Urgent advice on Mepron and children

[Guest guest]

I am beginning Mepron tonight for my 2 and 3 year old and am concerned

about possible side effects and about stopping the Amoxicillin at the

same time. They are both currently on Zithromax and Amoxicillin and

since the prescription to treat the babesia is for Mepron and

Zithromax I will stop the amoxicillin (though they did already have

their morning dose). Does it matter if they have the Amox in their

system from this morning?

Also, any side effects you've seen in young children? I don't want to

wait until Monday since most likely it will end up being Monday night

before the doc gets back to me and my little one is starting to have a

verbal tic since yesterday which concerns me.

They have both been on meds since Oct 20th for the Lyme.

Also...do side effects usually happen early on or might it be in a

week or two (I have plans to be out of town without the kids for three

days next weekend). My doc said she never sees side effects in kids

(except the occasional rash), but I thought I would put it out there

all the same.

Any advice would be appreciated.

Thanks,

Beth

beth@...

[Guest guest]

-Beth,

I wish I could help with some answers. My children are older and we

have just started antibiotics for chronic lyme and mepron is not one

of them. If you have concerns I would make sure you wait until you

talk more to your doctor. I know you want to get them started, but

unless someone else has had experience with this it is better to get

as much info as you can from the person that is treating them. I

tried looking up Mepron and the site I saw mentioned it was not

tested on pediatric patients. Your doctor must have a reason, and

they can better guide you. Hopefully another parent will address your

post. I wish you well.

-- In , Beth Freishtat <beth@...>

wrote:

>

>

> I am beginning Mepron tonight for my 2 and 3 year old and am

concerned

> about possible side effects and about stopping the Amoxicillin at

the

> same time. They are both currently on Zithromax and Amoxicillin

and

> since the prescription to treat the babesia is for Mepron and

> Zithromax I will stop the amoxicillin (though they did already

have

> their morning dose). Does it matter if they have the Amox in their

> system from this morning?

> Also, any side effects you've seen in young children? I don't want

to

> wait until Monday since most likely it will end up being Monday

night

> before the doc gets back to me and my little one is starting to

have a

> verbal tic since yesterday which concerns me.

> They have both been on meds since Oct 20th for the Lyme.

> Also...do side effects usually happen early on or might it be in a

> week or two (I have plans to be out of town without the kids for

three

> days next weekend). My doc said she never sees side effects in

kids

> (except the occasional rash), but I thought I would put it out

there

> all the same.

> Any advice would be appreciated.

> Thanks,

> Beth

> beth@...

>

[Guest guest]

hi Beth,

my daughter who is 6 has been on mepron since july 7th and been doing fine on

it.  She has been on zithromax for 3 years and also augmentin off and on.  My

doctor stopped the augmentin when we started her babesia treatment b/c he said

we needed to kill the babesia off in order to effectively treat the lyme.  I

have an appt w/ him today so I'm hoping he will say the babesia has been treated

and we can start the lyme treatment.  I'm not sure if your concern is with the

mepron side effects?? I don't think we had any.....though I don't know what

people's experiences are with herx effects and babesia??

michelle

>

>

> I am beginning Mepron tonight for my 2 and 3 year old and am

concerned

> about possible side effects and about stopping the Amoxicillin at

the

> same time. They are both currently on Zithromax and Amoxicillin

and

> since the prescription to treat the babesia is for Mepron and

> Zithromax I will stop the amoxicillin (though they did already

have

> their morning dose). Does it matter if they have the Amox in their

> system from this morning?

> Also, any side effects you've seen in young children? I don't want

to

> wait until Monday since most likely it will end up being Monday

night

> before the doc gets back to me and my little one is starting to

have a

> verbal tic since yesterday which concerns me.

> They have both been on meds since Oct 20th for the Lyme.

