pediatrician. 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 Pervasive Developmental Disorder (PDD) (which is not an official diagnosis). 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 psychiatrist about 2 hours away at a hospital. Then I remind him I am going to see my pediatrician in 2 days and I am going to re-evaluation with her and see what is up.
I also kept reminding him that I was there not for the diagnosis but to work on play therapy for difficult child after he evaled her.

He then tells me after our next meeting that he would like to suggest to pediatrician 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 Pervasive Developmental Disorder (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 difficult child??? He said OK. I told him I wasn't to interested in medications, just yet. I also wasn't interested in some diagnosis from someone who wasn't a psychiatrist. I also said what about her possible Early Onset Bi-Polar (EOBP)??? He went on about the difficulty of diagnosis'ing at such a young age...which I understand, but it seems hard to correctly diagnosis Pervasive Developmental Disorder (PDD) also!!!

So we are going to give it one more try with him, he is supossed to be actually good with the kids

So then we saw the pediatrician 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 evaluation's said. My angel's were tired and fighting horribly, difficult child started stomping on easy child's leg in the room!!! I almost started crying.
That was when pediatrician. 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, difficult child 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 Sensory Integration Disorder (SID) and the AD/HD for now and we will see how treatment goes in the next 6 weeks... then we will re-evaluation.
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 husband and the video of the explosion and hopefully we will be doing better.... sigh. She also said wait until next apt to pursue the psychiatrist...

Things have actually been OK but I have had to limit all sensory stimulus outside of doctor 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 Occupational Therapist (OT) is going really great!!!

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

 

[smallworld]

Your friend is an angel. You and husband 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 therapist who makes a snap diagnosis without spending a whole lot of time with your difficult child. I would recommend pursuing a psychiatrist 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 Pervasive Developmental Disorder (PDD). So it is not an off-the-wall medication choice. However, it will not do anything for inattention or depression. And it does not work long-term to stabilize mood swings associated with BiPolar (BP). You need a mood stabilizer on board for that. by the way, 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 psychiatrist 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 by the way!!!

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

 

[totoro]

One more fun thing I did ask about a Multi-disciplinary evaluation... pediatrician 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 mother in law, who now wants to help... ugh... ( she told me before difficult child's sickness was a self fulfilling prophecy!) "why don't we set a up a web page for difficult child, 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 husband 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 difficult child 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 mother in law, 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 husband 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 difficult child...LOL
/ubbthreads/images/graemlins/919Mad.gif

 

[Ltlredhen]

I'm glad things seem to be coming along for you and difficult child. 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 psychiatrist. 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 mother in law 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 :crazy:.

Good going :warrior:

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 psychiatrists 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 difficult child'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.

Given the way your kiddo presents with some Autism Spectrum Disorders (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 Pervasive Developmental Disorder (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 Autism Spectrum Disorders (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 difficult child 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 difficult child 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!

 

[BusynMember]

I completely agree with going slow on medications as my son was on twelve medications and it turned out he had been constantly misdiagnosed. For diagnosoing a Pervasive Developmental Disorder (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 neuropsychologist. We took my son to a good psychiatrist and he misdiagnosed him as bipolar (three years on BiPolar (BP) medications). He has Pervasive Developmental Disorder (PDD)-not otherwise specified and is doing great due to all the early interventions and continuing interventions. Your son has some red flags for Pervasive Developmental Disorder (PDD) (yes, the kids get frustrated and rage) and I wouldn't discount it. The neuropsychologist 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 Pervasive Developmental Disorder (PDD) if there is a speech delay and serious social problems, although sometimes, at three, they are hard to see. And, of course, Pervasive Developmental Disorder (PDD)'s and BiPolar (BP) can co-exist. I hear 30% of all Aspergers people have BiPolar (BP). Lots of luck--you're certainly doing a great job as Mom and Fighter of The Kid!!! :wink:

 

[SRL]

I believe this kiddo has already been through a fairly extensive evaluation that included a neuropsychologist and that while the other diagnosis's were evident, Pervasive Developmental Disorder (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 diagnosis'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 Pervasive Developmental Disorder (PDD) is easier to diagnose/rule out than BiPolar (BP) at this young age--4 to 6 is the typical age range for a Pervasive Developmental Disorder (PDD) diagnosis 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 Pervasive Developmental Disorder (PDD) kids often look BiPolar (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 diagnosis!

