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i have a 2 year old son with cerebral palsy. anyone would like to share experience with me taking care of special need child? |
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Reply #1 noyy's post
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i pon ader...niece..2 years old jugak......... |
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Reply #2 encha's post
ooo...saya mencari tempat untuk share kisah dia dengan sesiapa yang sudi  . at the moment, dia baru pandai meniarap. and terribly underweight  . dia tak nak makan nasi. nak ganti dengan apa? setakad ni dia cuma makan nestum. |
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just get urself involve with the PERSATUAn lah...kalau nak dapat kan support .. |
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judging from the post , akak, as if u the one managing him..jer sorang wherears if u could speak and write like this or even said thsi to ANY PAEDIATRICIAN they will surely know where to get thsi child managed and IAM SURE DAMN SURE he will be referred to the appointed professionals....YA RABB |
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Cerebral Palsy
Also called: CP
Cerebral palsy is a group of disorders that affect a person's ability to move and to maintain balance and posture. The disorders appear in the first few years of life. Usually they do not get worse over time. People with cerebral palsy may have difficulty walking. They may also have trouble with tasks such as writing or using scissors. Some have other medical conditions, including seizure disorders or mental impairment.
Cerebral palsy happens when the areas of the brain that control movement and posture do not develop correctly or get damaged. Early signs of cerebral palsy usually appear before 3 years of age. Babies with cerebral palsy are often slow to roll over, sit, crawl, smile or walk. Some babies are born with cerebral palsy; others get it after they are born.
There is no cure for cerebral palsy, but treatment can improve the lives of those who have it. Treatment includes medicines, braces, and physical, occupational and speech therapy.
National Institute of Neurological Disorders and Stroke
http://www.nlm.nih.gov/medlineplus/cerebralpalsy.html |
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Reply #4 mbhcsf's post
thank you for your reply. actually this is what i'm afraid of. people blaming me. you should understand. i'm not just waiting and did nothing.
i just need to share experience taking care of my child at home.
for your information. saya memang bawak dia check up di klinik pakar dari mula dia lahir sampai last 18th february appointment. saya juga membawanya ke otorinolaringology dah rasanya lebih 3 kali to make sure whether he has any hearing problem or not.
he even already had brain scan, EEG to find out whether the development is ok or whether there's any epilepsy problem. initially he took doses of clonazepam but. but we already stop giving him that.
we did go to another alternative treatment like, hyperbaric oxygen therapy, color vibration therapy, massage every week and even I read a lot on stem cell therapy (but seems like it doen't have any proof that it's effective.
oohhhh please...
i do not know actually am I asking too much.
actually i also bring him to physiotherapy, hydrotherapy, speech therapy, occupational therapy.... at SJMC, SMC, and of course PJSC. I know about Pusat spastic....(he already registered as an outpatient at pusat spastic) and I also know about hippotherapy... i call them already but they said that he's too young for hippotherapy...
we also attend a counselling session for diet dan pemakanan.
please.... i'm a mother....i'll do my best for him....but...maybe it's not enough...
[ Last edited by noyy at 28-2-2008 03:43 PM ] |
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Reply #7 azz_azza's post
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TQ for the information given. I really appreciate it.. |
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then
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what has been told reagrding his feeding / swallowing problem? what have u done so far? |
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i think rasanyer akak kena banyak berhubung dgn speech therapist dan dietitianlah aka sebab pada saya the most worrying part is the underweight/ diet/feeding problem
akak, cuba tanya spech thera[ist tu, ada tak dia bagi exercises ? oromotor ker atau sensory stimulation arounf the peroral region? ( ni bhgn mulut atau dalam mulut) klau tak suruh diabuat demo...
hmm..anak akak sekarang ni makan what kind of food texture?
things you did well..
massage tu bagus at least in a combination with Physio people, the the spasticity would be reduced.
KEEP doing the exercises and homeworks. sebab i am sure yg therapist ni akan bagi carry over home-based program.
keep on giving language and oral stimulation, just curious
anak aka dari segi
bahasa dan pertuturan:
apa dia boleh hasilkan ( bunyi apakah)
macam mana dia indicate his wants?
crying?
gestures? |
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hmm?
