DD (6) has been on zith and omnicef since June (started zith in June, cef in July)
She has congenital lyme....has always had lyme rage type behaviors though I didn't know that is what they were.
She did really well through the summer on the meds. No real tantrums to speak of and only minimal herx type behaviors. Much better than I expected.
Now school and soccer have started (I know many of you have chidlren who cannot even play sports....I am sorry for bringing this up)
She has had HUGE tantrums (4 hours on Friday, major tantrums sat sun and just now) involving biting, hitting kicking, spitting, name calling screaming...you may know the drill
Can she herx after 2 to 3 months????? She keeps complaining of stomach and headache but she I don't think she truly has them....she just says she doesn't want to go to school.
I kept her out 1 day last week (she was fine at home, not sick at all, eating, wanting to play), then the next day the school called and said she had a stomachache and headache. I picked her up and she skipped out of school and was fine.
What I am trying to say is that I don't think she is physically herxing, maybe mentally?
Thanks for your help
Posted by Lymetoo (Member # 743) on :
You can herx at any time on any med. And yes, you can herx mentally. Is she on any new supps that may have increased the activity of the abx?
Posted by pme (Member # 31621) on :
No new meds.
But activity in general has increased (when I started she was on summer break, so I did that on purpose), now soccer and school have started.
Wondering if it is too much?
Posted by momintexas (Member # 23391) on :
Sometimes just being exposed to other sick kids in school can be enough to set off a "flare" in kids.
Have you ever tried epsom salt baths? Maybe she needs to detox more. Activated charcoal helps too.
Regular epsom salt baths have a calming effect on my son as well as being good for detoxing.
Does your daughter have any co-infections?
I have even seen a loose tooth cause a flare.
Unfortunately, there may be many things setting her off. Herxing can occur at any time. Keeping a calendar of her symptoms may help you to see a pattern.
Once you see that pattern, it may help to identify what else may be looming in the background.
Hang in there....I know how hard it is.
Came back to add that exercise can stir things up too.
Posted by surprise (Member # 34987) on :
Are you giving a lot of good quality probiotics? Watching out for yeast? Bowels moving regularly and normal?
When she 'flairs' like this, any way to pull her out when it starts- distraction, hugging tightly and soothing...
I try not to write too much about my own dd (7) we have been through a lot, and she has made significant gains,
but holding it all together all day at school can lead to breaking down at home.
Gut health is huge as well.
Posted by Lymetoo (Member # 743) on :
Maybe she has a flair for flaring??
I was also going to suggest a journal. It would be good to know if she is on her 3-5 wk herx cycle right now.
Posted by surprise (Member # 34987) on :
Did I spell flair/flare wrong?
No 'surprise' ;-)
Posted by Lymetoo (Member # 743) on :
LOL!! Yeah, it's "flare."
I hope I didn't offend you! I thought I'd set the record straight since we had two spellings here.
It's the teacher in me. It never stops. Posted by Lymetoo (Member # 743) on :
Maybe the exercise is helping move the abx into her cells a bit more efficiently.
Wobenzym and other systemic enzymes can do the same thing.
Posted by FamilyFive (Member # 37206) on :
So I realize herxing can be very different than other phases of childhood behavior, but have you thought about taking her to a therapist? If dietary and supplement changes fail to help, you may want to consider it.
Also, now that she's back to school and soccer she may need A LOT more sleep. That has a considerable effect on both myself and my daughter. An extra half hour isn't near enough.
My daughter is very "spirited" and went through severe anxiety and OCD last year. Once the panic overtook her she couldn't control herself. She was like a different child.
I was so regretful we didn't go to a therapist sooner. The therapist turned life around for my daughter. Therapy, a good diet, lots of sleep, and tons of water.
Posted by ktkdommer (Member # 29020) on :
My youngest son is well enough to play soccer but it is taking a lot out of him. He is only playing on a house league. The stress to the body is too much too soon. He so wants to be normal.
I think our kids experience stress so differently. I remember my son going on a sleepover and then he would be sick for 2 days. A full week of school used to do him in. Socially trying to fit back in after an extended absence was stressful, too. I used to think doing too much lowered his immune system also.
His raging days are behind him thankfully. He and I have to pace ourselves or things come creeping back.
I hope your daughter gets better.
Posted by NEMOM (Member # 31370) on :
Some of the kids with lyme can pick up a strep infection that they can't get rid of and it can cause the symptoms you are describing. I think Surprise mentioned it in your other post-PANDAS/PANS.
Catching the strep infection and PANDAS was what lead us to the lyme disease dx.
My dd did NOT have a sore throat with her strep. She complained of a daily headache and stomach ache. As time progressed she had OCD, severe anxiety and raging attacks. Getting the strep under control really helped us to get a handle on the attacks. She was also 6 at the time.
We went through days of thinking our dd was just trying to get out of school before we knew better because she also would seem "fine" at home. LIttle did we know how sick she really was. I don't believe now that kids that age fake it. They may appear happy and healthy at home but I think that is just because their anxiety level goes down and they can relax at home.
Have you had her ASO titers and AntiDNase levels checked?
[ 09-24-2012, 10:44 PM: Message edited by: NEMOM ]
Posted by Lymetoo (Member # 743) on :
NEMOM... Just wondering... Did your daughter take steroids then??
Did she make progress while being treated for PANS?
