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Posted

I posted here a few weeks ago (months?) and was the grateful recipient of many offers of support & encouragement. I was going to post my son's info & ask for advice, but we took another downward spiral & it has been all I can do to cope these last few weeks. I'm finally back in hopes that you all can help me decide what to do now!

 

To start, we live just west of Houston, TX, & my son - my firstborn - is now 18yo.

Our puzzle pieces:

Genetically speaking, my son has a pretty good likelihood of allergy/autoimmune issues.

My DH was an Rh baby (his mom's 3rd) & nearly died at birth. Then he had an allergic reaction to codeine that nearly killed him at 4 & they had to put him in an oxygen tent. Though he is above average intelligence, his memory tends to be a bit erratic, poorer than average, most likely as a result of those things. He also is prone to skin allergies (esp. to fragrances). He has had seasonal allergies as long as he can remember - as have I.

 

I had IBS as a teen (following immunizations to go overseas & then an illness I picked up in Belgium), and a bad flare up during a summer semester in college due to stress, then seemingly went away. I probaby had milk issues as a kid - I had those dark circles under my eyes even as a toddler. Developed small patches of eczema. Also took antibiotics for years as a teen for acne - tetracycline then minocin. Used retin-a for 2 years & then developed an allergy to it.

Diagnosed with hyperthyroid after my last baby (#5), but I had symptoms of thyroid issues developing before I ever got pregnant, & now suffering adrenal fatigue to boot (self diagnosed).

I had a mercury filling (#5) placed by the dentist approx. 2 mos prior to conceiving him.

 

When my ds was born, I had an emergency c-section (his head was too large to pass thru my pelvic cage) & developed a yeast infection afterward.

Son & I had yeast issues (thrush) during 2-3 mos breastfeeding that was misdiagnosed, not properly treated once ds developed white patches in mouth, but never really went away & still cropped up a few times while he was on formula as ringworm around his mouth & on his cheeks.

Had a reaction to milk-based formula & was switched to soy (yeah, I know) for his first year. Switched to cow's milk at 1yr with no apparent reaction.

Developed skin reaction to dryer sheets so I stopped using them. Showed signs of seasonal allergies in his first year.

We did all the basic routine immunizations of that time thru age 10 (hep b had just come out that year, the AAP wasn't pushing it yet & thanks be to God the dr agreed with me that it seemed totally unnecessary).

 

Son's development was slightly above average, but his coordination & spatial awareness seemed a little off. First concrete signs of something wrong began to show up around 3 or 4, but we were completely clueless. We would be saying bedtime prayers with him & he would stop saying them. So we would prompt him to say his prayers out loud & he would insist that he was. At that age he was an incredibly docile & obedient boy so it made no sense - we could not figure out where that was coming from. To this day we still have issues with him insisting that he answered or said something when we all know for a fact that he never spoke out loud. I can only assume that was the beginning of his attention deficit that was developing.

 

He would raise himself up on his toes & flap his hands when he got excited - like while he was watching his dad play a video game. When we chided him not to do that, he switched to a kind of hand shaking thing which at least looked less strange so we mostly let it go.

 

He was sensitive to loud noises - he fell apart when we visited Mall of America & they started their indoor fireworks display & he got a driving toy for his 4th birthday that had a gear shift & he could not stand it in high gear & would get upset till it was turned down.

 

He developed this thing where he would spit every time he heard a kissing sound which of course made me balistic (yes, on the carpet) and he began wiping his mouth on his shirt instead. He was going around with what we called "spit halos" on his shirts all the time.

 

He began to develop red, irritated skin on the backs of his hands & wrists. We weren't sure if he was washing his hands compulsively or if he just wasn't rinsing the soap off well or what. Seemed more like the latter than the former.

He also started to do this thing every time he sat down where he would say a prayer. I asked him what that was about & he told me that there was a sort of cloud of demons or something similar to that so he needed to pray to keep them away. But now when I ask him about it, he tells me that he made it up so that he would have an explanation for what he was doing & that sounded like a good reason at the time. :blink:

 

Around age 5 or 6, he started having trouble with eye contact - freaked me out, it had never been a problem before. Knew nothing then about autism. Later, around age 10 or 11 I think it was, I learned about Asperger's & started to think he had it.