 

[BusynMember]

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 medications 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 Pervasive Developmental Disorder (PDD) board too though and it's HARD to get a higher functioning Autism Spectrum Disorders (ASD) diagnosis. 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-psychiatric who thinks it is BiPolar (BP) not Pervasive Developmental Disorder (PDD). He spent the most time with her...His diagnosis was Sensory Integration Disorder (SID), severe adhd, mdd and possible Early Onset Bi-Polar (EOBP). He was all for looking into a psychiatrist. It was the psychiatric who first suggested Pervasive Developmental Disorder (PDD). and now this new psychiatric also.
I think I have mentioned it before I don't mind the diagnosis 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 psychiatric, let's not worry about medications or diagnosis 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 psychiatrist, 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!!!

:hammer:

 

[BusynMember]

Only problem is if he has any Pervasive Developmental Disorder (PDD)--which include Pervasive Developmental Disorder (PDD)-not otherwise specified, Aspergers and classic autism--(Pervasive Developmental Disorder (PDD) alone is not a diagnosis) then the early you start interventions the better t he child can do in adulthood, so if you even suspect he may have it, get him into early childhood intervention because it has a lot to do with his eventual outcome. Bipolar doesn't require these interventions, but the interventions won't hurt any child. They are hard to get without some Pervasive Developmental Disorder (PDD) diagnosis., but necessary if it's there. The symptoms may overlap, but the treatment is very different. There are no medications for Autism Spectrum Disorders (ASD), only some Autism Spectrum Disorders (ASD) kids take medications simply for the symptoms--they still need interventions to improve to their maximum and, yes, they can rage a good one, just like bpers. Make sure the psychiatric understands Autism Spectrum Disorders (ASD) as much as bipolar. Good luck.

 

[totoro]

MIdwestmom-
I see why you have concerns, you obviously have a history...unfortunately. The new psychiatric we are seeing is the guy that treats almost all of the Pervasive Developmental Disorder (PDD) in the area ( she was possible Pervasive Developmental Disorder (PDD)-not otherwise specified to clear it up) and he is the second one saying maybe??? He IS going to start treatment with Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis and all other diagnosis, while still evaluation'ing her.

My point was if you think she has all of these things or it may be a possibility, lets start working on them while watching and evaling. I just want to wait on the medications for awhile while we try some treatments. I am by no means denying/or not seeing any of the diagnosis's I am just trying to get someone competent and with some knowledge to justify the diagnosis's. So far the Occupational Therapist (OT) has been able to show me why she truly believes difficult child has Sensory Integration Disorder (SID) and severe ADHD. other than that????

He and I both know and agree that the earlier the treatment the better, especialy for Pervasive Developmental Disorder (PDD)-not otherwise specified. All treatment will help her at this point. like you said it can't hurt.

Thanks for the insight.

 

[Janna]

Hi totoro,

We've been through the rigamarole, too, of "is it Pervasive Developmental Disorder (PDD), is it BiPolar (BP)" - Dylan's been through a slew of diagnosis'es over his short life. He was ADHD. Then ADHD/ODD. Then we moved on to "Intermittent Explosive Disorder" (huh?!?!?!?!!!!!!!!), Mood Disorder, not otherwise specified, then Pervasive Developmental Disorder (PDD)-not otherwise specified (alone). Then back to ADHD/ODD LOL! What the ?!?!?!?!

17 medication trials, 19 including the 2 he's on now. 7 years worth. Stimulants, atypical antipsychotics, mood stabilizers, the works. It's frustrating, to say the least.

