Topic: FYI--Pretty good Lyme symptom list for children, toddlers and congenital Lyme
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Good morning.
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: 6250 | From Louisiana | Registered: Oct 2006
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Do you have info on the Ronald McDonald House near Dr. J?
Posts: 582 | From midwest | Registered: Nov 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank You, Geneal
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Kayda,
I can't possibly afford to see Dr. J.....
My LLMD will be seeing and treating my two children starting in June.
Thank you for asking though... I really appreciate the thought.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Just know that it is entirely possible to test positive for lyme, have a low cD-57 count, and have NONE of these symptoms (other than the occasional toddler/preschooler tantrum )
Only one of my children have any symptoms at all; the youngest has food allergies. We're not sure how my step-dd came about with lyme, but our two youngest are most likely congenital.
Edited for spelling. OOPs!
Posts: 101 | From USA | Registered: Apr 2007
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bettyg
Unregistered
posted
geneal, where did you get info on symptoms?
i want to copy this list for my newbie info, etc, but until i get my address line back, i can't.
geneal, please copy your link here to TREEPATROL'S NEWBIE LINKS, and post it in a reply so he can add to his extensive archive. thx!
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posted
My son really didn't show any symptoms as a toddler. Of course he was colic for a few weeks. It was almost unbearable. Other then that he did almost everything early.
It wasn't until the third grade when the teacher started talking about focusing issues and he started to have stomach aches with a low temp.
I would add to your list executive dysfunction, ADD/ADHD symtoms that come and go. Also maybe graphomotor difficulties along with occular problems.
Posts: 547 | From Maryland | Registered: Mar 2005
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hardynaka
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Member # 8099
posted
Up, this is a good thread.
Posts: 1086 | From Switzerland | Registered: Oct 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
It is really scary to look at these symptoms and see them in my children.
Especially the one I believe to have congenital Lyme.
He was born with a heart defect, a VSD. No surgery required, but still....
He had to go to NICU upon being born due to respiratory issues.
He had colic (both of my children did-lucky me)
He was slow to develop. Didn't really get good head control until he was about 5 months old,
Didn't sit up unassisted until 7 months and didn't walk until he was 15 months old.
I always asked the pediatrician about this. I kept saying he is so slow to do things.
She pooh-poohed me off with "not comparing apples and oranges" as my daughter did everything early.
I was a provider (Speech Therapist) for 0-3year olds at the time.
I knew he was on that verge of what we consider "normal" versus "developmentally delayed."
Bettyg,
I gave my copy of this to my neighbor....Can't remember the web site, but will try to find out today.
Additonally, both my children who were positive via Igenex, have some pretty extreme outbursts and behavioral issues.
I thought that it was just their Daddy's personality as I knew it wasn't mine, but now I wonder.
I mean how many 4 and 5 year olds with defiantly stand toe to toe with their Moms???
And I am strict on behavior. There is consequence for bad behavior in my house.
Again, I am so thankful that I had them checked.
Hugs to all,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
This list of symptoms has been bothering me. Maybe because this list of symptoms pretty much includes just about anything that can go wrong with a child and maybe because many of these symptoms can be brought on simply from the over-vaccination of children.
Posts: 101 | From USA | Registered: Apr 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Mommy,
I believe you should trust your instincts.
When I took my child's Igenex test as well as a symptom list to my daughter's Pediatrician "duck"
Her response was that she heard those type of symptoms daily in other children 5 years old.
My response was that maybe that was normal for other 5 year olds (although I doubt that),
but these complaints were NOT normal for MY child.
Then I called my sister who also has a five year old.
I just wanted to check.....Her daughter does not complain daily of not feeling well,
Being nauseated, having an unproductive cough, joint pains, headaches,
Fatigue, pain in her feet, the sun "hurts" her eyes, her eyes hurt, etc.
Trust your gut instincts. I am very concerned about co-infections in both of my babies.
I actually think I dismissed a lot of symptoms in my children, as I couldn't get past my own.
Sad, but true.
Children who have been born with Lyme, may not know what it is to feel "normal".
I know that in my heart I had this feeling....
One that I am glad that I addressed as opposed to dismissing.
I would have been thrilled to have had my children tested and have their tests come back negative.
Trust your instincts. You know your child better than anyone else.
I thank God that I did.....even if it took some time for it all to sink in.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Geneal - I totally agree with you about trusting your instincts. I think that is much more important.
I wasn't trying to be negative, although my post may have come across like that. It was just that this list of symptoms had been bothering me and I couldn't figure out exactly why.
My children don't have symptoms that would fit into that list at all and appear to be 100% healthy. So I guess that's where instincts come into play also. I'm so thankful that our doctor didn't wait for a list of symptoms to be racked up before suggesting that we all be tested.
Posts: 101 | From USA | Registered: Apr 2007
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posted
I have had Lyme most my life and I did not have Iv abx when I was pregnant except with my third child and that was because my other two kids were in the NICU after birth with infections that no one could define. So the neo-natal doc suggested with my third that I have antibiotics while prenant to rule out anything.
Well, it worked and he wasn't in the NICU. And at that time noone saw a need for me to be on abx so I had three kids after that and didn't take the abx. Lets just say they were my uninformed years...but I think I'd call it my stupidity years.
What is scary is that I fully feel that all my children except for my third, has Lyme. I asked their doctor to test them and he refused.
He said they didn't have any symptoms of it and that the 2006 "redbook" states if there are no symptoms that there is no need for testing.
I protested and asked repeatedly and he still would not test.
I know what it is like having Chronic Lyme and I just don't want my children to have to go through what I went through and have been going through.
If you have a doc who will test, then test away. I would rather know and keep and eye out on the progression of my kids, then not know and wonder what is going to happen next.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Allison,
I am not sure how a MD can refuse to test your child/children.
I would definitely look to someone else to do the testing.
Maybe even a walk in clinic.
I had the same problem with getting a Western Blot....no one would run the darn test.
It is my insurance, my money and my health.
Why not run the test???
Personal agenda maybe....
I am not trying to be ugly in regards to your children's doctor, but I don't get it.
My experience with my children's (duck) pediatrician following Igenex test was quite the eye opener.
"Oh, good", she said, "the result is negative."
My reply was that while the test was negative by CDC standards, my daughter still exhibited Lyme specific bands.
I should have known when she walked in the room with a CDC handbook.
I had another neighbor go see a local duck for a Western Blot last week (told her Igenex, etc)
The duck rolled his eyes and said "you don't need that".
How does he know????!!!!!
I am sorry, but this makes me so mad....maybe because I went through the same thing
On my long journey to getting diagnosed.
I hope you find the answers you need for your children and yourself.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Years ago I was refused a lyme test. I didn't know any better and thought the doctor must know what he is talking about. Years of disability and suffering that might have been averted.
I'm sure I had lyme when my daughter was born. She has had symptoms off and on her whole life. At 29 she is very functional but gets colds/flu often, has allergies, has thyroid problems for the past 5 years, air hunger off and on and recently started having migraines. I'm very worried about what the future holds for her and possibly her children.
I just heard a radio interview with an LLMD that I trust and he said that children have a good chance of curing lyme but it is much harder in adults. I wish I could go back with the knowledge that I have now and have her tested/treated. As an adult, she does not want to consider lyme and thus will not be tested or consider treatment so if she has lyme, not only are the increased chances for a cure lost but she may wait a long time to get treatment thereby suffering for years like I did AND she may pass it on to her children or to a partner.
Also, if I knew for sure that I had lyme but my children were not displaying obvious symptoms, I'd still have them tested and maybe even try a abx probe. The reason is because some very respectable doctors think that lyme can be asymptomatic in some people. Those people can pass the infection on. Lyme may manifest in those who are asymptomatic as they age or if their immune system is down for some reason. Much easier to cure as a child so why wait? Might as well do it while you have control.
Just my thoughts.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I never knew....but continue to research Lyme in children.
Statistics say that close to or over 50% of all infected with Lyme disease are children.
That is scary.
I hope no one misinterprets my passion for this subject.
I still at times have real difficulty expressing myself the way I want to.
I have always been an advocator for those who can't really advocate for themselves.
I had no idea when I was diagnosed with Lyme, exactly what this would mean to my family and myself.
I think of the difficulties I had in having someone believe my symptoms.
I am guilty of not paying attention to some of my children's health complaints.
It was hard to see beyond my own health issues/symptoms/complaints.
Just yesterday, my 4 year old son, who I believe has congenital Lyme
Expressed that his left eye hurt and how he had a headache. It made him cry.
It makes me cry too. As I hold my children, I think if there were some way to suck that
Infection out of them and into me....I'd do it in a heartbeat second.
I think that Lyme in children is more often overlooked and misdiagnosed than in us adults.
Now that is a scary thought. Think of how many adults dismiss children's complaints.
I am guilty of that too.
Forgive my passion. We need to think of and remember the children.
They stand a good chance of cure....
That is what I pray for daily.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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MagicAcorn
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Member # 8786
posted
My little nut and I have lyme. I hate lyme, but if my little nut has to have it I am glad I have it too.
He gets the understanding he needs from me. If he doesn't feel good I know what is up.
He is the one thing in this life I had to fight for like my very life depended on it, and it did as I was pregnant when I found out I was sick. There were a few times I was scared for my life and his.
We both made it and I am not going to let anything stand in the way of our getting better.
My little nut has had sensory problems. His vision is poor and he has had surgeries for cholesteatomas twice by the age of nine.
Make sure if you think/know you have a congenital lymie and they have infections in the ears that do not clear that there is not a benign growth. They can go deaf and it can continue to grow into their face and brain.
My son also had a foot deformity. These are symptoms I didn't really see on the list Geneal but wanted others aware of from my own personal experience.
Good luck to all the mothers out there trying their best for there kids.
My son has been the greatest thing that has ever happened to me. He is my second and I waited a long time for his arrival and he has been more wonderful than I ever could have dreamed of.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Magic,
So many mothers, so many concerns....so much hope for our children.
They are the real reason I get up every day....push myself through and don't give up.
Thanks for the advice about the hearing.
I remembered your post on your little guy, but didn't realize he had Lyme too.
Your right. I am so glad I have this along with my children.
I just wish they didn't have it at all.
If wishes were dollar bills.....I'd be very rich by now.
Thanks for the good advice.
Will keep both you and your little nut in my prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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TerryK
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Member # 8552
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Geneal - please don't apologize for being passionate about the health of your children. I wish all parents felt the same way.
I could blame myself for my daughter probably having untreated infections but I don't. I didn't know and as soon as I knew, I have done everything in my power to help her understand the situation. You didn't know your children might have congenital lyme. Once you knew, you have done everything you can to help them. That is commendable.
acorn, I love your squirrels - so creative. Posts: 6286 | From Oregon | Registered: Jan 2006
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