Children - treatment and outcome

[nervousmummy]

Basically joined another forum and have been acres to death almost made to feel like life is not worth living .

 

Anyway I wondered if anyone would mind sharing lyme history of their children , the treatment they have received and progress made or outcome ?

 

Also if you and your children are living a relatively normal life

 

Thank you

[rowingmom]

Please check out this post, you have perhaps already seen it:

http://www.latitudes.org/forums/index.php?showtopic=19760

 

Our stories are usually long and varied, so you may not get too many responses to a request for histories - it just takes too long to compose. Please take a look back through the Lyme forum postings, and the PANDAS/PITAND/PANS one as well.

 

Many (but certainly not all) children have presented with autoimmune PANS symptoms long before they are diagnosed with lyme and coinfections. This happened for us, with DD11 reacting to both bacterial (strep) and viral infections with rages, frustration, ADHD, sensory difficulties, some OCD, motor/vocal ticcing, decreased motor abilities, urinary frequency, decreased executive function, social regression (all PANDAS symptoms) before her physical lyme/bartonella symptoms (fatigue, headaches, long bone and foot pain, night-time fevers, insomnia, cyclic IBS, dizziness, anxiety attacks, tingling hands and feet, hot/cold flashes) started at age 9.

 

After 2 years of treatment she no longer has these reactions, and her pain, fatigue and other symptoms have mostly resolved. She is functioning properly in school, has friends, enjoys celtic dancing, curling, girl guides, and has a B+/A average in grade 6.

 

When you are up and running with symptom descriptions, you will be much more confident in observing behaviours/symptoms in your son. If he is not showing symptoms, BE HAPPY! If he starts, get help from a LLMD, LLND or PANS/PANDAS specialist. Most mainstream physicians/psychologists will not be too helpful or understanding.

 

You can't change the fact that your son may have a lyme infection, but if you were treated while pregnant there is a possibility that he does not. Keep an eye open for lyme/pans symptoms, and stay informed. If he begins showing symptoms, you will be so far ahead of the game in just knowing where to seek help. So many of us have struggled for years to figure out our children's problems. You are his biggest advocate.

Edited March 22, 2013 by rowingmom

[SSS]

If I may offer some unsolicited advice:

 

Get off the forum that is scaring you to death-don't read it anymore- your baby has had a negative Igenex newborn test- you have educated yourself on what to possibly look for in the future as symptoms, and have an LLMD relationship already established for yourself.

 

I say this because I can relate- I have spent hours upon hours consumed at times on various yahoo forums, and the despair and pain would often really get to me-

but I would get hooked in-

as I personally have completed Lyme treatment, I removed myself from all of these forums - if I had felt I could have given back and helped, I might have stayed,

but really my suggestions were already known- and, I realized it was taking up too much of my time, and not in a positive way.

(ACN forum will always be my favorite, this one here is in a different category to me)

 

Anyway- and this may sound hokey- but I recently have been reading positive type affirmation sayings- instead of having the yahoo forum emails come through-

take care of yourself, I'm sure you are exhausted with a newborn- and with hormones and treatment--

do the best you can do to keep your baby healthy and nourished --- it's a gift, that little baby :-)

[Suzan]

HUGS! We live a "normal" life. My kids go to school, I go to work, we have fun, we have hard times. Just like everyone else. We just have different experiences due to the lyme. Maybe we've been lucky, I don't know, everyone is different in how they respond to lyme.

 

Anyway, I know I responded on your other post, but I thought I'd give you a brief history of what I can recall right now. These are their primary symptoms at various times of their lives.

 

dd#1 (now 11) - history of sensory processing disorder, gluten (and other food) intolerance, pandas (severe reaction to strep), emotionally explosive and unreasonable, anxiety, separation anxiety, chronic infections (sinus, ear, chest, strep), ODC, unusual and intense fears, hearing voices, seeing spots or flashes, floaters, unexplained pain and episodes of being unable to walk, joint pain

 

dd10 (now 10) - history of sensory processing disorder, gluten intolerance, pandas, seizures, impulsive, separation anxiety, chronic infections (ear, sinus, strep), Food ODC, fear of choking, fear of bugs and spiders, fatigue

 

I will say, all of these symptoms are much more managable or gone now after treatment. They were treated with zithromax, amoxicillin, flagyl and various other things for yeast and detox. We are still working on healing. It is a process and does take time. Regarding internet forums and support.... it's true, you can get freaked out and worried and good or bad information. I found that my internet support and information helped me tremendously. I could not have done all I've done without my internet support family. I was able to get sensory processing, pandas and lyme diagnosis for my children (and lyme and parsonage turner syndrome diagnosis for myself) through everything I've learned from my internet friends.

 

Susan

Edited March 24, 2013 by Suzan

[ksole]

We lead a "normal life" I have 2 children with lyme induced autism and I have an amazing newborn that will never be vaccinated in the hopes that it will not trigger and immune respons to congenital lyme as the vaccines did with my other children. I keep the immune systems up with probiotics and not all the junkfood, epsom salt baths, my son follows gf/cf and he attends aba and will attend kindergarden in the fall with the diagnosis of adhd at the most.

[nervousmummy]

Thanks for the replay guys ? Kole ... Did you treat throughout your pregnancy with your newborn

[ksole]

Thanks for the replay guys ? Kole ... Did you treat throughout your pregnancy with your newborn

no, I just took sodium selenite and probiotics, my daughter was born with sensory processing and had to have the vac on and was awake the moment it was off, no doctor believed me that she had an issue, and as I vaccinated the issues became worse. My new baby son seems to have some colic due to being a preemie (born 1 month early due to my blood pressure)but hopefully with the lessons I have learned and the information I have aquired I can help him in the event of an issue

[JuliaFaith]

S&S--wish there was a "Like" button on this forum.