Unlike you, I do tend to think the diagnosis is important. Yes, treating the symptoms is just as good, however, if you've got a Bipolar child, ADHD medications won't work. Pervasive Developmental Disorder (PDD) kids aren't usually prescribed medications, so if you've got a BiPolar (BP)'er, again, getting tons of Pervasive Developmental Disorder (PDD) interventions (which could help your BiPolar (BP)'er anyway) with no medications, well, in my opinion, I don't see how much success you'll get from that.

My son has both, Bipolar and Pervasive Developmental Disorder (PDD). Let me say, that we have done every form of behavioral mod and had more interventions/services in school than anyone I know. Unfortunately, with the Bipolar, none of them were successful without the appropriate medications. So, at this point, IF your child IS Bipolar (and finding out is indeed a long haul), medication, in my opinion, is a must. I can tell you this because my out of control son is now almost a easy child because of the medications. It's made a 110% difference in his life thus far (although it's still early lol).

So, it sounds like you're really busting your tail to find out what is going on with difficult child, which is super. However, I wouldn't shun the medication route either. If your child is emotionally unstable, medications may just be what you need to get difficult child on track.

Hugs to you :warrior:

 

[totoro]

Janna
It isn't that I don't think the diagnosis isn't important it is that we have everyone arguing over wether it is Pervasive Developmental Disorder (PDD)-not otherwise specified or Early Onset Bi-Polar (EOBP). With little actual treatment, so I just want to start some treament and see what comes to surface as treatment is on going...

After our apt. this morning everyone now agrees with us. they all want to wait 6 more weeks and see what surfaces. I think like your difficult child janna, she has a lot of things going on and she is only 5 so they feel the Pervasive Developmental Disorder (PDD) will only get better if we start treatment.
As for the Early Onset Bi-Polar (EOBP)- they want to wait and see how she reacts to treatment and then in the future medications. I think we are all in agreement that we are going to have to medicate this child one day but everyone would like a little clearer picture as to what we are dealing with.

The child therapist who treats all of the Pervasive Developmental Disorder (PDD) in are area wants to make Pervasive Developmental Disorder (PDD)-not otherwise specified here primary diagnosis as of now. He is contacting her pediatrician. today. He feels we will have to medicate her for the severe adhd down the road, and then see what and where we are at.

I am ok with all of this. I just don't really know what to expect with the Pervasive Developmental Disorder (PDD), how does the future look for these children... I believe she is mild at this point. He also said he thinks you really see how good/bad the Pervasive Developmental Disorder (PDD) is when they hit about 3rd grade as far as development??? Has anyone seen this.
He also said they usually would medicate for her other disorders, like the adhd. But Pervasive Developmental Disorder (PDD) by itself is usually not medicated,right???

With your son Janna when did you know he was BiPolar (BP), did he become manic or was he diagnosis'd before mania occured. Our difficult child seems to cycle, but they say that can be the Pervasive Developmental Disorder (PDD) or the adhd/Sensory Integration Disorder (SID).... sigh...

Anyway I just feel slightly overwhelmed somedays, and just want to do what is best for difficult child. I just don't think a little person should have this much torment.... I am sure you all can remember back in the begining, you feel like you want to protect your difficult child's and all you want to do is not f' any thing up for them, yet you feel like that is happening over and over....

Thanks for everyone's support and wisdom yet again!!!

 

[Katie H]

Hi Totoro,

I have a five year old daughter too! Her diagnosis is Asperger's. It is hard to get a diagnosis at this age, I can totally relate. We had to go through many professionals who just said "immature" "wait and see", etc, before we found a good developmental pediatrician who finally figured it out. (((hugs))) to you, you sound like you are doing great at advocating for your daughter!

Anyway, I can't really comment on some of your questions about bipolar because I don't have experience with that, but did want to chime in on some of the spectrum questions. First, regarding some of the interventions/therapies. I think they can be great for ANY child, even if your daughter does not turn out to be on the spectrum. My daughter's social skills group is the best - they teach how to be a good friend, how to be a good sport, how to listen and ask appropriate questions in converstation, how to give and receive compliments, etc. Any of my friends who know about this group say they wish their NT (neurotypical) children had something like this. Overall, this group and her work with a speech therapist (doing pragmatics - social speech) has helped her so much at school with making and keeping friends.

