Finally have a Diagnosis

Janna

New Member
I'll jump in with MidwestMom on the Autism end. I, too, have an Autistic child that was once diagnosis'ed Bipolar Disorder (still carrying Mood Disorder-not otherwise specified).

I will tell you a story from my own personal experience. When my son, Dylan, was 9 (he is 12 now) he was diagnosed Bipolar Disorder-not otherwise specified. Put on Bipolar medications and did well for, ohh, about 8 or 9 months on the drugs. The psychiatrist (Board Certified M.D. psychiatrist of 20+ years) says to me he's Bipolar. During the course of this 9 months with this psychiatrist, I take Dylan to a neuropsychologist, with expertise in Autism studies, 20+ years experience here, too. He does all the Autism testing, spends a ton of time with my son, and meets with us when he's done. He says to me, "I don't know what to tell you about the Bipolar, I don't see any of that, but your son is Autistic and should be given Autism interventions" and gave us a boatload of Autism recommendations. I take this neuropsychologists 14 page report to our psychiatrist and you know what he says to me? "He's crazy, there's no Autism, your son is Bipolar".

Who do you believe? They've both been doing this their entire career. One sees one thing, one sees another.

The thing I've learned about doctors is, they make their best educated guess. They all work from the same book, they all take the same information from the parents, but until they are living in your house, listening to your child, seeing how you deal with your child, and being WITH the child (for more than a 15 min medication check) they don't REALLY know.

Have you looked into any types of interventions? In home therapy, maybe. Behavior modification (maybe reading Ross Greene's book, trying charts, things of that nature). What kinds of things trigger your child? What interventions are currently in place? Are they working? Things could be happening at the sitter that may seem so silly or stupid to the sitter, or to you, that could be HUGE issues with your child that you may not even realize. My son, he cannot handle little kids. I had to quit my job to stay home so he didn't have to interact with them. It's just one of those things that, he could be playing on the floor with something and a 4 year old could walk up and grab it from him and it would set him off into so much anger! And, if the babysitter is busy, didn't see it, and he's screaming - she's concentrating on the screaming, not the incidents that led up to it. Just looked like he was being a pain in the you-know-what and a big brat, when that just wasn't the case. And, that's hard to decipher when you aren't there.

I don't have advice on the medications. I wish I did. My kid's been on them all. Every mood stabilizer, every antipsychotic and every stimulant. Antidepressants, too. Were any of them really beneficial? A couple, for a little while. In the end, I wish I was more cautious. Does he need something? Yes. Did he need to try over 30 of them? No. Just be aware and educated. Make sure you get online, read all the side effects, consider your options. Most of the drug manufacturers have their prescribing info right online for you in Adobe format, so you can educate yourself before you take that step. And, every single child is different. My son had hallucinations with Rispderal. My very good friend has her son on it, been on it for 3 years, with excellent results. Just an example.

Good luck with the diet. I've heard it helps alot of kids. We didn't have the guts to do that here LOL!
 

BusynMember

Well-Known Member
Janna, hey!!!!!! LTNS!
Glad to hear about Dylan and hope the Autism Spectrum Disorders (ASD) interventions are working.
Many Autism Spectrum Disorders (ASD) kids are moody. My son isn't. I don't care if my psychiatrist has 50 years experience with bipolar; he was wrong about my son and knew nothing about autism as when he told me, "He can't be autistic. He can go from one room to another without raging." Ugh! That was a big clue.
Also Lucas doesn't need medications or have major meltdowns. I truly don't know how ANYONE could have missed the Autism Spectrum Disorders (ASD). And I don't know how anyone could have thought he had bipolar. I kept hearing "Well, um, not all bipolar kids rage." Ha! Anyone know one who doesn't?

Anyway, glad to see you. Write me!
 

lovemychocolate

New Member
I wanted to barge on the part that you wrote you gave a copy of Dr. Greene's book to your child's teacher. How was that received? Is this a public or private school? Curious. Thanks.
 

klmno

Active Member
I asked my therapist today about the controversy/fine line between asbergers and BiPolar (BP) diagnosis's. Actually, I told her I was asking because I don't see why there appears to be such a fine line if the causes are that different. She said 1) the younger the child the less clear things are and neuropsychologist testing can vary from time to time with BiPolar (BP) and psychotic patients and 2) a whole lot of people don't "fit" neatly in diagnosis criteria for one thing or another so they are given the diagnosis that most closely resembles the symptoms they are exhibiting and sometimes that can change.