 

Things have just incrementally escalated over time. He developed a thing about his sister touching him & the sound of her voice. He began having to go thru stuff to get thru the kitchen doorway & then he started making a humming noise & putting his fingers in his ears - he says to block out noise so that his habits don't get messed up. Now he does that & actually goes thru a string of words or counting over & over again till it passes. In fact, just a few months ago, he started bellowing during his humming if anyone made a noise or even sighed during his habits - that one has put the worst stress on our family because his episodes seem to go on forever anymore & my younger kids can't keep quiet that long.

 

Now we are at the point that he has to go thru a series of habits virtually everywhere he passes thru the house. Maybe I am misunderstanding the terms, but they have always waxed, and never really waned. We are always either getting worse or maintaining the most recently established status quo prior to getting worse. The tics are compulsive in nature - always triggered by a sound or passing thru a certain place - is that typical of Tourette's?

 

He has developed increasing difficulty with falling asleep & staying asleep. We had him on melatonin with good results but it seems to no longer be helping. He still wets the bed at 18 & the DDAVP/desmopressin tablets don't seem to help much. We homeschool & he used to be able to not tic when we went out in public, but now it is starting to come out more & more. His memory is messed up. His attention span is messed up. He is majorly behind on schoolwork (doing 9th grade English).

 

And our family is struggling to function around him with any semblance of normalcy - meanwhile he is resentful whenever we don't accomodate his problems, but there is only so much I can do when it takes him 20 minutes just to cross from one side of the house to the other & then we have to wait thru a long series of tics once he finally gets there. His siblings are getting the short end of things. And DH is talking about if we don't find something we can all live with, we'll have to put our son away because we can't live like this.

 

So at this point, I am desperately & frantically trying to figure out the best course. We've worked with some DAN docs & had some tests done. Our son has dysbiosis, maldigestion, low cholesterol, low B-6 & B-12, skewed amino acids inc. low gaba & taurine. We've tried supplementing with nothing really "wow". I've been trying to eliminate food intolerances (wheat, dairy, citrus, eggs) but keep falling off the diet after a month or so - wondering if that might actually be making things worse. Last round of tests showed that he had developed an additional intolerance to candida. :)

 

We did a challenge test for heavy metals & his lead & mercury were within the green, though the lead was at the border of yellow. I have a sensitivity to wearing any metal except gold & wondered if he might have a metal sensitivity creating inflammation in his brain (ie. it wouldn't be the amount that was the issue, but simply its presence in the brain tissue).

 

Anyway, to top all this off, my DH has had his hours cut for the 2nd time this year & we have even less money for doing anything now. I have been considering trying a modified ketogenic diet, but I'm not sure I can do it with all of our dietary restrictions & the increased grocery bill for all the additional meat I would end up buying as it would pretty much be meat & veggies plus MCT oil all day long.

 

Sheesh, if anyone has actually made it thru this ridiculously long & not all that coherent post, I would be very grateful for any & all opinions & advice!

Posted

Some other factors that I forgot to mention:

My son's paternal grandfather died of Alzheimers

Has a genetic tendency to Type 2 diabetes on both sides of family

Son tended to be hypoimmune/under-responsive when he got sick

Did spend some time in daycare his first 4 or 5 yrs with occasional resp. tract infections & a few ear infections.

Believe he tested positive & was treated for strep around age 6

Posted

Your story sounds much like my now 17 yo. Your son has some sensory integrative issues (chewing on his shirt, hypersensitive to sound, etc.) Flapping his hands is frequently seen with Autism (but if he actually has autism, and I'm not a dr...I can't diagnose, because there are so many things that look like it), it sounds very mild, and the reality is that he is functioning at a very high level.

 

A child with PANDAS/PITAND can have all the symptoms you are describing. My 17 yo was only diagnosed, because my 14 yo has classic symptoms, and I found Dr. K. who had written a paper describing adolescent/adult PANDAS (my 17 yo fit the description.) Dr. K. examined him, and determined that he did have it, plus, antibioitics worked like a charm (serious flare-up symptoms went away overnight with abx...3 separate times.) Then we had him tested with Dr. C, and it was positive (we just repeated it, because symptoms that look like Bipolar are present, and it was positive.)

