posted
7 yr old girl Their cat is in & out of the house. Deer in neighborhood. Known cases of Lyme disease in area.
Need some input on whether this child could have Lyme disease?
For several months: dry eyes somewhat drippy nose (Dr says no allergies)
recently: complains of pains in her legs (Dr says "growing pains")
Last weekend: Eyes started having "nervous tic" One second episodes of eyes rolling up & she stops speaking. Eyes come back to normal & she resumes conversation as if nothing has happened. Her father said it's happening for about a second and about once a minute.
Otherwise, she seems perfectly healthy & normal. No other symptoms that I'm aware of at this time.
Ophalmologist said eyes check out fine. It's a nervous tic that may be transient, but he wants a Pediatric Neurologist (edited to correct) at the Medical University of SoCar in Charleston to see her. First appt available is in late June.
Med Univ of So Car has a VERY narrow view of Lyme disease. I'm not aware of any cases they have diagnosed. A couple people I know have been told "You don't have Lyme. You need a psychiatrist."
Need the opinion & help of LymeNet experts. I've been told I see Lyme disease everywhere I turn, but for me a red flag has popped up with this situation.
1. Two systems of the body are involved. 2. Dry eyes can be symptom of LD 3. "nervous tic" appeared so suddenly & is occuring so often (about once a minute). 4. "Growing pains" are usually seen in older children. 5. Pains in legs can be symptom of LD
Hoping some of you have experience with some of these symptoms & can help me.
[ 14. May 2006, 09:28 PM: Message edited by: cbb ]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
I am not sure if the child has Lyme. Based on those symptoms I wouldn't bet on it. I would opt to save my time and money and go to a LLMD instead of the medical hospital. I have heard the same thing about the Medical University's view on Lyme. Charleston is become a hot bed for Lyme. Nobody wants to admit they have this damn disease in their backyards. It hurts property rates and tourism. I lived there for 6 years in the late eighties and early nineties and I have a feeling that is where I got infected.
I think our dog died of Lyme we never got her tested. Knowing what I know now she had lots of symptoms of Lyme. There were deer all the time in our backyard. Sometimes right up to our backdoor. Dog would have lots of ticks and fleas. Our white carpet would look like a flea circus in the summer it was gross. I was flea bombing the house weekly. This was before interceptor and the other flea meds for dogs.
When I first started going to Dr J, he claimed that 60-70% of their new patients were coming from the Charleston Area. Babesia is bad down the eastern coast as well.
Posts: 649 | From United States | Registered: Dec 2003
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posted
This child lives in Beaufort (which is south of Charleston - for those who aren't familiar with our state).
I agree - a LLMD would be first choice. In my opinion, the Med Univ is definitely not the best place for an evaluation when there's a possibility of a Tick-Borne Disease.
Thanks for your input!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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I am not a doctor, but just the symptom of her eyes rolling up. and she stops speaking for a second, and the frequency is possibly indicative of a mini seizure.
Plus her nervous tic,leg pain etc. Please get her to LLMD ASAP. This is my opinion, and not meant as medical advice.
Hope this helps,
Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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posted
Oh, boy. My son has congenital lyme. But he also has acquired lyme disease. He started having all of the above mentioned symptoms a few weeks after the classic bull's eye rash. Things really went downhill from that point on.
I don't know if it's lyme, but I'd definitely have the child evaluated by an LLMD.
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
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posted
Cbb, Sounds like lyme symtpoms and or co-infections, but of course I'm not a doctor.
It could be a lyme like seizure. It's definitley something neurological if she can't speak and her eyes are rolling up in her head like she's lost of control of eye movement.
Hope they can get her to a lyme literate doc fast!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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posted
I really appreciate all the opinions & information you've shared.
I know she isn't having many symptoms, but I'm concerned about the frequency of the eye movements & how sudden it started.
I'm glad that everyone who responded recommended an evaluation by a LLMD. Maybe I'm not paranoid about LD after all.
Any other responses would be welcome, too.
Again, thanks to each of you for your help & concern!!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Wow, cbb, like you, I hate to be a hysteric, seeing Lyme everywhere, but I have to agree with your reasoning (multi-system, early for "growing pains"), and Biting Back's observations that she's seen this in her own son. The symptoms are unusual, but seizure-like activity does happen.
The parents might also consider having neuropsych testing done, by someone who is expert in testing young children. A wide discrepency in scores for speed processing and auditory processing, compared to other cognitive functions, is fairly typical for Lyme in children. Good scores wouldn't rule out Lyme, but bad scores could support a diagnosis.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Hi Shaz, Sorry it took so long for me to get back to LymeNet.
Thanks for your opinions.
About the neuropsych testing - May not need testing at this time. She is in first grade & has not had any problems with school work. She was one of the top readers in her class & has done well in other subjects, too.
Her Mom has a teaching background & would be aware of any cognitive problems. If the testing is ever needed, there is a dr who tested my grandson twice.
This 14 yr old is being treated by Dr J in CT. LD caused him to become very nearsighted in a rather short period of time and the Lyme also seemed like ADD. Thankfully, he is improving.
Again, a big thank you to everyone.
