Re: update on our family

[Guest guest]

It is hard to know from your short post if the social worker is truly just not

comfortable with or good at doing ERP for kids with OCD and those had this

excuse, or if your son truly couldn't comply without medication. For me and my

children, medication truly is necessary to lower the intensity of our fears and

how real they feel to be able to do ERP. The relief that we all get from

medication for OCD is beyond words. Is our OCD cured by meds? No. On the

other hand, it makes fighting the OCD and having a good quality of life possible

for us.

update on our family

Rhonda- I haven't given an update. This summer almost the day school let out

our 8 year old had a huge resurgence of OCD rituals. I was really blindsided

because usually coming home for the summer is a relief for him. So we can give

loads of credit to the school and his teachers that he was so happy and

successful.

In hindsight, I think I way underscheduled him for the summer. Every special

needs kid his age we know is participating in some sort of summer camp. I am

learning that the schedule, routine, and engagment in interesting activities can

absorb tons of energy in a helpful way. Never true before for my son, but this

is now a real need. It is a little hard to add this stuff in now since we

didn't plan ahead for it but we have been finding half day programs one week at

a time. That is helpful beyond belief for family balance, for me and for his

younger brother. And he seems much more in control of himself as well.

We were advised to consider meds and made the appointment. My husband was

really uncomfortable but the struggle was obvious. After a helpful counseling

session, we decided to put my son in several weeks of camp and hold off of meds

until the fall. (reasoning: he fell apart without a schedule, add in a schedule

to see what happens). So we canceled the drs appt. I will say that the half

day of morning activity has helped us tip back far enough into stability that I

am not feeling so overwhelmed. His last lie down on the floor tantrum/tears was

a week ago and until then the tantrums were about once a day.

I think we have hit the bottom of the valley and are trending back up (I

hope!!!). This round of OCD chaos was over 4 weeks. If it went on for 8 weeks I

am fairly certain both my son and I would be on medication. That is just not

survivable long term.

Here is a question for the group if you have any thoughts: the social worker he

has had for 2 years is great. But he claimed he could not do any ERP without

meds, since my son would not cooperate. We are finding that we CAN do the ERP,

it just takes load of effort and convincing and rewarding. Do I try to make a

case to bring him into our plan to fight without meds, or look for a new guy?

(I think he would go along with us and hate restarting, but it feels

uncomfortable to not follow his advise...)

Tara

[Guest guest]

We do not have an answer yet about whether he can be healthy long term without

meds.  I would have already gone forward with them, but I am willing to wait a

while longer to see how we can do without it.  My husband really needs to see

what is the best outcome we can get from ERP and other therapies.  I am

respecting this because I felt exactly the same way 9 months ago when meds were

first recommended, we pursued an OT evaluation and therapy instead and it paid

off really well.  I think the struggle is more intense now for my son.  But my

husband has spent so many hours on his own with my son reading, working on ERP,

just hanging out that I feel like he has earned the right to delay the meds

decision for now.

 

This is such a huge responsibility for parents, to be making these #1 or door #2

without knowing what the exact outcome will be.  Eventually my son will probably

be on meds, especially since he already wants them and he is turning 9 soon. 

But it will feel better if he, my husband and I all agree on it when we pull the

trigger.

 

Tara

[Guest guest]

I agree with all you say, but just be aware that if he can't make much progress

with the ERP, it may not be that he isn't willing, but that he needs the

medication to make it possible. Before my kids went on medication their

thinking was so different that no amount of ERP could change it. It is hard

sometimes now to remember just how " off " their thinking was. Recently my sister

said she is taking her granddaughter to get her first American Girl doll for her

birthday. It brought back the memory that I'd forgotten that my daughter kept

that doll in the attic because at that time, before medication, she had a fear

that her dolls would come to life. She does so much better on medicine, so it's

sometimes hard to remember those times. On the other hand, it isn't a cure,

just a help. On visiting day at sleep away camp two weeks ago, my daughter

showed me the birthday stuffed bear that I'd sent to her in a care package. She

had cut out the wiring that caused it to be able to sing " Happy Birthday. " At

first she made some excuse, but then she reminded me that it had always been an

OCD issue for her about mechanical dolls. She is doing so much better that I'd

forget about that, but I guess it still lingers.

Re: update on our family

We do not have an answer yet about whether he can be healthy long term without

meds. I would have already gone forward with them, but I am willing to wait a

while longer to see how we can do without it. My husband really needs to see

what is the best outcome we can get from ERP and other therapies. I am

respecting this because I felt exactly the same way 9 months ago when meds were

first recommended, we pursued an OT evaluation and therapy instead and it paid

off really well. I think the struggle is more intense now for my son. But my

husband has spent so many hours on his own with my son reading, working on ERP,

just hanging out that I feel like he has earned the right to delay the meds

decision for now.

This is such a huge responsibility for parents, to be making these #1 or door #2

without knowing what the exact outcome will be. Eventually my son will probably

be on meds, especially since he already wants them and he is turning 9 soon.

But it will feel better if he, my husband and I all agree on it when we pull the

trigger.

Tara

[Guest guest]

Wow good for her - she found a way to handle it without letting it ruin her camp

experience!! That's truly managing it eh?