[ 09-24-2012, 10:34 PM: Message edited by: Lymetoo ]
Posted by surprise (Member # 34987) on :
Same thing here: PANDAS/ PANS treatments that did not hold or 'work'
led me to give her a Lyme test, on a whim, thinking no way Lyme sounds so far out there. I found a labcorp WB online without Dr. signature required,
came back band 23 positive, on to Igenex, and,
here we both are. Thankfully, word is out to check for Lyme possibility with PANDAS. We would have never found it if not for the Moms who walked before us, sharing their experience.
My dd only did a 4 day steroid burst (made things worse) and had a low dose steroid after IVIG to help ward off side effects.
P.S. Tutu- no offense! Must be why you write so well :-)
Posted by Lymetoo (Member # 743) on :
Well... it could have been worse!! I'm glad you found out "early."
I also was given steroids a long time ago and survived. That was before I was diagnosed with Lyme.
surprise.. I make plenty of mistakes. I try to catch them, but as I AGE it gets worse and worse!! Posted by NEMOM (Member # 31370) on :
Wow I can tell my lyme is in full swing with all the typing/spelling errors in my last post! LOL
Lymetoo-DD does not take steriods. Her Dad has a history of not tolerating steriods well and we discovered at a very young age that she had the same issues. Silly Dr gave me a RX for Flonase today for her and there is no way I am even going to let her use that.
I fully believe that her PANS is in remission now. Her strep titers are still elevated in the 400's but this is down from 1200. She hasn't had any strep infections for two years and had her tonsils removed last year. She does receive monthly IVIg which I feel played a big part in her healing.
She does still have raging attacks but I feel we are dealing more with Bartonella than PANS. The attacks are similar to PANS but different. Hard to describe unless you have witnessed both. The attacks now are short lived and can usually be traced back to a recent trigger. PANS went on for months.
Posted by Lymetoo (Member # 743) on :
OH.. I thought steroids were a part of the IVIG.
Glad she is progressing!
Posted by Garden (Member # 31671) on :
PME -
I think at least one component may be the adjustment to being back in school. I know many, many kids have a hard time transitioning from K to 1st grade, for example, since the expectations are higher and the day is so much more academic.
To say nothing of the transition from summer to school.
My older one has had a hard time with the transition - and she loves school and structure. I think the change from the freedom of summer to school + activities + homework has been a shock to her system. She has soooo much less down time, and she is one who really needs her down time.
I do let her watch tv for down time in the afternoons, but I know I need to be more thoughtful in providing her a sensory-rich downtime experience - she probably needs a crashpad, etc, to help calm her nerves after school - she does so well while she's there. but I'm her "safe place", so she really unloads on me when she gets home.
Remember how Burrascano technically wants us all to nap in the afternoons? But I'm sure little kids especially need extra rest and extra downtime. Today's school environment makes that pretty tough.
I mean, today my poor kid has nothing after school, so hopefully she can make it through her entire week's math packet + a spelling assignment, and if we're lucky, also her 15 minutes of writing, since she has rehearsal tomorrow night. No wonder she's a cranky crankmonster.
Posted by pme (Member # 31621) on :
Thank you all for your thoughtful responses...typos and all...they are appreciated!
I love the idea of epsom salt bath. I hadn't thought of it.
I have a biomat that I got to help raise my body temp (its the mini, so perfect size for a little one). She has been laying on it at night and it calms and soothes her.
She actually woke up this morning asking to go to bed early tonight (this is my little non sleeper). I think that is telling.
I agree part of this is definitely transition Garden. And tonight we do not have any activities (minus having to pick my middle schooler up from soccer practice) so she will have down time.
I am looking forward to it as well.
I really don't know anything about Pans/pandas at all.
I totally believe that she has Bart based on her herx/rash at the beginning of therapy. I just don't want to be treating her needlessly and am so confused at this point (of course because of my own brain fog!)
Thank you again
PS LLMD thinks herx or Bart surge because of Lyme treatment.
Posted by bejoy (Member # 11129) on :
In my experience, Lyme rage is related to high ammonia in the brain. Ammonia is a neurotoxin of Lyme die-off.
Lyme die-off in the brain or throughout the body raises ammonia levels and causes intense neurological irritation and rage behaviors.
BH4 Tetrahydrobiopterin is the chemical the body uses to remove ammonia. It is also a chemical necessary for serotonin production.
The body gives priority to ammonia removal over serotonin production, therefore, high ammonia results in low serotonin and tearful depression/anxiety.
The best treatment I have seen for high ammonia is a BH4 Biopterin supplement.
The pharmaceutical product is sold only for Phenylketonurea. It is unlikely you will find a doctor to prescribe Biopterin without a PKU diagnosis.
Only one supplement company has retained the right to sell BH4 due to big pharma control. Any licensed health professional, including a nurse or chiropractor, can order this product from the supplier, but it can't be bought OTC.
This product is also considered in the autism community to be very effective in the treatment of autism. In my experience, autism is often related to high ammonia as well, from any
number of inducements, including Lyme, parasites, low enzyme production disabling digestion of proteins, and other conditions that may raise ammonia levels.
Posted by tick battler (Member # 21113) on :
![[Wink]](wink.gif)
![[Cool]](cool.gif)
I thought I'd set the record straight since we had two spellings here.![[Big Grin]](biggrin.gif)
![[Roll Eyes]](rolleyes.gif)
But I'm sure little kids especially need extra rest and extra downtime. Today's school environment makes that pretty tough.