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Treatment length/Symtoms in kids?

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Posted 3/7/2016 12:55 AM (GMT 0)
Any parents out there with kids with Lyme/Co-infections - how quickly are you seeing an impact once on ABX? It's been over three months now and the behavior, hyperactivity, outbursts, etc. are so cyclical. I feel like we just haven't seen any improvement. What kinds of symptoms are you seeing and how quickly are they disappearing? I'm so scared of pumping my DS with ABX for so long and not seeing results. Do we need to move to IV treatment? Has anyone been through this? 6 years old, probably has had Lyme for 3-4 years. I know it's supposed to be a marathon, not a sprint, but shouldn't we see some improvements?

Dr. is convinced it's Lyme due to a previous amazing shift we saw last fall when on ABX. Could it be autism? I'm still so unsure.
Posted 3/7/2016 1:22 AM (GMT 0)
There are members here with kids with lyme/co's.

Rowingmom - her daughter is now healed...and she did antibiotics first, but finished with herbal treatments.
She has posted on some threads recently - take a look at them...she may see this thread and offer some advice.
It's not unusual for it to take several months - especially with a longstanding infection like she has...but I think it would be beneficial for you to add herbs to her treatment.

Autism characteristics could be a symptom of lyme and co's.
Posted 3/8/2016 4:07 PM (GMT 0)
mommaonamission,

Hello! My daughter was born with Lyme and co. We discovered that I had Lyme when she was a little over a year old and then she started having seizures at about 15 months and we had her tested for Lyme. She was on ABX for about three year and is now doing great. ABX free for almost two years and seizure med free since December 2015. She is 6 now and a very happy normal and sweet child.
Going through the treatment and even before, she was a very fussy and angry baby and toddler. It took about a year or so to really see a difference because she was born with it and this was her "normal." We stuck with it and one day a switch just flipped and she was a different person. Very thoughtful, snuggly and loving.
We went the total ABX way with multi vit and pro-biotics. It was Amox, Zith and Mepron pretty much the whole time but in different combos. Then she took keppra for seizures.
I hope that this helps a bit. You can always email me. Every child is different but they are resilient.
Posted 3/8/2016 4:17 PM (GMT 0)
Please see my responses to "Lymecrazed" here:

www.healingwell.com/community/default.aspx?f=30&m=3596597

Three months is not a very long time. K was just recovering from her initial herxing from the introduction of antibiotics at that point. Because our LLMD didn't discuss detoxing at all, K actually ended up needing a wheelchair while we were on vacation during that period.

If your child has severe symptoms a coinfection is likely involved. Have they been tested for and are they being treated? behavioural/psych issues are frequently caused by bartonella.

K's PANS symptoms (which are very similar to those of ASD) included emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia and loss of executive function. These all resolved with treatment for her infections and as a result she has lost her original diagnoses of Asperger's, SPD, Tourette's and ADHD.
Posted 3/8/2016 10:10 PM (GMT 0)
We are new to Lyme as of November 2015. Our son, 14, has Lyme and coinfections and has been on antibiotics for 4 months and has pulsed them since late Dec. We are still seeing symptoms coming and going and his breathing has been worse as he is on minocycline daily for mycoplasma and malarone/artemisinin pulsing for babesia. They told us treatment is expected to last 15 months so I imagine it will be a few more months before things turn around. We can tell the treatments are working for now though and we try to encourage as much detoxing as we can fit in. We do use some herbs and I am working on figuring out what to use for collagen support right now and we'll add that in too.

Good luck! I've been thinking a lot about how much patience this takes lately as a parent. No instant gratification with this stuff, that's for sure!
Posted 3/10/2016 1:12 AM (GMT 0)
Thank you so much for all of your feedback! Amazing stories. It's kind of odd right now (or maybe not?...maybe someone can reassure me?) for about a week we have seen a total regression. Over time we have seen definite stretches of this kind of behavior, but not really this bad. It's about 3 weeks into adding zythro to already being on cefdinir and we are seeing some really wonky behavior including:

constant spitting sounds and other sound effects (could these be tics? it seems like he has no control at all)-he is doing this at school and it is constant!!, licking me, rage over nothing, lack of focus, spinning, and just overall SO unsettled. He has been tested for co's, but I don't believe any have shown up. I know some of the original ticks DNA showed Anaplasma, and I don't think they were tested for Bart. Sounds like Bart though? I think that's why he's on the zythro. It sounds like we should definitely add in an herbal protocol? I'm assuming these are all Herx reactions, but not sure? Does an herbal protocol, like Buhner's, help with the die off/Herx and bring him to a calmer state quicker or will herbs likely cause more Herx?