You mentioned 3rd or 4th grade as a turning point for children on the spectrum and I have heard this too. Supposedly there are two factors. One, the learning moves away from the rote memorization stuff that many spectrum children excell at. Suddenly, children who had always been academic stars may begin to struggle with reading comprehension, more difficult math etc. The second is that most children make a leap socially around this time. They begin to make friendships built around common interests. For a child on the spectrum whose interests may be a bit unusual, they may find themselves left out. Children on the spectrum may continue to enjoy certain "pretend play" type games that their peers outgrow at this point. This is what I have heard at least, I have no first hand experience. I will let you know in three or four years (lol!).

Finally, the future question. This one depresses me. The statistics aren't really that good. I think Midwest Mom actually posted an article on the main board about autistic adults recently. My hope is that because of more awareness, early interventions, etc, the future can be bright for children on the spectrum. But, you cannot really predict. I still contribute to my daughter's college fund and hope she will use it someday, and find a career, marry, etc. But, I am also prepared to support her and take care of her if that is the way things turn out. If it makes you feel any better my family has several undiagnosed aspergerish people - including an engineer/physicist, a lawyer and a psychiatrist.

I think the more you can do for your daughter now, the better chance you will give her. For my daughter she has improved so much sometimes I think - who is this child. But, I don't for a second stop or think that we do not have a long road.

Whew, sorry this became such a novel! Hope some of that helped!

Take care,

Katie

 

[SRL]

My son who has Autistic traits that lean in the direction of AS is now in 4th grade. He had his worst year in first due to school anxiety and has made steady progress in all areas, including the social realm, since then. I was told by an experienced Autism consultant that 4th grade was often the turning point socially because social demands increase at his time--more subtle, more nonverbals, more abstract, etc and that a lot of kids can't keep up. The year is young for my kiddo yet but I can say happily that even though he is a little edgy my son has really good friendships with two boys in his class plus gets along well with a few of the girls as well. When I say good friendships I mean they look exactly like you would hope--they go back and forth on playdates, talk on the phone, not to mention fight like brothers for which the three of them did time in the principals office on the last day of school last year. No one, and I mean no one, who assessed my son along the way ever gave us any hope that he'd be at this point socially today.

Academically I have seen a HUGE leap in expectations between 3rd and 4th based on a magical ;-) developmental leap all students have made over the summer. We're talking jumping from having to be responsible for one page of math homework 4 nights a week to having to remember to bring home any number of the 10 various items in the desk depending on what wasn't finished during the day. Far more is required in terms of writing and supplying more developed answers and the upshot so far is that my son has dropped from almost all A's to almost all B's.

Just this past week I checked what adults with AS were saying about their worst years in school and many cited 5th, 7th and junior year in HS.

The moral is to take what those with expertise have learned as a caution and as motivation to work on these issues with your child but don't count the outcomes until you've arrived. Yesterday I was in a school meeting with about 3 inches of paperwork from various evaluations, reports, IEPs, etc. sitting in front of me and what I heard from both the teachers and the new principal is that had they not known or been aware of my son's past history or diagnosis there's no possible way they would have been able to pick up on his differences because they are so miniscule. We're talking about a kid who 3 years ago refused to go to school and whose every issue he'd ever had was at record high levels.

Have hope, moms, and never underestimate your children or yourselves because you just never know what lies ahead. Indeed many adults with this disorder have significant struggles but keep your eye fixed on today.
SRL

PS. Pervasive Developmental Disorder (PDD) itself is not medicated for but many Pervasive Developmental Disorder (PDD) individuals do use medications at least somewhere along the way to help with various issues such as anxiety.

 

[totoro]

Thanks Katie and SRL-
Very good info. I do believe in my heart that she will grow up to be a fine person and happy. We will keep working towards this goal- no matter what.


We are also trying to gleam as much info as we can about experiences because we will probably be entering the public school system next year, I want to be as well equiped as possible...

thanks :warrior: