Update on my dd - pandas and now lyme

[Guest guest]

I haven’t posted on this forum in a while but I wanted to update everyone on

my dd, who is now 14.

When she was 9 years old she began having anxiety and little ocd issues. It was

also that year that she had a flu like illness that caused her to have chest

pain, difficulty breathing while laying down, heart racing issues. (I never

connected the two) She also began having frequent urination that year and

eventually had bathroom ocd issues severe enough that I sought out help. We

started with erp and ended up doing zoloft when the erp didn’t help enough.

She was diagnosed with ocd. Intrusive thoughts were the worse part of her ocd

at that time.

Over the course of the next couple years she’d be stable enough for a while,

then worsen. The fall of the year she turned 13, things went to hell. She

became completely incapacitated by OCD. She was homebound, unable to shower,

dress, brush her teeth, walk, do literally anything at all. SHe was plagued by

intrusive thoughts 24/7. She could not sleep. It was at that point that I

pursed the possibility of pandas despite not having an (in my opinion) overnight

presentation.

She was diagnosed as PANDAS by a pediatric neurologist and later an

immunologist. Treatment began with antibiotics then progressed to IVIG when she

did not continue to improve. IVIG helped enormously, but did not get her to

100% and even with 4 high dose ivig, each time she got ill, her symptoms

worsened. Eventually, after reading of other kids who improved with Lyme

treatment, we sought out a lyme specialist and she was diagnosed with Lyme and

bartonlella, despite having had multiple negative western blots. (had symptoms

for many years before first test) She is now improving again and I am thinking

that this may be the last piece of the puzzle.

We are still waiting for more test results but I think we are on the right

track. One week after starting lyme treatment, she broke out with a lyme rash

that the dr. said is from die off. It didn’t last long. She has made

significant gains in the last three weeks since starting lyme treatment.

This is really the super condensed version of a few years of living hell but I

finally feel like we have hopefully figured out the cause of her severe OCD.

She is SO much better and I hope and pray that things continue in a positive

direction.

Please, if you have not considered PANDAS or Lyme as a cause for your child’s

ocd, do so now. The presentation does not have to be overnight. There doesn’t

need to be joint pain. Labs can’t definitively rule out lyme. It’s a

clinical diagnosis based on symptoms and exposure.

Our lyme dr. believes that the lyme came first and derailed her immune system

and the autoimmune issues followed as a result of the untreated lyme.

Please, be diligent in ruling out these diseases as a cause for your child’s

OCD. If my story saves one family the hell we’ve been through, I’ll feel

like is wasn’t all for no reason.

[Guest guest]

This is a great example of a warrior mom getting to the bottom of her daughter's

OCD and treating it accordingly!  Glad to hear this !!  You did good by

your daughter and she will be forever grateful that you didn't give up!

Misty

________________________________

To:

Sent: Sat, February 19, 2011 8:54:10 AM

Subject: Update on my dd - pandas and now lyme

 

I haven’t posted on this forum in a while but I wanted to update everyone on

my

dd, who is now 14.

When she was 9 years old she began having anxiety and little ocd issues. It was

also that year that she had a flu like illness that caused her to have chest

pain, difficulty breathing while laying down, heart racing issues. (I never

connected the two) She also began having frequent urination that year and

eventually had bathroom ocd issues severe enough that I sought out help. We

started with erp and ended up doing zoloft when the erp didn’t help enough.

She

was diagnosed with ocd. Intrusive thoughts were the worse part of her ocd at

that time.

Over the course of the next couple years she’d be stable enough for a while,

then worsen. The fall of the year she turned 13, things went to hell. She became

completely incapacitated by OCD. She was homebound, unable to shower, dress,

brush her teeth, walk, do literally anything at all. SHe was plagued by

intrusive thoughts 24/7. She could not sleep. It was at that point that I pursed

the possibility of pandas despite not having an (in my opinion) overnight

presentation.

She was diagnosed as PANDAS by a pediatric neurologist and later an

immunologist. Treatment began with antibiotics then progressed to IVIG when she

did not continue to improve. IVIG helped enormously, but did not get her to 100%

and even with 4 high dose ivig, each time she got ill, her symptoms worsened.

Eventually, after reading of other kids who improved with Lyme treatment, we

sought out a lyme specialist and she was diagnosed with Lyme and bartonlella,

despite having had multiple negative western blots. (had symptoms for many years

before first test) She is now improving again and I am thinking that this may be

the last piece of the puzzle.

We are still waiting for more test results but I think we are on the right

track. One week after starting lyme treatment, she broke out with a lyme rash

that the dr. said is from die off. It didn’t last long. She has made

significant

gains in the last three weeks since starting lyme treatment.

This is really the super condensed version of a few years of living hell but I

finally feel like we have hopefully figured out the cause of her severe OCD. She

is SO much better and I hope and pray that things continue in a positive

direction.

Please, if you have not considered PANDAS or Lyme as a cause for your child’s

ocd, do so now. The presentation does not have to be overnight. There doesn’t

need to be joint pain. Labs can’t definitively rule out lyme. It’s a

clinical

diagnosis based on symptoms and exposure.

Our lyme dr. believes that the lyme came first and derailed her immune system

and the autoimmune issues followed as a result of the untreated lyme.

Please, be diligent in ruling out these diseases as a cause for your child’s

OCD. If my story saves one family the hell we’ve been through, I’ll feel

like is

wasn’t all for no reason.