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Daughter's (9) Story: lurking here for awhile


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Philamom - thanks! Your profile says "newbie" but clearly you are not! As it happens, I was talking to Dr. B as you posted and he was talking to me about doing IGENEX lyme testing with my son. Then I read your post and noticed the similarities with my son.... when I got to your lyme results I was blown away.

 

Please keep us posted on your progress. I think we are all learning so much about PANDAS and the importance of thorough diagnostics. I wish you all the best. Your daughter is SO fortunate to have you leading they way - and we are fortunate that you are sharing with us!

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Hi Melinda:

 

My heart goes out to you. Your family has been through so much!

 

We have been on a very similar journey and we are treating both of our children for lyme disease after treating one of them for PANDAS for one year. The IVIG's were helpful, but did not bring our son fully back to us either. The lyme treatment is long, and bumpy, but has been very successful.

 

Thank you so much for sharing your story with us and please keep us updated!

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Hi All- I'm still learning how to work this site, so hopefully this works.

 

Beginning at age two, my Dd(9) had numerous sinus infections (every 6-8 wks) and during these illnesses she would be very emotional, oppositional and defiant. It was the opposite demeanor of her sweet, caring self. We would wait 7-10 days, treat with abx, and symptoms would resolve. We were constantly living with opposite personalities.

 

2006: Cat Scan of sinuses reveals probable chronic sinusitis.She starts having Urinary issues and is then diagnosed with C-difficile and put on Metronzindale.

 

2007: In March along with a sinus infection, she begins with symptoms (joint pain, musical heartbeat, sensory issues, Major food aversions, nightmares and hallucinations, seperation anxiety, Severe school refusal, OCD (severe hoarding apologizing, exc), behavorial issues, and tics: licking all objects (including bottom of shoes, walls, everything),throat clearing, eye blinking, entire arm movements in a pattern, and constant knee bends when walking. I now realize some may have been compulsions and not tics.

I took her to a Neurologist at CHOP who sent us to Dr. Tamar Chansky, Child Psychologist. She diagnosed Dd with PANDAS. In June, daughter came down with C-diff again and was treated with Vancomycin. For the most part, all PANDAS symptoms resolved within 2-3 months. She also contracted Molluscum Contagisum which took 6 months to clear.

 

2008: In January- Impetigo and in March along with sinus infection, some of the symptoms return. She tested positive for strep and is placed on two round of Duricef. Again, 90% of symptoms resolved on abx. She had another Sinus Cat Scan which diagnosed Chronic Sinusitis. Then in August, she has a severe sinus infection (repeat CT shows PAN sinusitis) and is placed on 3 wks of Augmentin and 7 days of prednisone. Behavorial symptoms emerged but quickly diminished with medicine.

 

2009: March- Onset of Notable episode #4. Dr. K prescribes the steroid burst and her behaviors worsen. Dr. K notes the abx are no longer working and probably the same for the steroid. I did see 1-2 days when finished that she was better so we he went forward with IVIG in June. It helped 50%. We did not get coverage!

October- didn't mount response to Pneummococal 14 Serotype and H. Influenzae. Dr B got coverage for IVIG from labs and chronic sinus infections.

December- she had problems swallowing and face was very pale.

 

2010:

January- Severe heartburn and a vomiting incident which led to a Severe fear of choking/vomiting. She wouldn't leave the house for 3 months. We had dates for IVIG but couldn't get her to Connecticut. We were looking at sedating her to get there but were worried about a reaction. In Febuary she was diagnosed with Giardia and March with C-diff again. She was put on two rounds of Flagyl which helped decrease her fears and anxiety. She received IVIG with Dr. B in April and again July.

 

July: After completing our 2nd Ivig with Dr. B we received results of Igenex Basic Lyme Panel = Positive (5 bands). The only reason I ran the test was to rule it out (Thank you Wendy). I was shocked it was positive.

 

We are now waiting to see a doctor who specializes in Lyme. By the way, each IVIG has helped some but has not returned my daughter to the way she was before this last episode began, March 09.

 

So sorry about this long post...I'm dizzy just typing it!

 

Melinda

Hi Melinda,

 

I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions?

 

Caring Mom

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Hi All- I'm still learning how to work this site, so hopefully this works.

