Ped. says let's give it 6 more weeks- new Psychologist suggesting Risperdal...

[totoro]

So we are starting Play therapy with a new psychologist we had to do some more testing etc... he immediately jumps on the PDD (which is not an official dx). He treats most of the Autism kids in this area... so we talk and I keep saying well we are looking into a Psychiatrist and he says Oh you wont need that we can take care of everything through here!?!?!!? He did finally mention another pdoc about 2 hours away at a hospital. Then I remind him I am going to see my Ped in 2 days and I am going to re-eval with her and see what is up.
I also kept reminding him that I was there not for the dx but to work on play therapy for gfg after he evaled her.

He then tells me after our next meeting that he would like to suggest to ped to start her on, RISPERDAL!?!?!? I was like what the frick are you talking about???
I kept my cool, and just listened. He is convinced she has PDD. Which I would accept if he had actually spent time with her!
So I said can we just have an apt to talk once more and then you actually start some "therapy" with gfg??? He said OK. I told him I wasn't to interested in Meds, just yet. I also wasn't interested in some dx from someone who wasn't a pdoc. I also said what about her possible EOBP??? He went on about the difficulty of dx'ing at such a young age...which I understand, but it seems hard to correctly dx PDD also!!!

So we are going to give it one more try with him, he is supossed to be actually good with the kids [img]/ubbthreads/images/graemlins/confused.gif[/img]

So then we saw the ped the next day and she agreed with what I felt, but of course she was not up to date on what was going on... had not really had a chance to read what the new eval's said. My angel's were tired and fighting horribly, gfg started stomping on pc's leg in the room!!! I almost started crying.
That was when ped. asked me about respite!!! I started crying and said I had not had a day off in months... no family, etc, who can you trust??? How do you even start the process??? What would I even do???LOL

Well she agreed with waiting to medicate, gfg is doing well in school, even is my life is falling apart, I don't think she quite realised how bad it is!
But we are sticking with the SID and the AD/HD for now and we will see how treatment goes in the next 6 weeks... then we will re-eval.
I said well school wont be a problem for awhile, but what about my family??? She said lets just go slowly and see how this goes. She thinks there are some other things going on but wants to be patient... I also don't think she realises how long we have been working on treatment on our own. But next time I will bring dh and the video of the explosion and hopefully we will be doing better.... sigh. She also said wait until next apt to pursue the pdoc...

Things have actually been OK but I have had to limit all sensory stimulus outside of doc apts., school and quick store trips. Nothing else, that is the only way I can limit the explosions right now. What a life. But she is still depressed, and hyper beyond all comprehension.
Some days I can't keep up.
SORRY once again for the LONG novel....
thanks for any input...
I do feel good about waiting and giving the 6 weeks a go. And her OT is going really great!!!

One more good thing my BFF called and insisted that next week if dh is in town she is driving up here and spending the night and giving us an actual date night!!! I actually trust her!!!
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[smallworld]

Your friend is an angel. You and DH deserve a date night out. I hope it comes through for you.

The early treatment stage is really hard, particularly if all the players don't agree. I, too, would be wary of a tdoc who makes a snap dx without spending a whole lot of time with your GFG. I would recommend pursuing a pdoc now because it may take several weeks to months to get an appointment, and by the time you have one on the calendar, you might be ready (you can always cancel if it doesn't feel right by the time the appointment rolls around).

The interesting thing about Risperdal is that it is used to treat raging related to both bipolar disorder and PDD. So it is not an off-the-wall med choice. However, it will not do anything for inattention or depression. And it does not work long-term to stabilize mood swings associated with BP. You need a mood stabilizer on board for that. BTW, according to The Bipolar Child, perhaps 10 percent and maybe higher of children on the autistic spectrum have co-morbid bipolar disorder.

Hang in there, warrior mom. You're doing a great job.

[totoro]

I agree If he was a pdoc who had spent time with her and said lets try Risperdal after we had agreed on everything maybe, but to just throw it our there like, oh and this is what we are going to do btw!!!