 

So, in answer to your question, yes it can be PANDAS/PITAND, but I would certainly see if you can find a really good Occupational Therapist who specializes in Sensory Integrative Disorder to evaluate him, and give him a "sensory diet" (sensory activities to help him at home). Even if you treat the PANDAS/PITAND, some of the sensory issues will not necessarily go away, and helping him function is important. But, I would also definitely see if it is PANDAS/PITAND, particularly if you are seeing flare-ups with illness.

Posted

A good place to start, would be getting the research test for PANDAS by Dr Cunningham. I think the test costs about $400 (not covered by insurance), but with your son's age, and length of symptoms- I think it would be important. I would also get his strep titers done (although a normal result is meaningless, high titers could give you a clue to a recent or ongoing strep infection). You will need to get a pandas doc on your team- I don't know if there are any in Texas- that is where it gets rough financially. Treatment should start with at least 60 days of full strength antibiotics (either zithromax, or augmentin xr). Depending on the doctors clinical opinion, the reaction to antibiotics, and/or the Cunningham test results, a month long tapering steroid burst may be indicated and could provide real help.

 

Good luck- lean on the parents on this forum, there are several with older kids.

Posted

My heart goes out to you. It exhausted me just to read your post and you're living it. I know it's easier said than done but stay strong. You are on the right path. PANDAS or not (my guess would be PANDAS with aspergers/autism) you have a family here on this forum that will help you along the way.

 

I would suggest possibly contacting Scott Smith PA. He works with Dr. Bradstreet and they specialize (and are highly respected) in PANDAS and Autism. They also have a non-profit group affiliated and DO NOT turn anyone away because of inability to pay for care.

 

 

Jeff Bradstreet & Scott Smith, PA

 

Speializing in Autism/PANDAS

 

Melbourne FL/Irvine, CA

 

www.icdrc.org

 

Lynn

www.pandasresourcenetwork.org

Educate, Communicate, Cure

 

 

 

I posted here a few weeks ago (months?) and was the grateful recipient of many offers of support & encouragement. I was going to post my son's info & ask for advice, but we took another downward spiral & it has been all I can do to cope these last few weeks. I'm finally back in hopes that you all can help me decide what to do now!

 

To start, we live just west of Houston, TX, & my son - my firstborn - is now 18yo.

Our puzzle pieces:

Genetically speaking, my son has a pretty good likelihood of allergy/autoimmune issues.

My DH was an Rh baby (his mom's 3rd) & nearly died at birth. Then he had an allergic reaction to codeine that nearly killed him at 4 & they had to put him in an oxygen tent. Though he is above average intelligence, his memory tends to be a bit erratic, poorer than average, most likely as a result of those things. He also is prone to skin allergies (esp. to fragrances). He has had seasonal allergies as long as he can remember - as have I.

 

I had IBS as a teen (following immunizations to go overseas & then an illness I picked up in Belgium), and a bad flare up during a summer semester in college due to stress, then seemingly went away. I probaby had milk issues as a kid - I had those dark circles under my eyes even as a toddler. Developed small patches of eczema. Also took antibiotics for years as a teen for acne - tetracycline then minocin. Used retin-a for 2 years & then developed an allergy to it.

Diagnosed with hyperthyroid after my last baby (#5), but I had symptoms of thyroid issues developing before I ever got pregnant, & now suffering adrenal fatigue to boot (self diagnosed).

I had a mercury filling (#5) placed by the dentist approx. 2 mos prior to conceiving him.

 

When my ds was born, I had an emergency c-section (his head was too large to pass thru my pelvic cage) & developed a yeast infection afterward.

Son & I had yeast issues (thrush) during 2-3 mos breastfeeding that was misdiagnosed, not properly treated once ds developed white patches in mouth, but never really went away & still cropped up a few times while he was on formula as ringworm around his mouth & on his cheeks.

Had a reaction to milk-based formula & was switched to soy (yeah, I know) for his first year. Switched to cow's milk at 1yr with no apparent reaction.

Developed skin reaction to dryer sheets so I stopped using them. Showed signs of seasonal allergies in his first year.

We did all the basic routine immunizations of that time thru age 10 (hep b had just come out that year, the AAP wasn't pushing it yet & thanks be to God the dr agreed with me that it seemed totally unnecessary).

