[QUOTE=emerald_521]
We both know children's isn't the place to be!
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IMO - Milwaukee Children's Hospital is not the place to go if you are seeking an ASD diagnosis for your child. I have heard this from teachers, therapists, and other parents.
They do have a good speech clinic, and of course they have OT and PT.
We also went their for hearing evaluations for both boys.
No you don't sound like a crazy person at all. I've been there and will be there again. My son had some sever behaviors and he calmed down amazingly when we started efa's I can't get him to take them anymore and the behaviors are starting to come back. My son was agressive and hyper and....But there have been physical things we had to take care of first like getting tubes in his ears and my son also used to gag himself until he threw up. That went away after we had his adnoids out. It was worse than even the ent suspected almost completly blocking the back of his nose. He had constant runny nose and ear/sinus infections which he was put on constant antibiotics which messed up his gut. He also had acid reflux. With the reflux meds and the probiotics and l-carnitine and efa he was doing really well behavior wise, but like I said he is refusing the efa's so he is not as calm as he was.
I live in fear of what his future will be like but it seems like almost everything behavior wise could be traced back to some sort of physical thing. Even if only in hind sight. He is nonverbal so can't tell us how he feels except through behavior.
I wanted to say the autistic behaviors can come in cycles. My son's did. Behaviors can even cycle with the seasons. I would not be so quick to say he is bipolar until EVERYTHING else is ruled out. With a dx like bipolar Dr.'s will want to put him on a lot of meds that may make him worse if that is not what is going on.
We both know children's isn't the place to be!
[/QUOTE]
IMO - Milwaukee Children's Hospital is not the place to go if you are seeking an ASD diagnosis for your child. I have heard this from teachers, therapists, and other parents.
They do have a good speech clinic, and of course they have OT and PT.
We also went their for hearing evaluations for both boys.
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That was our first step was the hearing test and thats the only test we did thru childrens. I have heard horror stories about childrens for autism diagnosis.
emerald - it does sound like bipolar to me, just because the moodHolly, yes the seizure meds are usually meds that are used for bipolar too, but at different levels. for example when we are using depakote for seizures we keep his level around 80-90...when we tried it to help behavior they added more pills and had his level around 120. Problem was as we raised the depakote the behavior only increased. I thought for sure she would say then it meant he didn't have bipolar, but she just said it wasn't the right med for him.
We tried a few others, and now have just recently started lamictal. Right now because his depakote is failing to control his seizures we are looking for seizure control, so I honestly don't know if the lamictal needs to be at a higher level for mood than it is for seizures. I do know that the long term plan is to hopefully remove both the depakote and zyprexa and hopefully go just on lamictal, but that is going to be a lengthy process. I will ask more though about the lamictal and what levels are needed to help with moods.
Zayzer, I don't know what efa's are.
Thanks for all your help everyone!
EFA's----Essential Fatty Acids.
Fish Oil Capsules
My son was dx'd bipolar at 5y. At 6y--it was HFA and Bipolar. Between 5y and 6y----he was on so many meds. He ended up OK with lithium, tegretol, risperdal combo. It wasn't wonderful though. No side effects---but he behavior wasn't "cured".
When he got the HFA dx at 6y---I took him off all meds. Risperdal had to be added back within 3 months. 3 more months later I wanted to try something for his impulsiveness. We had tried the stimulants and his anxiety would go sky high! We tried strattera and he has not been the same child since! He has been on this risperdal and strattera combo for over 1 year now and he is not the same child as he was a few years ago.
I don't regret trying the bipolar meds. It's what needed to be done at the time.
Since your child has seizures anyways---isn't he already on anti-convulsants? That's what is used as mood stabilizers and lithium. Antipsychotics for aggressiveness/violence.
At 7y--my son got the bipolar dx ruled out. (he shouldn't be doing so well on strattera if he was bipolar)
I wanted to add that the just heard something on bipolar in kids on NPRAmberwaves--I think the thing the dr is talking about as being bizarre are his tendancies to lick everything, and his need to mouth and gag himself. At one point in the eval he referred to these as bizarre behaviors..."Mason exhibits some bizarre behaviors, such as trying to stick toys down his throat to induce vomiting. Mason was licking his mother throughout the session. I see these as fairly psychotic symptoms."