Originally posted by noyy at 28-2-2008 10:27 AM 
thank you for your reply. actually this is what i'm afraid of. people blaming me. you should understand. i'm not just waiting and did nothing.
i just need to share experience taking care ...
hippotheraphy?? tu aper?
never heard ..is it hydrotherapy?
if u had the chance to go and visit PJ spastoc centre just go and visitlah saying that you just interested to seek advice and seeing the professionals as u would desperately need some helps...berhubung dgn sekolah lah O ni i oun pakai cakap jer ni ..but guna budi bicara lah) how the children are being intervened.Ade Ot, sp[eech pun kat situ..ada parents lagi yg you could at least sit and talks, i tell u depa ni mmg berpengalaman. That's the placelah. |
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Reply #10 mbhcsf's post
thank you for your reply.
sekarang, dia ada makan roti yg dicicah milo, nestum. dulu kami blend nasi dan campur dengan nestum. tapi sekarang, bila kami suapkan, dia menangis. bila buat nestum baru dia diam dan makan. itupun nestum base gandum. kalau nestum beras dia tak nak. dia minum susu pediasure. dietician advise bagi mct oil selang menyusu utk bagi dia tenaga. selain dari tu kami bagi multivitamin dan folic acid. kalau dia suka, dia akan kunyah dan makan. macam roti, kek, etc. (diet utk underweight) tapi kalau bagi telur, rebus..atau yg lain-lain, dia akan keluarkan balik dan menangis |
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Reply #11 mbhcsf's post
ada juga saya urut pipi dan gosok lelangit serta leher. saya ada belajar di hospital. tu masa dia baby. right now, since dia paham apa saya cakap, bial saya suruh nganga, dia akan nganga. bila nak gosok gigi dia saya kena nyanyi lagu yg sama. exercise yg golek atas bola, giving him toys and ask him to give it back... etc ada la buat di rumah. bacakan buku cerita.
well, yes if he want something, he'll cry, or he'll get it himself. if not, he' will stare at something/anything that he wants.
unable to speak yet. but there's a sound. like baby's. |
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Reply #12 mbhcsf's post
hippo is an exercise where the child akan tunggang kuda. and of course with assistance. gerakan secara semulajadi kuda is a therapy. otot2 child akan bergerak. even the warm of the horse's body can help. nih yg saya baca la.... ada dalam paper...tak pasti date
as i mentioned, dia memang dah register di PJSC petaling jaya spastic centre. ada la buat therapy di sana. termasuk hydrotherapy.
and I am sharing experience with other mothers with CP child. tapi saje la register di sini.... ok kot |
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aii..banyak nyer info.
okay dia dah ada suara lah kan?
He is producing sounds? like a baby ...be more specifics like [ aa..ai] or ???
ada tak sounds ni [dada] ,[ma] ,[ba...]
okay what you could do to fascilitate language is that
whenever he is looking at something = the desired objects/ things, you could or may want to say
ooh..adik nak _______ , ke? buat acoustic highlights / emphasized words tu. Cth
adik nak CAR ker? Yer ?
nak car?( kuatkan nada sikit jer tang CAR tu)
Make sure dia namoak muka akak and paying attention.( sebanyak man mungkin sebab ken afaham he's only 2 )
than you buat macam ni, kalau tangan dia boleh guna, buat macam gesture meminta guna /hulur tangan tu dan letak CAR on his palm. AND YOU SAY NAK CAR. so that he could form the association between held an open palm gesture ( tangan hulur tu) + ader benda ( reward lah)
ini nak ajaq dia guna the word "NAK" - high frequency and functional language for requesting.
so akan combine VERBAL language tau dan bahasa gaya badan.
lepas tu Speech Tx punya goal apa dia akak?
okay tak dgn carry over...
tapi the key is consistent language input.
lagi satu = oral hygiene ok kan? |
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Reply #16 mbhcsf's post
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banyak la info given...dah banyak tanya nye... |
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so cam ner akak?
kalau aka bukak thread ni kat parenting board tentu banyak org mai tolong share |
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ooo ye ke...? k .. nanti i try |
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Post time 27-2-2008 01:29 PM
变色卡
Author