 

Son's development was slightly above average, but his coordination & spatial awareness seemed a little off. First concrete signs of something wrong began to show up around 3 or 4, but we were completely clueless. We would be saying bedtime prayers with him & he would stop saying them. So we would prompt him to say his prayers out loud & he would insist that he was. At that age he was an incredibly docile & obedient boy so it made no sense - we could not figure out where that was coming from. To this day we still have issues with him insisting that he answered or said something when we all know for a fact that he never spoke out loud. I can only assume that was the beginning of his attention deficit that was developing.

 

He would raise himself up on his toes & flap his hands when he got excited - like while he was watching his dad play a video game. When we chided him not to do that, he switched to a kind of hand shaking thing which at least looked less strange so we mostly let it go.

 

He was sensitive to loud noises - he fell apart when we visited Mall of America & they started their indoor fireworks display & he got a driving toy for his 4th birthday that had a gear shift & he could not stand it in high gear & would get upset till it was turned down.

 

He developed this thing where he would spit every time he heard a kissing sound which of course made me balistic (yes, on the carpet) and he began wiping his mouth on his shirt instead. He was going around with what we called "spit halos" on his shirts all the time.

 

He began to develop red, irritated skin on the backs of his hands & wrists. We weren't sure if he was washing his hands compulsively or if he just wasn't rinsing the soap off well or what. Seemed more like the latter than the former.

He also started to do this thing every time he sat down where he would say a prayer. I asked him what that was about & he told me that there was a sort of cloud of demons or something similar to that so he needed to pray to keep them away. But now when I ask him about it, he tells me that he made it up so that he would have an explanation for what he was doing & that sounded like a good reason at the time. :blink:

 

Around age 5 or 6, he started having trouble with eye contact - freaked me out, it had never been a problem before. Knew nothing then about autism. Later, around age 10 or 11 I think it was, I learned about Asperger's & started to think he had it.

 

Things have just incrementally escalated over time. He developed a thing about his sister touching him & the sound of her voice. He began having to go thru stuff to get thru the kitchen doorway & then he started making a humming noise & putting his fingers in his ears - he says to block out noise so that his habits don't get messed up. Now he does that & actually goes thru a string of words or counting over & over again till it passes. In fact, just a few months ago, he started bellowing during his humming if anyone made a noise or even sighed during his habits - that one has put the worst stress on our family because his episodes seem to go on forever anymore & my younger kids can't keep quiet that long.

 

Now we are at the point that he has to go thru a series of habits virtually everywhere he passes thru the house. Maybe I am misunderstanding the terms, but they have always waxed, and never really waned. We are always either getting worse or maintaining the most recently established status quo prior to getting worse. The tics are compulsive in nature - always triggered by a sound or passing thru a certain place - is that typical of Tourette's?

 

He has developed increasing difficulty with falling asleep & staying asleep. We had him on melatonin with good results but it seems to no longer be helping. He still wets the bed at 18 & the DDAVP/desmopressin tablets don't seem to help much. We homeschool & he used to be able to not tic when we went out in public, but now it is starting to come out more & more. His memory is messed up. His attention span is messed up. He is majorly behind on schoolwork (doing 9th grade English).

 

And our family is struggling to function around him with any semblance of normalcy - meanwhile he is resentful whenever we don't accomodate his problems, but there is only so much I can do when it takes him 20 minutes just to cross from one side of the house to the other & then we have to wait thru a long series of tics once he finally gets there. His siblings are getting the short end of things. And DH is talking about if we don't find something we can all live with, we'll have to put our son away because we can't live like this.

 

So at this point, I am desperately & frantically trying to figure out the best course. We've worked with some DAN docs & had some tests done. Our son has dysbiosis, maldigestion, low cholesterol, low B-6 & B-12, skewed amino acids inc. low gaba & taurine. We've tried supplementing with nothing really "wow". I've been trying to eliminate food intolerances (wheat, dairy, citrus, eggs) but keep falling off the diet after a month or so - wondering if that might actually be making things worse. Last round of tests showed that he had developed an additional intolerance to candida. :wacko:

 

We did a challenge test for heavy metals & his lead & mercury were within the green, though the lead was at the border of yellow. I have a sensitivity to wearing any metal except gold & wondered if he might have a metal sensitivity creating inflammation in his brain (ie. it wouldn't be the amount that was the issue, but simply its presence in the brain tissue).

