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Posted (edited)

My dd8 had a hemangomia on her forehead and back that I am hearing could be a sign of a coinfection. All my children were premature, they all had issues with jaundice and my son died from what I believe now were lyme related complications.

 

Other than that, my girls started showing signs of something wrong around age 1. Prior to age 1 they showed signs of food intolerances (specifically dairy).

 

Susan

 

PS... not sure if the premature/jaunice could have been lyme related but I'm wondering now....

Edited by Suzan
Posted

My children were also all premature but one was a twin pregnancy so it was expected.

 

My older DS and younger DS both have larger than normal head size typical of LD. Older DS had balance issues starting at around 1 year of age. I don't think it was really 'floppy baby' syndrome typically associated with Lyme but similar that he was always falling over and bruised easily. Younger son had Kawasaki's at 5 1/2 months and considered the youngest child to ever be diagnosed with it at our hospital in San Francisco..... plagued by heart issues ever since. We believe the Lyme was potentially the core issue behind Kawasaki's Diagnoses. He also had refux issues. DD has small birth defect, underweight, repeatedly sick was not developing age appropriate language.

 

My younger twins were first put on antibiotics at 2 1/2 years of age and they were also taken off vaccination schedule at one due to Kawasaki's. I believe those two issues potentially saved them from Lyme induced Autism. My son at 2 had rages and early symptoms of OCD but lacked sudden on-set to classify as PANDAS.

 

-Wendy

Posted

My dd8 had a hemangomia on her forehead and back that I am hearing could be a sign of a coinfection. All my children were premature, they all had issues with jaundice and my son died from what I believe now were lyme related complications.

 

Other than that, my girls started showing signs of something wrong around age 1. Prior to age 1 they showed signs of food intolerances (specifically dairy).

 

Susan

 

PS... not sure if the premature/jaunice could have been lyme related but I'm wondering now....

 

 

Susan,

 

Do you know of any references for the relationship between co-infections and hemangomias? My son has a rather large one that is still present at age 6 and we are still questioning the presence of co-infections? Any co-infections in particular associated with hemangomias? Thanks for any info!

Posted

I suspect my DS7 was born with lyme. He was full term, but more than 2 pounds lighter at birth than my other 2 children. His apgars were 7/8/8 and he needed oxygen (my other 2 were 9s and 10s). He was an extremely fussy baby that I can only describe as angry. I know it sounds weird to call a baby angry, but he really was - all the time. Looking back, he had major sensory issues right from birth - fussed unless he was in the swing on high, or being swung in our arms (and I don't mean gently rocked), hated swaddling, started removing all of his clothing at 6 months old, etc. Despite all of this he hit all milestones VERY early.

 

I don't know what the signs of lyme are in infancy. This is just our experience. We are waiting for a lyme diagnosis - appointment in april. My WB is positive.

Posted
Susan,

 

Do you know of any references for the relationship between co-infections and hemangomias? My son has a rather large one that is still present at age 6 and we are still questioning the presence of co-infections? Any co-infections in particular associated with hemangomias? Thanks for any info!

 

Our LLMD told me about the relationship between Bartonella and vascular lesions. I have not seen anything in writing about it though. Tried to do some searching about it tonight and I see some articles but I can't get any open for some reason. We don't have huge indicators of co-infections but my headaches and also my VEGF results, along with dd's hemangiomas was leading her to watch us for Bartonella.

 

Susan

Posted

Susan, I am always saddened when I think of your son's story. It really hits home.... twins and our little guys heart complication, etc.

 

-Wendy

 

1.gif

 

I know, it's is a strange comparison of our story and yours and all mixed up with lyme.

 

You know, the presentation from Ann Corson (is that her name?), about pediatric lyme, maybe that would be helpful for Wilma. That is the article that made me start to see the lyme connection with my son and the girls early life. Do you know where to find that?

 

Susan

Posted
Susan,

 

Do you know of any references for the relationship between co-infections and hemangomias? My son has a rather large one that is still present at age 6 and we are still questioning the presence of co-infections? Any co-infections in particular associated with hemangomias? Thanks for any info!

 

Our LLMD told me about the relationship between Bartonella and vascular lesions. I have not seen anything in writing about it though. Tried to do some searching about it tonight and I see some articles but I can't get any open for some reason. We don't have huge indicators of co-infections but my headaches and also my VEGF results, along with dd's hemangiomas was leading her to watch us for Bartonella.

 

Susan

I have seen something in writing, but can't remember where. I checked Dr. J's website and one other...but can't find it. If I come across something I will post. I remember, because dd has a large birthmark on her leg, and though not the same, it sparked an interest.

Posted (edited)

Susan, I am always saddened when I think of your son's story. It really hits home.... twins and our little guys heart complication, etc.

 

-Wendy

 

1.gif

 

I know, it's is a strange comparison of our story and yours and all mixed up with lyme.

 

You know, the presentation from Ann Corson (is that her name?), about pediatric lyme, maybe that would be helpful for Wilma. That is the article that made me start to see the lyme connection with my son and the girls early life. Do you know where to find that?

 

Susan

Oh Susan, so sorry for the loss of your son!

Dr. Corson's presentation is listed on Dr. Jones website.

Hopefully, someone will post it. It's a very good read.

 

www.drjoneskids.org

Ann Corson- "What everyone needs to know about Pediatric Lyme Disease"

Edited by philamom
Posted
Susan,

 

Do you know of any references for the relationship between co-infections and hemangomias? My son has a rather large one that is still present at age 6 and we are still questioning the presence of co-infections? Any co-infections in particular associated with hemangomias? Thanks for any info!

 

Our LLMD told me about the relationship between Bartonella and vascular lesions. I have not seen anything in writing about it though. Tried to do some searching about it tonight and I see some articles but I can't get any open for some reason. We don't have huge indicators of co-infections but my headaches and also my VEGF results, along with dd's hemangiomas was leading her to watch us for Bartonella.

 

Susan

I have seen something in writing, but can't remember where. I checked Dr. J's website and one other...but can't find it. If I come across something I will post. I remember, because dd has a large birthmark on her leg, and though not the same, it sparked an interest.

 

 

Thanks Susan and Philamom, I'll keep looking too and will keep his hemangioma on the list of potential clues for co-infections.

Posted (edited)
Thanks Susan and Philamom, I'll keep looking too and will keep his hemangioma on the list of potential clues for co-infections.

 

This link is to an article with Dr. Corson's evaluation and management of tick born illnesses.... It specifically mentions hemangioma birthmarks and is a really great article.

 

http://www.publichealthalert.org/pdf/2009_10.pdf

Edited by Suzan
Posted

I heard that a 'stork bite' was an indication of coinfection. My youngest three all have this. I believe Ann Corson said it when I watched her on the live stream at the conference.

Posted

I have a 75 page pdf file from October 15, 2010. It's called "What doctors need to know about pediatric lyme" by Dr. Ann Corson. I found it VERY helpful in determining whether to pursue lyme or not. I don't think I can attach it here, but if anyone wants it just PM me your email address and I will send it to you as an email attachment.

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