4 weeks post ivig and still really struggling

[Joan Pandas Mom]

My son is 4 weeks post ivig and his rituals are still so bad if not worse than pre ivig. I have heard 2-3 weeks are tough but 4 weeks into it? Has anyone else seen flare up for this long? I started the "sammy dose" of Augmentin last week. Could that be making things worse? I am listening to him open and close the bedroom door for about the 100th time. This is too hard.

[JAG10]

Joan- sorry not much to personally add, but I'm sure I've read on here of parents mimicking your experience definitely up to 6 weeks, I think I've even read 8. It doesn't help much when you are counting the door bangs though. I'm so sorry your road is so rocky.

 

Are you religeous? St. Paul is the patron saint for patience (and patients).

 

I'll pray for you.

Jill

[melanie]

Do you notice any thing?Are you keeping a IV journal.How his behavior?Better or Worse?What dosage IV 2.0?

 

I need patience too.Is there a prayer I can say?

 

Melanie

[JAG10]

Below is a prayer to St. Paul. This might be more fitting for when you are quiet, more peaceful and able to concentrate. Personally, in the heat of particularly taxing mother/child moments, I always say a few Hail Mary's (my version of counting backwards from 20 to calm down, kills two brids with one stone.)

I keep St. Paul and St. Blaise medallions in my purse. St. Blaise is the patron saint of illnesses of the throat. Although the boy he helped had a fishbone stuck in his throat, he's a good saint for PANDAS (and SLPs.)

 

Patience Prayer to St. Paul

O glorious St. Paul,

who from a persecutor of Christianity,

did become a most ardent apostle of zeal;

and who to make known the Saviour Jesus Christ

to the ends of the world did suffer with joy imprisonment,

scourging, stonings, shipwrecks

and persecutions of every kind,

and in the end did shed your blood to the last drop,

obtain for us the grace to receive,

as favours of the Divine Mercy,

infirmities, tribulations,

and mistfortunes of the present life,

so that the vicissitudes of this our exile

will not render us cold in the service of God,

but will render us always more faithful and fervent.

 

Amen.

~~~~~~

[Doug]

My son is 4 weeks post ivig and his rituals are still so bad if not worse than pre ivig. I have heard 2-3 weeks are tough but 4 weeks into it? Has anyone else seen flare up for this long? I started the "sammy dose" of Augmentin last week. Could that be making things worse? I am listening to him open and close the bedroom door for about the 100th time. This is too hard.

What did Dr . K say? did he up your dose of med's

can you try a different abx?

Lauren is on azith

[T_Mom]

Hang in there Joan--

First, I am so sorry you are going through this --and after IVIG.

 

We have not done IVIG, but I do remember speaking with Diane Pohlman a couple of years ago, and it was clear that IVIG could trigger a bad time before a good settledness set-in, so to speak. I hope that will be the case--

 

Is there anything other changes, etc. that could be influencing the behavior at this time? --dietary or environmental changes that have been initiated?

 

Antibiotics, (I assume) are on full-strength right now as well--and omegas for anti inflammatory effects, all the best--

TMom

Edited June 21, 2010 by T.Mom

[Joan Pandas Mom]

I'll ask Dr. K. today if we could try Azith. again. Is it helping Lauren?

 

My son is 4 weeks post ivig and his rituals are still so bad if not worse than pre ivig. I have heard 2-3 weeks are tough but 4 weeks into it? Has anyone else seen flare up for this long? I started the "sammy dose" of Augmentin last week. Could that be making things worse? I am listening to him open and close the bedroom door for about the 100th time. This is too hard.

What did Dr . K say? did he up your dose of med's

can you try a different abx?

Lauren is on azith

[Joan Pandas Mom]

Jill, I am religious and thank you for the prayer. I'm going to print it and keep it with me. Jared is religious too, but a lot of his obsession right now about God. OCD is putting blasphemous thoughts in his head and it is really upsetting him. I will hear him saying to himself every once in a while, "It's not me God it's OCD." It has gotten so bad he won't go to Church anymore with me. We were praying with the priest at our Church and he won't do that anymore either. OCD takes over and doesn't let go.

[Joan Pandas Mom]

Melanie, I haven't been keeping a log but that is a great idea. It seems worse to me. I'm not sure of the dose. I think it was 2.0.

 

Do you notice any thing?Are you keeping a IV journal.How his behavior?Better or Worse?What dosage IV 2.0?

 

I need patience too.Is there a prayer I can say?

 

Melanie

[Joan Pandas Mom]

I'm wondering if it is something environmentally too. I just made apt for testing. The first apt is August. He is so bad right now, pacing, blessing, etc.

 

Hang in there Joan--

First, I am so sorry you are going through this --and after IVIG.

 

We have not done IVIG, but I do remember speaking with Diane Pohlman a couple of years ago, and it was clear that IVIG could trigger a bad time before a good settledness set-in, so to speak. I hope that will be the case--

 

Is there anything other changes, etc. that could be influencing the behavior at this time? --dietary or environmental changes that have been initiated?

 

Antibiotics, (I assume) are on full-strength right now as well--and omegas for anti inflammatory effects, all the best--

TMom

[Doug]

I'll ask Dr. K. today if we could try Azith. again. Is it helping Lauren?

 

My son is 4 weeks post ivig and his rituals are still so bad if not worse than pre ivig. I have heard 2-3 weeks are tough but 4 weeks into it? Has anyone else seen flare up for this long? I started the "sammy dose" of Augmentin last week. Could that be making things worse? I am listening to him open and close the bedroom door for about the 100th time. This is too hard.

What did Dr . K say? did he up your dose of med's

can you try a different abx?

Lauren is on azith

Yes,Lauren is doing super with azith

But she had a rash with augmention after ivig

so we swiched her right away,she has a problem with abx's

so we are keeping our fingers crossed that it don't happen with

azith

But I have read on here about a rash that developes something about the strep leaving the body

or something like that??

and also she had H1N1 3 day's after ivig and i think you can get a rash with that also?

I need to start writing all of this stuff down!!!

I think I need to start taking her fish oil for my brain...

But,hang in there I am sure it is going to get better

Lauren will be 6 tomorrow and she is so excited for her birthday

Last year she was afraid of it,because of starting school and I told her about a week before that 5 year olds don't sleep with there moms

that they are big girls.. BIG BIG MISTAKE!! that is ALL she thought about all day

[Doug]

Jill, I am religious and thank you for the prayer. I'm going to print it and keep it with me. Jared is religious too, but a lot of his obsession right now about God. OCD is putting blasphemous thoughts in his head and it is really upsetting him. I will hear him saying to himself every once in a while, "It's not me God it's OCD." It has gotten so bad he won't go to Church anymore with me. We were praying with the priest at our Church and he won't do that anymore either. OCD takes over and doesn't let go.

Lauren told us at one point that she wanted to go back with God in heaven

because she remembers being there!!

I have never cried more in my life..

she is 5

This is when her "BAD THOUGHTS" were at there worst

and she just wanted them to go away

Edited June 21, 2010 by Doug

[Joan Pandas Mom]

HAPPY BIRTHDAY to Lauren, I'm so glad she is healthy again and can enjoy it. Have fun!

 

I'll ask Dr. K. today if we could try Azith. again. Is it helping Lauren?

 

My son is 4 weeks post ivig and his rituals are still so bad if not worse than pre ivig. I have heard 2-3 weeks are tough but 4 weeks into it? Has anyone else seen flare up for this long? I started the "sammy dose" of Augmentin last week. Could that be making things worse? I am listening to him open and close the bedroom door for about the 100th time. This is too hard.

What did Dr . K say? did he up your dose of med's

can you try a different abx?

Lauren is on azith

Yes,Lauren is doing super with azith

But she had a rash with augmention after ivig

so we swiched her right away,she has a problem with abx's

so we are keeping our fingers crossed that it don't happen with

azith

But I have read on here about a rash that developes something about the strep leaving the body

or something like that??

and also she had H1N1 3 day's after ivig and i think you can get a rash with that also?

I need to start writing all of this stuff down!!!

I think I need to start taking her fish oil for my brain...

But,hang in there I am sure it is going to get better

Lauren will be 6 tomorrow and she is so excited for her birthday

Last year she was afraid of it,because of starting school and I told her about a week before that 5 year olds don't sleep with there moms

that they are big girls.. BIG BIG MISTAKE!! that is ALL she thought about all day

[kimballot]

delete

Edited June 22, 2010 by kimballot