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What?!!! I'm quite certain it's a sensory issue. It's even addressed in the book "Raising a Sensory Smart Child." My youngest went through a phase where he licked and stuck his fingers down his throat. There was a boy in his class with ASD who liked to mouth and lick the seatbelt on the bus. I don't understand how the doctor saw this as psychotic.
[QUOTE=WIMomOf2][QUOTE=emerald_521]Amberwaves--I think the thing the dr is talking about as being bizarre are his tendancies to lick everything, and his need to mouth and gag himself. At one point in the eval he referred to these as bizarre behaviors..."Mason exhibits some bizarre behaviors, such as trying to stick toys down his throat to induce vomiting. Mason was licking his mother throughout the session. I see these as fairly psychotic symptoms."
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that is an sensory thing, SID. Both my kids do licking of toys and sometimes me. Take him to an OT, another some psychologists have no idea about sensory integration.
That reminds me Last year I took J. to a uneducated psychologists and I told him about her, licking, toe walking,flapping, echoing her pdd questionarre and he goes do you even know what autism is? Yes I do and he goes let me tell you.What an ace! I'm really thinking about turning him in and he didn't even have AS paperwork. He had no idea what was wrong with her. Then I found out this year that my dad's side does have Asperger's.
I took her in to a dev. ped that work at the childrens hospital in Denver and watching her in action (spinning, flapping rep speech, lack social Q's, hyper) He walked back in with the 2 AS questionnaire's. J results were in the red area, she had AS. That can explain why she scores so high sign in the brain pdd test 158.
Personally I would not accept a dx of bipolar at your son's age. Especially since he has pdd as some of the symptoms overlap. You would think that if he did have bipolar the meds would work better. Meds don't always work well with pdd. I would find a Psychiatrist that specializes in autistic disorders. He has seizures also which can affect behavior. Another reason not to accept the bipolar dx right at this moment. I read an article recently that said that bipolar disorder is being over dx in children. What can they do for him in a psychiatric hospital except totally traumatize him. Unless he is a danger to himself or to other people that should not have been even suggested.
You and your gut are your childs best advocate. Keep all your reports from this jerko doctor and get rid of him. I know Mason's has been through alot of docs and evaluations but I bet the right one is out there for him. Don't give up and keep doing the great job your doing.
It seems like you posted previously that this Dr. mad his assesment in about 20 minutes?
(((hugs)))
I was just thinking of something that no one has mentioned yet, could a lot of these behaviors be caused by subclinical seizure activity?
I know with Zachary we've come to learn the different causes of his completely out of control behavior, whether it's due to him being hungry, tired, or underlying seizure activity. We're learning much of it is due to underlying seizure activity.
Do you use ativan at all? Sometimes Zach goes into these extreme hyper moods, where he is giggling and seems very happy, but he is entirely non-responsive when we try to get his attention (it can go on for hrs). This is one of the times we use ativan, and it brings him right out of the behavior and he's able to focus again.
It's hard when epilepsy is a part of autism, as it's sometimes very difficult to separate the two. Of course, it never helps that the neuro usually knows very little about autism, and the behavior docs know very little about seizures. In Zach's case we've found many drs along the way find it's much easier to blame everything on autism, and do nothing to help.
Zachary's behaviors are very difficult, and never once have any of our drs. suggested he needs to go to a pshychiatric hospital (he's 7 yrs old). This dr would scare me too.
Good luck.
Zayzer...that seems to be the one thing that I keep asking myself...why aren't the meds really helping?
