Need more info?

[cadon's mum]

Cadon has just had another assesment with child development, seems he is going to need to wear splints at night for his ankles, his arms are also a 'little stiff' ( I have been so concerned about watching movement in legs did'nt notice that one arm doesn't move as much as the other) they are also worried about his vision and have referred him to the opthalmist. Is this part of sb? He is also due for a CT scan on wednesday and has to be sedated, how long will he be kept in the hospital for?

[kellymumof4]

ruby had to wear splints first then when she was 5 months old she was put into DB boots with a bar in the middle to keep her feet and hips at the right angle.Her hands were always closed into a fist right from birth and she wouldnt open her hands at all but with the physios help she can now open her hands to grasp things and play with her toys.My physio says her hands were nothing to do with her S/B. Ruby is also going to see about her vision next week as the medics picked up that shes got a squint i dont think vision is a part of S/B not from what i,ve researched but could it be the hydro?

[janjanwhit]

Fergus is 14 weeks and has had no treatment so far for his feet. having splints made in a month or so. he has had a ct scan and a mri and was not sedated for either.

[pmdsmom]

As far as I know... there are a few reasons there could be some concern with movement in his arms; first would be tethering of the cord and second a fluid build up in the spinal column. Neither of these may be the issue just something we have been told to watch for. Any vision concerns could be related to any hydrocephalus and the size of the lateral ventricles. Is there any possibility that your doctors could do an MRI verses a CT scan. There is a great deal of radiation with CT and choosing CT should be reserved for emergency scans,ie: if shunt failure is suspected and a quick answer is needed. MRI requires general anesthesia for any lengthy scan however, my son recently had an MRI without any sedation and did alright. Hope this helps!

[cadon's mum]

Thanks for the feedback! Cadon has had both an MRI & CT scan without sedation so i was a bit shocked when the appointment came throught the post saying a bed had been booked at the hospital because he needed to be sedated, not looking forward to starving a 17 week old baby from 5.00am. Will definatley ask neurosurgeons about arms and tethered cord etc. this did'nt even cross my mind, i am so new to this & still have so much to learn. feel that i might need to start questioning everything that the dr's tell me. Cadon is shunted and the CT scan is to make sure everthing is working as it should be i will ask neurosurgeon about CT V MRI. Thanks again for all your help.

[valerie]

Thanks for the feedback! Cadon has had both an MRI & CT scan without sedation so i was a bit shocked when the appointment came throught the post saying a bed had been booked at the hospital because he needed to be sedated, not looking forward to starving a 17 week old baby from 5.00am. Will definatley ask neurosurgeons about arms and tethered cord etc. this did'nt even cross my mind, i am so new to this & still have so much to learn. feel that i might need to start questioning everything that the dr's tell me. Cadon is shunted and the CT scan is to make sure everthing is working as it should be i will ask neurosurgeon about CT V MRI. Thanks again for all your help.

My son cian is 10months, he got splinths for at night also about 4 weeks ago to help keep his feet in an upright position, they are light & he doesnt take any notice. We met with an eye specialist & they are monitoring him as he doesnt tend to squint his eyes every so often but nothing fixed so hopefully it he wont need any treatment but yes this can be 1 of things involved with spina bidifa, i read it in the book " LIVING WITH SPINA BIFIDA" By Adrian Sandler, a very good read, hard to take in some bit as its very straight to the point but helping me to ask more questions.

[celticwinter2526]

my son has just been put in the db boots as well. they arent the scary looking shoes that i thought of from years past. they do however have a few problems that ive seen so far. pressure sores, circulation, they can be a little heavy... but they seem to work well for my son. his ligaments have heald nicely and he has much more flexability.

[usolyfan]

Strabismus is a common eye problem with children with SB. They will probably examine the optic nerve to make sure that everything is alright there. (They can pick up on shunt issues by examining the optic nerve.


http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2664425/apps/s/content.asp?ct=4063533"]http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2664425/apps/s/content.asp?ct=4063533[/COLOR] ([COLOR="Purple)

[valmarie]

hey i have a friend with a son with SB and he too had some visual problems...i'm not sure how or why it's related (if it is) but he has since gotten past it all and is doing great. he is now 18 mos old.