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Gestational-congential Lyme

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Posted 8/28/2013 12:09 AM (GMT 0)
Does anyone here have a baby who was born with Lyme or co-infections and you knew right away? I really don't want to go into details on here but my little one had painful joints right from the start. Her neck hurt, she Cried all the time. Now at 1 she has weird rashes, gi issues, barely sleeps, screams and cries, hates cuddling or being touched, falls a lot, barely eats any food.
I just recently found out I have Lyme myself so I'm assuming I passed it onto her. Had anyone treated a child this young for Lyme?
Posted 8/28/2013 1:34 AM (GMT 0)
Oh, I am so sorry that you and your baby are going through this.

I do remember reading something that babies need to be a bit older before being tested. I'll try to find the info.

Are you seeing a LLMD? Can we help you find one?
Posted 8/28/2013 1:40 AM (GMT 0)
Here is info about Lyme and pregnancy:

http://www.drjoneskids.com/

http://www.lymepa.org/Corson_2004_0424_Slides_Handouts.pdf
Posted 8/28/2013 1:59 AM (GMT 0)
Our LLMD believes we are also dealing with congenital lyme infection with our daughter. Please be very informed about vaccinations. Our daughter became apraxic and developed autistic symptoms with her 15 month MMR shot. My feeling - her compromised immune system couldn't handle the increased burden of the vaccination.
Posted 8/28/2013 2:23 AM (GMT 0)

rowingmom said...
Our LLMD believes we are also dealing with congenital lyme infection with our daughter. Please be very informed about vaccinations. Our daughter became apraxic and developed autistic symptoms with her 15 month MMR shot. My feeling - her compromised immune system couldn't handle the increased burden of the vaccination.


She actually has never been vaccinated. We held off at birth and when she started screaming nonstop at 1.5 weeks old we just didn't do it since we had no clue what was wrong. Im so sorry about your daughter and vaccines. How old is she now??
She cried nonstop till 7 months and it got a little better.
Now at a little over 1- she is extreme high needs. Reading about high needs kids- she is so much worse. She can't control her emotions at all. Things set her off and she's ticked! If one more person asks me about her extremely high pitch scream at the grocery store I swear I will snap. Her scream is like nails on a chalkboard. She won't sleep well at night- thrashes around all nigh, whining and crying. I haven't slept in over a year!
In her early days we took her to so many chiropractors and they said her neck looked fine but agreed it hurt her- same with arms and legs, especially shoulders. Her one shoulder was inflamed for awhile.

I am not seeing anyone currently. I have other children with lyme (we were all infected probably at the same time) and I'm trying to get them well as money is tight. But now knowing I have it and my littlest one has it (my husband has it too...)

My oldest daughter did antibiotics for months but she is still very sick- it didn't help. We have tried alternative and herbs but so far nothing is helping her.

Post Edited (Jewel_Noelle) : 8/27/2013 8:27:32 PM (GMT-6)

Posted 8/28/2013 4:04 AM (GMT 0)
You have so much to deal with Jewel. Keep coming here for support and to talk it out. I sure hope you'll find some answers in the near future. Do you have any family members to help you out so you can get some breaks, like your parents or inlaws, etc.?
Posted 8/28/2013 11:41 AM (GMT 0)

Garden Peace said...
You have so much to deal with Jewel. Keep coming here for support and to talk it out. I sure hope you'll find some answers in the near future. Do you have any family members to help you out so you can get some breaks, like your parents or inlaws, etc.?

Thanks. My parents are capable of helping with my oldest, but not my younger too. My youngest will not let anyone else tend to her except me. She was like that since birth. Would scream even louder if someone but me was holding her and now at over a year old she will only let me, and occasionally my dad touch her. The other night when she was screaming in the night- I let my husband hold her for a few seconds so I could use the potty- well that set her off into a frenzy and screamed the rest of the night in anger since I left him hold her shortly. She even doesn't really let me hold her most of the time, unless she's tired.

Thanks for listening everyone. I'm just exhausted. She was supposed to be our "happy healthy child". Our middle child was born with multiple birth defects (could be Lyme related knowing now) and he requires a lot. He was very irritable and we used to chalk it up to "brain damage" but she is almost worse than he was.
Posted 8/31/2013 3:36 PM (GMT 0)
Anyone else with a baby infected as a newborn and you knew right away by watching them?
Posted 8/31/2013 5:52 PM (GMT 0)
Hi!

I'm really sorry to hear about all of your troubles, it seems they are not fairly distributed sometimes and one family gets so many.

I worked as a therapist for children, the organization was called "Birth to Three.''

It is a CT. state program, peds. are aware of it and sometimes rec. for their patients.

But anyone can call and ask for an evaluation for their children as long as they are under three years old. It is essential to have a thorough evaluation they use ,a sliding scale depending on each families income, number of children etc.

 If I remember correctly the evaluation is free.

Most of the families were paying a small fraction of what these services would cost through use of insurance or privately.

We came into the families home for evaluations and therapy sessions so we could help everyone in the family to cope better. It was designed to be very non-invasive.

They offered occupational therapy, physical therapy, speech and language services, psy. support, interventional therapist, social workers usually oversee the management.

Early intervention is so important I saw babies and toddlers make incredible progress in short periods of time. Their brains are still fluid and this a time when significant problems can be addressed.

I totally understand the problems your child is experiencing very challenging times for you and you do some  respite. It is not uncommon for a child like this is have only one person to soothe them.

Many times therapists call it "multi-sensory integration problems." If you know any adults with severe nero-lyme they have these problems.  It is like they can't regulate  the stimulus that they are experiencing and it becomes to overwhelming for them.

I hope this information helps, I wish I knew what each states do but it is well worth it to find out.

If you have any questions, please let me know.

I will be praying for you and your family.

This information is just my opinion, but I felt it might help you head in the right direction.

Please let us know how you guys do.

Take care of yourself too!

Anna

 

Posted 8/31/2013 10:11 PM (GMT 0)
Hi Everyone,

I was diagnosed with Lyme back in 2009. I got pregnant in Jan 2011 and my first "supposed" LLD did not have me on amoxicillan. It took me about 3 months to find another LLD and she began me on amoxicillian during the 4th month of my pregnancy.

He was born healthy and is now 2. I can really only recall him being sick just a handful of times, however I started noticing at 6 months his left check and ear would become inflamed. His pediatrician told me that he was teething. Over the last year and a half the ear does reguarly become inflamed.

Just about three weeks ago my little guy had tiny little red bumps on his body and the next morning woke up in a rash of "hives". It did not seem to bother him, he was not sick with a fever or runny nose either. We chalked it up to him suddenly being allergic to peanut butter. Exactly a week later the rash broke out again. After a few days it cleared up.

Well since this time I have found out I am pregnant and feel like my Lyme is now flaring. (BTW I am already on amoxicillan) I just was doing a Google search on Lyme when a random picture appeared of erythema migrans. This looked exactly what my little guy had. So now I'm just devastated-this is rash that appears after contracting Lyme correct? It's crazy to me that he could be so healthy. Has anyone else experienced this with themselves or their kids seeming normal and healthy? I never dealt with the fatigue, sickness or severe symptoms most Lyme patients do. It was more neurological tingling, numbness, dizziness etc. when I was diagnosed.

Any help or thought is so appreciated. I am hoping that finding the picture is a blessing and we can begin treatment for him now sooner than later.
Posted 9/1/2013 12:45 AM (GMT 0)
I'm going through this right now, but sorry no answers for you. I too am wondering if treatment will be easier and faster on the little ones with few to no symptoms. Please post any info you find, and I will do the same for you.
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