#21
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Hi All

My little boy is 16 months and is awaiting conf of diagnosis of CP. They have said he does have CP but cause they want to do more tests they wont diagnose until they are done. He was not prem (supposedly) but has a bleed and cysts on the brain since pre birth.

He can now sit aided and has head control but thats it, my son sleeps twice during the day but hardly at all at night as he just can't tire during the day.

Life is becoming harder the older he gets but we finally have a special pushchair coming in 3 weeks so I shall be able to get out.

He is so strong willed though and I would only change him for an easier life for him not me.

Its inspiring to here all your stories as life is so uncertin

Kara
xx
#22
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Hi

My name is Anj - I have 2 daughters youngest of which Emma, 11, is diagnosed as having cerebral palsy, Epilepsy, Feeding Difficulties & Communication Difficulties.

We have had a roller coaster journey with her. She was born at 40wks and due to a uterine rupture suffered severe oxygen deprivation. The paedatrician did say he had expected her to die during the 1st night. She fitted for 48 hours after birth despite being heavily medicated. I kind of always knew that there was something wrong but lived in denial. Ems has weakness on her left side and cannot walk but I will say that there is nothing wrong with her understanding.

Emma is hard work - trying to keep her happy and entertained is quite hard but on the good days when she signes that she loves me it makes it all worth while.

The biggest irritation that I have found is when adults stop and stare at her. Emma underneath the disabilities is a normal 11 year old girl and I hate the staring. She is also tube fed via gastostomy and was fed via NG tube for 18 month prior so I would be more than happy to share experiences if anyone wants to xx
#23
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(05-24-2010, 08:57 AM)Anjporter Wrote: Hi

My name is Anj - I have 2 daughters youngest of which Emma, 11, is diagnosed as having cerebral palsy, Epilepsy, Feeding Difficulties & Communication Difficulties.

We have had a roller coaster journey with her. She was born at 40wks and due to a uterine rupture suffered severe oxygen deprivation. The paedatrician did say he had expected her to die during the 1st night. She fitted for 48 hours after birth despite being heavily medicated. I kind of always knew that there was something wrong but lived in denial. Ems has weakness on her left side and cannot walk but I will say that there is nothing wrong with her understanding.

Emma is hard work - trying to keep her happy and entertained is quite hard but on the good days when she signes that she loves me it makes it all worth while.

The biggest irritation that I have found is when adults stop and stare at her. Emma underneath the disabilities is a normal 11 year old girl and I hate the staring. She is also tube fed via gastostomy and was fed via NG tube for 18 month prior so I would be more than happy to share experiences if anyone wants to xx

Wow your story sounds a little similar to mine I was 38 weeks and Grayson and I were left for over 48hrs after ruptured membranes, they forgot to give us antibiotics and grayson was in scbu for 4 days fitting and they told me there was nothing wrong.
Graysons left side is also very weak, although he is only 17 months his paed says he has high intellegance. Like your daughter Grayson in the past 2 months is very hard to keep happy, up until now he was always smiling but now he is sad and irritable alot of the time.

Grayson is awaiting a gastrostmy to help his feeding but I must say I am a little anxious.

Thanks so much for sharing your story it gives me hope that I shall be able to cope.

I agree other people is becoming my issue, cause Grayson looks "sterotypically" normal when he can't do things or in his special chairs they all look my husband is alot stronger and he just pretends their not there but I just want to scream and shout.
#24
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Hi

My youngest who is just 4 has CP at first we was told he had isolated hemihypertrophy (one side of the body bigger than the other)prone to wilms tumors so had to have scans every 3 months. My son was given a MRI scan when I asked which side of his body was the right size. The MRI scan found he had CP and not isolated hemihypertrophy, it was a shock sounds strange but we were all happy (he didnt have isolated hemihypertrophy) and the worry of cancer, and sad at the same time.

My son hardly sleeps 3 maybe 5 hours if lucky, he doesnt feel pain so has to be watched 24/7 which is hard being a single parent. Hes recently been fitted with a leg splint which has given him blisters on his foot, so back to Alder hey for more padding. He can walk but his little leg gives way and he falls alot.
#25
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Hi also another new person to the site. My daughter is now 4 and has spastic dysplasia cerebral palsy, mostly in her right side. Going back to the sleeping comment - sometimes she sleeps for ages and then other times I can be up and down like a yo yo!. One thing I have noticed is her levels of aggression. I am trying to work out if this is the CP or just her frustration. Things have eased off since her communication has increased. She would regularly bite and her jaw would then spasm so rip into my hand. Has anyone else found there children suffer with aggressive outbursts, that are slightly more than regular toddler tantrums?

She is also about to have botox in September and I would be keen to hear from other Mum's who have had this treatment to see how there children have got on.


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