Getting in contact?

Hi I was just wondering if anyone knows of a way that you can get in contact with someone who posted a questions on this site in 2000. My daughter has the exact same symptoms as a lady called Jessie who posted on here in 2000. I would love to get in contact with her to see what she found and how her daughter is doing. My daughter is 2 and 5 months and she has hypotonia, walks with help, long skinny fingers and long flat feet. She is tall and skinny. She has weak eyes and her fine and gross motor skills are delayed. She only has about 6 words that she says but she understands just about everything. She has had an MRI of her brain and spine and that was all clear. Genetic and chromosomal testing has been all clear. The neurologist thinks it might be a metabolic disorder and my daughter is booked in to have a lumbar puncture and several other blood tests in a couple of months time. She already sees a physio, OT, speech therapist, but she improves very slowly and steadily. I don't know what else I can do. If anyone has any thoughts or information that would be greatly appreciated. Thanks so very much.

[littlebit667]

Have they considered Marfan's syndrome??  

http://www.marfan.org/cms/uploaded_files/8XJIUG81F3/89/docs/factsheet_mfs%20facts%200311.pdf

[littlebit667]

http://www.marfan.org/cms/uploaded_files/8XJIUG81F3/89/docs/factsheet_skeletalfeatures.pdf

[hava]

Supplement the therapy with this alternate nostril breathing. Start with one minute and then build up to 5 minutes. You also do it with her. Your feedback at some point will help others.

Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.

Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
may 2 ,2012