Oh, one more thing that is very alarming the past few days (but realizing it's been happening all along, just not so noticeable) is forgetfulness. W forgot how to turn on the shower this morning, and also forgot we were at the dentists yesterday. These are two pretty hard things to forget! When he can't remember something, he bursts out in anger.

This leads me to my next question - how on earth do you discipline a kid in this situation? The child pscyhologist we are seeing has had me be consistent and send him to Time Outs when he tries to hurt someone, and then shorter timeouts (first a warning) when he is rude. Right now he is rude/making annoying outbursts several times a half hour...he would always be in time out! I'm really struggling here because I feel like this is completely out of his control. How do I punish him? I'm okay with sending him to his room when he is violent, but when he does something like lick me or is just screaming for no reason, what do I do? Any ideas out there? What have you found to help? I want to let W know I'm here for him and understand, but I also don't want to be inconsistent or promote bad behavior. Thank you for any suggestions!
Posted 3/10/2016 3:10 AM (GMT 0)
Mommaonamission -

I've been reading some of your posts as of late but chose to remain just a "reader" due to my being new to the world of Lyme and that I use herbal, not antibiotic.

But I do have 21 years of experience as a parent - and a daughter who was diagnosed with celiac via endoscopy at two years of age, who currently is very symptomatic of Lyme and has Hashimoto's. So those experiences are what drive my reply to your post.

I practice my following words with my OWN health, but it especially holds true for my daughter's health to this day - - - if something isn't working, it is time for a CHANGE.

FIRST: If you aren't the type to take on the challenge yourself and try various techniques shared here in this forum (which I understand if you don't!!...I'm just mentioning one option because I always grab the reins and tackle health issues without doctors), then as a mom I would be making a 100mph sprint to another doctor for a second opinion. It sounds like the protocol you have been on is not working and your son (and you) are suffering for it. You had a glimpse of something working in the past...which is a clue you must hold onto as you continue searching for answers...but as I understand it now, that moment when everything got better has passed and not returned. Regardless, it is time for a change...new eyes viewing your son's ailments. It is unhealthy for everyone to keep going like this.

SECOND: Again, as a mom, I can only imagine how awful the behavioral issues are...but when physical illness causes behavioral issues, discipline and psychologists are of no value. Children can't express their symptoms and feelings like adults can...and read the ADULT stories on this forum of rage and uncontrolled outbursts due to these pathogens! Again, your clue is that your son's behaviors resolved for a short time....don't let go of that clue! He came back to you for a little while to let you know he was still in there....now take that information and run - try to help him get back to that state once more and remain there. Time outs and psychologists, in my opinion, are of very little value given what is going on with his PHYSICAL health - . You need to keep yourself safe and your son safe of course...but more than anything, it is time to get to the root cause of your son's health issues, find a treatment that helps, so no one suffers any further.

Again...just a mom trying to cheer lead another mom in need....time for a change mom, from one mom to another.....best of luck to you, your family and especially your son.........
Posted 3/14/2016 6:25 PM (GMT 0)
mommaonamission,

The discipline issue is a tough one. We have two kids without Lyme and one with. So the other two feel like our daughter having Lyme gets away with everything because we discipline differently for her. That is not the case but having to remember that a Lyme child can get over stimulated very easily and then it's a hard thing to come back from. One-on-one worked for her (of course boys are different as I have one) but taking time away from what ever she was doing. Kicking walls, hitting me, throwing toys... removing her from that area where something set her off and going into a neutral area like the laundry room, or back TV room even outside if the weather is nice. Just changing it up, read a book together and boys always need to be doing something with their hands so kinetic sand works for my daughter and son who is very hyper(no Lyme but very active.) I also had to be very careful to give warnings when we were changing activities like getting ready to leave the house. I could not just up and go like the other two kids would be fine with. It was like a warning that in 5 min we were going to be leaving, then 3 min warning... It's a slow process working with a child who has Lyme. I noticed anything outside put her in a better mood and we live in WA state where it rains a lot. But even a walk in the rain and some fresh air would calm her down. I feel for you. It's really hard.
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