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New to board-need input on daughter's symptoms
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<blockquote data-quote="klmno" data-source="post: 263026" data-attributes="member: 3699"><p>Hi and Welcome!! My heart goes out to you and I've not had the same situation so I'll just throw out some ideas and thoughts- take them as suggestions or forget about them as you deem appropriate. I think I would hold off on the state hospital as long as possible, if you are talking about a very long term commitment. Some state hospitals might be good for helping diagnose and getting medications improved if you are talking about a 1-3 month stay. I definitely don't think these doctors have gotten the accurate diagnosis yet. </p><p></p><p>If she hasn't already seen an handful of neurologists, I think I'd be getting her there as quickly as possible and then maybe another one for a second opinion. It might be useful to get her in for an evaluation by a team (a multi-disciplinary evaluation or MDE) at a Children's Hospital/University. (This is out-patient usually.) I like Smallworld's suggestion about NIMH and she needs complete neuropsychological testing, too. I think it would be a good idea to start making phone calls to pursue all these things though because chances are, they all won't come through or at least, they all won't come through at the same time and I think it might be a good idea to get a lot of different experts' eyes on this one. </p><p></p><p>Have you applied for disability for her? You could try that. Another useful thing- if you can get her in a state hospital for 30 days (not forever), you can apply for medicaid for her that will cover more and it will be based on her income since she's considered out of the home, even if the family's income is too much to qualify for medicaid. This might vary by state, but you are going to need some help with her so I'd start filling out applications now.</p><p></p><p>If you get comfortable revealing what state you are in, others here might be able to PM you specific places or processes that might be helpful.</p><p></p><p>Here's a ((HUG)) for all you have gone through already and KUDOS for sticking this out with your daughter.</p></blockquote><p></p>
[QUOTE="klmno, post: 263026, member: 3699"] Hi and Welcome!! My heart goes out to you and I've not had the same situation so I'll just throw out some ideas and thoughts- take them as suggestions or forget about them as you deem appropriate. I think I would hold off on the state hospital as long as possible, if you are talking about a very long term commitment. Some state hospitals might be good for helping diagnose and getting medications improved if you are talking about a 1-3 month stay. I definitely don't think these doctors have gotten the accurate diagnosis yet. If she hasn't already seen an handful of neurologists, I think I'd be getting her there as quickly as possible and then maybe another one for a second opinion. It might be useful to get her in for an evaluation by a team (a multi-disciplinary evaluation or MDE) at a Children's Hospital/University. (This is out-patient usually.) I like Smallworld's suggestion about NIMH and she needs complete neuropsychological testing, too. I think it would be a good idea to start making phone calls to pursue all these things though because chances are, they all won't come through or at least, they all won't come through at the same time and I think it might be a good idea to get a lot of different experts' eyes on this one. Have you applied for disability for her? You could try that. Another useful thing- if you can get her in a state hospital for 30 days (not forever), you can apply for medicaid for her that will cover more and it will be based on her income since she's considered out of the home, even if the family's income is too much to qualify for medicaid. This might vary by state, but you are going to need some help with her so I'd start filling out applications now. If you get comfortable revealing what state you are in, others here might be able to PM you specific places or processes that might be helpful. Here's a ((HUG)) for all you have gone through already and KUDOS for sticking this out with your daughter. [/QUOTE]
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