[ 14. May 2006, 09:31 PM: Message edited by: cbb ]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Talked with the child's father tonight - additional info & learned she has improved some.
The eye problem is not as noticeable. Their Eye Dr asked the Pediatric Neurologist if they should have an MRI. He said if she didn't get any worse, just wait until he ses her in June. If she does get worse, he'll see her sooner.
I asked about the growing pains. They took her to an Orthopedic dr. X-rays showed growth plate problems because she has stretched up a lot in recent months. He didn't say anything about her being so young.
Will follow her situation & see how it goes.
Thanks again for all your comments & concern.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Sent you more info in a pm. LLMD to check out. If you need more literature let me know . Thoughts and prayers with you.
Posts: 719 | From Delaware | Registered: Jan 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi cbb,
FSIW, my 14 yo daughter had a tick bite & rash in the spring. She's not sure if it was this past spring or the year before. She didn't tell me about it until I got a tick bite & a rash in June 2006.
She had surgery twice in the past year. She has an unusual problem with her growth plates. The condition is called slipped capital femoral epiphysis. This problem happens in rapidly growing children and is compounded by the hormonal changes common in teenagers.
My daughter began limping a month before she fell and fractured her hip. We found out she had this unusual problem.
Six months later she started limping on the opposite side and we found out it was happening again. The orthopedist pinned her opposite femur before it fractured.
Two weeks after the second surgery my daughter developed a seizure-like movement disorder. It's a non-epileptic seizure. These episodes happen up to several times a day if she forgets to take her anti-zeizure medicine.
I say all this to encourage you...I saw all these odd things and never put them together. After I learned of my daughter's tick bite, I suspected the seizure problem might be due to Lyme.
My daughter had a Igenex Western Blot test within 3 days of having a seizure-like episode. This was the first time I saw this happen.
Dd's Western Blot IgM report by Igenex showed 30 kDa +, and 41 kDa IND. I believed my LLMD when I was told the test was "negative", and "don't worry about it." I was furious when I later learned that these are considered significant bands, even if the test was considered negative.
The Western Blot IgM/IgG report by MDL was negative.
My daughter had been sick off and on for several years with fever, bright red cheeks, chills, headache, sore throat, dry cough, aching ears, stomach ache, and body aches. She missed 19 days of school the previous year because of her vague flu-like symptoms. I took her to the doctor some of these times, and was told she just "has a virus". The "virus" seems to come & go more than usual.
In September my daughter had 6 weeks of constipation and ended up in the hospital to be disimpacted. We learned she had H.pylori...and herxed on the treatment, which is similar to Lyme treatment. This confirmed my growing suspicion that she had Lyme.
My daughter wasn't officially diagnosed with Lyme disease for over a month, although a Lyme antibody titer came back positive. A family practice physician told us the test "wasn't positive enough."
If you'd like, print this out and give it to your neighbor. The little girl has several suspicious symptoms. She could go downhill quickly. My daughter was fine 7 months ago...at least she didn't have seizures, gut shut-down, or unrelenting pain.
Your neighbor's daughter needs to be evaluated by an LLMD. Don't waste your time with a regular physician or any specialists. They don't put 2 + 2 together...they only look for the problems in their specialty.
We had this problem. My daughter saw 3 different family physicians, an orthopedist, pediatric neurologist, and a pediatric gastroenterologist, but none knew anything about Lyme.
My daughter hasn't been to school since September. She's in moderate to severe pain every day. Nothing relieves her pain. She has to take narcotics daily.
Urge these parents to get help for their daughter so she doesn't end up like my daughter.
Nancy
PS Have them contact me if you'd like.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by cbb: Eyes started having "nervous tic" One second episodes of eyes rolling up & she stops speaking. Eyes come back to normal & she resumes conversation as if nothing has happened. Her father said it's happening for about a second and about once a minute.
Her parents should consider videotaping this.
It may stop, or may progress into something more, and a record of it will be useful to show the docs in the future.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
also maybe consider PANDAS which i believe is triggered by a strep bacteria.
also repsonds to abx and IVIG among other things.
also if lyme or PANDAS doesn't turn up anything, there is a DR from Maine who is trying some new things to treat autistic type diseases that involves treating infections and fixing problems in the methylation cycle.
thanks bill
Posts: 127 | From MA | Registered: May 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
this original post is from 2006
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Since this was May of last year, I was surprised to see it had come back to the top. Thanks for caring & thanks for the additional info.
For an update - The situation improved quickly after school was out & has not occurred any more.
The Pediatric Neurologist thinks the problem was a nervous tic triggered by stress in the child's classroom at school. The parents think this is probably the reason because this year, it has not happened at all & her grades are excellent.
Appears that this could have been a false alarm or just my paranoia about LD. That said, I'll continue to listen for any signs of possible Lyme.....just in case.
I also understand that symptoms come & go & the bacteria can go dormant.
Nancy, I really appreciate all the details of your daughter's symptoms & your offer to help.
Carol, your suggestion to videotape is excellent - if it happens again.
Bill, thanks for the info & website. Will check it out.
Thanks to all for your help & concern.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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