Rhonda

Re: Re: update on our family

I agree with all you say, but just be aware that if he can't make much

progress with the ERP, it may not be that he isn't willing, but that he needs

the medication to make it possible. Before my kids went on medication their

thinking was so different that no amount of ERP could change it. It is hard

sometimes now to remember just how " off " their thinking was. Recently my sister

said she is taking her granddaughter to get her first American Girl doll for her

birthday. It brought back the memory that I'd forgotten that my daughter kept

that doll in the attic because at that time, before medication, she had a fear

that her dolls would come to life. She does so much better on medicine, so it's

sometimes hard to remember those times. On the other hand, it isn't a cure, just

a help. On visiting day at sleep away camp two weeks ago, my daughter showed me

the birthday stuffed bear that I'd sent to her in a care package. She had cut

out the wiring that caused it to be able to sing " Happy Birthday. " At first she

made some excuse, but then she reminded me that it had always been an OCD issue

for her about mechanical dolls. She is doing so much better that I'd forget

about that, but I guess it still lingers.

[Guest guest]

Tara, I'm so encouraged to hear how you came up with an intervention that is

working so well! My son got off his schedule during the July 4th week and that

alone was enough to send him downward. Amazing.

Thoughts on the meds - from what I've learned from my son and therapist - for

son, doing ERP without meds is like if someone asked you to memorize the

multiplication tables while you had a severe case of poison ivy. Itchy poison

ivy. You can try, but oh the pain! It's fantastic to hear how your husband is

involved with your son - I really can see why you'd want to wait til he's on

board too. However, the meds can quiet things down enough to get the exposures

done, then you can taper off the meds again, at least I'm hoping we can. Get the

new habits going, then once he's used to them, decrease the meds.

Not sure with the social worker - do you mean you've been going for 2 years and

SW hasn't done ERP or that SW has done it and is giving up now? If you have any

other better options, such as therapists who are skilled and proven successful

with ERP, my thought would be to switch. Time is so precious and it sounds like

your son is beginning to get frustrated, which makes ERP more difficult. A new

chemistry with a different therapist can also be a spark to get things going.

Just my thoughts.

Rhonda

update on our family

Rhonda- I haven't given an update. This summer almost the day school let out

our 8 year old had a huge resurgence of OCD rituals. I was really blindsided

because usually coming home for the summer is a relief for him. So we can give

loads of credit to the school and his teachers that he was so happy and

successful.

In hindsight, I think I way underscheduled him for the summer. Every special

needs kid his age we know is participating in some sort of summer camp. I am

learning that the schedule, routine, and engagment in interesting activities can

absorb tons of energy in a helpful way. Never true before for my son, but this

is now a real need. It is a little hard to add this stuff in now since we

didn't plan ahead for it but we have been finding half day programs one week at

a time. That is helpful beyond belief for family balance, for me and for his

younger brother. And he seems much more in control of himself as well.

We were advised to consider meds and made the appointment. My husband was

really uncomfortable but the struggle was obvious. After a helpful counseling

session, we decided to put my son in several weeks of camp and hold off of meds

until the fall. (reasoning: he fell apart without a schedule, add in a schedule

to see what happens). So we canceled the drs appt. I will say that the half

day of morning activity has helped us tip back far enough into stability that I

am not feeling so overwhelmed. His last lie down on the floor tantrum/tears was

a week ago and until then the tantrums were about once a day.

I think we have hit the bottom of the valley and are trending back up (I

hope!!!). This round of OCD chaos was over 4 weeks. If it went on for 8 weeks I

am fairly certain both my son and I would be on medication. That is just not

survivable long term.

Here is a question for the group if you have any thoughts: the social worker

he has had for 2 years is great. But he claimed he could not do any ERP without

meds, since my son would not cooperate. We are finding that we CAN do the ERP,

it just takes load of effort and convincing and rewarding. Do I try to make a

case to bring him into our plan to fight without meds, or look for a new guy?

(I think he would go along with us and hate restarting, but it feels

uncomfortable to not follow his advise...)

Tara

[Guest guest]

If you are able to do ERP with your son, the social worker should be able to be

the coach- my guess is this is just an excuse. There are certainly people who

cant do the work ( or times in one persons life where they cant and other times

they can) without meds, but for your social worker to say it cant be done when

you ARE DOING IT, makes me wonder at their qualifications/ comfort with the

process. ERP sucks and is really HARD and AWEFUL work under the best of

circumstances. In children especially, a huge amount of cajoling and a great

reward system is integral to a successful program. I say keep moving forward as

you are. If you can keep your kid off meds and they can do well that is great.

The longer you can keep them off the better, but when you cant, you cant and

then it is time. Trying ERP first is the recommended approach, adding meds only

if ERP alone fails either because the person cant engage, or because it fails.

Good luck- go with your gut- you know what is true FAR MORE than any therpist or

psychiatrist

[Guest guest]

If you are able to do ERP with your son, the social worker should be able to be

the coach- my guess is this is just an excuse. There are certainly people who

cant do the work ( or times in one persons life where they cant and other times

they can) without meds, but for your social worker to say it cant be done when

you ARE DOING IT, makes me wonder at their qualifications/ comfort with the

process. ERP sucks and is really HARD and AWEFUL work under the best of

circumstances. In children especially, a huge amount of cajoling and a great

reward system is integral to a successful program. I say keep moving forward as

you are. If you can keep your kid off meds and they can do well that is great.

The longer you can keep them off the better, but when you cant, you cant and

then it is time. Trying ERP first is the recommended approach, adding meds only

if ERP alone fails either because the person cant engage, or because it fails.

Good luck- go with your gut- you know what is true FAR MORE than any therpist or

psychiatrist