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» LymeNet Flash » Questions and Discussion » Medical Questions » Parents- need help with article on children with TBD's

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Author Topic: Parents- need help with article on children with TBD's
Tincup
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Since everyone has been so helpful on the misdiagnosis post, I thought I would get started on the next article... children with Lyme and TBD's

Can you answer this for me please?

1, Sex and age of child- no names please

2. State where you live

3. What diagnosis was given, if any, prior to learning your child had Lyme disease?

4. What TBD's were they eventually diagnosed with?

THANK YOU!!!!!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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By responding to the questions, I will assume I have permission to use this information in an article. Again, no names will be used.

Thanks again!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sixgoofykids
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1, Sex and age of child- no names please

14 female

2. State where you live

OH, previously IN

3. What diagnosis was given, if any, prior to learning your child had Lyme disease?

low IQ (learning disabilities) Didn't qualify for IEP in small rural community in IN, but IEP was immediately suggested at new, large, suburban school with more resources.

4. What TBD's were they eventually diagnosed with?

Lyme Disease. Learning disabilities are pretty much resolved, still minor difficulties.

THANK YOU!!!!!

[Big Grin] [/QB][/QUOTE]

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Alv
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1, Sex and age of child- MALE /8 years old

2. State where you live/northeast usa /europe used too

3. What diagnosis was given, if any, prior to learning your child had Lyme disease?
hypoglucemia /high bilirubin /high jaundice sent back urgent in HOSPITAL back to Photo light machine in 3 days after was born/ear infections /sent to a surgeon for sore tonsils cronic problems /sore throght /persistant cough /bronchitis /GERD in /have heard anytime that had VERY HIGH FEVERES VIRUS VIRUS VIRUS associated with Vomiting and diarea /BREAK down in rashes around his thighs / any time was a shoot -induced high fevers for a week( never give them vacines shott -he will not get any as long as I will live) .Sensitive to breast feeding -special formula /colic baby .HAS BEEN SAID that the blood of parent was not compatible that is why the boy has JAUNDICE( they were so stupid -they have no clue what lyme was )

Now has been called as AUTISTIC -social problems socializing with kids.( even though IQ was high grades good so far ).Been 1 year in treatment as has improvement .

4. What TBD's were they eventually diagnosed with? born with Lyme /mucoplasma /bartonella but got reinfected several times in backyeard HIGH positive for babesia Microti -Northeastern strain not european , reinfected with tick enchephalitis -turned IN NEUROLYME .

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jkmom
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1. Female, 10
2. TX
3. Anxiety, Depression, Migraines, Intermittent Explosive Disorder, Psychosomatic, OCD
4. Lyme Disease

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bsigel
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1. Female 17, sick since 14

2. PA

3. Chronic Daily Headache, New persistent daily headache, status migrainosis, EBV, pituitary enlargement-but was told that is typical in teenage girls.

4. Lyme, bartonella and mycoplasma pneumonia

Posts: 41 | From Warfordsburg,PA | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
Geneal
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1. One girl age 5 at diagnosis.

One boy age 4 at diagnosis.

2. Live in Southeast Louisiana.

3. No diagnosis given other than Bacterial pneumonia (2 x in 10 days for daughter)

Slow to develop physically (son whom I was told not to compare him to his sister [shake] )

"Normal" complaints of children their ages of aches, pains, headaches, etc.

4. Daughter diagnosed with Lyme and babesia (thus far)

Son diagnosed with Lyme only thus far.

Hugs,

Geneal

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mikej2323
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1, Sex and age of child- no names please
Currently 14-years old- was 11-years old when symptoms first began.


2. State where you live
She lives in NW Iowa.


3. What diagnosis was given, if any, prior to learning your child had Lyme disease?

Possible cyst or tumor
Guillain-Barre' Syndrome
Multifocal Motor Neuropathy
Myasthenia Gravis
Mycotoxicosis
West Nile Virus
Motor Neuron Syndrome
Chiari Malformation/Syringomyelia


4. What TBD's were they eventually diagnosed with?

Borrelia: Clinically diagnosed by two MD's. Testing included Bowen's QRIBb; highest at 1:128. Positive for mycoplasma pneumoniae three times; twice by serology and once in CSF. Fry Labs showed positive for Bartonella spp. Two western blots indicate evidence of borrelia exposure, but not CDC-positive.

Currently, she is paralyzed, on a ventilator and unable to speak or swallow.


Mike
[email protected]

www.caringbridge.com/visit/angelsforalex

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ICEiam
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Female age 6

Nevada, previously Idaho and Oregon

Lots of "slight" ear infections, flu, picky eater, acid reflux, Fever of unknown origin, 5th disease, viral rash, low body temp at birth.....more just can't remember

Lyme, possibly Babs

--------------------
ICEY

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tad
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1. Sex and age of child-

Female - 6yrs (infected congentially)

Male - 4 yrs (infected congentially

2. State where you live

Out of Country (Singapore)

3. What diagnosis was given, if any, prior to learning your child had Lyme disease?

Chronic ear, sinus and tonsil infections. Chronic dry cough.

4. What TBD's were they eventually diagnosed with?
Lyme

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Mommy*of*3
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1. (Ages at time of diagnosis)
F - 8yo
F - 4 yo
M - 18 months

2. KS (8 yo lives part time in IA)


3. Children were/are asymptomatic (sp?). They have no symptoms and are ahead of schedule for all developmental and cognitive milestones. M-18 months has some food allergies. Children were tested because I was dx with lyme.

4. Lyme. 8-yo possible current infection. 4 yo and 18 mo - probably congenital.

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catskillmamala
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I will do each child separately

1. Girl, age 5, dx age 3.5
2. NY
3. Yeast infection
4. lyme/babeosis

1. Boy, age 8, dx age 5
2. NY
3. lyme dx immediate w/ migrans rash
4. lyme


Also, thanks to other responders. I notice quite a few kids with tonsil issues. My third child is scheduled for a tonsilectomy/adenoidectomy. He was breastfeeding when I was dx. He has an appointment with Dr. J in Sept, but we've been wondering if lyme could be responsible for the breathing issues.

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sometimesdilly
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1. boy
2. age 6 (as of Aug)
3. congenital Lyme; diagnosed at age (just turned)5
4. diagnosis by duck- no diagnosis. complete disbelief that anything was wrong, doc's hopkins ID friends assured him couldn't be Lyme in any case..
5. tested positive for Lyme; according to his treating LLMD, my son's recent total relapse a strong indication of a yet unknown co-infection.
6. we live in Maryland

dill

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Sojourner
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1. Female- currently 16 dx'd at 15 infected at 10/ Female currently 11 dx'd at 10 infected at 4.

2. Live now in Illinois, infected in Pa.

3. 16 yr old---Bi-Polar/Depression/Anxiety/OCD. 11 yr old--Kawasaki disease.

4. 16 yr old Lyme and Bart. 11 yr old-- Lyme.


Thanks Tinnie!

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lymemommy
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male, age 6 now, diagnosed at age 5, possibly infected at age 4

From: New Jersey

Dx prior to lyme: constipation (due to frequent potty accidents) strep throat, juvenile arthritis was consdered

Diagnosed, after 9 days of fever and over 20 em rashes, all over body, with very CDC positive lyme test. Clinical diagnosis of bart and possible babs.

Subsequent diagnosis: temporal lobe seizures

Thanks for asking!!
kp

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Tincup
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I have not read this post... and won't.... YET.

I am avoiding it for the moment because the adult post is so horrendous that I don't think my heart can take seeing children go through this stuff too.

BUT... I thank you all for posting.. and I WILL come back to it and use the information once I get the other article done and to the editor.

I KNOW this post is going to depress me.. so I don't want to drag it on and on... BUT... I will use it when I am able... probably next week.

PLEASE keep posting and ignore this big old sissy baby here who is hiding behind the curtain to keep her heart from breaking.

Thank you so much!!!

And I hope you understand. Some days you can look at this stuff... other days it eats you alive.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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up for more replies....

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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joysie
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1. 15 year old female

2. Maryland!

3. Lactose intolerance, Raynaud's Syndrome,"flu",
anemia, headache due to insufficient hydration,
seen multiple times for upset stomach, headache,
mild joint pain

4.Lyme

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dbourne
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2 year old girl

congenital lyme from tick bite on mother in CT

We live in Texas though

Diagnosed recently at age 2

Told she was lactose intolerant, ear infections, constipation, sinus infections, random unexplained fevers of over 105, slow to achieve physical milestones.

[ 20. June 2008, 09:23 AM: Message edited by: dbourne ]

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mikej2323
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Ooops,...not a parent...hope that's okay.

Congratulations on becoming a grandma!!!


Mike
[email protected]

www.caringbridge.com/visit/angelsforalex

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Tracy9
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1. 18 now, 13 at onset of illness, male
2. Connecticut
3. Initial Lyme dx was made, but chronic lyme dx was the hard one to get. After the 3 weeks of Amoxicillin, son was NEVER the same. Diagnoses given in the years to follow:

Depression
Sleep disorder/Poor sleep hygeine
Chronic Fatigue Syndrome
Drug Abuse (quickly ruled out with blood test)
ADD
Lack of exercise
Overanxious parents
School Avoidance

4. Chronic Lyme Disease, Babesiosis

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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njlymemom
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1. 3 daughters, now 18, 16, 13

all may have been born with this

2. NJ

3. oldest - ADD, depression

middle - caught earlier (but symptoms

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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njlymemom
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1. 3 daughters, now 18, 16, 13

all may have been born with this

2. NJ

3. oldest - ADD, depression

middle - caught earlier (but symptoms
mimiced CFS, MS)

youngest - migraines, checked for arthritis

4. Lyme, Bartonella, (youngest had Erlichiosis)

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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njlymemom
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Tincup, will you be posting the article when

it is finished? I am sure I am not the only

one that would love to read it.

Congrats on you splendid news!!!

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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Serenity
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1. age and sex. 17 year old female, 11 years old when bitten

2. State, live in NC, bitten in Connecticut

3. Diagnosis prior to Lyme: Drove back to NC and called pediatrician's office within 24 hours of finding the tick. Refused to see her, said to "watch the site". Within 8 days, she spiked fever of 104, headache, "out of body" feelings, mental confusion.
Brought child and tick (still alive!) to pediatrician two times in two days but were told symptoms were not related to the tick bite, "probably viral".

On day 11 classic bullseye thankfully emerged and she was given 2 weeks of doxy. Symptoms cleared up but came back within the month 10x stronger. Despite beginning aggressive antibiotic treatment within two months with the leading LLMDs in the south, our daughter's physical health and cognitive ability have never been the same. She's now on a 504 plan that covers excessive absences, fatigue, memory problems, etc.

4. CDC positive for Lyme, tested positive for Babesia, treated clinically for Bart symptoms.

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hopingandpraying
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1. Male, 15 yrs. old

2. IL

3. Costochondritis, viral, neural, psychosomatic ("it's all in his head")

4. Lyme disease, Babesiosis, and Bartonellosis

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sonwithlyme
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1, Sex and age of child-
Male Now 12-diagnosed at 8

2. State Pennsylvania

3. What diagnosis was given, if any, prior to learning your child had Lyme disease?
Was told he had the flu

4. What TBD's were they eventually diagnosed with?
Lyme Disease, Bartonella

--------------------
Robin
www.caringbridge.org/visit/dustineckert

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