. Hope that it lasts......

[Phasmid]

This is a perfect synopsis for how complicated this disorder is. It gave me a headache reading it! How did you survive this? So glad things are better, and you need to give yourself a big hug and pat on the back for your diligence in seeing your kids through to recovery. Amazing...

[mama2alex]

I'm so so happy for you! Thanks for sharing this wonderful update!! I hope you have the wonderful summer you all deserve.

[peglem]

Thanks for sharing, that is really great to hear!

[T_Mom]

What an insightful write up DCMom! --and how wonderful it is to hear things are going well--may it continue!

 

You have been the guiding force and impetus for healing for your girls and you have captured the experience beautifully in this update, thank you.

 

I wish every parent with a child hit by sudden-onset OCD could read this account... it would give them hope.

 

You have done an amazing job -- I hope you get some rest this summer too--

TMom

[Kay]

Nice to read the good news. Happy for you and the girls.

[LNN]

If a nurse had told me in the delivery room that I would not only understand, but gain hope from a mom who celebrated the fact that her daughter was wearing panties for a week, I never would have believed her. What a strange world we Pandas families live in.

 

I am so glad for your family, and doing a happy dance for Julia in her panties and Caroline in her dance shoes - now THAT is as close to 100% as you can get - you must be jumping for joy!

[kimballot]

If a nurse had told me in the delivery room that I would not only understand, but gain hope from a mom who celebrated the fact that her daughter was wearing panties for a week, I never would have believed her. What a strange world we Pandas families live in.

 

I am so glad for your family, and doing a happy dance for Julia in her panties and Caroline in her dance shoes - now THAT is as close to 100% as you can get - you must be jumping for joy!

 

LLM - I am LOL I couldn't agree more! Congrats to DC mom and girls for successful management!

[Debbie1]

I am so glad to hear your girls are doing well...hoping to hear of their continued success!!

[MomWithOCDSon]

Another happy story! Cheers to you and your girls! Thanks for giving us all another bright light to look forward to at the end of the tunnel!

[Kayanne]

I am SO happy to hear that the latest illness didn't create any problems....I got teary reading your update...so so so HAPPY for your family right now !!!!!

[saidie10]

I have been wanting to update the forum for a couple of months, but wanted school and a recent illness to end- to see where we ended up.

 

A brief recap for those who don't know my story:

 

My youngest daughter Julia was diagnosed with PANDAS in 2/09 after an overnight onset and snowballing of ocd type behavoirs over 4 a week period, and a positive throat culture. A short list of her pandas symptoms: ocd, temper tantrums, urinary frequency, restrictive eating, difficulty sleeping, pale face with dark circles, extreme emotional lability, major sensory issues, aversion to dressing, bathing, getting hair brushed, number and letter difficulty, homework aversion. We treated with several antibiotics with no success. A few weeks after diagnosis she started zithromax. After 30 days of full strenght zith- she was almost at 100%. Unfortunately a T&A a month later caused an overnight return of all symptoms. During the next three months, we tried antibiotics and steroids- but Julia just could not maintain improvement. We opted for plasma pheresis for her in October. Immediately following pex she had a total remission of symptoms- it was incredible. Unfortunately, within a month, she contracted H1N1. Within 24 hours of recovery, she was backsliding dramatically into another episode. We immediately started a month long steroid burst. By the second dose, the backslide stopped, and by the fourth dose, she was back to 90%. Julia remained fairly consistent at that 90% level during the rest of the school year. She is highly sensitive to strep, and has not gone a week in school without a classmate being ill. She would have 3-4 days of heightened emotional lability, and very minor ocd resurfacing when there was strep exposure. This would go away on its own. In April, we opted for another steroid burst, due to consistent strep exposure, and feeling like she was not getting back to her 90% base line. The steroid got her back to 90%. The last week of school she was sick with a virus. During recovery, it caused heightened emotional lability- but no ocd. Advil dramatically reduced these issues. She is now recovered from the virus, and out of school for a week. I would have to say, that for the last 4 days, she is at 100%. As I am writing this- I am thinking that the last 10% of improvement might be due to the lack of exposure to illness by being in school.

 

Julia's older sister Caroline contracted strep two weeks later. She was diagnosed with strep and treated with amoxicillin. She also developed pandas immediately, although we did not catch it with her because it presented differently, and was a bit milder. Caroline's symptoms at the time (in retrospect) were: ocd (she hid it- and we were not aware of it), daily stomach aches, difficulty sleeping, depression, difficult/oppositional behavior. We knew something was wrong, spent about 5 mos pursuing the stomach ache symptoms with no conclusion. Finally, after reading and re reading Dr K's synopsis for adolescent onset pandas- I knew that she had it. We started treating her with antibiotics in November, and did a steroid burst in December- it was amazing- we had a girl back we hadn't seen in 9 mos! Unfortunately, Jan 1 she got sick with a simple cold. She spiralled down hill really fast. The OCD went into panic mode, eventually she couldn't go to school- or even out much. She became mildly aggressive, extremely fragile, depressed, and riddled with ocd. It was horrifying. We got her into the hospital for plasma pheresis in early March. By the time she came home from the hospital, I would say her symptoms were reduced by 70%. There were still worries- but no panic. She went back to school, and started therapy. She has now come almost full circle! We did do a month long steroid burst in April to try to accelerate her progress, it did really help.

 

This week I am visiting my Mom's with them. Julia has been wearing panties all week- sounds weird, I know- but when pandas hit she got MAJOR sensory issues, and hasn't been able to wear panties in over a year. Caroline is participating in a ballet camp. Ballet was her passion prior to pandas- but ocd took that away. They are happy, getting along, sleeping and eating! I am relaxed (except hoping I am not jinxing things).

 

Reflections: I do not hold any hope that they are "cured". My only hope is, that we can manage episodes, and that they will be as few and as far between as possible. I hate to say it, because it is next to impossible to get- but I really think pex is a great route for our kids. Of course underlying infections, and immune deficiencies need to be adressed with antibiotics, and possibly IVIG- but pex is SO great for these kids because of the speed of relief. I also know that being in tune with my kids is so important. A temporary spike or blip for my kids seems to be an immediate jump in emotional lability, and some ocd that stays steady (which should be managed with advil, patience and love vs. an episode that worsens by almost 100% each successive day (which needs to be adressed asap with a thorough check up and a steroid burst).

 

My kids are still on daily zithromax- I am not sure when that will change. We do probiotics daily. Advil as needed.

 

I try hard not to overbook or overstress them. Health is our priority over everything else. That includes healthy food, plenty of sleep, and free time. School and hobbies (extracurricular) are equal to each other, and a far second behind health. I pull Julia out of school if I feel she is acting like she is being exposed. They are young, so we take advantage of not worrying too much about make up work. Their hobbies (horseback riding and piano) are therapeutic for them, and therefore are as important to me right now as school.

 

It is amazing, after such a long year, to have my kids back- happy- blossoming. Really puts life in perspective. Hope that it lasts......

 

What a wonderful story of perseverance by a dedicated Mom and two girls whom I am sure are the lights of your life! Thanks for sharing this is a great inspiration to us all!!!

[sf_mom]

CONGRATULATIONS..... I look forward to hearing of their continued recovery.

 

-Wendy