That's just her opinion but she's a licensed (phd) psychologist who interned partly at psychiatric hospital and Residential Treatment Center (RTC) for kids. I think there might be truth in it, personally.
 

Mandy

Parent In Training
klmno~ Thanks for asking that question! I am also going to ask his psychiatrist the very same thing thurs. I figured that would be their answer, but I still want to plant that seed so she can keep looking for any "red flags" as she put it!:D
 

totoro

Mom? What's a difficult child?
Mandy did you say that your psychiatrist is letting you and you Pediatrician decide on medications? I hope I am wrong? If I am not, I would try to not go this route, Peds are great for our kids over all health but not for medications regarding Mental Health.
I would not let our pediatrician RX K's medications. and I really like her.
The only way I would consider doing this is if I had no psychiatrist!
The other thing is, Autism does run higher in families with a tendency to have BiPolar (BP). My 7yo has classic BiPolar (BP). No signs of Autism.
My 4yo, while she is not diagnosis'd as having Autism, she has sensory processing disorder (SPD) and anxiety, she shows a lot of Autism symptoms. Always has. But no-one will diagnosis her because she makes great eye contact and she *only* has cluttering of speech when she is anxious.
At such a young age I wouldn't worry too much about the diagnosis it might change as he gets older.
If they are treating the symptoms that is great, especially if you have a great team.
You may even hold off on medications for awhile. We started with an Occupational Therapist (OT) for K and did that as long as we could before we had to start her on medications.
But like I said she was classic BiPolar (BP). Violent rages for hours.
She is an Ultra-ultra Rapid cycler with Suicidal Ideations and Auditory Hallucinations. That was at 5yo.

I know it tough and scary to do all of this stuff. Hang in there you are doing the right thing asking all of these questions. The mommy gut is a powerful thing, go with it!
 

Jena

New Member
Hi

I"m jumping in late i just wanted to wish you luck. It's good to have some answers and some insight. now you can begin the work.

I also have a difficult child with BiPolar (BP). they just officially diagnosis about 2 mos ago. I went thru 3 diff pyschdoc's because everytime they started singing the BiPolar (BP) song id' run and go find another lol. silly me. we have no diagnosis BiPolar (BP) in our families. yet difficult child tends to be classic with the swing in moods and sleep patterns. she's BiPolar (BP) not otherwise specified because she doesn't fit it to a tee.

yet i've had tremendously great result with her, in handling her anxiety disorder between the medication and therapy. She's on an ap now, it's calmed the cycling to an extent and handled some of the anxiety as well.

i also did routine, routine because she's Obsessive Compulsive Disorder (OCD) also. yet now i'm switching it up a bit so that she knows that things do not have to be just "so" in order for her to be safe and ok.

i wish you luck. gettinga diagnosis can be an overwhelming and scary thing at first. sounds like your handling it great.
 

Mandy

Parent In Training
totoro~ Yes, his psychiatrist wants his pedi to presribe medications because of his age. It's like no one wants to take responsibility. I would be holding off on the medications but since we have been struggling with this since he was abt. 18months old we really need to get some intervention going. We are going the natural routes but in order for him to function I truly believe he will need a medication. That's just my instinct as his parent:D

Thanks everyone for your great responses! I will let you know how it goes today... only abt. 45 min before I leave! I always get nervous before these appts! LOL The good thing is that I am meeting without difficult child to hear all her recommendations so at least I can concentrate this time. At the last appointment. I was trying to listen to her and keep difficult child's feet out of my face at the same time. He was getting bored so decided to lay on the couch and dance in the air:D He does make me laugh sometimes!!
 

TerryJ2

Well-Known Member
Arg, Janna, that's incredible. How frustrating. How stubborn!

Mandy, good luck today. Let us know how it goes.
 

Mandy

Parent In Training
Well I am now back and feel so much better abt. everything. The first thing I learned is she is a psychologist not a psychiatrist... so she does NOT prescribe the medications. The second thing I learned is because of the major shortage of psychiatrist's in our area it is nearly impossible to get into one. Most are not accepting new patients:( She did however give me a name of a pedi that she highly recommended because she knows this pedi has been to seminars and has taken it upon herself to learn abt. medications ect. because of the shortage. We have an appointment with her next week!!