 

Anyway, to top all this off, my DH has had his hours cut for the 2nd time this year & we have even less money for doing anything now. I have been considering trying a modified ketogenic diet, but I'm not sure I can do it with all of our dietary restrictions & the increased grocery bill for all the additional meat I would end up buying as it would pretty much be meat & veggies plus MCT oil all day long.

 

Sheesh, if anyone has actually made it thru this ridiculously long & not all that coherent post, I would be very grateful for any & all opinions & advice!

Posted

wetther it's pandas or pitands i dont think matters....it just means you know what the initial trigger was

you need to figure what is going on currently..strep or other.

the key would be to see if you can find something that youknow is a particular trigger at this point...he may have shed all the triigers and his sytem may just be in a hyper state...

i also noticed low cholesteral......our dan mentioned something about that....also something was noted about myco p eating closteral....

make sure you check myco p igg and igm

Posted (edited)

Hmmmmmm.... I'm currently reading 'Cure Unknown' about the Lyme epidemic. His symptoms 'sensory issues', inability to sleep and stay a sleep, etc. seem very similar to Lyme. Have you had him tested yet and for possible Lyme and co-infections via Igenex? If you haven't, I'd definitely start there.

 

My friends son definitely looked like he was looking off in space, had RF and also co-infections of bartonella and one other co-infection strain to Lyme.

 

-Wendy

Edited by SF Mom
Posted

Know you are in the right place..regardless of the "diagnosis". This forum will be your lifeline and your knowledge base as you work to learn more.

Posted

Well, I went ahead & made an appt. with Dr. Joshua Rotenberg here in Houston.

http://www.neurosleep.org/Services.html

 

He is not a PANDAS doc but is at least familiar with it & some members here have said that he will do treatment for diagnosed cases at least.

And at least he is a neurologist who has some experience with tourette's, ADHD, autism, epilepsy, cerebral palsy, etc & specializes in sleep disorders - which we certainly have now that the melatonin has stopped working so hopefully he will at least be able to help us with that. Hopefully.

 

But I figure if we do have to go with Rx treatment, at least this guy has familiarity with both the mainstream & the natural approaches which is better than a doc with mainstream blinders & an anti-biomed attitude.

 

Soonest appt I could get was for August 16th. Don't know if he would be willing to do a phone consult with one of the PANDAS specialists or what tests he would be willing to do. What would you recommend that I try to ask him for?

Posted
Hmmmmmm.... I'm currently reading 'Cure Unknown' about the Lyme epidemic. His symptoms 'sensory issues', inability to sleep and stay a sleep, etc. seem very similar to Lyme. Have you had him tested yet and for possible Lyme and co-infections via Igenex? If you haven't, I'd definitely start there.

 

My friends son definitely looked like he was looking off in space, had RF and also co-infections of bartonella and one other co-infection strain to Lyme.

 

-Wendy

Wendy, while not impossible, I have to think this to be an unlikely issue as we spend little time outdoors & even less in woodsy areas where he might have gotten bitten by a tick. We had two outdoor dogs at the time that he was born, but they passed away when he was just a few years old (& because they were big dogs, he was too small to really spend any time close to them).

 

Can fleas transmit something similar to Lyme? We did have cats up till 4 yrs ago when the last one passed away & occasionally we had problems with flea bites.

Posted
wetther it's pandas or pitands i dont think matters....it just means you know what the initial trigger was

you need to figure what is going on currently..strep or other.

the key would be to see if you can find something that youknow is a particular trigger at this point...he may have shed all the triigers and his sytem may just be in a hyper state...

i also noticed low cholesteral......our dan mentioned something about that....also something was noted about myco p eating closteral....

make sure you check myco p igg and igm

Fixit, I need to do some digging thru my son's labs - I remember his first immunology panel had really low, or maybe it was even zero, IgM & wondered at the time if that was normal. Is it?

 

When I was 10yrs old, my father (an Air Force lifer) was stationed in Germany & we all went with him because my mom is originally from Belgium & wanted a chance to spend time with her dad before he passed away. While we were in Belgium - approx. a month after all those immunizations they make you get - I caught some kind of upper respiratory bug. I don't really remember much about the symptoms other than my mom assumed it was a cold, but I do remember that I was coughing a lot.

