ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I am wondering if we can start an ongoing thread for mothers with children with congenital Lyme? It seems this week there are at least 4 new members dealing with the worries of Lyme in their children and the many unknowns.
This heartbreaking situation brings with it many questions. We can support each other with one location.
So, I am past the point of tons of questions about how to get tested and how to treat and who treats children. I am willing to help others out.
My story is that my youngest started getting sick mysteriously at age 5. Every other year was something big added on to his list of symptoms. At age 14, after a virus, he became bedbound. It was mothers online that insisted I get him tested properly.
I thought I had lupus so was surprised when our ILADS doctor said I must get tested along with my oldest, seemingly healthy son.
We all 3 were positive with Lyme, babesia and bart along with viruses and damage to adrenals, hormones, etc...
It is now 2.5 years later and I have learned a lot. Those early years were very scary and sad. I always had a place here to post and ask questions.
Please share your story and ask questions here. I hope we can help you.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Darci- I can't imagine going through Lyme and custody issues. Any other testing to support a Lyme diagnosis? What are their symptoms?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Folks, I accidentally deleted p8ntergirl's post when I was responding to her - I forgot I have magical powers as a moderator, so I'm pming her right now to repost!!
[ 01-08-2013, 11:21 PM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was wondering what i missed. i am a mom of a congenital lyme kid...but she is 28 now. i will have a different perspective but would like to be with you.
i had undx lyme when i gave birth to her and then nursed her 3 yrs. she was different than my older 3. smart but wimpy and refused to have a waistband cuz her tummy hurt. she had upper gi testing when she was very young-scarey for me...no results. she didnt speak til she was 3...then talked in sentences and was very smart in school. (hated PE) had emotional outburst stuff. at 10 yrs she was a straight A student but refused to go to school cuz she was so tired.
that is when i pulled out all the stops cuz docs and school were sayinjg she was faking...i took her to alternative doc in town he dx her and began tx. then dx me and i began tx.
she was txed 2 yrs and pronounced well. i still saw residual stuff but pre teen years etc...was like walking on eggs. she went into denial.
i had her take one session with a lyme literate social worker in her late teens cuz she was going to college and still in denial. i felt i needed this therapist to tell her what she refused toaccept from me.
then it was basically in her hands.(she wanted it that way) her problems were not over but she insisted on handling them her own way and now she is married, close to getting her doctorate and would be considered a success - a healthy success by most.
i still have concerns and our relationship is kinda wierd.
so i was starting this journey back in the 80s before they knew as much as they know now...but many of the great llmds of today are docs i worked with...they were just at the beginning of their careers
so my experience witll be different than yours...im not for sure what i would have done differently ...it would have been different if the mainstream docs were lyme literate. but even now they arent.
one thing about her and her brother who had many tick bites and many lyme treatments...they both studied the sciences in college and they both have adopted very healthy lifestyls: eating, exercise, no drugs and very little alcohol...so i guess that helps.
good luck moms...i send you strength...you will need it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I like the idea of a thread for moms. My kids do not have congenital lyme. My youngest was bit by a tick 2x in one year.
She became symptomatic after a bike accident. We thought she just suffered whiplash but the chiropractor after adjusting her a couple of times said she was not out of adjustment.
She started having bad head, neck and back pain. Then, stomach issues and anxiety. She is unable to be alone.
My other daughter became symptomatic after getting antibiotics for a strep infection. Her symptoms are all over the board.
What I hate the most is that I do not always feel on top of my game due to my treatment. I can forget meds and seem less empathetic at times.
Both of my children are progressing. The hardest part is determining if they are improving. Children seem to be able to override alot so you don't know if they are ill until they are "really" sick.
Thanks for the vent.
Posts: 538 | From kentucky | Registered: Nov 2011
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I was wondering is there a way to determine whether its safe to have children with lyme disease ? a way of knowing for sure you won't pass it on?
Thank You
Posts: 58 | From east sussex | Registered: Apr 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
My son was born 3 yrs ago. I didn't know I had Lyme disease at the time, I was told I had "Depression".
By 1 yr old, my son had sensory issues and autism traits. At 2 yrs old, I had him tested for Lyme after I found out I had it...he was positive.
Thankfully, he responded quickly to treatment and is now on supplements to maintain. He is backsliding a little, so I am having my ART nurse treat him.
Looking back, I knew I was sick, but the Drs kept telling me it was all in my head.
I'm glad I didn't know I had Lyme back then because he (and his sister) are what keeps me going each day.
quote:Originally posted by lax mom: My son was born 3 yrs ago. I didn't know I had Lyme disease at the time, I was told I had "Depression".
By 1 yr old, my son had sensory issues and autism traits. At 2 yrs old, I had him tested for Lyme after I found out I had it...he was positive.
Thankfully, he responded quickly to treatment and is now on supplements to maintain. He is backsliding a little, so I am having my ART nurse treat him.
Looking back, I knew I was sick, but the Drs kept telling me it was all in my head.
I'm glad I didn't know I had Lyme back then because he (and his sister) are what keeps me going each day.
Ah of course! I'm sure your children are the most important thing to you and they wouldn't want any other mum now!
Its just I am 20 and was wondering whether there will always be a risk for me when having kids now?
Posts: 58 | From east sussex | Registered: Apr 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
mug...there is a famous lyme pediatrician who knows what abx to give a pregnant woman to prevent her from passing lyme to baby
also woman on here who went thru taking the the abx while pregnant could also help you
i can give you the docs name and number if you pm me. he is good about consulting with other docs
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Mom's of sick kids have huge challenges. It is important to have someone who gets your struggles. I have met wonderful friends on LymeNet who are a constant source of support. I had so many questions in the beginning.
I hope we can help eachother.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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