Mason does have these mood swings. They are just so bad sometimes...I look and look for a reason and just can't find it. And I am starting to see what Donny's mom referred to as cycling. He seems to go in these spurts, but they last a week to a week and a half. He can be in a good mood, but it's more than that. When he is actually a happy child, he is wild! And I'm talking so hyper and absolutely no attention span. He is destroying the house, not because he is angry or mad, but just so unbelievabley hyper...and along with this I would say is his worst time of defiance. I just can't get him to comply with anything. Then he goes into this span of nothing. He's not mad, he's not happy, he's just there...this is where I get the best listening from him. He's willing to work, he is willing to listen, he gets a lot out of his reward system during this time. This is the time where I get a lot of attention, but it's specific things. He will want to rock on his horse and listen to music for hours! Or just sit and watch TV, or play computer. He sticks with what he is doing but the lack of enthusiasm is there. He isn't really proud of himself for all of his acheivements. And it seems we get these episodes during this time. For 1-2 hours each day he does go into meltdown mode. It just starts and he goes, crying and screaming for that duration of time and as fast as it started, it stops the same way. Then we move into angry Mason...this is where he is angry and frustrated the entire day...from the time he wakes up until he goes to bed. You can't talk to him, you can't teach him anything. Every little thing is just the end of the world to him and he spends the entire day crying and yelling, sad and angry, back and forth. His mood swings are the worst during this time. We walk around on pins and needles during these days, because we just can't figure out what is going to set him off.
Now I can't be 100% sure, but this is why I want to start some sort of documentation on his behavior...because the more I think about it, it seems to cycle itself...I'm just not sure if it really is this consistent or if I'm just looking for it to be.
So with all of this, I read about bipolar and it does seem to sound like Mason--but again--that age old question, why isn't anything helping him?? If it was really bipolar, shouldn't something help? Sometimes I think the meds are helping, but what if I'm looking at it during one of his times where he is really doing good listening. Or he is hyper this week, so I think...well at least he's not angry and sad. This is why I need to log this...I need to see if it's really like this or I'm just seeing something that isn't there...but from experience here, does this sound more bipolar or is this behavior fairly typical of ASD too?
Amberwaves--I think the thing the dr is talking about as being bizarre are his tendancies to lick everything, and his need to mouth and gag himself. At one point in the eval he referred to these as bizarre behaviors..."Mason exhibits some bizarre behaviors, such as trying to stick toys down his throat to induce vomiting. Mason was licking his mother throughout the session. I see these as fairly psychotic symptoms."
I started a thread awhile back and asked about this...I thought it might be some sort of stim or sensory input...and everyone here thought so too. Apparently this dr. doesn't agree.
I do think I am going to contact this other facility that I have been told about...but I want to wait a little while...just look at it from an outside view, as much as a mother can, and document etc, so I can go to this appt with this info and say "this is what is happening...please don't dx, just help me!!" Does this sound like a plan, or should I just call now and get this going? What do you all think? I'm usually not one for waiting but I'm afraid if I go in now, I'm just going to get the same things I always get, kwim?
We have diastat but have only used with with TC seizures that last longer that 5 minutes or his CP when he is having several in an hour. Wow, I wonder if I should try it one of these times when he is having one of these breakdowns for no apparent reason? Maybe I should call his neuro and just see if this could be an option? I suppose though, it's a valium type med...wouldn't that bring you down whether it's seizure related or actual psychosis? Might not give us an answer...but would help short term.
I even read that in the out of sync child book if I can remember. Thats not psychotic its sensory. My child also licks stuff. Like right now he's licking our fish tank
I really would like to know what WEAP office you went to. Madison or Milwaukees one. Because I wish you had the dr we had at the milwaukee one she was really nice.
That's what I was thinking!! Sensory. I actually just got the book, "Out of Sync Child." Although I'm in just the beginning part.
Mishy we went to the DePere office.
My youngest was diagnosed by Dr. Deborah Palmer-Seal at the Milwaukee WEAP office. She spent between 2 & 3 hours with us, and I liked her. Actually, I thought the people at the Milwaukee clinic were very nice. We almost went with them, however I wasn't comforatable with the Lovaas approach for my son. We ended up going with a VB/ABA provider at the recommendation of our speech therapist.For you Wisconsinites--I was told about the center in Madison. Is it the Weisman??
I wrote it down somewhere and I've been ripping through my pages and pages of stuff and can't seem to find it. I know it's here somewhere!
But what have you all heard about this place?
