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congenital lyme


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so -- both my boys and i have TBI -- although different ones. me - lyme, babesia, bartonella; ds6 - lyme; ds9 -- the whole shebang. i know it doesn't really matter and our drs try to stop me from thinking like this b/c there's really no way to know and the important thing is that we are being treated, but my head spins sometimes.

 

i had healthy pregnancies and deliveries with both. both were very healthy and strong babies and toddlers -- hit developmental milestones on time or early. ds9 had a few issues -- fever at 5.5 weeks; fontanel that occasionally bulged with no explanation -- normal CT scan, neurolgist and neurosurgeon eval (but does make me wonder) -- but was still very strong and on track.

 

i did have a hand rash - dr thought was topical, but bad enough to see dr - after working in the yard when ds6 was about 1 yr and i was still nursing. perhaps 6 mths - 1 yr later, i had issues that i thought were hormonal that i now think were probably hormonal driven by TBI. but of course, always other explanations -- getting back on track after pregnancy/nursing, getting older.

 

i don't think they had it as babies. but perhaps, i could have passed it to them and it was latent until they had other issues. for those that believe your kids have congenital lyme, were they more frail or sick as babies?

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Will be curious to hear what all the parents/moms have to say. The more I hear real-life stories on message boards, it seems like there has to be this condition of lyme where you have it but it's just not that bad (maybe even asymptomatic, living at peace). In this place, seems like you can pass it to your kids, maybe it just progresses really slowly. In some cases, a vaccination will really waken it up and cause things to quickly go haywire.

 

My mom remembers me as being a healthy baby and child. I remember a few more problems with stomachache and headache and sore throat than she does, we both remember the nosebleeds. For me, I don't know if I was born with it or got it as a child playing with deer (as we did a few times) or whatever. But, looking back, I had symptoms way back into childhood, they SLOWLY progressed. Until age 25, I would have seen myself as a regular healthy person (most symptoms are just part of life, how did I know, and I think everyone does this). Then I vomited blood there, and I was a 25-year old who knew I had at least some problem, but the doctors explained it as no big deal, nothing a drug wouldn't fix all up. It wasn't until 2006, age 38, when a near-drowning made things go totally haywire physically and emotionally to the point that anyone would have recognized me a person who really had a sickness/condition.

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I had rough pregnancies. I was administered steroid during my twin pregnancy that resulted in daily seizures and extremely high blood pressure at the time. Kids were born slightly early via c-section at 37 1/2 weeks and twins 36 1/2 weeks.

 

DS1: Seemed perfectly normal: Had a large head (which I now know can be Lyme related), noticed balance issues around one, bruised easily, croup 'three times' as a baby and given steroids. His first coughing tic appeared a year prior to sudden on-set... this cough started three weeks post annual vaccinations and was told it was due to sinus infection. Cough came and went over the course of that year. Sudden on-set was again 3 weeks post annual vaccinations, strep illness and exposure to child with virus. His only remaining symptom is that 'cough' and is currently resolving..... The cough has come and gone since 4.5 and he is now 7. First symptom to appear and last to resolve 'hopefully'... Dr. feels it is Bartonella related. Croupy cough at young age might have been same thing.

 

DS2: Went from being our happiest baby to very sick at 5 1/2 months old. We had a playdate with two other boys my older son's age in Nov 2007, one was visibly sick.... both tested positive for strep within days of us getting together. Shortly after playdate two of our children became very ill. This particular child was hospitalized for 6 days and diagnose with Kawasaki's inclusive of aneurysm's. The high fever broke after hdIVIG was administered. From that point forward, he seemed very irritable, often sick. Thankfully, we delayed annual vaccinations and stopped them all together at 2 years of age. We knew something was wrong by 2 1/2 years of age due to rage behavior and OCD. We had him evaluated for early on-set OCD at the time by a PANDAS believing psychiatrist. Thankfully, she put him on daily azithro from Nov. 2009 and saw improvement in both rage behavior/OCD. August of 2010 confirmed positive for Babesia/Bartonella. He continues to improve and we are very hopeful. Also had large head a birth. Back to having 'happy' disposition.

