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Old 05-15-2013, 08:06 AM   #1
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How would you feel if your child's diagnosis was removed?

It still the same child. You're still dealing with all the same symptoms/issues/whatever, you just no longer know the cause of the symptoms or issues. How would you feel?
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Old 05-15-2013, 09:20 AM   #2
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Re: How would you feel if your child's diagnosis was removed?

I guess it would depend, whats the reason for removing it? Does it open doors to look into different dx?
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Old 05-15-2013, 09:50 AM   #3
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Re: How would you feel if your child's diagnosis was removed?

I see a diagnosis as a word to help my child get the support and therapies he needs. We chose only to share his actual diagnosis with close family and school, only because of all the stigmas and biases attached. It's something he HAS, not IS
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Old 05-15-2013, 10:09 AM   #4
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Re: How would you feel if your child's diagnosis was removed?

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I guess it would depend, whats the reason for removing it? Does it open doors to look into different dx?
Let's say it's removed due to new testing. Old test said child had xyz, new test shows nothing wrong with the child. It may open doors for a new dx, but it will be a long road.

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I see a diagnosis as a word to help my child get the support and therapies he needs. We chose only to share his actual diagnosis with close family and school, only because of all the stigmas and biases attached. It's something he HAS, not IS
Yes but now you cannot get, or will have a harder time getting support and therapies for his needs. I know that the diagnosis does not define the child, but sometimes it does help people understand behavior and react appropriately when dealing with a special needs child. For example, let's say your child has servere autism. To me it would be easier to understand the behavior if you knew what was going on. If they removed the diagnosis, not only do you have a harder time getting the help you need, but people would have a a harder time understanding. I think, anyway. So how would you feel?
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Old 05-15-2013, 02:53 PM   #5
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Re: How would you feel if your child's diagnosis was removed?

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Yes but now you cannot get, or will have a harder time getting support and therapies for his needs. I know that the diagnosis does not define the child, but sometimes it does help people understand behavior and react appropriately when dealing with a special needs child. For example, let's say your child has servere autism. To me it would be easier to understand the behavior if you knew what was going on. If they removed the diagnosis, not only do you have a harder time getting the help you need, but people would have a a harder time understanding. I think, anyway. So how would you feel?
I can relate to this only in the respect that my son has NEVER gotten a formal diagnosis. He has symptoms all over the place (feeding issues, heart issues, airway issues, urinary issues, OCD/behavioral issues, sensory issues) but NO one has been able to put any pieces together. And at this point a label wouldn't change anything about him, but unfortunately without that label we are struggling hard to get any support from our insurance company for his therapies and from the school. Every time they do a test to diagnose him and it comes back negative, I feel like I should be happy like everyone else is but instead I'm just....frustrated. The geneticists were almost positive my son had DiGeorge/22q Deletion Syndrome (as was I) and everything I read about it I found myself nodding along to. Well, he was cleared by genetics as not having it and I was honestly disappointed. I actually feel guilty about it, but I just need the closure. I need to know what we're dealing with, I need to know if he has a broad genetic thing that he can pass to his kids, I want him to be able to tell people "I have XYZ" when they ask, instead of saying "well I struggle with this, and this is hard, and I had surgery for this...etc...etc...".

If he HAD a diagnosis that seemed off or didn't seem like it "fit", I would be disappointed but glad to be on a new path to the correct diagnosis. If he had diagnosis that seemed to fit and then it were taken away and I was left in nowhereland? Frustrating would be an understatement. I'm sorry you are there right now.
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Old 05-19-2013, 10:15 AM   #6
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Re: How would you feel if your child's diagnosis was removed?

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Every time they do a test to diagnose him and it comes back negative, I feel like I should be happy like everyone else is but instead I'm just....frustrated. The geneticists were almost positive my son had DiGeorge/22q Deletion Syndrome (as was I) and everything I read about it I found myself nodding along to. Well, he was cleared by genetics as not having it and I was honestly disappointed. I actually feel guilty about it, but I just need the closure. I need to know what we're dealing with, I need to know if he has a broad genetic thing that he can pass to his kids, I want him to be able to tell people "I have XYZ" when they ask, instead of saying "well I struggle with this, and this is hard, and I had surgery for this...etc...etc...".

