24year Old Mum,of A2year Old Who Has Spastic Diplegia Cp.

paucat

hi haley,
i was reading your post, as ive just joined in the last 5 mins, to cut a very long story short, my son will be 6 in feb, after a difficult birth etc, we were told he has a very rare genetic dysorder, beckwith weidermann syndrome, that was bad enough, then we went on because he looked as if he had black eyes, we found out he had a brain abnormalitiy another extremely rare one, his plumbing in his brain was back to front his blood drained down the front of his face and not down the back as a normal person, due to a blockage at the base of his kneck and skull, any way he started to develope and had problems he didnt walk until he was over 2yrs and he didnt speak either, everything was put down to his conditions, we will now jump forward a few very estremly difficult years,he now had a wheel chair as he couldnt walk far,pedro boots they tried splints etc, was at a special needs school,and tipie toed walked etc, couldnt talk, now signing and using a talker,but now starting to use words,found out years back he had slight brain damage due to hpoglysemia unniticed at birth,which if i hadnt noticed my son would have been dead, wellhe has been plodding along with all his difficulties,and making good progress,then we were told about botox injections in his legs, he was access,and he got his injections on 23rd and it went well, goes back in jan for his casting,but it wasnt till i was given a blooklet on treating children with cp with botox , so many things stared to go ping, and i asked the consultant does paul have cp, and she stood and looked at me hesitated then said yes it all comes under cp, doing more reaserch going by what the doc said it is spastic diplegia, to be honest im not going to stress out over things as it only really names what has been wrong with his legs, but would i have be told if i didnt start asking questions or is everything going to be kept getting put down to his "other conditions" im sorry aout going on once starting i just cant stop, but i really want to know who else has had the botox done to their kids with casting and what has the outcomes been and thier opinions, given everythin though regardless to how hard things ahve been and they have been difficult, as he has problems sleeping as well i wouldnt change him for the world he is one cheeky, funny strong mimded individual, who has just had one more medical name added to his list michellexx

Wicksy

Hello everybody

I am new here, my 2 1/2 year old daughter has just been diagnosed with CP. She seems to have it very mildly, and can walk just holding onto my finger. (and has taken a couple of steps on her own) She can jump up and down if holding onto something. She only has spasticity in her lower legs, her upper body seems to be unaffected as she can eat with a knife and fork, drink from a glass with no problem. She talks for England and is far more advanced than her sisters were at her age.

I just wanted to say thank heavens for this forum and everyone sharing their and their children s experiences, It has been an enormous help to find that there are others in my and my daughters position willing to help others.

Neil

shanieharrysmum

hi to all you wonderful parents,reading all your posts just touches my heart so much,i wanted to register then ask for some parental advice on my son harry,hes my 3rd child and is 15months old ,was 2wks prem no probs at birth,but i did notice a eye squint,then noticed harry wasnt even trying to crawl or very flexible in his knees he was late to sit up at 11months old,and now drags his legs behind him like hes got a tail(commando crawling)ive been told and lots of rolling,he doesnt talk either well screams out alot and always moaning,hes started pointing and babbles alot and does say what we can make out "all gone,nanny,ba ba,! no mum or dad like my girls did,his ankles are stiff and from knees down seem tight too,when you try too walk him along he has no balance at all he cant even hold himself in standing position hed just fall,and on tiptoes completly,his memory is great and he seems to understand what we say to him but just communicates back by squealing at us! please could you let me know your opinions!! my doctor has mentioned an mri when harry is 18months old and did mention spastic diplegia but said we have to wait!!! i feel like ive been smacked in the face and in shock,,but after reading other posts it has helped to think were not alone!! shaniex

traceyb113

Hi Stacey,
Sorry it has taken me a long while to reply, I don't get onto this forum very often. Being a mum of 3 seems to sweep me away for weeks at a time!
We were given Chris's Kaye walker on long-term loan from our local Special Needs Centre (White Lodge Centre at Chertsey), this is where he regularly visited his physiotherapist until he started at mainstream school last September.
We have still got a frame from there, and they seem ok about it at the moment. I don't think you will need to buy one, your physio should be able to source one for you.
Tracey
x

