Very Frustrated!!

iVillage Member
Registered: 03-27-2003
Very Frustrated!!
6
Thu, 07-10-2003 - 6:39pm
MY son got ASD ruled-out---sort of. He has the dx of mixed developmental disorder. They really didn't agree on that dx---I think the speech-path saw him as PDD-NOS. He has a language disorder with receptive speech. They want him ruled-out for ADHD, ODD, OCD, bipolar---and get him re-eval'd in 6 mo. He's a kid with symptoms of all the disorders. They even told me that he needs therapy--speech and social--as if he is ASD. I asked about Aspergers and they said he was too young? I didn't think age was a factor. Maybe because with him it's not clear-cut??? He's 3yo. I'm just really frustrated that even though he is like an ASD kid---then why didn't he get that dx instead of some "mixed" stuff. They want him to start med trials to rule-out other things. I don't like that idea at all!!!

Anyone use diet changes??

Holly
iVillage Member
Registered: 03-26-2003
Fri, 07-11-2003 - 2:31am
Hi there.

Just wanted to say I understand your frustration. But definitely make use of the services he will recieve. It is frustrating not having an answer, but at least you will be doing all the right things.

I too have been frustrated. My 3 y.o. is something, but darn if we can figure out yet what it is. We also went through it with my 7 y.o. who has just finally been diagnosed AS after years of misdiagnosis and unknowns. This after his older sister had already been diagnosed years before on the spectrum. It is frustrating, but with some kids it is hard to tell until they get a bit older and we see more of how they interact socially and how they process things. Age is not officially a factor, but it can be hard to diagnose a child with asperger's when they are young. Particularly children who are not obviously on the autism spectrum. Also, if he has a language delay, they would need to see if he caught up to diagnose asperger's. Otherwise it would be PDD-NOS.

For now, focus on his needs and meeting those needs. Know that you will know more some day before too long. And keep coming here for support. We don't care if you have a "diagnosis" you are still one of us and welcome here.

Renee

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iVillage Member
Registered: 03-26-2003
Fri, 07-11-2003 - 6:58am
Well, she did it again, Renee took the words out of my mouth, LOL. Any respectable dr will not dx Asperger's at 3yo. But what I don't understand is why they are fighting the PDD-NOD dx. That can be applied at age 3 and would benifit him as far as getting services. It can be changed later if they are able to finally specify a more concrete dx later. But, if he is already getting the serices he needs then I wouldn't worry about it too much just yet. And one of the reasons they may be waiting is because there is a dx criteria for ASD that says "All others have been ruled out". That doesn't mean that he can't have a comorbid condition, infact they are very common. But certain co-existing dx sets look an awefully lot like ASD when they're not.

The most common mis-dx in this situation is calling a BPD/ADHD set ASD or vica versa. This mis-dx can have serious repercussions. A person who has BPD and needs medication but isn't getting it is at risk for developing savo-skizophrenia or worse yet, MPD. And likewise, a person who is autistic and isn't recieving social skills instruction/therapy is at risk for developing extremely anti-social behavior that can lead to a life of misery.

I know this is extremely frustrating for you. It took us several years to get a semi-accurate dx set on Jade. But it was worth the frustration. It hard to wait so long but, as Renee said, at least he's getting the services he needs now, not later. My prayers will be with you that it doesn't take them too long to figure things out.

As far as the med trials are concerned....I'm not a big fan of giving small children meds. But sometimes it IS the only way to isolate certain things. And each trial usually doesn't last very long, only a few weeks. Jade had to do drug trails to rule out BPD and confirm ADHD. It was a bit of a nightmare, but it was worth it. When we finally got down to isolating the corect field of dx's things got so much easier for her and for us. We were able to see where she was coming from with her issues and were able to start approching her appropriately.

As far as diet changes....yes, we have had some luck with those. DH and Angel are totally Casein free. Dh is still an Aspie, but at least I can live with him now. Before his diet change he was so moody and prone to withdrawl that I was actually considering divorce. he constantly ignored me and hardly talked to the kids, except to yell at them. He's so sweet and so much more out going now that I want to kick myself for ever considering the D word. But those diets aren't for everyone. Jade and Eva showed absolutely no change in behavior durring their trial (except to while about not getting to have milk, cookies, cakes, most cereals, mac-n-cheese, or cheeze of anykind for that matter, etc) If you choose to do a trial that's great. But if you don't see a change in behavior in the first 3 weeks drop it and move on to something else. It's not worth the vitamin loss they will incurr,or the hassle you will have to go through to maintain the diet, if there are no evedant results.