> Also...do side effects usually happen early on or might it be in a

> week or two (I have plans to be out of town without the kids for

three

> days next weekend). My doc said she never sees side effects in

kids

> (except the occasional rash), but I thought I would put it out

there

> all the same.

> Any advice would be appreciated.

> Thanks,

> Beth

> beth@...

>

[Guest guest]

Beth - our 3 children (7,6 and 3) all have Lyme, Babesia, Bartonella,

Ehrlichia and I haven't even gotten to the viruses yet... Our youngest tested

most

positive for all these infections including Babesia. It really is terrible

when we allow ourselves to think about it, isn't it. And the miracle is that

in the midst of this, they seem to retain the joyfulness of childhood

innocence with all they are coping with, isn't it something? At least our young

ones

have... In any case, we have been treated since Fall 2006, and I have had

my kids all on Mepron at various points, with Zithromax (they've also been on

Malarone and Artemisinin). There are Babesia herxes and if my memory serves

me right, there is one about 3-4 days after meds start and then later around

7-10 days and then they are more low-level but can still be there, rotating

every 4-5 days. With the kids what we saw was huge spike in fatigue, falling

apart at very small things, increase in bladder incidents (my one son lost

all bladder control which our 2 LLMDs are beginning to believe, while also a

Lyme symptom, has more to do with Babesia than Lyme), increased

redness/flushing, increased sweating, increased thirstiness, increased

emotionalism/clingyness/separation issues, with my older one- also headaches

(frontal and back of

head/pressure), and the most severe herxes also had pain in the hips and

lower back/tailbone - but this was my 7yr old who could express this. My now

3.75 yr old who was almost 3 at the time of his first Babesia herx had so much

pain in his hips he was dragging his leg around (we thought it was drop foot

but it was the inflammation and pain in his hips causing him to swing his leg

around to avoid the pain). Lastly, they also got cold/chills/shaking, and my

little one had a pneumonia like episode when he was freezing cold and shaking

(this was his first Babesia treatment and the herx was tremendous). The

good news is that they are all greatly improved, but it has taken some cycling

through dift antibiotics and we have had to come back to Babesia (most

recently) as other infection loads were diminished. Hope this helps! Also, if

you

are in PA, let me know b/c I've started an activist group that has many

parents in it with kids like ours and am looking for as many as we can to make

progress here. Good luck! -

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

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[Guest guest]

-

thanks for sharing your story with Beth - her and her family needs lots of

prayers right now -

I would love to start something like you have started - I am in Wisconsin and I

do not know of anything like that here - I might be wrong but I need something

like that so why not start one

thanks -

Diane  dkbmama@...