If he HAD a diagnosis that seemed off or didn't seem like it "fit", I would be disappointed but glad to be on a new path to the correct diagnosis. If he had diagnosis that seemed to fit and then it were taken away and I was left in nowhereland? Frustrating would be an understatement. I'm sorry you are there right now.
This was us, too in "nowhereland"! The drs really thought DeGeorge/22q and when genetic testing came back normal, it threw a monkey wrench in things since now no one has any clue but agrees something isn't right and is getting worse. My son has the facial palsy that has been progressively getting worse. Genetics declared it a birth defect since it didn't pop up as a genetic issue so that opened the door for a Special Child Health Nurse but still doesn't explain what is going on and why it's getting worse. I was trying to make myself okay with just going on "birth defect" but now that it's suddenly changing, I'm not okay with not knowing what's going on.

His face looked typical at birth but around 2 1/2 years, the right side of his mouth would freeze shut when he smiles. It remained about the same but now at 3 years, when he smiles, his right eye shuts on it's own, too, like the mouth does and that is new. It looks like he's winking but he's not and can't control it. What's confused the doctors is that most kids with that facial palsy, have it from birth and it stays the same and he didn't have any issue at birth or as a baby. Genetics said everything is fine from their end. We have been seeing an ENT as he needs ear tubes and they want an MRI of his brain, which I agree with that it needs doing.
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Old 05-15-2013, 10:37 AM   #7
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I would probably be pissed, frankly. I personally find a diagnosis helpful, and to have it removed I'd want a pretty good explanation as to why, and you better start working on what's really going on. I'd feel more upset over a medical diagnosis over something that is more subjective such as autism, language delay, etc, if that makes sense...
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Old 05-15-2013, 10:57 AM   #8
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Re: How would you feel if your child's diagnosis was removed?

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I would probably be pissed, frankly. I personally find a diagnosis helpful, and to have it removed I'd want a pretty good explanation as to why, and you better start working on what's really going on. I'd feel more upset over a medical diagnosis over something that is more subjective such as autism, language delay, etc, if that makes sense...
Yup.
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Old 05-15-2013, 10:44 AM   #9
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Re: How would you feel if your child's diagnosis was removed?

Yea I wouldn't be happy then.
Who did the testing, was it someone he is familiar with, someone you trust? If the child is having the same symptoms, why did they re-test?
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Old 05-15-2013, 11:05 AM   #10
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Re: How would you feel if your child's diagnosis was removed?

Are you guys going to lose a diagnosis?

I think I would be jumping up and down for joy, because I would love for my kid not to have intractable epilepsy and just have epilepsy. I think it's a little different for something like Autism. I would love to no longer have a label of Autism for my child, but if we were still having unresolvable behavior issues, I would definitely look into other diagnosis's. Since we are stuck right smack in the middle of the spectrum that isn't a possibility no matter how hard I might wish it to be. That is just my weird perspective though, and I think my wanting as normal a life as possible for my child plays a lot into that. How many employers are going to want to hire someone who is Autistic with intractable epilepsy?

However, I honestly would be sad that those support services with that diagnosis would be withdrawn and we had to start testing again. Having been through it already, I at least have a the knowledge now about how to go about it, unlike before when we were stumbling around in the dark. I would also get another assessment/second opinion if possible to see if that changes anything.

As far as explaining his behaviors a simple "He's special needs" to strangers harassing you should be sufficient to get them to back off, and for school and family, saying something like, "He was on the Autism scale, but that system is being reorganized and we are getting things reassessed. Hopefully for a more accurate diagnosis." for example, puts the burden on the Dr.'s for changing the system, test and/or their assessments.

We never share his diagnosis with random people IRL. We have had strangers approach us, before our diagnosis, and say, "Oh, he's autistic isn't he?" and we would say, "Oh, hi, do you have an autistic kid?" and they would tell us about their experiences with kids with autism, without us having to say yes or no. Most of the time simply telling the care provider/teacher, what to look for and do to help him, and when to call us is enough.

My friend's son is an 9 on the Autism scale and she is afraid she is going to lose services. She is really dreading having to go back and reassess everything and get a different diagnosis.
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