Tam's interview
Error
How did all start?
My 6 year old son was diagnosed from birth at 5months old with brown cafelauit spots like birth marks nf1
Do you already have a diagnosis? How long did it take you to get it?
My son was diagnosed from birth at 5month old with nf1 my son is now 6 years old
For what medical specialties have you been treated? What has been the most useful specialty for your?
Im new to this took my son to see Brisbane nuolgist an my son bones in he leg is growing abnormal bowed leg like a twist not flexible an he got more cafelauit spots an he has major learning difficulties an major behaviour problems he has asd adhd odd rad he medicated for those doesn't improve him though he geting a mri done for emergency check for any growing tumours im just wondering what else happens is expected for a 6year old does anyone have stories to fill me in with this nf1 what usually happens when u get to 6 or as u age practically
What has been the most useful thing for you so far?
My son just goes on like nothing wrong he happy chap runs an plays im just worries about the leg an whatever else will sneak up out of the blue. Nothing been useful so I see how the mri goes an go from there
What have been your biggest difficulties?
Bowed leg my son learning difficulties an major behavioural problems I just want to know what im suppose to expect from this disease my son has what usually happens around age 6 onwards nf1
How has your social and family environment reacted? Have your social or family relationships changed?
He behaviour in school an learning is hard for him he can't read he leg is starting to grow a twist abnormal bowed leg he back bones are skeleton for a boy who eats alot he staring to get small white bump on he elbows an ankles been there for months tried cream more cafelauit spots he 6 years old balance problems took him till this year to finally figure out how to ride a bike an move the pedals he gets confused he forgets
What things have you stopped doing?
Stop my relationship with kids father we separated Im a full time mum of 4 kids an I have make sure my son dresses himself properly I remind him for toilet he take half an hour too eat small meals snack treats he fingers are flexible easy to dislocate he has lazy arms hands that tend to get tired quick
What do you think about the future?
Im wanting stories advice of what to expect for to happen to my son so I know what I'm looking for dr don't tell .me much about it pretty 4 min visit pay the money not enough explanation I may have to get my son out of karate as im scared he bowed leg may get fracture now that I know that part
So far, which years have been the best years in your life? What have you done during them?
Best year for my son is finally can ride a bike he still cheerful an bright as ever an not knowing what happening to him he doesn't tell u if he sick either practically have to look for he change of expression an guess an ask before he tell me If something wrong
What would you like to do if you didn’t have your condition?
My son would love to stick to karate an he would be able to read an behaviour problem he writes Like a mirror back to front does opposite he gets frustrated angry he wouldn't be so violent aggressive with other kids most of the time he said he doesn't know why does it
If you had to describe your life in a sentence, what would it be?
My son is a bright full of smiles boy around me and other members of family he struggles so hard with he writing reading speech problem too
Finally, what advice would you give to a person in a similar situation?
Be strong patience like I'm new to this an I've signed up for stories an what to look out for my son an what to expect from the nf1