________________________________

From: " juliafwagner@... " <juliafwagner@...>

Sent: Wednesday, December 3, 2008 1:57:43 PM

Subject: [ ] Re: Urgent advice on Mepron and children

Beth - our 3 children (7,6 and 3) all have Lyme, Babesia, Bartonella,

Ehrlichia and I haven't even gotten to the viruses yet... Our youngest tested

most

positive for all these infections including Babesia. It really is terrible

when we allow ourselves to think about it, isn't it. And the miracle is that

in the midst of this, they seem to retain the joyfulness of childhood

innocence with all they are coping with, isn't it something? At least our young

ones

have... In any case, we have been treated since Fall 2006, and I have had

my kids all on Mepron at various points, with Zithromax (they've also been on

Malarone and Artemisinin) . There are Babesia herxes and if my memory serves

me right, there is one about 3-4 days after meds start and then later around

7-10 days and then they are more low-level but can still be there, rotating

every 4-5 days. With the kids what we saw was huge spike in fatigue, falling

apart at very small things, increase in bladder incidents (my one son lost

all bladder control which our 2 LLMDs are beginning to believe, while also a

Lyme symptom, has more to do with Babesia than Lyme), increased

redness/flushing, increased sweating, increased thirstiness, increased

emotionalism/ clingyness/ separation issues, with my older one- also headaches

(frontal and back of

head/pressure) , and the most severe herxes also had pain in the hips and

lower back/tailbone - but this was my 7yr old who could express this. My now

3.75 yr old who was almost 3 at the time of his first Babesia herx had so much

pain in his hips he was dragging his leg around (we thought it was drop foot

but it was the inflammation and pain in his hips causing him to swing his leg

around to avoid the pain). Lastly, they also got cold/chills/ shaking, and my

little one had a pneumonia like episode when he was freezing cold and shaking

(this was his first Babesia treatment and the herx was tremendous). The

good news is that they are all greatly improved, but it has taken some cycling

through dift antibiotics and we have had to come back to Babesia (most

recently) as other infection loads were diminished. Hope this helps! Also, if

you

are in PA, let me know b/c I've started an activist group that has many

parents in it with kids like ours and am looking for as many as we can to make

progress here. Good luck! -

************ **Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)

[Guest guest]

Hello,

Here are my thougths on Mepron and Zith.

I have anecdotal information- rather than professional. 

 

It is always best to get the medical rationale from you doc. but I also think it

helpful to obtain info. from others who have treated their own kids. 

 

We have made some mistakes and if they could have been avoided by having the

right info. my daughter might be feeling much better now.

 

My daughter started Mepron for one month after taking Artemisinen for Babesia

with some progress.  She then fell quite ill and this was from the Babesia not

being fully eradicated due to insufficient treatment (not long enough).  She

began the Mepron with the Zith. and has been on both for 4 months.  She is also

taking other antibiotics for the Lyme and so far, outside of stomach aches she

is tolerating the medicines.  Further, she has Gilberts syndrome which makes her

liver less able to process medicines and etc...

 

I wanted to keep her off the Mepron because it seemed so strong for such a

little body and I hadn't found a lot of info. on giving it to kids.  I was very

happy to stop her treatment with it and now regret that decision.

 

She does show signs of neurological involvement and I know how frightening

that can be. From what I understand as one co-infection is treated another will

become stronger.  So as the Babesia is addressed then for my daughter the

Bartonella is strengethened (which causes neurological problems).  The same can

be true for the Lyme.  Set-backs in one area can mean that there is progress in

another one.

 

I took Mepron and am now on Mallarone.  I was doing better on the Mepron/ Zith

combo. but my treatment for that was insufficient as well. I will go back on the

two as soon as I get the o.k. from my doc. 

The Babesia has really made me and my little one sick,  perhaps more than the

Lyme and it has been difficult to cure.

Once you start the medicine keep with it for as long as it takes to erradicate

the bugs (in our case this will be at least six months).

 

In fact when the Babesia returns it returns in a big way.  At one one point we

did not have the Zith. available so my daughter was only taking the Mepron for

two weeks.  That was a disaster because the Mepron lost its effectiveness

and the Babesia started to build up resistance to it.  My girl again fell very

ill and we started up the Zith again and now she is showing improvement.

Hopefully, you have already spoken to your doctor but I want to give you some

encouragement that the Mepron (even though it is very weird) works well if it is

tolerated and my daughter seems to be tolerating her treatment well. In fact,

she seems to be about 40% better than she was before she started her course of

Mepron and Zith this last round.

It is difficult but I take her to get her blood tested often to make sure her

liver is functioning well.

 

And one more thing.  I had thought that my daughters arthritis was from the Lyme

and could not figure out why it was not getting better, only worse.  I found out

from my doc. that the Babesia is a likely cause of her joint swelling.  Since

taking the Mepron she no longer limps and is in half as much pain. She can run

and ride horses now which she could no longer do once she started showing Lyme

signs. I also read an article that stated it important that the arthritis is

addressed slowly to avoid gall and kidney stones.  I don't know why this is

so but this makes intuitive sense. 

 

It must be hard to make these decisions with such small children but know that

whatever decision you make you are making the best one that you can at the time.

Good Luck to you and your family!

Deanna