Grass is greener? -who says??

[TexasTornado]

Hi Everyone, this is going to be lengthy-so please bare with me...

Well alot has been happening since I have posted here last
But Ive run into a problem or something Im muddled abt here, and I
was wondering if you all could give me your honest opinion abt things.

difficult child got diagnosed at a Childrens hospital, then we got involved
in Mental health services, got a case manager etc-and he suggested all
these services to us: group social skills, 1:1 work on facial
expressions body language sessions etc. But we couldnt afford them as
we didnt have Medicaid. Every time I went into that Mental health
building it was costing me $32 with our insurance co-pay.
So me thinking everything would just be so much better if we had
medicaid-I applied and we got it. We have to spend down abt $23 a
month but with difficult child's medications its abt $50 bucks anyway. So Im thinking
its worth it-right?

Well so we start seeing a psychiatrist in the mental health building.
I was pretty nervous and hated explaining everything all over agn-but
I REALLY REALLY liked him-totally got everything Autism Spectrum Disorders (ASD) related, where I
was kinda nervous he would just think discipline behavior related as
thats what the case worker seams to think etc. He doesnt think Pervasive Developmental Disorder (PDD) or
AS are anywhere near Autism symptoms..sigh...anyway we were working
with him-he sees alot of older Autism Spectrum Disorders (ASD) teens and adults as well and he
could really relate to difficult child. I was really impressed with him.
Anyway I really liked him-just after our first visit.

But then he leaves Mental Health and is private practise now at a
Regional Hospital-and now he cant see difficult child as we have
Medicaid...GRRRR!!!!

So I call mental health and they dont have an apt till May a sthey
only have one doctor now and hes a pschologist...sigh... to see difficult child to
get his adderall agn,I have no idea abt the resperdal-thank goodness its got 2 refills!! and since the doctor at Regional upped his dose
when he was at Regional(the adderall) -Mental health cant give difficult child ANYTHING until
we get into see their doctor in April.
I found all of this out today when I went to get his medications
refilled....sheesh.. I am just soooo torked!!!!!and hes got 4 pills
left.....

Plus I went to observe difficult child in his social skills class-and not ONE
kid in there acted like difficult child. difficult child could care less abt anyone in
there and wont talk to anyone-he follows directions, but face down, no
comments and just goes through the motions with such a sullen look on
his face, wont play in with the games-wants to goin the other room by
himself and play.If they force him to play he'll try and run away...
Its as if he is the only one there and hes in this bubble and he is
fine with it-I know you all know exactly what Im talking about. It
just wasnt what I was expecting and Im starting to question if its
making him misereable-then why is he there, if its not helping-then
why is he there, why are we actually on Medicaid-as we cant even
choose our own preferrred doctor.
Im just so upset and I dont know if what Im doing is the right thing
or not :frown:

difficult child just looked like he didnt belong in that class-and it made me
feel bad for him-im not sure he even was aware of anything, but I
still felt uncomforteable for him-Know what I mean?? This is his 3rd time there.
I mean how long and do you push fro your chidl to be typical if he is happy not having friends, if he is happy playing by himslef???

Sheesh....this sure isnt easy is it guys? I just dont know what Im
doing anymore.

Mental health seams to think typical behvior solutions will work,
they told the teachers at the social skills class if he runs or gets
aggressive agn to restrain him-which is exactly the mind set that
terrifies me. NEVER have I had to restrain difficult child. The doctor who I feel
understands difficult child doesnt think that and he gets Autism Spectrum Disorders (ASD) kids and
behaviors ....I just dont know guys.....

What do you all think about all of this.....what would you do, or
what has your experiances been with mental health. I kind of like them
just as a safety net in case of an emergency etc-but still...I dont
know....

ANY advice would be soooo appreciated. You know its been abt a year
since difficult child was actually diagnosed and I would have thought I woudl
have figured out some things by now, but Im still as clueless as I was
in the beginning.....sigh....

Sorry this is sooo long-I just dont have anyone I can trust that is
in it for difficult child-I just dont know abt anyone anymore :frown:

Luvs,
Kathy

 

[Fran]

<span style='font-size: 11pt'>If you have figured it out in a year, let me know. I have been dealing with this for 20yrs and I still feel like I'm in uncharted territory.
I can tell you,I'm not thrilled about the whole system. difficult child got medicaid when he was approved for SSI last year. It is his secondary insurance. He is still on a private insurance plan from my husband. So far medicaid pays the co pays for 3 of the 4 medications a month that he takes. Private insurance is primary. I did't want someone switching medications and changing things if they don't know difficult child's history. I still don't understand how the system thinks doctors.and mental health treatment are so easily switchable. It took years to find a psychiatrist who understood difficult child and willing to work with him and medications. Now they want to dump an 11 yrs relationship and replace him with someone no one met or knows? As long as we can stay with our private insurance, I'll do it.

Social Skills class. Didn't do much for difficult child. We tried it but at the end of the semester it didn't change anything because difficult child didn't get it. I think if it was something difficult child got, he would have learned things but he couldn't relate the group activities to himself. They were just structured paid play dates for my son. His disability was too great or he learned in a different way. I think you have to try it since some kids do learn from social skills classes. I would consider waiting until he wants a friend or is a little older. Maybe look for a one to one social skills teaching opportunities. Sometimes I think the groups are intimidating to a child who doesn't filter the information in a typical way. Look at your little guy and see what he needs and what is working. Talk to him and ask him if he wants to continue.