 

Beginning at age two, my Dd(9) had numerous sinus infections (every 6-8 wks) and during these illnesses she would be very emotional, oppositional and defiant. It was the opposite demeanor of her sweet, caring self. We would wait 7-10 days, treat with abx, and symptoms would resolve. We were constantly living with opposite personalities.

 

2006: Cat Scan of sinuses reveals probable chronic sinusitis.She starts having Urinary issues and is then diagnosed with C-difficile and put on Metronzindale.

 

2007: In March along with a sinus infection, she begins with symptoms (joint pain, musical heartbeat, sensory issues, Major food aversions, nightmares and hallucinations, seperation anxiety, Severe school refusal, OCD (severe hoarding apologizing, exc), behavorial issues, and tics: licking all objects (including bottom of shoes, walls, everything),throat clearing, eye blinking, entire arm movements in a pattern, and constant knee bends when walking. I now realize some may have been compulsions and not tics.

I took her to a Neurologist at CHOP who sent us to Dr. Tamar Chansky, Child Psychologist. She diagnosed Dd with PANDAS. In June, daughter came down with C-diff again and was treated with Vancomycin. For the most part, all PANDAS symptoms resolved within 2-3 months. She also contracted Molluscum Contagisum which took 6 months to clear.

 

2008: In January- Impetigo and in March along with sinus infection, some of the symptoms return. She tested positive for strep and is placed on two round of Duricef. Again, 90% of symptoms resolved on abx. She had another Sinus Cat Scan which diagnosed Chronic Sinusitis. Then in August, she has a severe sinus infection (repeat CT shows PAN sinusitis) and is placed on 3 wks of Augmentin and 7 days of prednisone. Behavorial symptoms emerged but quickly diminished with medicine.

 

2009: March- Onset of Notable episode #4. Dr. K prescribes the steroid burst and her behaviors worsen. Dr. K notes the abx are no longer working and probably the same for the steroid. I did see 1-2 days when finished that she was better so we he went forward with IVIG in June. It helped 50%. We did not get coverage!

October- didn't mount response to Pneummococal 14 Serotype and H. Influenzae. Dr B got coverage for IVIG from labs and chronic sinus infections.

December- she had problems swallowing and face was very pale.

 

2010:

January- Severe heartburn and a vomiting incident which led to a Severe fear of choking/vomiting. She wouldn't leave the house for 3 months. We had dates for IVIG but couldn't get her to Connecticut. We were looking at sedating her to get there but were worried about a reaction. In Febuary she was diagnosed with Giardia and March with C-diff again. She was put on two rounds of Flagyl which helped decrease her fears and anxiety. She received IVIG with Dr. B in April and again July.

 

July: After completing our 2nd Ivig with Dr. B we received results of Igenex Basic Lyme Panel = Positive (5 bands). The only reason I ran the test was to rule it out (Thank you Wendy). I was shocked it was positive.

 

We are now waiting to see a doctor who specializes in Lyme. By the way, each IVIG has helped some but has not returned my daughter to the way she was before this last episode began, March 09.

 

So sorry about this long post...I'm dizzy just typing it!

 

Melinda

Hi Melinda,

 

I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions?

 

Caring Mom

 

 

edit

Edited by philamom
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Hi All- I'm still learning how to work this site, so hopefully this works.

 

Beginning at age two, my Dd(9) had numerous sinus infections (every 6-8 wks) and during these illnesses she would be very emotional, oppositional and defiant. It was the opposite demeanor of her sweet, caring self. We would wait 7-10 days, treat with abx, and symptoms would resolve. We were constantly living with opposite personalities.

 

2006: Cat Scan of sinuses reveals probable chronic sinusitis.She starts having Urinary issues and is then diagnosed with C-difficile and put on Metronzindale.

 

2007: In March along with a sinus infection, she begins with symptoms (joint pain, musical heartbeat, sensory issues, Major food aversions, nightmares and hallucinations, seperation anxiety, Severe school refusal, OCD (severe hoarding apologizing, exc), behavorial issues, and tics: licking all objects (including bottom of shoes, walls, everything),throat clearing, eye blinking, entire arm movements in a pattern, and constant knee bends when walking. I now realize some may have been compulsions and not tics.

I took her to a Neurologist at CHOP who sent us to Dr. Tamar Chansky, Child Psychologist. She diagnosed Dd with PANDAS. In June, daughter came down with C-diff again and was treated with Vancomycin. For the most part, all PANDAS symptoms resolved within 2-3 months. She also contracted Molluscum Contagisum which took 6 months to clear.

