Re: Substitute for Melatonin??? Barb

[Guest guest]

Hi Barb!

 

The study is a medication study of Zoloft. It lasts for 17 weeks and I think we

have about 6 weeks left. The Zoloft has made huge improvements to her OCD, but

the Exposure response has really made a the biggest impact and right now we are

getting that for free, after the study our insurance will not pick up the cost.

 

In the beginning whenever I would voice a concern their first response was " you

can opt out " but I think it is important to stay in the study so that they can

learn from it but if my concerns arent being taken seriously then are they

really documenting it? My daughter started having muscle aches in her back a

few weeks in, they denied that it was a side effect then they accidentally

increased her dose and the back issue got so bad she just cried.....they fixed

the dose and the back issue got better and they still insist it isnt a side

effect. Very frustrating.

 

They told us to use the melatonin, now I find out she shouldnt take it because

of her autoimmune issues. I keep telling them she falls asleep just fine but she

isnt getting any rest and it seems like they dont hear it, my daughter has

corrected them on many occasions when they say things like " so you cant fall

asleep? " .

 

I am kinda feeling like....lets just get through the next 6 weeks the best we

can so she can get the Exposure therapy and then make a change....then i think

that is a mistake....ugh!

 

The DR doing the exposure Therapy is absolutely wonderful!!! We love him!

 

...mom to Sara " just right OCD "

Subject: Re: Substitute for Melatonin??? PAM

To:

Date: Tuesday, November 23, 2010, 10:45 AM

 

it certainly sounds like it is the zoloft from what you describe, if

nothing else has changed. In this case a change to another ssri would make

sense, but since you are in the study this is not an option unless you opt out.

I'm sorry I forget how long you've been in the study, how long she's been on the

zoloft? Is the research being done specific to zoloft or at some point can this

be changed? Do they allow the addition of any other medication, something to

help with sleep. Surely there must be some latitude to deal with this kind of

thing.

When there is research being done they are invested in keeping you in the study,

it sounds like this might be why you are " shot down " when you raise this

concern. I have had family members in similar situations, and it is a problem

with being part of a study.

Is the zoloft helping with the OCD at least???

Barb

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> > I read that Melatonin shouldnt be used by people with autoimmune diseases,

my daughter has two, then what is an alternative???

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> > I am not happy that the Dr told us to use it knowing her health history. She

sleeps but doesnt get any rest and she really needs something.

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> > Any ideas?

> >

> > ...mom to Sara.. " " just right OCD "

> >

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[Guest guest]

Hi ,

Well, having someone providing expert ERP is invaluable, so I can understand

your wanting to continue for this alone. My only other thought would be to ask

if she can lower the dose of the Zoloft to see if it impacts her ability to

sleep through.

Never pleasant when you feel your concerns are not taken seriously or even

considered. I can definitely relate on that front!! Hard enough just getting

through the day, without having to " fight " with the professionals providing your

daughter's care. I think this part of our experience is carved into my memory

bank....

Keep advocating and listening to your gut, is about all I can say. Wish I'd

advocated harder at some points, but you kind of run out of " fight " , especially

if no one is listening. Nothing easy about getting our kids help!

Hang in there. Six weeks is not much longer, as you say, and worth it for the

ERP. At least you know the zoloft helps, so another ssri will too, and you

should be able to find one that does not cause the sleep issues, once she is out

of the study.

Warmly,

Barb

>

> Hi Barb!

>  

> The study is a medication study of Zoloft. It lasts for 17 weeks and I think

we have about 6 weeks left. The Zoloft has made huge improvements to her OCD,

but the Exposure response has really made a the biggest impact and right now we

are getting that for free, after the study our insurance will not pick up the

cost.

>  

> In the beginning whenever I would voice a concern their first response was

" you can opt out " but I think it is important to stay in the study so that they

can learn from it but if my concerns arent being taken seriously then are they

really documenting it? My daughter started having muscle aches in her back a

few weeks in, they denied that it was a side effect then they accidentally

increased her dose and the back issue got so bad she just cried.....they fixed

the dose and the back issue got better and they still insist it isnt a side

effect. Very frustrating.

>  

> They told us to use the melatonin, now I find out she shouldnt take it because

of her autoimmune issues. I keep telling them she falls asleep just fine but she

isnt getting any rest and it seems like they dont hear it, my daughter has

corrected them on many occasions when they say things like " so you cant fall

asleep? " .

>  

> I am kinda feeling like....lets just get through the next 6 weeks the best we

can so she can get the Exposure therapy and then make a change....then i think

that is a mistake....ugh!

>  

> The DR doing the exposure Therapy is absolutely wonderful!!! We love him!

>  

> ...mom to Sara " just right OCD "

>

>