I'll be keeping you in my thoughts and prayers,

Candes

Peace,
Candes  
iVillage Member
Registered: 03-27-2003
Fri, 07-11-2003 - 10:54am
Thanks Renee and Candes!! You made me feel better. The reason they said no ASD is that he has good eye contact, uses gestures, socially wants to make friends--just is really aggressive. He likes playing with others. He just gets so overstim'd that he's aggressive.

If he does get dx with ADHD--how would they rule-out ASD or know it was cormorbid? If stimulants are giving to a kid without ADHD--do they work? I know given to a bp kid---they will rage. And what about bp meds? Would they do anything to a kid who isn't bp?

He already is in the spec preschool--but never qualified for speech---since he "talks" fine. I hope it's not a fight to get him speech. The speech/language eval report is really good and detailed. I wanted him to have private speech, but our insurance won't pay for it. We still may pay out of pocket for it. There is a great place---but over an hour away that does group therapies also. It's cheaper then the one that is close to us. But that is still $400/mo---that we don't have. I hate insurance companies!!

Holly

iVillage Member
Registered: 03-26-2003
Fri, 07-11-2003 - 12:10pm
Wow, he sounds a lot like my Dave. He also gets overstimulated easily and will usually become aggressive. However, we have found in a classroom situation when he gets overstimulated he will withdraw and usually doesn't talk at all. Only opposite is that his language is fine, but we might actually get him qualified for special services becuase of his speech. (lots of words and can understand about 1/2 of it).

ADHD can be co-morbid with BP or with ASD. My best friend has 4 kids. 1 is BP/ADHD and her other 3 are all ADHD. Her 2 younger ones are also being watched and on med trials for mood disorders as well. Of my 4 kids, 2 are diagnosed with AS and have had diagnosis of ADHD as well. The current doctor believes their ADHD symptoms are secondary to AS symptoms including SID and processing problems, but I guess they would be considered comorbid at least for Mike since he hits the full set of ADHD criteria. Dave also fits all the ADHD criteria, but dx is being held off as of yet.

Meds are tricky cause it can vary so much from kid to kid. For instance, we have started a trial of ritalin with David and it has helped the aggression immensly. Although he has some ASD traits, he seems to lean more toward the ADHD side. It has helped his impulsiveness and we noticed a difference the very first day. However, both of my other ASD kids reacted negatively to stimulants. Caiti was only on them 3 days when we realized it was NOT the treatment for her. Stimulants can make the ASD type of child more rigid and anxious, so it is not for all of them. But I have heard it helping some kids with ASD's who are also ADHD. We are having luck with Luvox for their rigidity and anxiety (and Mike's OCD symptoms).

I did diet with Cait first and it helped some, but wasn't a fabulous improvement. It is different for every kid. I don't like medicating either. We were able to have Cait off for a few years and it was a great feeling. We had to start again for partial seizures. Then life and stress just got to difficult for her and she couldn't function from the social anxiety. She couldn't join groups, couldn't ask anyone for anything, order a water or food at McD's just from anxiety. Now she does all that and has found she loves the stage and acting. Mike just can't function and can't go in public without. He screams, is so rigid and has been getting more OCD traits (handwashing, cleansing this bug obbsession/phobia) so for us it has been a positive.

Renee

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iVillage Member
Registered: 03-27-2003
Fri, 07-11-2003 - 2:41pm
If my child does have a real disorder---is it usually seen with siblings also? I have 4 kids---and my son is the only one like this. He is also the only boy. I've read that alot of parents have multiple kids with these disorders.

It makes me wonder that since my other kids are "fine"--(so far)--that my son really doesn't have anything wrong with him. Maybe he's just a SK like everyone has always said.

holly

iVillage Member
Registered: 03-26-2003
Sun, 07-13-2003 - 1:32am
There are no definites. I know many people with multiple children with similar difficulties. I also know many with only 1 who has challenges. They are finding a genetic link in many cases for autism spectrum disorders and similar syndromes. However, there can be other causes as well. And even if there are genetic links, it doesn't mean it will hit one family more than once. So, even though there are a large number of families with multiple kids with problems, it doesn't mean that he does not. Also it is found that these syndromes tend to hit the boys more often than the girls. Although, some think that is becuase the syndrome presents differently in girls.

I have also heard of children with ASD's having siblings who are incredibly gifted, or may have other difficulties but not autism such as ADHD or learning disabilities. They also seem genetically related to the same stuff.

Even with our kids with 'issues" I have had many well meaning freinds tell me they thought they were just spirited or individual, etc. I hope that your son is. But in the mean time, keep up the services and keep doing the right things. He wouldn't have been provided services if there wasn't a need that was noticed. But keep your hopes up too. He could do very well in early intervention and make gains to catch up to his peers.

Renee

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