[QUOTE=WIMomOf2]My youngest was diagnosed by Dr. Deborah Palmer-Seal at the Milwaukee WEAP office. She spent between 2 & 3 hours with us, and I liked her. Actually, I thought the people at the Milwaukee clinic were very nice. We almost went with them, however I wasn't comforatable with the Lovaas approach for my son. We ended up going with a VB/ABA provider at the recommendation of our speech therapist. [/QUOTE]
We had Dr Ruddmann :)
Sorry, I haven't heard anything about them. I could only find their address. 2nd Round Mom might know more since she's from Madison.
Madison
Waisman Center, Clinical Services Unit (CSU), U of Wisconsin-Madison.
Waisman Center Developmental Disabilities Clinic, 1500 Highland Ave., Madison, 1-(608)-263-5815. Dr. Lewis Leavitt, Developmental Pediatrician.
ETA - Here's their web page:
Thanks! Now I don't have to spend another hour searching for it, lol.
I recall 2nd round Mom telling me about it once too. I have heard from several people in town here that they are the best place to go. We both know children's isn't the place to be!
I do have some concerns with it, one being it's so far away...how much can they offer us when it's a 3 hour drive just to get there. It's not like I can bring Mason down once or twice a week, with him being in school. But maybe they can give me some suggestions. We can try them, see what, if anything is working and just go down once a month or every other month? I guess that's something I need to call them and discuss.
UGH, I probably sound like a crazy person myself. I am just overwhelmed and confused.
bi-polar at such a young age? My hubby's side all the women are bi-polar and an uncle. Signs normally show up in teen years and adulthood. That has been the case with hubbys family. Another thing bipolar seems to run in families. I would take him to a different Dr. and get a diagnoses. I'm having a hard time believing kids really have bi-polar at such a young age. I'm not saying it is not possible but I'm wondering. I can tell if someone has bipolar in mins.. That is bec the moods swings really get on my nerves and it is none stop. Moods swings are worse with bio-polar female than males .Thank you so much guys! It was late last night when I wrote this, it had been sitting in the back of my mind all weekend, my dh is one to just regard everything so it's hard to even vent to him. So I was so overwhelmed with emotion last night!
Donny's mom--I agree, I see a lot of comparison's in Donny and Mason. Mason is the exact same way with rewards, sometimes they work sooo well and then then all of a sudden they seem to make him worse! I am going to start keeping a chart (I haven't quite worked out all the details yet) of Mason's moods. When you talk about Donny cycling--is it fairly consistent? When I think back, I think Mason's cycles seem to be very consistent. I want to start tracking them so I can see if there is any sort of pattern to them...it might help me to know exactly what type of temprement I am dealing with. It seems I find something that works great for him, and then a couple of weeks later it's causing more problems than not. Then I tend to drop it, maybe if I had a better log of his behaviors I might see that I can go back to this particular reward or learning style depending on his moods. Do you do that with Donny? As far as hallucinations, I really haven't seen anything that would make me think he has them. A few times he has mentioned things to me like smelling certain things that aren't there for example he has told me he smells tacos, or swimming pools. But these episodes seem to heighten with his seizures, and his neuro told me she thinks they are auras. He does a lot of irrational talking. A LOT of scripting, but sometimes he is just babbling things, but nothing that has ever made me think he might be hearing voices. I will take a closer look though, to just what he is saying at those times.
Kathy--the dr that dx'd him was a child psychologist. He works for a program called WEAP (Wisconsin Early Autism Project.) You would think he would be very knowlegable in autism considering, but the more I hear about WEAP, the less and less I like. I have heard that they only accept children that will succeed into their program. I have just recently talked to a Mom that saw this dr and she said he was telling her all about different meds she needs to try with her dd. But from what I have heard only psychiatrists can prescribe meds, not psychologists...so I don't know why he would talk to her about meds when he can't even give them to her.
Carmen--thank you! I hate the labels too. It just seems that everyone wants a label around here to help us! The school, the private therapists etc. It's exhausting to even explain to them all I have been told over the last 3 1/2 years! I mean it would be nice to say, "Mason has ________, and this is how you treat it"...but that isn't going to happen. And it kind of bothers me that people feel that way anyway, because like the saying goes...if you've seen one child with autism, you've seen one child with autism. I think that is true for any disorder actually. I've seen so many doctors and all I want to hear is "let's try this and see if it helps," rather than he is dx'd with this and this and this. I don't want a dx, I want help for my son. But you are right, I am overwhelmed, so I need to slow down and stay calm.
