Re: Aggression-Behavior Meds

[Guest guest]

This is such a sore area for my son. We battled this for so long, ups and

downs, of course

before we knew he had Lyme.

Anyway, we tried it all, and yes the meds give you a brief break, and sometimes

that is needed to keep everyone safe and calm. And sometimes just a good nights

sleep.

I don't want to write a novel about our life of hell, but briefly what I have

seen.

It wasn't until I saw how badly strep ( PANDA's) was affecting my son's over all

well being, did I totally understand this. I am just sick to my stomach

thinking what all we put him thru. It took seeing how much better he acted on

antibx's to see the sweet soul. But still he cannot stay on high doses of

antibx's so its tonsil surge this month for him. I dread it, but I have to

believe that this is what is going to help him improve a lot more.

If you have to use meds, keep pushing thru with the other treatments as well, so

that someday you don't have to keep your child on the medications that can have

side effects long term. I felt so alone struggling with my son, and it felt like

an endless journey to no where. At least you all know that there is hope and

your not alone!

Wishing much improvement for all the children suffering, and

relief for you parents who have to decide what needs to be used each day.

Allie

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> > > Kim

> > > I know some people will hate me for saying this but you may have to

consider a stronger med until you can get to the bottom of her immune problems

as a stopgap measure so you can reduce the suffering of your family and child

who are in crisis. Trust me I have been there with what you are describing. It

will take time to restore her immune and behavioral health and you need to buy

some time.

> > > Best wishes

> > > Sara

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[Guest guest]

Hi Fransel,

I don't know yet if my daughter has Lyme. My doc has just ordered testing for

Lyme and we are awaiting results from Igenix. My daughter has PANDAS. Chronic

Lyme and PANDAS as well as Autism are autoimmune disorders meaning there is

overlap in the mechanics of a dysregulated immune system and overlap in

symptoms for our children. These children can have comorbidities because their

immune systems aren't working properly. My daughter is 13. At 10, it got so

bad for so long and no medical doctors here knew how to help us despite going

from doctor to doctor and specialists. We did not know what we know now. We

were in crisis like the kind you describe for most of each day for six months.

And people may hate me for saying this, but it became so dangerous and so

critical that we had to hospitalize her out of desperation and concern for her

safety and our other child's safety. At that point they put her on Effexor,

Abilify and Klonopin. We then got her out and she was a zombie. It (the

hospitalization) was a terrible experience. I would not wish that for you or

any other family. When she got home after 3 1/2 months in the hospital we found

a very good DAN doctor. I was either going to go outside of mainstream medicine

or have to institutionalize her. She was almost 11 at the time. I have been

doing a very wide array of things to work on her immune system imbalance and her

behavior and cognition is sooo much better. She is functioning, and calm and

doing very well. She however, still has the core features of autism as listed

in DSM 1V (communication deficits, lack of imaginative play, etc. etc). We

have her off of all the psychotropics with the exception of Abilfy, and we are

down to just 1 mg of Abilify/day which I have weaned very very slowly over the

last couple of years while doing all the other therapies. This is a full time

job. As I said, it takes a long time to rebalance the immune system. And we

are not out of the woods in terms of dropping her diagnosis, and could be at

this for quite some time. We have yet to do antivirals and that is probably my

next step, depending on test results and my next apt with my doc.

Sara

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> > >

> > > Kim

> > > I know some people will hate me for saying this but you may have to

consider a stronger med until you can get to the bottom of her immune problems

as a stopgap measure so you can reduce the suffering of your family and child

who are in crisis. Trust me I have been there with what you are describing. It

will take time to restore her immune and behavioral health and you need to buy

some time.

> > > Best wishes

> > > Sara

> >

>

[Guest guest]

Thank you all for your further replies to this thread... I am trying to catch up

with my emails.

I appreciate your sharing your story Allie. Yes, it seems we have all had our

slice of hell to deal with trying to treat our kids. And thanks for your advice

about meds - giving you a sanity/regrouping break. I know I am so burnt out

that I don't have any fighting energy left in my tank. One more " healing

regression " will send us all over the edge.

I wish you the best of luck with your son's tonsil surgery - hopefully it will

be the answer to some of his struggles.

Kim

> > > >

> > > >

> > > > Kim

> > > > I know some people will hate me for saying this but you may have to

consider a stronger med until you can get to the bottom of her immune problems

as a stopgap measure so you can reduce the suffering of your family and child

who are in crisis. Trust me I have been there with what you are describing. It

will take time to restore her immune and behavioral health and you need to buy

some time.

> > > > Best wishes

> > > > Sara

> > >

> >

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