JohnSuddes

Hi Shainie

This sounds very much like our little boy who is now just over 3 years old. We have just received his diagnosis this week after an MRI revealed Spastic Diplegia. It had been suspected for the last 4 months since our last visit to the hospital when a different doctor mentioned it. We then had to wai 4 months for the scan!!! Up until that time i had never entered our heads and the previous doctors had not mentioned it either.
Rio has had problems from birth due to his parents both being drug users and had to spend time in SCBU when he was born as he was withdrawing from Heroin addiction, therefore he has always been playing catch up with his development and we had always just put it down to that. He also had a squint in both eyes and had an op to correct this at 10 months old the op was not 100% succesful however there is a huge improvement and he now wears glasses for his eyesight and to help straighten his eyes. Like your baby Rio did not sit up unaided until he was 10 months old and did not make any effort to crawl. When he finally did crawl it was commando style dragging his legs behind him however he did have very strong legs and was always trying to jump if you hel both of his hands he never tried to make stepping movements he jump everywhere lol
His attention span was non existant and has a foul temper, he had very poor fine motor skills. He has a portage worker now that comes to the house and works on his motor skills and tries to improve hiw attention which I have to say seems to be working. He sees speah and language although as yet they are only monitoring him not really working with him but his speech is improving slowly he can say a number of words now and with effort can say two words together like 'yes please' 'more please'. He took his first stes at 22 month 3 days after our first visit to hospital about his not walking, he took 4 steps then did nothing for a while then tok 8 stpes then nothing for months. He is walking now but is very unsteady and falls all the time. He has Piedro boots which at first were like miracle boots and he was up on his feet straight away but now he walks just the same in normal shoes the boots were meant to correct very flat feet but don't seem to have had any impact on that at all. Anyway what I was going to say to you before my long rant was your child sounds very similar to mine and although no two kids are the same I am sure it will come it just takes them a little longer and a bit more effort. Rio is only mildly affected and I am devasted about that but he is happy and healthy and a joy to be around (most of the time) :rolleyes:

shanieharrysmum

Hi many thanks for replying to me,its been nice to hear such simmalarities with rio an harry,harrys mri scan cant be done until 18months plus old and hes only 15mths so its just a waiting game at the moment,were suppose to be having the squint op on 10th march but our consultant for the legs says the consultant for the eyes may want to wait to see what the diagnosis is before doing the squint op,,,not sure we"ll find out at pre op appt!! thanks again. shanie

katiemfletcher

hi there
i am also a 24 year old mother, with a 2 year old who has been diagnosed with cp spastic diplegia.
at the moment only her lower body seems to be affected..hips, legs and ankles. she can walk in her piedro boots but often falls, with her legs collapsing beneath her. when out of the house she is not so confident and needs to hold onto someone, or i put her in her reigns and keep her balance by holding them real tight.
she is refusing to wear night splints anymore, so now without her shoes on she is fully on tiptoes again and has terrible balance.

this website and forum has been so much help, just reading about people in similar situations, and people feeling the same emotions, makes me feel like im not the only one!

i am currently moving house from cornwall to the midlands (where im originally from) as i cant settle here and feel very unhappy, even though all my family are here). my daughter is very close to her grandparents here, so i am worried about how this will affect her? but i feel the medical care and attention she will get in the midlands will be better than in cornwall as i know there is more available. i am hoping to get her into mainstream nursery. can anyone offer any advice?

katie xx

Austinsmum

Hi All,

Our little boy Austin was diagnosed with cp spastic diplegia just after Christmas.He will be 2 in April.It all semed to be fairly quick from raising my concerns, yet again, with the health visitor regarding his not walking to hospital appointments and all sorts of tests, including an MRI. They gave Austin his sedative by mouth for his MRI just like calpol and he was out within minutes.His actual diagnosis was PVL.He was already attending a regular nursery as I returned to work full time when he was 10 months and they have been really great.His Physio is done at home and at nursery.He had his casts done for his splints last week and he gets those on the 15th.He chose a pink pattern from the chart but we decided that cars would be a better option!!! Bless.I am actually looking forward to him getting his splints as I know that will be the first step in getting him up and walking,like other mums I worry that he feels left out when all the other kids are running (even walking) around.He is a beutiful,bright little boy and always makes me smile.I would love him to meet other kids with similar problems just so that he knows he is not the only one but there are no groups locally.Maybe one day! Anyway I am so glad that I decided to have a look on here today,it is nice to hear other peoples experiences and gives a good insight in the Austins future.

