posted
I am only just putting this all together after reading way too much on site. I don't want to "see Lyme in everything," but here is my worry:
My oldest son was bitten several times when he was 7 years old. No symptoms except possibly once. He was treated with amox for headache/sore throat after tick bite (only for three weeks) back in 2005. He felt better right away with treatment. He's now 10 years old and very active.
My youngest was possibly exposed in utero in 2000-2001. He is now an active 6-year old. Was bitten in 2005 with no symptoms afterwards.
Neither son appears ill. Yet there are quirky things that have cropped up over the years that make me wonder if I should have a full Igenex work-up done on them.
Youngest has pinnea, was floppy at birth and has low motor tone, had breathing problems at birth, late milestones, a seizure 7 days after getting MMR vaccine, speech delay, balance issues that seem to be improving, gets very red in the sun and with exercise, gets tummy aches from time to time.
Oldest has gotten strep easily, headaches with strep, had a period of sleep disturbance, became very worried at 7 but has since gotten over it, sleep walks, dark circles under eyes, used to get sweaty at night during sleep.
I worry that they may be asymptomatic right now, but could get slammed in a few years. All of their symptoms came separately and left separately. Had western blots and PCRs done on them last year with no positives.
If they came up positive for anything in Igenex, will LLMDs treat a seemingly healthy child? And without symptoms, how would you know when to stop treating?
You just never stop worrying, eh?
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This is the $64,000 dollar question.
Often people .. including children... have what was explained to be other things.. when in fact after learning about Lyme and looking back at the history.. those "things" could have been related.
Of course we know how bad it still is today... and people with Lyme get missed and/or improperly treated even with the classic symptoms.
If you haven't had a work up for both children with Dr. J... may I suggest.. or rather let's put it this way...
If it were my kids... knowing what I know now...
I would high tail it there... oops... just an expression- not meant this is an emergency.... and have them checked. He is the one doctor I feel who is able to give the best advise in this circumstance... and ONLY after seeing the children.
Then.. mostly because you are in an endemic area... and they are kids... I would have them checked once a year.. like an annual physical... and tested. You would also of course watch for any continuing symptoms... and also any new ones.
I would NOT worry myself sick over this... and would hope they wouldn't either. I think being cautious is good. Being afraid isn't.
I wish I had a clear cut answer for this and so many more questions... but until we all know more details and get more research dollars going in the right direction to have accurate answers (bills passed, etc)... no one will know for sure.
It is good you are thinking and are concerned. Wish we had many more mommies like you!
posted
tori, feeling for you; yes i too recommend dr. j to check them out then you stay on TOP of this!
From ``GENEAL'' June 2007
I have been doing some research regarding Lyme and signs/symptoms in small children.
I know many of you have small children that you may be concerned about. I believe my youngest child (4yrs old) may have gotten this disease from me.
For All Children
-dizziness -neck pain and stiffness in almost 90% -sore throats -swollen lymph nodes -excessive thirst, -Chest pains in at least 70%, some have palpatations -Sense of air hunger or shortness of breath, dry cough
-abdominal pain in about 50%, can mimic acute appendicitis -sometimes vomiting, heartburn -rashes that come and go, malar rashes, new psoriasis
-migratory arthralgias, joing pain in 50% to 100% -myalgias in over 80%, back ache, morning stiffness, pain at rest, muscle weakness
-frequent illnessses, dark circles under their eyes -intermittent red, hot pinnae of ears -sleep disturbance in over 80%
-Neurological symptoms are protean and can appear AT ANY TIME during the course of infection *hypersensitivity of skin, scalp and hair *Hypersensitivity to noise, light, smell *Alterations of taste *poor balance and coordination *Uncharacteristic behavior outbursts, mood disturbances, depression *social withdrawal *New onset phobias *Oppositional behaviors *Obsessive compulsive disorders *Deterioration in school performance in over 90% *Difficulty with concentration and attention in school with easily distractibility as well as "brain fog" in over 80% *New onset of ADD
*When measured with formal neuropsychiatric testing, children demonstrate defects in auditory and visual sequential processing
Less Commonly:
*Movement disorders-spaticity, ataxia, motor or vocal tics *Cranial neuropathies, e.g. Bell's Palsy or optic nerve neuritis *Peripheral neuropathies-numbness and tingling, distal parathesias, subtle weakness
Pre-Schoolers and toddlers
- Modd swings, sudden emotional outbursts - Irritabiity - Personality changes - Regression of motor and social skills (developmental milestones) - Changes in play behavior, tire easily, less active
- Trouble falling asleep, frequent awakenings - Nightmares, new phobias, recurrence of seperation anxiety - Diaper rash unresponsive to normal treatment - Frequent URI's, ear and throat infections, bronchitis, pneumonia
Congenital Lyme Disease
* Infants can be infected with Borrelia transpacentally in any stage of pregnancy and/or via mother's breast milk.
