posted
We have had our 5 year old son tested for Lyme (still waiting on results). We believe I have had Lyme at least that long and I breastfed him for over 2 years.
I am terrified of the results being positive, but want to be educated on what our next steps would be. He is not showing any symptoms to make us think Lyme is active currently.
What is the typical treatment for children who are not showing symptoms? Is there specific guidelines for this?
Thank you!
Posts: 76 | From IL | Registered: Oct 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm not sure about guidelines. But two of my three children were CDC+ and the other was clinically diagnosed and then confirmed with test results.
My youngest was 5 when he was diagnosed. He had behavior issues, was dx with ADHD and ODD and I recently discovered he is dyslexic. His only "symptoms" that I found suspicious was foot pain and sound sensitivity. Some twitches that I noticed. All the rest were behavioral for the most part. My kids were started on Zith.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
An article I read in Lyme Times in Summer 2005 by Dr. J of CT and Dr. H of CA said that children tend to show symptoms at ages 4, 8 and puberty. (edited later: This is a good article, but it doesn't contain this citation. I read it somewhere, will continue to look for the source).
It was a very informative article; you may want to look it up. I can send you a copy if you PM me.
My daughter was also breastfed over two years. She was totally fine until age four, then sudden anxiety and urinary issues. Other issues crept into the picture over time until full-blown serious symptoms at age 12. She is 16 now and is fine, after treatment.
Everybody is different, of course. I know a few congenitally infected kids. The ones I know have responded very well to treatment.
I know that, as a parent, this is very scary. If he is positive, this is the time to catch it, before it becomes a problem.
I'll be holding good thoughts for you and your son.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
I can totally relate. I just had my 3 yr old tested and he was positive. I was devastated.
We took him to dr. C in mo who recommended holding off on treatment. He did not see any symptoms and didn't want to stir up a hornets nest esp. Since I am still so sick.
Of course I worry and have anxiety over what may come and if we r making the right decision but he did say that he felt confident that if/when symptoms appeared, treatment would be successful.
I can only pray that is the case...
I'm so sorry you are going through this.
Posts: 47 | From Texas | Registered: Oct 2010
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posted
I'm sorry, but I misspoke about the article above. I just reread "Pediatric Lyme Disease: Diagnosis and Treatment" from Lyme Times, Summer 2005.
It is a good article, but it doesn't mention the onset ages I mentioned above. I know I read that somewhere when my daughter was diagnosed in late 2007. I thought it was that article, but apparently not. I'll keep looking through my files for that citation.
That issue of Lyme Times (by CALDA) is the "Children's Treatment Issue" and all the articles pertain to children. I have a couple extra copies. If you want one, send me your address and I'll mail it to you.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Most LLMD's say not to treat if you don't have symptoms.
Treat only if symptoms are present.
I know how you feel. My 2 year old daughter was bitten last year (before I was dx'd and educated).
Finally took her to an LLMD 10 weeks post bite who did a phone consult with Dr. J and they both thought she was fine. It is now 1 year later. She is 3 and seems okay, but I do worry.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My nephew at age 5 tested postive last week through Igenex both IgG and IgM. His symptoms are colds that linger, allergies and nothing too alarming. To treat or not to treat is the question in congenital Lyme. I recently inquired with a Lyme advocate and she said to see the well known pediatric Lyme doctors because of brain development at this age. She seemed like treatment needed to be started. With my own child I would wonder what bomb would go off next. He kept getting sicker and sicker before we knew it was Lyme and I was the cause. Do you wait for behavior issues, physical symptoms if a child is clearly positive? Can anyone recommend any reading on the topic? If we knew he had Lyme at age 5 with his migraines, would we have been spared all the other ailments? I feel so bad for everyone in this position!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I didn't treat my 12 year old until he was 12. He had symptoms all along, but no one knew what to do. We treat both our kids. Lightly, but still we treat.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
peacemama: Have you ever wished you had treated your son earlier? It sounds like maybe if you knew what to do a few years ago, you would have started treatment. My son declined after every virus until bedbound, not knowing it was Lyme. I don't wish that for my adorable nephew. Do you immunize if you aren't treating known Lyme in youngsters?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
My kids were all bf over a year, almost 2. I had Lyme whie pg with all 3.(had it since '92)They were tested at ages 2, 4 and 6 and my 4yo had pos. bands(not cdc though) and all 3 had cd57 levels below 20. My eldest then went on to be bitten by a tick and got an active case(or just woke up the one he had?)and was treated immediatly with 30 days of abx.
My eldest is on the Spectrum, and the younger 2 have some issues as well...all 3 have waxing and waning symptoms of what could be Lyme...I assume they are and treat accordingly. I use herbs with them, usually on 30 day rotations.
I do beieve that Lyme can be passed in-vitro. I am trying to stay proactive and treat as things arise to prevent them from getting really sick and/or herxing badly. So far we hae been ok...time will tell though...
We did not vax, but that was a choice we made prior to my Lyme dx.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
There are both objective and subjective symptoms of congenital Lyme
In both infants and toddlers. I did a pretty comprehensive list here a while ago.
I don't have time to go back and search for the link,
But I do know that there were things that I saw in both of my children.
One was objective such as joint pains, fatigue, etc.
The other subjective such as red pinnas of the ears, developmental delays, etc.
Armed with both symptom lists, Igenex tests and children in tow
I approached my LLMD. Based on what I researched and found, my LLMD decided to treat both my children.
By the way, my youngest, the one with the subjective symptoms had more positive Lyme bands than the rest of us.
I know the post was a couple of years ago.
Try searching under my name. It may help you make up your mind.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
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 infected congentially can have -Small windpipes (tracheomalacia) - Eye problems (cataracts) - Heart defects
* 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.
I hope this list helps.
Hugs,
Geneal
Posts: 6286 | From Oregon | Registered: Jan 2006
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Terry K Are your children in treatment? I was reading the Lyme Times newletter devoted to children and Lyme. I wish there was something more recent. I think it had a copyright of 1995. When I finished reading, I just thought the message from the articles is that young children need to be treated and that sometimes mono therapy can help. I wish there was a data base that said what people tried with their children, the outcome and the age of the child. Thanks for posting Geneal's old post. I am off to read it!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My daughter was in her late 20's when I found out I have lyme. She seems to be fairly healthy. All my siblings, their children and grandchildren are all sick except one of their children. None of them are in treatment. I don't think they believe that it is lyme although their symptoms are similar to mine.
If my daughter ever does get sick she will know what to do based on my experience. She is just getting ready to have children. I worry about that but at least I know what to do to help her.
The problem is that congenital transfer is not accepted as an issue by mainstream medical. It seems like a stretch to most people that TBI's could be passed through the generations. I have no problem understanding that it's a real possibility but have no luck getting my relatives to act on it.
If indicated, I'd do whatever was necessary to get them treated while they are young and you have some say over health issues.
Good luck, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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