sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
moms with Lyme themselves and Lymed kids-
1 .do children herx in the same way/as strongly as adults?
2. how did you explain herxing to them ahead of time so they weren't freaked when it happened (my son is just 5).
3. anyone know of any ACTIVE boards/discussion groups just for parents with Lyme kids? i know of just one yahoo group, and last i looked awhile ago it did not seem to be very active.
we're in for a long haul apparently, and i'll need all the insights and shared experience i can find.
thanks so mich for any assistance.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Beverly
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My son herxed the same way as me, whatever his Lyme symptoms were they intensified just as mine did.
The only difference is he is getting much better faster than me. That is due to Dr. Jones.
My son was about 5, for him he was so sick at the time, the herxing part didn't make that much difference he was already in alot pain. He went through hell for a little guy and finally after treating for Babs, he stopped getting the horrible headaches, and he is doing better today.
Sometimes I think it's almost harder for the parents to watch them suffer and to keep giving them the pills, you have to be strong.
Try to focus on the end result, your child WILL get better.
Hang in there...
[ 06. September 2007, 09:30 PM: Message edited by: Beverly ]
Posts: 6639 | From Michigan | Registered: Jun 2001
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sometimesdilly
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posted
thanks for the info, Beverly.
i'm glad you were able to have dr. j in your corner; i'm sure that made a huge difference along the way. we've placed 100% trust him.
our DS's symptoms are almost entirely CNS/neurological. from what you say-- herxes intensified existing symptoms--it sounds like he may have major behavioral changes. (?)
anyone else? what do you wish you knew before you began tx for your child?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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CaliforniaLyme
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posted
My daughter didn't Herx with Cedax- she just improved completely and quickly- it was AMAZING!
She DID Herx with Mepron and Zithromax and ZIthromax and amoxicillin-
she had terrible knee pains and got very light sensitive- so gave her sunglasses, stayed in a lot when she was light sensitive, and I hate to say it, but although I never took any pain meds we gave her childrens Tylenol almost daily because her knees were so painful- it was just awful hearing her hurt- and they were red- and swollen- she started out autistic in presentation but then was left with just arthritis and arthalgia and other physical symptoms- the weird autism stuff was gone with Cedax in a few weeks NEVER to return!!!!!!!!!!! THANK GOD THANK GOD. SHe scared the heck out of me frankly. Every day for a while.
She owuld stare face down at the carpet lint with open eyes utterly silently- and STILL- frozen arms and legs- like she was playing dead but with open eyes- for 3-4 HOURS at 18 months old!!!!!!!!!!!!!!!!!!! If I tried to get her to talk the ONLY thing she would say, no, not kidding, sometimes all day, was "It hurts, Mama, it hurts."
ANd she head banged and said same thing, "Mama, it hurts, it hurts."
WHen she was Two and having REALLY bad pain one day, she had been complaining all day- she would get really pinchy and quiet- this was after she was back to herself- not autistic like anymore- but herself again- she asked me, very quietly,
"Mama, it hurts SO much- am I going to die?"
AT TWO YEARS OLD.
I felt like killing MYSEFL when she said that, just pierced me, "NO SWEETIE, nOT NOW, we all die, but you're going to have a wonderful life with NO PAIN and grow old and have years and years of JOY." blah blah- frantic- I will never forget that small, miserable voice-
She was already talking in complete setneces at 1 when she got sick- had vocabulary of 60 somethign words... first spoke at 9& 1/2 months, no, not kidding, "Give it back!" when I took sponge from her in bathtub. THEN Mama.
I was same way, am genius level IQ btw(me), began speaking very precociously in full sentences- so did my father when he was a baby. When she got sick she went from speaking in complete sentences to utter silence except the occasional, "Mama, it hurts, it hurts."
Oh- and "Ouchie tummy Mama Ouchie tummy!" when she went to the bathroom because when she got sick just like me and our old cat her intestinal system went to heck-
ANYWAY-
She's been fine for over 6 years. Nada.
Well, a couple weeks a summer or so ago when she complained of joint pain and had slight fever but we assumed was childhood virus because mentally & behaviorally she was normal... and it went away-
But for 6 years+- fine*)!!!!!!!!!!!!!!!!!!!!!!!!
She stills sees a pediatric cardiologist because she got MVP (((from the Babs I think because it improved and is almost normal after Mepron-)) but still goes just to make sure it's okay every 2 years- gets a cardiac ultrasound- it had not been there at birth because at birth she had loud murmur and they had checked out her heart at birth and once in first year and was normal both times!!!
ANYWAY, YES she Herxed with zithro and Mepron- she had a LOT of joint pain
It is funny though-
The joint pain- oh it SUCKED watching her in pain- she would just get SO quiet-
but I didn't mind it NEXT to the mental thing-
I UNDERSTAND CHANGELINGS
I undertsand why they used to throw babies into fires thinking they had been SWITCHED- one day she was herself- then a little crabby- crabby- bowels changed- and then- where was she? She was this totally different little girl, silent and withdrawn and alien to me-
and then she ame back-
after she started on Cedax-
She came up to me one day, said, HAPPILY,
"Mama, I can remember my ABCs again!!!!!!" and she sang them to me straight through- she had known them at 14 months but at 18 months could NOT sing them nor count and she had alreay counted to 20!!!!!!!!!!!!!!!!!!! and BING BING BING
Just like that, SHE was back- my baby!!!!!!!!!!!!!