Emma x

Austinsmum

Hi All, Forgot to say that we are in Warwickshire, just outside Leamington Spa, if there is anyone else local it would be nice!

Emma x

edovey

Hi Austinsmum,

My son has just been diagnosed with mild diplegia. I don't know any other child with this condition, but I'm not fat from you, I live near Stratford on Avon. My son Oscar is 3 years old, talking and learning really well. He can walk and kind of run, but he is unstable and falls frequently. He also walks on tiptoes on his left foot constantly. W eshould be having a cast soon, and the doctors were also mentioning botox. He had a CT scan earlier this year which didn't show anything, but apparently a mild case can go undetected. Feeling both relieved and shocked at the moment.
How is Austin getting on?

Liz

PennyB

Hi,
Though at present I am living in Africa, I sent my son to a Montessori Pre-school (here in Swaziland) and the results were/are nothing short of miraculous. The Montessori method was originally developed for CP sufferes in Hungary by a Proff. Montessori and if i hadnt seen the results for myself i would not have believed it.
I understand there is a good Montessori School somewhere near Leamington so before you decide to send your little one into Pre-school go n have a look. Penny B.

curliesue2

Hi all
I have a two and a half year old daughter who has spastic diplegia. She cannot stand or walk at all, slightly affected left arm and delayed speech. She is my 3rd child and i noticed something was't right with her legs when she was 10 months prior to this she could'nt sit properly,very quiet as a baby and did'nt really try to do much as a baby. It took me two vists to health visitors,doctors, two visits to local hospital back to the doctors and asking for a refeferal to Birmingham Childrens Hospital for them to tell me staright away what was wrong with her. Its been nearly a year since her diagnosis and i feel everythings been slow. She wears splints of a day time and splints and gaitors of a night time.

It was such a shock when we had her diagnosis as i never even thought of cerebral palsy. Me and my partner took it quiet bad and just could'nt get our heads round why she has it as there was no problems with my pregnancy or when i had her. The doctor said unfortunatley "god only knows why she has it".

I find it hard as my partner works longs hours and comes home when all the kids are in bed. My other children are 7 and 5. I did get diagnosed with depression in December but i've tried to beat it on my own.

Shes on the waiting list for Botox and has just had a walking frame and absolutley loves it. She keeps telling us that shes walking. It just makes your heart melt. She sees physio once a month, a play worker every other week and a speech therapist once a month. It is a bit overwhelming at times with all the appointments and she does get really distressed when going to hospitals but i keep telling her it is for er own good.

She is due to start nursery in September which i must admit i have been worrying myself to death over mainly how she was going to get around and how other children are going to react to her. I did talk to another mum who has a daughter with hemi cp. Although no two people with cp are the same it can help talking, i got little bits of helpful information from her.

I have a beautiful little girl who is extremley happy and a joy to be around and i would'nt change her for the world xxxx

jennirice

Hi. I have only just joined the forum and was reassured to read so many similar stories. I have a 9 year old daughter with CP spastic diplegia. She wasnt diagnosed until almost 7 as she had excelled in school and only suffered with her legs, which began to deteriate rapidly. Now at nine they are still unsure of her diagnosis beleiving there may be a genetic limp as i have suffered with my legs from a child and my father cant walk, (though niether of us ever had a diagnosis) She has been through botox, casts, calipers and 3 different types of splint and things are still deteriorating. They are now looking at medication which i am very reluctant about. I have not had support from any other people other than the medical staff involved and no genetic research or councellor. The school she attends are not very supportivr either ( only today did she get shouted at for not keeping up with the others walking to the local swimming pool!) It can be very difficult at times as, because she is bright and doesnt display any other symptoms, people do not realise what she goes through and she has become quite an emotional little girl. Any help, advice support groups would be greatly received. Thanks. I hope the treatment and support you have received has gone well over the last few years.