We also talked abt. the Mood Disorder diagnosis, aspergers, and adhd. She said she has studied early onset BiPolar (BP) in children for the last 5 yrs and thinks it is highly probably this is the diagnosis he will get when she reevaluates him in 2yrs. She thinks it is too early in his development however to rule out aspergers. He did score very high on his IQ test but was below normal on his social and coping skills were his biggest. She thinks his agressive behavior has a lot to do with why his social skills are so low. He also scored high on something else I can't remember that they normally see low scores on with Aspergers. She said with the Mood Disorder-not otherwise specified we can do the IEP through school within the (ed) catergory. I also have to decide whether he is ready to start school this yr or not?? So I think the great news is we are moving forward, and I feel comfortable with his diagnosis for this time.
 

Mandy

Parent In Training
I looked at his evaluation. and he scored lowest on adaptive behavior, communication skills (receptive language), and a significant deficit in coping skills. He also scored one point below avg. in fine motor skills, but not enough for her to be overly concerned at this point. He also scored surperior in visual spatial processing.

So with all that I think i will still be keeping an eye out for anymore Asperger's traits.

Thank you for all of your help:D
 

susiestar

Roll With It
It is really HARD to diagnosis a child. So many of the disorders run together. I truly feel the Asperger's diagnosis is the correct one for my child. It was the first diagnosis we got (from a doctor I truly trusted - she even refused to let any of hte staff use ANY pens, promo items, etc from the drug companies, so I felt she wasn't just pushing drugs on us - she said the drug reps could be misleading and while she took the samples because people NEEDED them, all other stuff was donated to some thrift store).

Anyway, we ran the gamut of diagnosis's over many years. The ONE medication thing I would do differently if I had a "do over" would be to trial mood stabilizers FIRST, before ANY other medication. Other medications can interfere with how the mood stabilizers work. There is actually a protocol for treating bipolar in kids/adults.

The protocol is from the Academy of psychiatrists, whatever the formal name is (someone will have it). It calls for placing the patient on mood stabilizers, giving them time to work, and even adding a second mood stabilizer if the first is not enough.

AFTER the moods are stable, then any other symptoms can be cautiously treated. Bear in mind that ADHD medications, anti-depressants of any kind, and many other medications can cause a person with bipolar to cycle. So these medications are added slowly and cautiously if needed.

Often though they find that with stable moods the person does not have the other problems.

With Wiz I don't think we ever got a clear picture after we started medications. He has unipolar depression and if we take him off of the anti-depressants for a medication-wash then he tries to kill himself. We tried it 3 times and won't ever do another medication-wash. It scares us too much - and scares him to have those thoughts.

It could be that your difficult child will show up with bipolar in a few years, or an autistic spectrum disorder, or something else. It RARELY is "just" adhd, and often if you treat the root cause any ODD behaviors go away.

I would STRONGLY suggest you do NOT have a pediatrician prescribing medications for your difficult child. Pediatricians are NOT trained or informed on the medications and test that need to be run to check various things like heart issues and liver issues, etc.....

Find a child and adolescent psychiatrist (with the MD) and have THAT doctor do the prescribing of psychiatric medications. It really is far out from the realm of problems a pediatrician deals with.

This is just my opinion and experiences. So use what info works for you and ignore the rest.

Sending LOTS of support!

Susie
 

Mandy

Parent In Training
I would STRONGLY suggest you do NOT have a pediatrician prescribing medications for your difficult child. Pediatricians are NOT trained or informed on the medications and test that need to be run to check various things like heart issues and liver issues, etc.....

This is why we were referred to this pedi. His psychologist said that because of the extensive research, study etc this Dr. has done that she is as close to a child psychiatrist I am going to get. Child psychiatric's in the area are not taking anymore patients no matter the situation because they can't even get their current patients in for an appointment for months. She also assured me that this pedi does all the monitoring for the medications so I feel pretty confident abt. using her. The great thing is a coworker of mine actually knows of her and said her mother also worked in her office. She said she is a great Dr. and has nothing but praise for her, and believes she studied this so intensively because the Dr. has a child effected with a mental disorder. How great would that be to actually get a Dr. that is also a parent of a difficult child!!! I am psyched abt. the appointment. now:D
 
Top