* The co-infections: Babesia, Bartonella, Mycoplasma and perhaps even the Ehrilichias can be transmitted transpacentally to the developing fetus.
* Gestational Borreliosis can be associated with repeated miscarriages, fetal death in utero, still births, hydrocephalus, cardiovascual anomalies,
intrauterine growth retardation, neonatal respiratory distress, and maternal toxemia of pregnancy.
* Infants either infected congenitally or from breast milk can have
- Floppiness with poor muscle tone - Irritability - Frequent fevers and illness early in life - Joint sensitivities and body pain - Skin sensitivity - Gastro esophageal reflux - Developmental delays -Learning disabilities and psychiatric problems
* Infants bitten very early in life will have many of the same symptoms - loss and decline in developmental milestones.
I found this to be a pretty inclusive list of signs/symptoms for small children, infants, and those suspected of congenital Lyme.
Sadly, my two children do exhibit many of these symptoms and both have positive bands for Lyme via Igenex diagnostic lab in PALO ALTO, CALIFORNIA.
IP: Logged |
posted
Hi, It is interesting that you mentioned the reaction to the MMR vaccine. My son (who has congential lyme) had a bad reaction to the MMR vaccine which resulted in him being hospitalized for 5 days. Both were like your kids, not terribly sick but something just didn't feel right about them. It wasn't till I got sick myself, that I thought to test them. Both have it and have been on treatment for 5 months.
Posts: 41 | From Singapore | Registered: Jan 2008
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Dr. B's advice to me about my daughter who's also had exposure and questionable symptoms from time to time, but who is overall healthy, and active, was to leave it alone. He said he does not think it's good to subject the child to heavy duty treatment in the case where the symptoms are not overtly obvious nor interfering with life.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
I think there is a lot of gray area when it comes to kids and lyme. Especially yonger ones who were born with lyme because they may have symptoms, but because they have always had them don't say anything about them because they think it's "normal".
My kids were normal active kids. But plagued with chronic infections, ears, throat, etc. But never ones to lay on the couch in fatique. But over the period of their treatment they have become different kids. The look better, their behavior has improved, they are communicating better. I don't regret treating them one bit. I think by doing so I have given them a better chance in life, so they don't end up like there mother, battling just to get out of bed.
Posts: 41 | From Singapore | Registered: Jan 2008
| IP: Logged |
posted
Hey you guys -- -- thank you so much for your replies!
tincup -- I really want to take them to Dr. J, but the $$ is more than we can handle at present. I know the long-term "cost" could be worse than the visit (theoretically), but I was hoping to get the proper tests mailed to me and take the boys for the blood draw at their pediatricians.
If bands show up, I'd go to Dr. J. instantly. That said, my panic-button is half pressed to go to Dr. J just based on the sporadic symptoms. Trying also to play it calm and step-wise, so as not to worry the little guys.
bettyg! Thank you for reprinting Geneal's kid research. It was her list that got me going to begin with; especially the in utero list!
tad -- So interesting about the MMR! We are not getting the second MMR, because my son has acquired the antibodies from the first. So afraid of another bad reaction.