 

DD: Has slight birth defect, low birth weight of 4 pounds. For some reason her weight dropped off suddenly around one year of age. I was concerned but pediatrician told me not to worry. Between ages 1 and 2 she started getting sick about every 3 weeks... By age two she had velcro syndrome and literally had to be pulled out of DH and my arms. She became speech delayed and had one primary word of 'up' at 2 1/2 years of age. We also suspended or delayed vaccinations with her due to her twin bothers illnesses. She was put on daily Azithro in Jan 2010 by our pediatrician and many issue improved including weight gain. She too was evaluated for LD and remains serologically negative for everything: Strep, Myco, Lyme, Co-infections, etc. She has a lot of abnormal labs that are identical to her twin brothers: Declining IgG: 1 & 3, declining RBC, low WBC (resolved with antibiotics), consistently high Lymphocyte, declining strep pneumo titers.... It is very obvious that something was working on her immune system. Both twins had/have a Lupus like rash that is resolving very slowly. We ran labs 3 times on DD over last year per Dr. K's advice. She is responding well to treatment. Tomorrow I will get her 4th set of Lab results and we will see if some of these issues have resolved. We continue to test her for Lyme/co-infection in hopes we'll get converted results as she becomes stronger. Speaking in full sentences now. Still has lisp that is improving with treatment.

 

All children have elevated CAM Kinase.

 

Having read some on congenital Lyme... For some, mostly girls tend not to show symptoms until around age 8 and then suddenly have creeping symptoms/or sudden on-set.

Edited by SF Mom
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My girls have congenital lyme. I never felt great while pregnant. I struggled with edema and high blood pressure and premature births. Both pregnancies were c-section.

 

dd9 - twin pregnancy, premature labor at 27 weeks, babies born at 33 weeks, jaunice, feeding tube. dd was very healthy though until the ear, sinus, strep and chest infections started around 1 year old, intolerance to dairy and wheat. Separation anxiety and other odd/crazy behavior from age 2 on. Sensory processing disorder at age 5 and PANDAS at age 7.

 

dd8 - born 4 weeks early, jaundice, hemangioma birthmark on forehead and back. Lots of ear, sinus and strep infections, intolerance to dairy and wheat. (she had a large head too, didn't know it could be lyme related). Started growing breast tissue at 2 years old. Watched for more signs of puberty but none developed. Food hoarding and food issues since the start of solid foods around 5 months old. Deveoped PVC (extra heartbeat) seizures and sensory processing disorder all around age 3 and 4. Then PANDAS at age 6

 

After age 3, I started always searching for what was wrong. I guess when they started talking and interacting more, it became more obvious that it was not age related.

 

Susan

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suzan -- can you tell me more about your daughter's heart issue?

 

ds9 just had a cardio consult that termed normal. the initial reading of a EKG was to check more. regular ped was considering if the electric charge was coming from different places in the heart. the ped cardio said he'd have read the EKG as normal for a kid. he did a EKG there and an echo. he termed it "normal intraventricular conduction delay". i guess what it is is that the first charge goes through, then one ventrical contracts, then the other -- rather than at the same time. the cardio considered it normal for a kid -- yes, it's a delay showing a delta wave -- but it's normal heart function.

 

of course, we've never had a cardio eval previously so this could have been the way it's always been for him. or it could be TBI related. i guess we won't know that either b/c we won't do a work-up after treatment.

 

i certainly think it is related -- i guess we'll judge based on symptoms.

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suzan -- can you tell me more about your daughter's heart issue?

 

During one of my dd's birthmark surgeries, they discovered a premature ventricular contraction. That was when she was about 4 years old I think. She was monitored for a few years but they said she was fine. Now that she's on her lyme medication, she seems to notice the flutter more now and it really bothers her. I am hoping her heart beat corrects itself with more treatment but I don't know.

 

susan

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  • 3 weeks later...

Tampicc-

 

Just FYI-

 

It is very common to have multiple kids with pandas.

 

Both of my girls had strep around the same time two years ago (almost no symptoms of illness- just luck that we figured it out). The younger one (5 at the time) had a debilitating onset of pandas. At the time, her older sister, eight years old, NEVER an issue in her life that could be related to pandas, had a very mild onset of pandas. She (the eight year old) had a debilitating onset with H1N1 six months later.

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I've read it several places and our Dr. has talked about it..... but I don't remember exactly where I read it. I just google congenital Lyme on-set of girls and came across this comment in a blog

 

"Often girls with asymptomatic congenital lyme begin to exhibit symptoms around the age of 8. so we will watch her closely over the next couple of years"

 

Sorry put information is not sourced.

 

http://ticksandtrust.blogspot.com/2010/03/congenital-lyme.html

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Tampicc,

 

I don't want to scare you, but I did want to comment on your post about the eye rolling tic. Our DD who has PANDAS and Lyme has eye rolling as one of her tics. It is the one that bothers me the most which is why it stands out to me. I also have 2 children and live in fear that this can/will happen to the second, so I am hesitatnt to bring this up to you. But the eye roll in our family is always a bad sign. I hope it's not a bad sign for your family.

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