It's a frustrating and long journey with a child who is a difficult child. I hope it gets easier. Having a Dr. who clicks with the family unit is really important. </span>

 

[oceans]

I guess if it were me, I would fall back on the insurance and get the psychiatrist you feel comfortable with. I'm not certain if the insurance would pay for him now that he is private? It seems like it is only $9 between the Medicaid and the insurance payment. Maybe I am not getting how it works. What you are doing right now sounds very limiting, and you seem to be frustrated by it. Would it be worth some peace of mind on your part to go back to using the copay of the insurance?

 

[timer lady]

The system is complex - you'll almost need a personal assistant to keep up with it & all the changes that occur during any legislative season.

I'm sorry for the psychiatrist change - it's hard to let go of a psychiatrist whom you like & who seems to get it.

I like the idea that you have a safety net of sorts in place. If you can use private insurance with the medicaid covering what isn't covered I'd try to find someone within your network.

As for the "one cure fits all" mentality, that will be a matter of repetition to any provider you may use. I bring in plenty of documentation, reports & such; I inform providers of what has been tried, what works & what doesn't.

We've been very lucky - we've settled in with a team over the last 2 years or so.

 

[dreamer]

Just wanted to send you some hugs.
Yes, when we had Medicaide we had severe problems finding docs to take it, not just tdocs, but all types of docs. and no we did not have choices cuz so few docs would take it.

Oldest difficult child was in a social skills class. It did not accomplish anything......partly becuz the classmates were even more difficult than my difficult child......and they frightened my difficult child.

I wish I had answers for you. I have been dealing with the gfgness of husband, oldest dtr and sometimes yougest son, from county services to local services to veterans hospitals, to teaching universities and childrens hospitals. 18 years been doing this. In that time I have watched docs make 360 degree changes in their thinking back and forth, up and down, change their approaches etc. But so far I have seen far too little progress. The only good thing that has happened is my kids grew in spite of it all. - and that they survived thru so far. (knock on wood)
I do keep involving my kids in research studies when the opportunity presents itself, and I still lobby and advocate for their rights and better treatment but........
whew.
Hugs to you.

 

[TexasTornado]

Thanks everyone for the advice and suggestions.
I just said to heck with everything and went to our family practitioner here in town(hes teh one who refereed difficult child to Childresn anway.....-he said he had NO problem prescribing medications until we had settled with Mental health :smile:
I guess what just REALLY torks me is how can a system or Mental Health just BAM-not give medications to a child who they KNOW needs them-how can they just boom-stop, when THEY are the ones who are supposed to be on our side helping things....GRrrrrrr! Torks me up big time! I dont know-it just doesnt leave me very confident in them now.
When I was in the office talking abt difficult child-I lost it-I was sobbing-I felt so incredibly silly......and check this out-I left with a prescription for ME of all things-LOLOLOL, that wasnt expected.
But Im pretty sure its needed-just ask the kids or husband!!!!
Thanks agn for all your support guys!
Luvs,
Kathy

 

[timer lady]

Kathy,

You aren't the only parent to walk out of a difficult children appointment with their own prescription. It's happened to me twice.

I finally went to my own doctor to take back control of my own stress level & in turn, health.

I'm glad that your current pediatrician doctor is willing to continue with the medications until mental health situation is straightened out.

Take some deep breaths & a hot bath - relax tonight. :bath:

 

[Liahona]

I've been on the doctor merry-go-round as well. First we were on Medicaid. Then husband made to much, so difficult child 1 was on CHIP and the other kids were on Medicaid. At this time difficult child 1 started seeing a great therapist and psychiatrist. difficult child 2 starts seeing the early intervention and the autism specialist for medicaid. Then husband doesn't make enough so difficult child 1 goes back to medicaid. We lose the therapist and psychiatrist. psychiatrist for medicaid isn't as good. We still go and our relationship improves abit. Ex decides to put difficult child 1 on his insurance. difficult child 1 is still on medicaid as a secondary insurance. Now I think we're in the situation you are in. The good psychiatrist and therapist cost a co-pay that really strains the household. The free psychiatrist isn't as good. We're paying the co-pays for the good docs and medicaid is paying for his medications.

With difficult child 2 the medicaid is wonderful because the people available are wonderful. I'm sorry the medicaid people where you are aren't good. Maybe the new psychiatrist will be good to?

Since we've changed docs so much its been explained to me by more than one psychiatrist office that they are required to take care of difficult child 1 until we can get in to see a different psychiatrist. For example, the great psychiatrist on the private insurance is closing his outpatient practise so we have to find another psychiatrist. The great psychiatrist is doing phone consultation and prescribing medications until we can get in to see someone else.

 

[TexasTornado]

Thanks everyone-
Yes Emilysmom-you sound like you are in a very similar place .....sigh....I didnt know you could pay a a copay still from the doctor that wasnt taking medicaid and then still get medicaid to pay for the prescriptiosn he prescribes-I thought if the prescriptions came from him that medicaid wouldnt cover them...hmmm...we might just do that then-same as you-as I REALLY like this psychiatrist that we had been seeing...
So do I have this right-I cant still get medicaid to pay fro scripts even though they wont cover teh doctor-and then Id just pay teh copay for him...????
Sheeshh..talk abt confusing....
I kinda REALLY like having an OUTSIDE psychiatrist-instead of the Mental health people only-as I knwo teh Therapist work with teh school, and I dont eaxctly have much faith that everything is kept confidential....
So would I have to okay this private practise doctor with mental Health-even if I was paying it with private insurance????I guess I dont if Im not expecting Medicaid to pay for it-right?
ugh....confused....LOLOLOL
Thanks Emilysmom
Luvs,
Kathy