As an infant, he had fewer illnesses than my older son. Yet, he has really low muscle tone that affected his early acquisition of speech and swallowing comfort. Still sort of floppy, but talks nonstop. He's precociously smart, but gets spacey from time to time.
Definitely has my inner alarm ringing. Never want my kids to experience the Lyme that has derailed me!
dontlikeliver -- I, too, have the feeling that I don't want to inundate my kids with treatment needlessly.
I do think annual testing as a norm is very wise. The past two years, I've been getting tests from my LLMD and battling with the pediatrician to draw blood for them. We love the pediatrician, but he is definitely no LLMD.
So, I'm going to push on for the tests with Dr. J as my next step if needed. I'm going to send for the standard Igenex package with additional co's package. [cannot get original Igenex standard sent to NY! As posted on their site!]
I'll keep you posted on how this evolves. Thanks again for your responses.
Best,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
| IP: Logged |
Cobweb
Unregistered
posted
I took my teenager to my LLMD for testing. She had a whole plethora of symptoms-especially when she was a toddler...
about the time I was sitting in an ENT office with her on my lap and actually found a tick embedded in her neck.
He really botched the job of removing it,too I might add.
Anyway-she was there for her chronic sinus infections-which may have inadvertantly treated her for lyme..
because she had been on 3 months of antibiotics (for sinus/ear infections ). Finally he prescribed a really powerful antibiotic-Zith I think-which finally seemed to knock the infection out.
Fast forward 15 years and we're in an LLMD office where she tested positive for exposure to Lyme-and for a long period of time. Not sure how they worked that out.
LLMD warned us of the consequences of not treating for Lyme. So we did another course for several months.
LLMD also tested for gastrointestinal problems and found out she has Leaky Gut. Changing diet has made a big difference for her.
Now I would describe my daughter as previously exposed but not symptomatic-and will only treat if she shows prolonged obvious signs of relapse.
Although I think the diet change is a for life change.
We are in the same boat as you. I have been concerned about one of my 4 year old twin boys for over a year now. He is also a very active boy.
We actually took the entire family to see Dr. J a year ago and my son's exam and bloodwork was normal. Only band 41 showed up through Igenex. Fortunately, Dr. J did test my husband (which was positive) and he is now being treated (by another LLMD) for chronic lyme.
We did treat my son for a month of ABX last year upon Dr. J's recommendation, but I wasn't willing to do any more than that. I was pretty new to the lyme thing and also my son had a normal exam and only a few suspicious things such as mild sunlight sensitivity, irritability and sleep disturbances.
The sleep issue got better and the sunlight issue seemed a little better so I thought that perhaps he didn't have lyme afterall. However, for the past 2 months he has been constantly sick with colds and ear infections, a gland infection and huge tonsils. He also seems really tired.
We tested him again throgh Igenex and this time he got a postive band for lyme (34) as well as several other lyme specific bands that were IND. The result was negative, but change in the test result really scared me.
I have been researching a lot and have learned about more symptoms that could possibly be lyme. He has red ears often.
He dosen't like wearing many shirts and needs the tags removed.
He blinks his eyes alot when watching TV.
He has night terrors and sleepwalks.
He has said some violent things like "I'm going to poke you in the eye."
Other mothers of children with lyme have told me that their sons had these symptoms.
Now my husband and I think he does have it, but it has probably been kept at bay from all of the antibiotics that he has taken for his ear infections. We are seeing Dr. J next month, and now we are ready to treat him if Dr. J says so.
Just curious, how often do your son's ears turn red?
I noticed my other son's ears get red sometimes too, but not as much as the one who I think has lyme. They have both been bitten by ticks, so sometimes I think I should test the other one too, although he seems totally healthy.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
feeling for you; yes i too recommend dr. j to check them out then you stay on TOP of this!![[Mad]](mad.gif)
As posted on their site!]
Printer-friendly view of this topic