I am slowly trying to learn about all of the meds and research what possible ones gfg may take one day. Lots of scary possiblities, very confusing!
thanks

[totoro]

One more fun thing I did ask about a Multi-disciplinary Eval... ped said we would have to go to Seattle for one, we are across the state in Idaho, that is a short plane trip or a full day drive... She said again let's take a breath and hold off...

PATIENCE I need PATIENCE on SO many levels right now.

Oh and the other kick in the pants was my MIL, who now wants to help... ugh... ( she told me before gfg's sickness was a self fulfilling prophecy!) "why don't we set a up a web page for gfg, so everyone can know how she is doing?" She got this idea because a friend who is in the hospital just delivered a sick baby and is trying to keep people updated on the situation.

My dh tried to kindly explain that if someone wants to know something all they have to do is ask, but this is not somehting we need nor want to broadcast on some website for her to feel good about herself. I said how is gfg going to feel one day knowing all of her intimate details were chronicled on some open to the public site???
I then proceeded to make a fake entry with the days excitement... needless to say none of it went over well, and we were the jerks, we didn't say anything mean to mil, and we thanked her for caring. But if we don't jump on all of her suggestions then we are not on board and we are pushing everyone out... I said to dh but we are alone kind of we don't live near any of his family and none of them really give a hoot, and I don't have any!!! So in theory who is the website for??? Her, to make her feel like she is doing something... she needs to be fixed also, becuase she can't believe this is happening to HER... give me a break. I try to keep her involved, but it is never enough. But, then they say things like, well you know what you are doing, but shouldn't you go to a real doctor. Or they read one thing and obbsess over it, she has this...
They are worse than gfg...LOL
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[Ltlredhen]

I'm glad things seem to be coming along for you and gfg. I know first hand the frustration of things taking a long time to come about. I too would go ahead and start the process of getting the pdoc. You may have to wait months for an appointment. If you decide in the future you don't want/need, then just cancel it but at least you will be that much ahead of the game.

I just wanted to tell you I understand, lol about the MIL thing. All I can say is just hang in there. The generic stuff you post sounds fine, before long the novelty of the web site might just wear off [img]/ubbthreads/images/graemlins/crazy.gif[/img].

Good going [img]/ubbthreads/images/graemlins/warrior.gif[/img]

Donna

[SRL]

Some clinics seem to have arrangements where the psychologists will give the medication suggestions to a medical doctor on staff (such as a psychiatrist) who will do a very quick visit and prescribe. It's probably approaching/crossing the line of not being appropriate, however given the very short appointments many parents report with the pdocs the opinion of a psychologist who takes time to get to know the patient may be of value. That doesn't sound like the case here, but I thought I would mention how that arrangement seems to work.

My gfg's developmental pediatrician made a suggestion to trial a medication on his first visit, first step of the evaluation process and I was horrified. In that case it was because I knew the medication would likely impact things like the speech evaluation plus I didn't think it was justified at the time. It's always scary looking into medications--Risperdal is an antipsychotic (even scarier sounding than some) but it's been found useful in other applications as well. It's actually often a pretty good place to start medicationwise with the kinds of issues you are dealing with so don't discount it based on the fact that the individual mentioned it the moment you walked through the door. :P

Given the way your kiddo presents with some ASD traits mixed in, you probably ought to prepare yourself for the likelihood that it will be brought up in clinical situations. You sound like you've researched this well so it might be good to mention up front that you recognize that there are some PDD traits present but in your opinion and those of the the previous diagnosticians not enough for a formal diagnosis. I had the opposite problem--my son's ASD traits weren't always apparent to the outside world so I was having to point those out/and or do the convincing. I know it's frustrating but the rule of thumb is to get what you can out of whatever specialist you are seeing and leave the rest behind!