Well once again, I wrote a book, lol. I can't tell you how much you are all helping me deal with all of this. Thank you sooo soooo much! I wish I could express just how much everyone here means to me!
I received in the mail this weekend an evaluation report from a doctor we saw back in the middle of Sept. I don't know if you remember my post about the doctor that was trying to tell me that Mason needed to be committed to a psychiatric hospital...well this is what his diagnosis was:
AXIS I:1. PDD-NOS 2. Bipolar disorder with psychotic features 3. Oppositional defiance disorder.
AXIS II: No diagnosis
AXIS III: Seizure disorder; History of Chronic Otitis Media
AXIS IV: Problems relating to other people
AXIS V: GAF=31; highest in last year 55.
Now I'm not really sure what the AXIS IV & V really are, but my biggest concern is him having all these things being diagnosed.
He goes on to state that Mason has a number of symptoms of PDD and on the CARS he was placed in the severely autistic range. But then says 'I think Mason would be more accurately described as severely bipolar with developmental delays across the board along with PDD-NOS. Mason exhibits some fairly bizarre behaviors which I see as psychotic symptoms. Mason's behaviors are very much out of his control.' And again under his recommendations he states that he feels Mason would benefit from agressive treatment under psychiatric care. And in desperate need of intense medication.
Is it common for such a young child to be getting soooo many different diagnosises?? I'm just wondering if I should just disregard this eval, because I was so uncomfortable with the doctor? Or if I should persue this a little more? I mean Mason has seen sooo many doctors and I hate putting him through all of these evalutations, but with all the problems he has been having lately, especially at school, I wonder if I need to figure this out once and for all.
I see autism in him, I see bipolar in him...I don't really know all that much about ODD, but from the little I have read it just seems that Mason isn't able to comprehend his behavior a lot of the time. His IQ is 76 right now so he doesn't fall under MR range, but he just lacks that comprehension of a lot of things. To me it sounded like ODD is things that children are comprehending their actions, they just don't stop, or don't care. Maybe I am completely wrong, I will research ODD more.
But anyway, that leaves me to wonder which way I am supposed to go with Mason. This doctor also wrote that he feels with Mason's current condition it would be very difficult to treat Mason with an intense behavior treatement such as ABA. We are doing the meds, we haven't found one that seems to work as well as I hoped, but we are still working on this. I don't know if there is a specific type of treatment for something like ODD.
I have been trying to just let this go and not worry about it, like I said, I just didn't feel right with this doctor, but I also know that we are struggling everyday with Mason. We do have some things that seem to work a little, but then it feels like we take 5 steps back in other areas, anytime there is a little gain.
This is just so hard. He is my son and I just want to help him, but I don't know how anymore. I don't know which type of doctors to call. And it just seems that everytime I go to another doctor I just get more confused! I am trying to tell myself that the labels don't matter, but at the same time I don't know how to help him if I don't know what to focus on and which disorder is controlling him more. Does that make sense?
Wow, sorry this is so long. I've just kind of been stressing about this all weekend. Tried not to let it ruin my weekend, but it's been in the back of my mind this whole time. Guess I just needed to get this off my chest. Thanks for listening if you got this far! And if anyone has any advice for me, please, I'll take it. I just don't know if I should look for more answers or what in the world to do anymore.
Thanks again all.
wow, that is quite the label for a young guy.I certainly do not like this doctor either. He sounds scary. I would not consider the labels very important except to access assistance. The ODD seems inappropriate in this case and tells me more about the doctor than your son. Too many professionals see what they expect or desire to see and cannot see anything else. In lablels and doctors, use them if you can and forget them if not. Especially that label. I hate it. There is always a reason for the behavior even if you can't find it that is logical to your son. Like not comprehending or overwhelmed or distressing sensory input.
Follow your motherly intuition and you will find the best ways for your son to thrive. You sound overwhelmed. Try to put it all out of your mind for awhile. Not sure it can be figured out once and for all. He is your unique son, not a bunch of fancy words. Never let professionals push you to do what seems wrong to you. And do not decide while overwhelmed. Ignore this advice too if it seems wrong
carmen