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What should I do ?

Posted by on Jul. 25, 2014 at 2:21 PM
  • 9 Replies

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My name is kelli, I have a daughter that was diagnosed with LANDAU KLEFFNER SYNDROME, in 2011 which is grandmal seizure has up to 11 seizures a day, I don have custody of my kids I lost that blessing in September 2009 because Their dad said I was unfit because i did not have a job bull right ! Well I've noticed when she was 2 1/2 she stopped talking and not doing things a child her age should be now as time has passed I have told her dad she was autistic and they deny that he's in denial big time and won't et her seen or get an opinion she spins in circles and she doesn't talk and isn't potty trained what do I do? I have no rights to medical schooling or
by on Jul. 25, 2014 at 2:21 PM
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Replies (1-9):
Macphee
by Silver Member on Jul. 25, 2014 at 3:31 PM
You have the legal right to contact the school and request an evaluation. Do you have any form of custody or visitation.
Kelli06
by on Jul. 25, 2014 at 6:42 PM
I get them Friday at 6pm to Monday 6pm other then that they said I hVe no rights to be Round my kids at their school for any participation according to the kids dad and his family what's crap is when my son is playing ball he is not allowed to talk to me or my husband and they keep my daughter occupied so she doesn't see me.
Momof4AEMW
by Platinum Member on Jul. 25, 2014 at 7:54 PM

I'm sorry.  Some of what you mention are possible red flags for ASD.  But given the situation where as you say you have no rights, I really don't know what you can do.  I'm not sure if you can petition something in court to get some rights back or have her evaluated.  I really don't know, but would be worth asking your lawyer.  Good luck.  I hope you get answers!

TheJerseyGirl
by on Jul. 25, 2014 at 8:11 PM

Hi Kelli!

I'm so sorry about your situation with your kids. A child needs their mother plain and simple!

I'm surprised the school hasnt noticed any of this and already had an evaluation. Is there any way you can at least call the school and let them know of your concerns? I'm sure he takes them to the doctors so I'm also surprised the doctor hasn't noticed!

A_McCool
by on Jul. 25, 2014 at 8:23 PM

The symptoms of Landau-Kleffner syndrome and autism are very, very similar.  One of the major symptoms of Landau-Kleffner syndrome is loss of language in early childhood.  It is quite possible that they feel that the current diagnosis is the best explanation.  Here is some information that I found:

  • Language skill loss – The child develops language normally, then between three and nine years of age loses language understanding and then speech. This loss may be sudden, perhaps even overnight, or gradual over a period of months and is often mistaken for deafness initially. Many children compensate by using visual cues and gestures and may initially hide their difficulty. The deterioration in skills is called a regression, as the child appears to have returned to an earlier stage in their development.
  • Behavioural changes – These are often associated with LKS and can include over-activity, reduced concentration span, irritability, tantrums and difficulties in social interaction. The child may also have problems with fine motor coordination and movement, such as dribbling, messy eating, loss of speech clarity, clumsiness and shakiness. These difficulties are thought to be a direct result of the disease process, rather than simply an emotional reaction to loss of language.
  • Seizures – Most children have clinically obvious seizures and these often start before the initial regression. These seizures are generally short and do not show a close relationship with the effects on language and other areas of development.

http://www.gosh.nhs.uk/medical-information/search-for-medical-conditions/landau-kleffner-syndrome/landau-kleffner-syndrome-information/

I don't now whether or not it is possible to have both, but I think it could be possible that the doctors feel that Landau-Kleffner syndrome is the more correct diagnosis.

Quoting TheJerseyGirl:

Hi Kelli!

I'm so sorry about your situation with your kids. A child needs their mother plain and simple!

I'm surprised the school hasnt noticed any of this and already had an evaluation. Is there any way you can at least call the school and let them know of your concerns? I'm sure he takes them to the doctors so I'm also surprised the doctor hasn't noticed!


Kelli06
by on Jul. 25, 2014 at 11:30 PM
Thank you all for your kindness and it's hard in my situation and no the school hasn't said anything that I know their doing pecs with her hand over hand and they baby here I can't stand that, main reason for that is I don't think they want to deal with her tantrums, they put her on their laps and she has no stability with her dad his patents house his sisters house his other grandparents house he hardly gets any quality time with out kids. My son says he doesn't have to listen to me because I'm not the boss his dad's side of the family got him to believe that men are the boss not women I hate that my kids have to go through this. I don't know how to potty train my daughter, but last summer almost had her potty trained and he put her bk in diapers why? Because it's so much easier he doesn't spend time with our kids at All. He puts them in front of video games or iPods or whatever is out there and I don't agree. When my kids are with me they are consistently outside playing being my son broke his wrist last summer it's my fault my daughter is the way she is and it's my fault my kids always have scrapes and stuff because my kids are always outside. Just don't know what to do my mom is on his side and true to convince me to just give them up on them and let him have them so I took her out of my life she's suppost to help me through all of this an she isn't.
darbyakeep45
by Darby on Jul. 26, 2014 at 9:42 AM
I agree here. Hugs!!!!

Quoting Momof4AEMW:

I'm sorry.  Some of what you mention are possible red flags for ASD.  But given the situation where as you say you have no rights, I really don't know what you can do.  I'm not sure if you can petition something in court to get some rights back or have her evaluated.  I really don't know, but would be worth asking your lawyer.  Good luck.  I hope you get answers!

mypbandj
by Jen on Jul. 26, 2014 at 11:10 AM
Hugs. I'm sorry. That sounds like a very frustrating situation.
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Logansmom1999
by Kristina on Jul. 26, 2014 at 3:19 PM

I am so sorry this is happening {{{HUGZ Mama}}}

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