Zain

Hi Been a few months - tried logging in but had some errors- guess i got in now Mohamed Farhaan - has regained 80% speech - more strength in upper body EATS him self ( a lot might i add) - gaining weight now - need to implement a diet and some exercise - still a bit emtional still has spasms in both legs - contemplating going on this drug for spasms - spoke to neurologist - he said that spasms caused by inflamation of nerve - will take years for this to subside if it ever does Farhaan has become a bit more independent - wheeling himself around - oral communicatio has improved tremendously. Just want him to be the boy he was - running jumping cycling again Summary since stroke, tremendous improvement noticed - from bilateral paralysis improvement and recovery exists albeit very slow :Clap-Hands: All other assumed cognitive, perception, speech processing problems associated with Farhaans brain stem stroke non existent :thumbup:

kool guys Farhaan was very excited about his ability to walk in the pool. I went home yesterday afternoon and he couldnt wait to tell me about his experience. He actually called mom to verify his story. Farhaan was right handed pre stroke. Post stroke, his left side became more dominant and he learned to write with left side. After 'forcing' therapy, he can write almost legibly with both hands. Weird weird weird..... Deenie, glad to hear about your husbands progress. I have learnt so far that stroke rehabilitation is a lifetime adventure. Did get me down at times, way way down, but i (we) just gotta make the best of every day. Chat soon

hi there actually Farhaan is Right handed - got me confused cos he is writing wid both hands. about 15 min ago my wife called me - she says he is walking around the pool with no support I cant wait to go home this afternoon cheerio

Hi Too busy with Farhaan, work and settling into the new place. Farhaan has so far made remarkable recovery. Head control is perfect, swallowing action is almost perfect. He started using his right hand to write stuff (color, drawings, and small sentences). Although his dominant side is the right, he tends to use his left for all attempts at activities. As for speech, he tries to talk. He can call Ma, say "No", Say "Yes" and a few other words. I encourage him to try to use his speech to communicate instead of hand signs. Putting Farhaan in the pool does wonders for rehabilitation. I got him a life-jacket and one will never say that Farhaan has a disability when he is in the water (floating around on his back, pedaling with his legs). This pool has strengthened his mid section and hence improved his attempt to walk. Still walks on his toes with support from the back (he got the nick name 'twinkle toes' from the therapists at rehab). The neurologist are quite impressed with his recovery up to this point - seeing that he has just completed 5 months after his stroke. From not being able to breathe on his own or eat, to almost completely walking or talking on is own. Any advice from you guys will be really appreciated. I do understand that stroke recovery is a life long episode but does Farhaan

Hi there Trina Thanks for the response. The way we care for Farhaan is therapy itself. He has to walk (with much Aid) to the lounge, bath or the car. He has his daily dose of board games and he loves playing with his Portable playstation. I just got some simple games lie space invaders etc for him. He also gets a full body massage daily. In about a weeks time he wil spend two weeks at this school "Open Air". There he will be assessed for enrolment next year. It is a school that caters for students with similiar condition to Farhaan. As for PT, ST and OT, he will be going to the Entabeni Rehabilitation clinic as an outpatient. His first outpatient visit is this Wednesday. I found this drug called Neuroaid. I emailed the biopharma company, Moleac, and got some responses. They say that the youngest person to have taken it to their knowledge is 17 years old. They have no data on 8 year olds. They suggest i use 1/3 dose. Details of Neuroaid can be found here >> http://news.scoopasia.com/index.php/news/n...e_to_paitients/ http://www.medicalnewstoday.com/medicalnews.php?newsid=53535 http://www.pharmamedics.com/read_news.php?id=41212 Does anyone have any information or possibly used this drug? I am very much interested in the "computer software to help the brain find pathways". Must i speak to the neurologist about it or where can i get the software/hardware? Thanks Zain

Hi Farhaan had the peg removed last week Tuesday, under anesthetic. The part of the peg in the stomach broke off. Came home on Wednesday. Passed out the peg on Friday around 11 am. Difficult at home, carry to bath, get into tub with him but much fun. The tub is a huge one in this new house. Farhaan enjoys playing TV games (basic ones) on one of the satellite channels. Just today he changed the channel to a music one and asked me to take him to the window to look out. Stood by himself while holding the burglar guards for support and danced to the music. Improvement happening but slowly. Just so happy he is out of the danger zone. My best to all you guys on this forum. Your help thru my terrible times was a big factor in me getting through and will be in future. Thanks again guys. This forum is terrific. Cheerio for now

Hi Farhaan will have his stomach peg removed next week and then he will be discharged from hospital. I was very scared when i was told this. I had this idea that Farhaan will only be discharged when he is almost well. I guess his healing will have to continue at home. He will be reviewed for two weeks by this school "Open Air" to see if they will register him for next year as a student. Things just happen in a flash - leaving you feeling like things are happening beyond your control. Almost like a dream - everything seems so unfair and at the same time unreal - yeah yeah - i feel as confused as the sense of my words. Stroke is stroke and can be healed to an extent but Brain Stem stroke - seems like a whole new disease - or is it?

very very very concerned Had a meeting with the neurologist and therapists yesterday. They are extremely happy with Farhaan's improvement. I am worried. He can move his hands (left) much better, swallow much better and balance himself when sitting but thats all. Will he improve? Will he Talk again? Will he walk again? is it too early (almost 3 months since stroke) I am not getting any more reassurance - i am confused Is this how my son gonna be.........................

It has been a long time since I blogged

more positive news Yesterday, a new PT got Farhaan to walk, with lotsa aid tho. He made the movements slowly but intentions were there. Still a bit flacid around the stomach.

Hi guys Farhaan had his second massage yesterday :) :) :) :) :) :) :) yes yes i cant stop smiling.......... After the Olive Oil massage (more like bath), he settled and prepared for his daily dose of Star Trek (yes i converted my son into a Trekkie), while watching from the corner of me eye i could see Farhaan got his left hand index finger in his nose picking away - have a jolly good time. I did not want to startle him; i just acted like i did not see. A few minutes later, he had the index finger of his right arm in his nose and continued with his jolly self. Yes it was both hands. Ever since this incident, Farhaan cannot keep his hands from his nose or his mouth. To see him using both his index fingers for this activity really gave me something to shout about - i just hope this progress continues Zain

Hi Diane You are correct about these medical staff - they could tell you the truth in a nicer way - or dont be so damn pessimistic, including some of the neurologists -i was surprised - i thought maybe when they are studying being doctors they need some Communication courses added to their syllabii. Sometimes i guess they protect themselves by giving the 'worst case scenario'. I made a statement to one of the neurologists - he did not seem happy about it "Medical science stops at the brain, or rather below the brain" The guys at the Rehab clinic are fantastic tho.