We've been through periods when we've had to totally cut outside stimulation and it's hard on the family. Even now with my gfg doing so well we still keep a tight rein on outside activities. Usually my husband and I split whatever comes up at night so one parent is at home and he doesn't have to be dragged out when it's not critical he be there. One thing I would recommend adding as a short term goal is to find an outing that isn't too overstimulating for her just so she keeps accustomed to going out because anxiety can set in. Find someplace quiet and enjoyable and go to the same place to build it into a routine if you can. I don't know how that might look in your location but I take my gfg to the bookstore/cafe on most Sunday evenings--it's quiet there and we browse books and get a snack. It started out as therapeutic but it's turned out to be just a really nice time for the both of us and we can easily lose sight of that when we're on the early path of diagnosis/therapy.

Be sure that you get some time to get out of the house by yourself!

[MidwestMom]

I completely agree with going slow on meds as my son was on twelve meds and it turned out he had been constantly misdiagnosed. For diagnosoing a PDD/autism, you probably won't get an accurate diagnosis from a psychiatrist though--it's not a psychiatric disorder, and you will do far better going to a NeuroPsych. We took my son to a good psychiatrist and he misdiagnosed him as bipolar (three years on bp meds). He has PDD-NOS and is doing great due to all the early interventions and continuing interventions. Your son has some red flags for PDD (yes, the kids get frustrated and rage) and I wouldn't discount it. The NeuroPsych observed, tested, and talked to my son for a total of twelve hours before throwing out a fast diagnosis. Before that, professionals would diagnose my son in an hour. That never left me feeling too good. I'd especially want my child tested for a PDD if there is a speech delay and serious social problems, although sometimes, at three, they are hard to see. And, of course, PDD's and bp can co-exist. I hear 30% of all Aspergers people have bp. Lots of luck--you're certainly doing a great job as Mom and Fighter of The Kid!!! [img]/ubbthreads/images/graemlins/wink.gif[/img]

[SRL]

I believe this kiddo has already been through a fairly extensive evaluation that included a neuropsych and that while the other dx's were evident, PDD was ruled out at that time. This is a hard position for any parent just starting down the diagnostic trail to be in--having others "see" what the parent doesn't yet see or what isn't really there. It's probably prudent to start with the dx's that are clinically firm and that the parent agrees with first and then keep researching and keep your eyes and mind open with the rest.

T, actually PDD is easier to diagnose/rule out than BP at this young age--4 to 6 is the typical age range for a PDD dx unless severe language delay is present and then it's often caught earlier. What complicates things are the overlapping symptoms and the fact that unstable PDD kids often look BP in addition to the possibility they could be comorbid. One thing to mention though is that I am a big believer in borrowing knowledge and interventions from whatever camp helps my kid even if they just lean in that direction and don't have a formal dx!

[MidwestMom]

SRL (and you are so much more eloquent than me) you are so right about those overlapping symptoms and how hard it is to diagnose at such a young age. I think sometimes you have to treat the symptoms when they are very young, and meds if you find them helpful, and get the schools involved, but often you don't find out what's really going on with the kiddo until he's older and things become clearer. I do post on a PDD board too though and it's HARD to get a higher functioning ASD dx. Parents are pulling out their hair because they want interventions if their kids need it. It's not easy--not at all.

[totoro]

I totally agree with everything-
It was the nuero-psych who thinks it is bp not pdd. He spent the most time with her...His dx was sid, severe adhd, mdd and possible eobp. He was all for looking into a pdoc. It was the psych who first suggested pdd. and now this new psych also.
I think I have mentioned it before I don't mind the dx so much at this point, I just want to know how to treat her and where to start. As I read more I do see so much of the overlap, with a lot of these disorders.
That is what I said to the new psych, let's not worry about meds or dx for awhile lets just work on some modifications and therapies and see were that takes us for a few weeks. I can handle a few more weeks and I think she can as well.
This way he will be able to get to know her and I can continue my search for a pdoc, ugh...

Gosh why can't they just have a yes / no questionaire and you know what you have?!?!??! I guess we would miss out on all of this fun, and maybe we are all the type of women who really do need a challenge!!!

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