 

One afternoon I was sitting in my aunt's kitchen, & as I was coughing, suddenly - with no warning of any kind - threw up. Long story short, whatever I had apparently had weakened my sphincter so much that every time I coughed, it forced the sphincter open & my food came back up. It was awful. I became afraid to cough & got in the habit of just clearing my throat over & over again until it subsided. It was over a year of suppressing my coughs before I healed to the point that I could cough without losing my stomach contents. Now I am looking at the stuff on myco p & wondering if I might have had that.

 

Is it possible for my body to harbor that bug & pass it on to my son? Seems unlikely. Is it possible that however it affected my immune system was in some way passed on to my son?

 

The only known history of tics in my family is on my mother's side - she had tics for less than a year when she was approx. 10yo & then they went away - which has a PANDAS sound to it, doesn't it? (I do also have a longtime habit of running my fingers thru my hair that I am now believing is a mild tic as it has always felt a bit compulsive & I feel a little uncomfortable/slightly agitated when I try not to do it)

Posted

tpotter,

The hand flapping thing & Aperger's sx's are long gone - or long buried under the TS who can say? I do also have a 13 yo with high-functioning autism sx's - but I had one of my mercury fillings replaced while I was 5mos pregnant with him & in his case I am about as sure as one can be that his problems were caused by mercury damage.

 

A good place to start, would be getting the research test for PANDAS by Dr Cunningham. I think the test costs about $400 (not covered by insurance), but with your son's age, and length of symptoms- I think it would be important. I would also get his strep titers done (although a normal result is meaningless, high titers could give you a clue to a recent or ongoing strep infection). You will need to get a pandas doc on your team- I don't know if there are any in Texas- that is where it gets rough financially. Treatment should start with at least 60 days of full strength antibiotics (either zithromax, or augmentin xr). Depending on the doctors clinical opinion, the reaction to antibiotics, and/or the Cunningham test results, a month long tapering steroid burst may be indicated and could provide real help.

 

Good luck- lean on the parents on this forum, there are several with older kids.

dcmom,

How would I go about getting the research test for PANDAS by Dr. Cunningham?

Posted

I would have never guessed in a million years my friends son would have been positive for co-infections either (he has grown up in the city). AND, his PANDAS presentation was classic after Rheumatic Fever and inability to eradicate strep but he turned up positive for two co-infections to Lyme. She has no idea where he would have gotten bitten and will rule the possibility that she gave it to him while pregnant by testing herself. She grew up in WI.

 

Testing for Lyme is something that I STRONGLY recommend you do prior to moving forward with more aggressive treatments for PANDAS. Although IVIG can give some reprieve for a child with Lyme it typically is not a long term resolution to the infection.

 

Anyway, you can order a test kit directly from Igenex and have your Dr. fill out the requisition part. You would know concretely in three weeks. If not within the first 30 pages of the book, CURE UNKNOWN I think the symptoms listed would resonate with your child's symptoms.

 

-Wendy

 

 

 

 

 

Hmmmmmm.... I'm currently reading 'Cure Unknown' about the Lyme epidemic. His symptoms 'sensory issues', inability to sleep and stay a sleep, etc. seem very similar to Lyme. Have you had him tested yet and for possible Lyme and co-infections via Igenex? If you haven't, I'd definitely start there.

 

My friends son definitely looked like he was looking off in space, had RF and also co-infections of bartonella and one other co-infection strain to Lyme.

 

-Wendy

Wendy, while not impossible, I have to think this to be an unlikely issue as we spend little time outdoors & even less in woodsy areas where he might have gotten bitten by a tick. We had two outdoor dogs at the time that he was born, but they passed away when he was just a few years old (& because they were big dogs, he was too small to really spend any time close to them).

 

Can fleas transmit something similar to Lyme? We did have cats up till 4 yrs ago when the last one passed away & occasionally we had problems with flea bites.

Posted

My son and I recently got Bartonella from fleas. Bartonella mimics PANDAS and it is considered the "cat scratch" disease.

 

I agree with Wendy and I now believe everyone should do the IGENEX lyme test along with the co-infections, which include Bartonella. I would also include the IGG and IGM Mycoplasma tests and I would consider an elevated IGG and negative IGM to still be a possible current Mycoplasma infection.

 

Elizabeth

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