ANyway, so yes, she Herxed and it was hideous watching her in pain but it was HER and at that point we were just so glad to have HER back!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
but pre-Cedax too- she had lost ALL affect- she was FLAT- like a little ZOMBIE- NO happiness- no curiosity- NOTHING- just this terrible emptiness- blankness-
a TODDLER!!!!! like a little robot!!!! and stopped eating- and GROWING- just FLAT-
and the only answer- PAIN
"It hurts, Mama- it hurts."
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Geneal
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posted
I do find my children complained initially of not feeling good when started on zithromax.
However, I found their behavior the most telling.
I also have a 5 yr old and a 4 year old.
They have turned in to screaming demons.
Exhibited anger for no reason. Crying for no apparent reason.
Very erratic emotionally.
I had to really grit my teeth (still do) and not let their Lyme "rage" push me into mine.
They are doing better with it now, but it was very intense in the beginning.
They have been treating for 3 months now, and a definite decrease in symptoms and
Complaints have been noted.
Hang in there. Don't forget the probiotics also for children.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
Sarah- i'm sending you a PM later tonight.. thanks so much for sharing your DD's response to tx. how long was she on abx?
Geneal- you obviously love your kids enormously and have a great deal of self control, to EVER be able to not let their Lyme rages ignite yours.
and i imagine that is just one of the challenges of parenting a Lymed kid as a Lymed parent.
How much do your kids understand how Lyme is affecting them? can they make the connection between being sick with Lyme and having sudden uncontrollable changes in their behavior?
i'm thinking herxing would scare kids. is there anything you said or did that helped prepare them?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Beverly
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posted
Your very welcome.
Yes, he had major behavioral changes, he had rages, he broke things, threw stuff across the room, it was hard to watch.
I'm glad your child is seeing Dr. Jones.
Hugss to all the Mohters and kids..hang in there... Posts: 6639 | From Michigan | Registered: Jun 2001
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Cobweb
Unregistered
posted
Dr. J should be a great resource for this topic too, since I'm sure he has seen it all.
sometimesdilly
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Member # 9982
posted
carol-
yes, we saw him yesterday.
we had a long time with him, but most of that was taken up with an extremely thorough physical examination- thank God, because he saw physical defects our good ped has never caught-- and a meticulous gathering of background clinical info.
at the end we were caught off-guard and a bit stunned by a dimmer prognosis than we had expected, and preoccupied by our DS's complete freakout at having blood drawn- it took 5 adults to hold him still enough, including the incredible dr. j.
we didn't have the presence of mind to ask some fairly obvious questions, including this one.
dilly
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Geneal
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posted
Dear Dilly,
I have to admit I am not always so good at not letting my children's Lyme rages get to me.
I take a little time out away from my children, usually a couple of minutes in another room.
I don't explain their behavior away with Lyme.
I try to ask the children why they are so angry and try to give them alternative
Methods of dealing with that. Sometimes it works. Sometimes it doesn't.
The herxing from the zith wasn't so bad.
It is the other things, like the fact that my daughter just started kindergarten
Two weeks ago. Woke up Tues. morning with some viral infection.
She seems to catch everything and I know most of it is viral as she is on zithromax.
She doesn't understand why she get sick so much.
Best part is she usually passes these lovely virus' to me .
I did tell my children that they may feel a little bit worse for a few days.
I certainly did not expect the explosive behavioral issues.
Seeing your daughter just cry and cry for no reason.
I feel like that often too, I just don't give in to it as it upsets my children too much.
Hang in there.
Sending you and your family positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
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Geneal-
your posts always seem to me the essence of balance and fair-mindedness; you seem awesomely well grounded. your children are fortunate to have you.
yes, the balancing act between having empathy for your child's herx and yet still holding firm to boundaries seems close to impossible. i'm hoping it is one of those parenting things we surprise ourselves being able to do when the situation demands that we get it right.
i meant to write something different but the thought is long gone.
thanks for the prayers. i hope both your children continue to do better-- please feel free to PM me anytime.
dilly Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Cobweb
Unregistered
posted
[QUOTE]Originally posted by sometimesdilly: carol-
we didn't have the presence of mind to ask some fairly obvious questions, including this one.
dilly [/QUOTE
I have learned from experience-especially as a lymie- whenever I have a question I write it down in my lyme log book. Sometimes I even remember to look at it when I'm in the office.
Sounds like you are in for quite a ride. If it's any help, when I attended the rally in Connecticut, the children who spoke up on Dr. J's behalf were awesome-and so grateful to be on the road to recovery.
So just remember-when going through he!!-keep moving. And it sounds like you are moving in the right direction.
Just saw this thread. My daughter herxes really badly, she like other kids does not understand why she feels the way she does. We explain everything in terms she can grasp but often I cannot fully grasp why I feel horrible with this disease.
One thing we that helps my dtr is her giant microbe. It was posted here on this site as a cute plush doll , I ordered one. When she is really having a bad day she will grab it (light green plush toy-kind of a spiral worm--supposed to by lyme) and shake it and say, "why are you making me so sick" or "stop making me sick". It gives her something tangible that represents lyme-she's 9 so she does understand that the toy is not what is making her sick but it helps her realize that it is not her fault that she feels so terrible, it is an outside force acting upon her.
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
sharp-
that is a great idea! i'm definitely going to use it- thanks you so much.
ps- before we knew he had Lyme and had ever dicussed it with him my son took to calling Lyme a bully.
latest was- "mommy, a bully took my memory away"
kids are so wise. thnaks again.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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