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Old 05-15-2013, 12:31 PM   #11
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Re: How would you feel if your child's diagnosis was removed?

It's not on the spectrum at all, actually. I just used that as an example because I figured people could relate to it since everything is changing in that area, and almost everyone knows someone on the spectrum.

It is (or was) a medical diagnosis, not a subjective thing like language delay. I'm confused and pretty annoyed about it....But when all my family has asked about test results they are all "oh that's awesome!!" and "such good news!!". But I don't feel that way. I wanted to know that I wasn't crazy for feeling this way.

Kennah was diagnosed with focal cortical dysplasia (brain damage in the frontal lobe) at twenty months after a long line of delays and some EI. She has had some physical delays, still has many receptive and expressive language processing issues. Off the charts sensory issues, oral motor issues, and pretty big memory issues. All of this was explained with her diagnosis....they said that the part of her brain is damaged is like the entrance/exit ramp of the highway highway so it would effect her in many ways.

She was diagnosed with an MRI. It was a surprise finding, they thought at the time they would find evidence of a stroke. She has been having some infrequent staring and rapid blinking spells which had me worried about seizures (very common with FCD). Did an EEG, the two sides of her brain reacted unevenly which the Dr said usually indicates brain damage and was probably just the spot we knew about, but they wanted to do another MRI. We did that Monday, and it showed nothing. No seizure activity, no brain damage, nothing.

I asked the Dr what is causing all the delays and her brain to react unevenly and all, and she just said she didn't know.

She has an appointment at the Thompson Center (autism and neurology place) that we've had set up for months because she failed an autism screening and we've thought for a while she may be on the lower end of the spectrum.

It's just so frustrating. I want to know what's going on. I don't want to be the crazy mom who wants her kid to have brain damage. I DON'T want her to have brain damage. I don't want her to have issues at all. But she does, and I would like to have some answers.

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Old 05-15-2013, 01:55 PM   #12
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Re: How would you feel if your child's diagnosis was removed?



My DS has/had a "probable" medical diagosis that had been confirmed with brain imaging in his first few months of life. By his first birthday, he wasn't showing any symptoms of the disorder, so the diagnosis was never officially given.... of course, I'm elated that he isn't struggling with it right now. However, he's still only a baby and I have a lot of anxiety about what the future holds for him. We've already gotten push-back from his early intervention case manager regarding his services. His neurologist even said that the fact that he received consistent early intervention services during the first year of life undoubtedly played a part in him overcoming this medical issue and that the services should continue at least until age 3, but without the diagnosis they're reluctant to provide therapy.
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Old 05-15-2013, 02:53 PM   #13
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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 05-16-2013, 05:57 AM   #14
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Re: How would you feel if your child's diagnosis was removed?

I'm kind of in a place where I think I could get an Autism diagnosis for my son, but I'm not pursuing it. He behaves differently in different environments so some people see concerning things, others just see some quirks. Ultimately, we chose to NOT investigate getting a diagnosis because if he is anywhere on the spectrum, we have been assured that it's on the high-functioning side (meaning he wouldn't need as intensive therapy protocol). He does have language delays, mostly expressive. There's a lot of debate over his receptive skills because he's so stubborn. For now, we're doing lots of private therapy. I'm considering trying to get a medicaid waiver to cover therapy because he does have the label of "developmental delay". I'm just not sure I want that following him around everywhere. It would not open any doors for him, it would just make paying for things easier, which is obviously something to consider.
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Old 05-19-2013, 10:06 AM   #15
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Re: How would you feel if your child's diagnosis was removed?

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I am struggling with this right now. DS is currently dx PDD NOS/Aspergers and ADHD. The latter won't change as he's a classic case and is controlled with meds but these new revised criteria for autism are making me mad. If DS can't keep his dx we won't qualify for behavioral services anymore which he desperately needs. And I know someone out there will come say some thing like 'oh well it's just opening the door for a different diagnoses, maybe they were wrong'. Well it's not wrong. And I will be extremely upset if we lose his therapy because the criteria changes and he is high functioning.
This would be my exact concern if a diagnosis changed, that it could close doors for services. I have no problems with labels or lack of but just as long as my kids get what they need to help them.

For us, my son has some diagnosis and somethings where all the doctors agree that something isn't right but they just don't know what it is. We have a lot of "I think it's probably this but we can't test for that because..." so we don't have all that many labels to begin with.
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Old 05-19-2013, 10:15 AM   #16
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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 05-22-2013, 10:40 PM   #17
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If your child qualifies for Pddnos he almost for sure will qualify under the new criteria. Lots of studies were done and found that only about 10% of cases will be dismissed. But they also found that those 10% fit better under a different category and would still receive services. Will try to find the link (I think it was a Harvard study)

My dd was diagnosed Aspergers by one doc and Pddnos by another. She definitely fits the new criteria for autism and would be high functioning.

What I guess I am saying is that the new criteria is all encompassing and the main points from both Aspergers and Pddnos are melded into the new criteria.
It is likely he will keep his diagnosis, after meeting with our new psychologist. He said he very much fits an Aspergers label but well, no point in changing that He thinks we will have no problem carrying his diagnosis as ASD, high functioning but IF there is something that is missing he will look at social (pragmatic) communication disorder. The only issue here is that ASD must be ruled out in order to carry that diagnosis. Oy.
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