 

2008: In January- Impetigo and in March along with sinus infection, some of the symptoms return. She tested positive for strep and is placed on two round of Duricef. Again, 90% of symptoms resolved on abx. She had another Sinus Cat Scan which diagnosed Chronic Sinusitis. Then in August, she has a severe sinus infection (repeat CT shows PAN sinusitis) and is placed on 3 wks of Augmentin and 7 days of prednisone. Behavorial symptoms emerged but quickly diminished with medicine.

 

2009: March- Onset of Notable episode #4. Dr. K prescribes the steroid burst and her behaviors worsen. Dr. K notes the abx are no longer working and probably the same for the steroid. I did see 1-2 days when finished that she was better so we he went forward with IVIG in June. It helped 50%. We did not get coverage!

October- didn't mount response to Pneummococal 14 Serotype and H. Influenzae. Dr B got coverage for IVIG from labs and chronic sinus infections.

December- she had problems swallowing and face was very pale.

 

2010:

January- Severe heartburn and a vomiting incident which led to a Severe fear of choking/vomiting. She wouldn't leave the house for 3 months. We had dates for IVIG but couldn't get her to Connecticut. We were looking at sedating her to get there but were worried about a reaction. In Febuary she was diagnosed with Giardia and March with C-diff again. She was put on two rounds of Flagyl which helped decrease her fears and anxiety. She received IVIG with Dr. B in April and again July.

 

July: After completing our 2nd Ivig with Dr. B we received results of Igenex Basic Lyme Panel = Positive (5 bands). The only reason I ran the test was to rule it out (Thank you Wendy). I was shocked it was positive.

 

We are now waiting to see a doctor who specializes in Lyme. By the way, each IVIG has helped some but has not returned my daughter to the way she was before this last episode began, March 09.

 

So sorry about this long post...I'm dizzy just typing it!

 

Melinda

Hi Melinda,

 

I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions?

 

Caring Mom

 

 

Caring Mom-

I didn't realize you could test for markers...Quest Labs just writes "detected" on results. I was told in 2006/2007 that it was the probably the same infection, just not properly treated. I'm not so sure...my daughter was on constant abx due to sinus infections. Just recently, i think it was because she was on 12 weeks of prevacid which lowers the stomach acid, leaving you vulnerable to other GI infections. Could be wrong though. Was your daughter retested? I always give my daughter Florastor in the morning and now experimenting with different probiotics in the evening (culturelle, custom probiotics, VSL#3). I also give her good belly non-dairy individual drinks (found at whole fields). Good Luck and please keep me posted!

 

Hi Melinda,

 

My daughter did a urine test through Great Plains Lab. The urine test also tested for yeast/fungal metabolites (also came out very high despite us being on an very strict and extreme anti-yeast diet for 16 months now!!), bacterial metabolites (including clostridia markers) and some other indicators that I have no idea what they are:) My daughter had three separate sinus infections in an 8 month period. They were about 8-10 weeks apart from each other. Her tics went away after the first two infections but only temporarily. They stayed after the third sinus infection and are still here. She was originally diagnosed with Tourettes and most recently PANDAS. I have the people on this forum to thank for that. After reading the countless stories that people poste here I realized my daughter might have something else going on. Right now I have my daughter on Custom Probiotics (lactate free)twice a day and am going to be adding the s. boulardii tomorrow. She is on Fluconazole and Azith 2x/day. I heard about Culturelle supposedly targeting clostridium but with everything else that she is on I don't know if we can add that as well. I guess it couldn't hurt? Anyone want to chime in? Take care Melinda!

 

Caring Mom

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Hi All- I'm still learning how to work this site, so hopefully this works.

 

Beginning at age two, my Dd(9) had numerous sinus infections (every 6-8 wks) and during these illnesses she would be very emotional, oppositional and defiant. It was the opposite demeanor of her sweet, caring self. We would wait 7-10 days, treat with abx, and symptoms would resolve. We were constantly living with opposite personalities.

 

2006: Cat Scan of sinuses reveals probable chronic sinusitis.She starts having Urinary issues and is then diagnosed with C-difficile and put on Metronzindale.

