I'm sorry you have had such a rough couple of weeks, Dansta. I hope DJ is feeling better and you have the seizures under control.
Has he started at the kinder you spoke of earlier yet? The symptoms of both of the syndromes associated with chromosome 15 are managed with OT, physio and other therapies. I hope you have access to a really good kinder for DJ, there are some great ones around.
DJ sounds like a gorgeous kid and you seem like a beautiful, caring mum. I hope you get answer's soon so that you can all keep moving forward.
Dansta - my DD1 who is 2 years old also has GDD. We are currently going through the Blood tests & urine samples to see if there are any visible signs as to why she has GDD. She hates having the BT's having 3 people to hold her down isnt the nicest of things.
Hope things start to calm down in your household soon. Hope DJ gets better soon!!
This thread has been a interesting read. I been against having a MRI done on my DD as i figured it wouldnt change who she is but the last couple of days the way she has been acting i been thinking about getting it done more & more. ( will have to read whats done in a EEG, Cat Scan & MRI ) & talk to my Paed or GP about it.
nickel: yeah, thats what our pead said - but he also said they're still in the dark about the affects of both Angelman and Prader-Willi syndrome.
Crazyone: i was the same about the MRI, but when DJ wasn't walking/talking by 18 months i felt we needed to look deeper. we had bloods done - it also took 3 people to hold him down plus another to take the blood. X2 due to him moving his arm the MRI isn't too bad. the sedation part is - for DJ as he's really active they kind of need him to be asleep - something he's not good at LOL. the CT is 'worse' in the sence its like 500 chest X-rays. also the detail isn't as good. but it can rule out scar tissue ect (we had one due to the second fit) with the blood tests ask about the genetic one. it takes 6 weeks and thats the only reason we found out why Dj had GDD, which could also be cuppled with the epilepsy and the chromosome 15 deletion. maybe also (no idea where you are) talk to your pead about early intervention with phyiso, OT and speech (if you're not already) thats what we're starting now, hopefully that'll help DJ out.
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the MRI isn't too bad. the sedation part is - for DJ as he's really active they kind of need him to be asleep - something he's not good at LOL. the CT is 'worse' in the sence its like 500 chest X-rays. also the detail isn't as good. but it can rule out scar tissue ect (we had one due to the second fit) with the blood tests ask about the genetic one. it takes 6 weeks and thats the only reason we found out why Dj had GDD, which could also be cuppled with the epilepsy and the chromosome 15 deletion. maybe also (no idea where you are) talk to your pead about early intervention with phyiso, OT and speech (if you're not already) thats what we're starting now, hopefully that'll help DJ out.
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