frustration

Trying to get Bucket the help he needs has turned out to be just one frustration after another.  Really.  It's like the stars align against us or something.  I still manage to make it all happen, but it is very draining.  Today I finally hit overload and just cried for a while.

Here's the short version of the story...

Last spring we found that Vyvanse just wasn't cutting it at school any more.  We had adjusted his dosage up and down the previous year or so, trying to maximize the benefit while minimizing the side-effect (insomnia), but we just weren't getting the results we wanted.  So we switched to Adderall.  It was fabulous! but then we took Bucket in for his checkup to find he had lost weight.  No more Adderall.  And the pediatrician said it was time to take Bucket to a specialist.  So we jumped through lots of hoops and did lots of waiting and finally got him in to see a pediatric psychiatrist last fall.  The new Dr. had a theory that maybe Bucket's attention issues were mostly due to his anxiety, so first we tried several medications for anxiety.  None of them seemed to help his anxiety or meltdowns much and definitely didn't help the attention problems.  School was going terribly!  Finally, at Christmas time, I called the Dr. and said we had to do something, because Bucket was basically failing at school.  I told him I wanted to just go back to Vyvanse (better the devil you know) rather than continue trying new medications.  Bucket needed to have some kind of success at school - not have the entire year be a waste.  The Dr. agreed and we added Trazodone, to help the sleep issues.  Fast forward three months and it became clear that the Vyvanse wasn't quite cutting it.  Bucket was no longer wandering in the classroom and things were better... but his grades were still slipping.  Not bad.  The sort of thing that the teacher wouldn't usually worry about with other students, but given Bucket's intelligence and potential...  she DID say something.  So after our last SEP I called the psychiatrist to discuss the possibility of increasing the dose of Vyvanse.  That's when I discovered that the Dr. was no longer seeing patients.  Turns out he decided to take an administrative position in a hospital and told his pediatric patients to find a new doctor.  So it was back to the hoop jumping with the insurance and the three month wait to get in to a new Dr. (who's office is an hour away).  But that still left us with what to do with Bucket's meds in the mean-time.  So I called the pediatrician's office and made an appointment.  Surely he'd give me the prescription we need.  Then, the day before our appointment, the office called.  Oops.  They'd scheduled our appointment for while the Dr. was on vacation.  We could wait two weeks to come in, or just see another provider.  We were running out of meds, so I took the second option and met with a Dr. who doesn't know us or our situation.  I gave him the brief run down and he wrote me the prescription.  Huzzah.  We ran over to the pharmacy.  But when we went to pick up the meds we were told that because we were changing dosages, our insurance now requires a prior authorization.  It would take a couple days.  The pharmacy would call when it was ready.  Six days later (today), I called the pharmacy.  No, they hadn't received the needed authorization.  So I called the insurance (please hold).  First they said the provider needed to send them an authorization request.  Then (please hold), no, actually that med isn't covered.  Then (please hold), no, that med is now handled by the State, I need to have the pharmacy run it through the State.  Then (please hold), no, it IS their responsibility, but it is no longer on their formulary list, so we need the authorization request from the provider AND documentation showing that we have tried EVERY other med on their list.  Then (please hold) I got on with one of their pharmacists to go over the LIST.  Literally a dozen meds and they were saying Bucket couldn't get any Vyvanse until we tried them ALL.  So I got MAD.  Nicely, without alienating the lady I was talking to, but MAD.  I told her all that we have been through with this kid and said it was NOT fair to ask him to go without meds or to start trying new meds in the middle of end of year testing and one month before school gets out.  She took frantic notes so she could discuss the case with her supervisor (the one with the power to do something, who, of course, was in meetings today).  Then (please hold) she came back to say she'd found a way to get it through for this month.  They are no longer going to cover Vyvanse (at all) and are having everyone move to other medications, so she didn't know if we'd be able to get another prescription filled next month, but at least we can get through school and we'll be seeing the new Dr. in July.  Even though I ended up getting what I needed, after that hour on the phone...  I just sat down and cried.  It just seems that getting Bucket the help he needs is one battle after another.   I have to fight HIM.  I have to fight the school for his 504 accommodations.  I have to fight the classroom.  I have to fight homework.  I have to fight the insurance to get him the Dr. he needs.  I have to fight for his meds.  And now I'm going to have to fight the district... this year has been such a stress - for him, for his teacher, for me... that I'm thinking of moving him to e-school next year, instead of the year after.  So I emailed the district.  And of course, when I finally got an email back from the e-school people (today), it was a generic form letter that they hadn't even bothered to change the name on when they cut and pasted it.  "Hi Darlene!"  Oh, I'm not looking forward to dealing with these people.  But I want the option of sending him part-day, so e-school with the district will be the simplest way to go...

I guess it is a good thing I had a mean mom who taught by example how you stand up for yourself and MAKE things happen and who made me start practicing that skill as a child by making me ask for my own ketchup when we went out to eat.  Oh, how I hated the walk up to the counter, the waiting for them to notice me and having to speak for myself and say what I wanted.  But, oh how glad I am now that I can do that.  It is an essential mommy skill. 

Thanks again mom.