 

2007: In March along with a sinus infection, she begins with symptoms (joint pain, musical heartbeat, sensory issues, Major food aversions, nightmares and hallucinations, seperation anxiety, Severe school refusal, OCD (severe hoarding apologizing, exc), behavorial issues, and tics: licking all objects (including bottom of shoes, walls, everything),throat clearing, eye blinking, entire arm movements in a pattern, and constant knee bends when walking. I now realize some may have been compulsions and not tics.

I took her to a Neurologist at CHOP who sent us to Dr. Tamar Chansky, Child Psychologist. She diagnosed Dd with PANDAS. In June, daughter came down with C-diff again and was treated with Vancomycin. For the most part, all PANDAS symptoms resolved within 2-3 months. She also contracted Molluscum Contagisum which took 6 months to clear.

 

2008: In January- Impetigo and in March along with sinus infection, some of the symptoms return. She tested positive for strep and is placed on two round of Duricef. Again, 90% of symptoms resolved on abx. She had another Sinus Cat Scan which diagnosed Chronic Sinusitis. Then in August, she has a severe sinus infection (repeat CT shows PAN sinusitis) and is placed on 3 wks of Augmentin and 7 days of prednisone. Behavorial symptoms emerged but quickly diminished with medicine.

 

2009: March- Onset of Notable episode #4. Dr. K prescribes the steroid burst and her behaviors worsen. Dr. K notes the abx are no longer working and probably the same for the steroid. I did see 1-2 days when finished that she was better so we he went forward with IVIG in June. It helped 50%. We did not get coverage!

October- didn't mount response to Pneummococal 14 Serotype and H. Influenzae. Dr B got coverage for IVIG from labs and chronic sinus infections.

December- she had problems swallowing and face was very pale.

 

2010:

January- Severe heartburn and a vomiting incident which led to a Severe fear of choking/vomiting. She wouldn't leave the house for 3 months. We had dates for IVIG but couldn't get her to Connecticut. We were looking at sedating her to get there but were worried about a reaction. In Febuary she was diagnosed with Giardia and March with C-diff again. She was put on two rounds of Flagyl which helped decrease her fears and anxiety. She received IVIG with Dr. B in April and again July.

 

July: After completing our 2nd Ivig with Dr. B we received results of Igenex Basic Lyme Panel = Positive (5 bands). The only reason I ran the test was to rule it out (Thank you Wendy). I was shocked it was positive.

 

We are now waiting to see a doctor who specializes in Lyme. By the way, each IVIG has helped some but has not returned my daughter to the way she was before this last episode began, March 09.

 

So sorry about this long post...I'm dizzy just typing it!

 

Melinda

Hi Melinda,

 

I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions?

 

Caring Mom

 

 

Caring Mom-

I didn't realize you could test for markers...Quest Labs just writes "detected" on results. I was told in 2006/2007 that it was the probably the same infection, just not properly treated. I'm not so sure...my daughter was on constant abx due to sinus infections. Just recently, i think it was because she was on 12 weeks of prevacid which lowers the stomach acid, leaving you vulnerable to other GI infections. Could be wrong though. Was your daughter retested? I always give my daughter Florastor in the morning and now experimenting with different probiotics in the evening (culturelle, custom probiotics, VSL#3). I also give her good belly non-dairy individual drinks (found at whole fields). Good Luck and please keep me posted!

 

Hi Melinda,

 

My daughter did a urine test through Great Plains Lab. The urine test also tested for yeast/fungal metabolites (also came out very high despite us being on an very strict and extreme anti-yeast diet for 16 months now!!), bacterial metabolites (including clostridia markers) and some other indicators that I have no idea what they are:) My daughter had three separate sinus infections in an 8 month period. They were about 8-10 weeks apart from each other. Her tics went away after the first two infections but only temporarily. They stayed after the third sinus infection and are still here. She was originally diagnosed with Tourettes and most recently PANDAS. I have the people on this forum to thank for that. After reading the countless stories that people poste here I realized my daughter might have something else going on. Right now I have my daughter on Custom Probiotics (lactate free)twice a day and am going to be adding the s. boulardii tomorrow. She is on Fluconazole and Azith 2x/day. I heard about Culturelle supposedly targeting clostridium but with everything else that she is on I don't know if we can add that as well. I guess it couldn't hurt? Anyone want to chime in? Take care Melinda!

 

Caring Mom

 

edit

Edited by philamom
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Interesting about the Floraster - where do you get it? Does it contain the strep strain as well? I'm definitely open to trying a new probiotic as long as it doesn't contain the strep strain. Do you give it once or twice a day? How many CFU's does your daughter get a day?

