posted
Thanks in advance for reading thru this... I'm getting more and more concerned and just need some feedback. So when you read the info below, add to the list of symptoms my son is exhibiting, possible petit mal seizures.
Here's the background from my last post about my son:
I was originally diagnosed with lyme 9 years ago. Undertreated (21 days doxy).
5 yrs later, I give birth to my son. Everything is normal.
Though I have a really tough time recovering from delivery. (Later I came to realize that I was being tossed out of remission and back into active lyme).
I nurse my baby for 12 months, not knowing I still have lyme.
2 yrs later, I get raging active lyme again and I've been in and out of remission since.
Ok... my son has hit all his milestones (Physical and cognitive) along the way.
He's bright and has no apparent cognitive problems. He has always been an active little boy. He's had behavior problems, in school during the last year two years and has always been easily overstimulated.
His first grade teacher truly adores him. She knows that he's a very kind child and very bright. But he is exhibiting the following behaviors which ARE classic signs of adHd:
-hyperactivity -high distractability -easily overstimulated -angry outbursts -mood changes -over-reactions to small problems -inability to complete work --blurts things out and repeats same thing --does inappropriate things and then shows immediate remorse
**While he is still learning, he not progressing at the same rate as others with his same ability (which is high... he's one of the top in his class in math and showing great promise in reading). He's simply not able to focus long enough and cannot complete his work most of the time.
His teacher, who is an ace, by the way, says that he is going downhill fast... in the past few weeks.
We are seeing all of these things at home as well. They have become progressively worse over the past year.
The only physical symptoms he has shown over the past few years are: --leg pains, a couple of times a month --night sweats on two or three times this summer --sensitive blood sugar levels... needs to eat or he gets grumpY!
Other factors: We had him tested for lyme last year thru IGenex and the results were equivocal. So we tried a trial round of Amoxicillin with no apparent changes.
I've already spoken to my LLMD and my son will go with me next month for CD57, as she believes that lyme can cause these type of ADHD behaviors.
We also have an appointment next month with a psychologist to do testing for ADHD. We know that he will test positive.
We WILL go ahead and treat for lyme first, on the chance that we can avoid treating adhd with those drugs.
My question for you lyme mommies/daddies:
Has anyone had this same situation... I mean, given birth/breast fed when you THINK you had lyme... child shows NO definitive lyme symptoms thru the years, but then behavior just starts going downhill?
I have done a search and didn't come up with anyting particularly helpful.
My little guy seems to have had two observed petit mal seizures in the past three days. One during athletic practice and the other during class.
Do congenital lymies present with petit mal seizures?
Thanks again!
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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posted
I don't know about petit mal in this situation, but adults with lyme have them. I did. Don't see why it would be any different with kids.
Did you do a search of the archives for ADHD, have been a number of discussions here in the past about the possible connection to lyme, or as one symptom of lyme.
Not saying he has lyme, but it is suspicious.
Posts: 8430 | From Not available | Registered: Oct 2000
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All that info in italics was from another post. I provided it just for background so readers could get the whole picture.
I love that the search function is working well, now!
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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posted
Thanks for your reply and your concern, imanurse.
Actually, we went to the GP about the petit mals on Friday and we are headed up to the LLMD this morning. I've already had an initial consult with a psychologist regarding the adHd symptoms. We're also considering a visit with a pediatric neurologist about the petit mals.
I'm just looking to compare notes here.
A valid concern you have, though. It's important that lyme patients and their parents don't rely on message boards for medical advice.
I view lymenet, and other similar message boards, as a chance to do just that, compare notes. It's like sitting in the waiting room and chatting with the other patients.
I'll keep y'all posted.
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Talk to Dr. S in PN--a lot of parents have gotten in trouble for pursuing a Lyme diagnosis...Dr. Jj in NYC can help with the night sweats.
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Greenpea,
My kids,14 and 12, got bit by tic 5yrs ago.
1st symptoms to occur were ADD-stuff, irritability, and most of the things that you mentioned.
We went around the merry-go-round of trying to figure out what was the problem until my daughter got so exhausted she stayed in bed for 2-3wks straight and was tested for mono, and thank goodness lyme.
I would encourage you to investigate the lyme angle.
If these symptoms are caused by lyme, then good news is that they will improved with treatment.
Best Wishes, Char
Posts: 1230 | From US | Registered: Nov 2005
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posted
Update... went to the LLMD where little one had 4 vials of blood taken for testing for Bb and coinfections, and Stricker panel, along with all the other basics (thyroid, sedrate, anemia, etc.) We'll hear in two weeks on all the tests. Boy did he make the doctor feel bad for giving him a needle! He cried and cried! He was fine afterwards... she's a great doc!
Char, thanks. We are going to find out what is causing all of this before treating him for anything, including adhd... personally, I think that adhd is a symptom of something else, be it physical, cognitive or emotional.
LindaLD, my husband and I are not PERSUING a lyme diagnosis.
As you can see from my post above, we have seen the GP about the possible seizures,
we are seeing a psychologist about the possible adhd,
we have an appointment with a pediatric neurologist at one of the country's top institutions about the possible seizures and any other possible neuro involvement
and we are seeing a lyme-literate physician about the possibility that lyme/coinfections are at play as well, given my history.
I'd say we're just trying to find out what's causing my little boy's troubles. He's tired, he's pale, he's hyperactive, he's impulsive, he has pain, etc... We're just being good parents.
Thanks, y'all! I'll keep you posted!
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, greenpea, I like that you're going after every angle on this. Get all the facts you can on his symptoms and their cause, and choose what treatments are in the best interest of your child.
That IS good parenting!
You may want to consider that some of the ADHD things you mention sound very Lyme-y. It's called Lyme encephalopathy. My son has had a few of them, and they are slowly going away with antibiotic treatment.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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I just got the test results from LLMD's office. EVERYTHING came back negative/normal.
No lyme. No coinfections. All other basic blood tests were within normal ranges, including cd57.
The only thing out of the ordinary was his lymph count which was a bit high. (Not sure what that means.)
The LLMD feels that he probably does not have lyme.
So, this is good news... but we're still searching for the cause of his issues. We're setting up an appointment with a new psychologist to do cognitive and emotional evaluations and we have an appointment with a pediatric neurologist to see if there is a neuro problem.
His teacher continues to find ways for my little one to have success in the classroom, in terms of his behavior and his ability to focus and complete his work.
The beat goes on...
I'll keep y'all posted.
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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