 

Here is my daughter's story in regards to her sinus infections. When she had her first infection she started making noises in the back of her throat. The doctor assured me it was due to drainage. She gave her antibiotics and the noises went away. About 8-10 weeks later she looked sick again, very tired and was making her noises again. I took her back to the doctor and she was diagnosed with another sinus infection. We got antibiotics and the noises went away. Another 8-10 weeks go by and its the same story all over again. She gets more antibiotics but this time the noise doesn't go away. Finally the doctor orders a sinus xray and informs me that my daughter's sinuses are clear and that the noise she is making is a vocal tic. I get sent to a neurologist and he diagnoses Tourettes (after her second infection she developed a slight neck tic so she had a motor and vocal tic). She has not had another sinus infection since - August will be 2 years. She is very healthy otherwise and hardly ever gets sick. If she does get sick it is usually a 12-24 hour virus. However, she continues to have tics every day. They wax and wane but are always there. Since starting the Flagyl though they have reduced dramatically. That's why I'm so scared things are going to go downhill again now that we've stopped. I'm going to look into the Floraster!

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Interesting about the Floraster - where do you get it? Does it contain the strep strain as well? I'm definitely open to trying a new probiotic as long as it doesn't contain the strep strain. Do you give it once or twice a day? How many CFU's does your daughter get a day?

 

Here is my daughter's story in regards to her sinus infections. When she had her first infection she started making noises in the back of her throat. The doctor assured me it was due to drainage. She gave her antibiotics and the noises went away. About 8-10 weeks later she looked sick again, very tired and was making her noises again. I took her back to the doctor and she was diagnosed with another sinus infection. We got antibiotics and the noises went away. Another 8-10 weeks go by and its the same story all over again. She gets more antibiotics but this time the noise doesn't go away. Finally the doctor orders a sinus xray and informs me that my daughter's sinuses are clear and that the noise she is making is a vocal tic. I get sent to a neurologist and he diagnoses Tourettes (after her second infection she developed a slight neck tic so she had a motor and vocal tic). She has not had another sinus infection since - August will be 2 years. She is very healthy otherwise and hardly ever gets sick. If she does get sick it is usually a 12-24 hour virus. However, she continues to have tics every day. They wax and wane but are always there. Since starting the Flagyl though they have reduced dramatically. That's why I'm so scared things are going to go downhill again now that we've stopped. I'm going to look into the Floraster!

 

edit

Edited by philamom
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My daughter's doctor said we could go on Vancomycin if things didn't improve with the Flagyl. He never mentioned another round of Flagyl but at the time we were talking my daughter had not shown any improvement and he was thinking of stronger options. He did tell me she could only be on the Flagyl for 2 weeks because it affected the liver. He told me to do the prescribed regime for 1 month and then call him with the results. I have 2 weeks left to go before the phone consultation (unfortunately, I have to pay $175 for every 1/2 hour I talk to him so I can't call whenever I would like). I figured I could bring it up with him in 2 weeks, but being the control freak that I am, it's hard to sit and wait another 2 weeks thinking the bacteria might be growing again because she's off the meds. I will go out tomorrow and buy the Floraster. Thank you for your help - at least I feel like I am doing something!

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My daughter's doctor said we could go on Vancomycin if things didn't improve with the Flagyl. He never mentioned another round of Flagyl but at the time we were talking my daughter had not shown any improvement and he was thinking of stronger options. He did tell me she could only be on the Flagyl for 2 weeks because it affected the liver. He told me to do the prescribed regime for 1 month and then call him with the results. I have 2 weeks left to go before the phone consultation (unfortunately, I have to pay $175 for every 1/2 hour I talk to him so I can't call whenever I would like). I figured I could bring it up with him in 2 weeks, but being the control freak that I am, it's hard to sit and wait another 2 weeks thinking the bacteria might be growing again because she's off the meds. I will go out tomorrow and buy the Floraster. Thank you for your help - at least I feel like I am doing something!

 

edit

Edited by philamom
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Melinda, thanks for sharing your story. Welcome!

 

 

I found several studies that said that S. boulardii was needed specifically for the Clostidium. What I don't know is how high you can push it. The Florastor Kids package says to take one pack in the morning and one pack in the evening. Does anyone know if that is the maximum a child can take?

Edited by Trg girl
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