Any Cerebral Palsy parents out there :)

[essie0828]

Hello

My 18 month old daughter has just been diagnosed with diplegic cerebral palsy. She has Global Developmental Delay as well. We are just beginning our journey of specialists and therapies. I would like to hear experiences from other parents of kids with CP, no matter the type or age of the child. What I don't know about CP could fill an ocean but I will try to answer any questions you have.

 

[essie0828]

Surely I can't be the only CP mama in here

 

[helloeveryone]

Hi my daughter is 10 years old my daughter has cp we found out when she was 2 years old..xxx
So no you are not the only cp mummy out there..

 

[essie0828]

Helloeveryone. I was getting a bit lonely in here. Thank you for your reply!
May I ask about your daughter? What type of CP does she have? Do you mind to explain a typical day? Therapies, exercises, stretches, school? And of course silliness .

For us Hayley is still very much a baby and her CP is starting to evolve some. She started out hypotonic but is starting to develop tightness in her hamstrings and calves. Her Achilles tendons are tight as well and every step she takes (assisted by me) is on her toes. She also stands on the insides of her ankles a lot. We are still in the beginning processes of therapy, PT, OT and Speech. I'm very inexperienced with CP but I read every thing I find about it.

DD is such a great little girl. She's super sweet and laughs at just about everything. Gives lots of cuddles and loves to try and feed everyone. I usually end up getting a drool covered pacifier shoved in my mouth at least once a day

 

[helloeveryone]

Helloeveryone. I was getting a bit lonely in here. Thank you for your reply!
May I ask about your daughter? What type of CP does she have? Do you mind to explain a typical day? Therapies, exercises, stretches, school? And of course silliness .

For us Hayley is still very much a baby and her CP is starting to evolve some. She started out hypotonic but is starting to develop tightness in her hamstrings and calves. Her Achilles tendons are tight as well and every step she takes (assisted by me) is on her toes. She also stands on the insides of her ankles a lot. We are still in the beginning processes of therapy, PT, OT and Speech. I'm very inexperienced with CP but I read every thing I find about it.

DD is such a great little girl. She's super sweet and laughs at just about everything. Gives lots of cuddles and loves to try and feed everyone. I usually end up getting a drool covered pacifier shoved in my mouth at least once a day

Hi my daughter Amy is a lovely girl she copes with things well,not sure what her cp is called maybe you can tell me ?? her cp mainly affects her legs but on one leg her left it is worse it does affect her hands but Not as bad as her legs...
She wears casts one big one on her left leg and a little one on her right side..
She has had a few operations including her Achilles' tendons cut and lengthened ..because they were getting tight..but I think she was about 7 before they did that..(it did work for a while but it wears off when they grow )
She has had lots of Botox in her ankles and hips..this relaxes the muscles so they can put their heels down a bit more..(but these injections only last for a few months and they can only do them ...(well for. Us every year or two.)
Amy has exercises to do every day...
When did you find out about your daughter having cp ??
She sounds a happy little girl..
.anyway better go now I have 5 other children so always loads for me to do with all Amy's appointments and kids clubs and 3 different school runs..washing clothes etc......
But I love it really.....speak soon..xxx

 

[essie0828]

Oh my you are a busy busy mama. Wow, Amy sounds a lot like Hayley . Hayley was diagnosed on Aug 19, just a week before she turned 18 months old. According to the neurologist her arms were largely unaffected but she couldn't get a good exam on her arms at the time. When they have high tone (tightness) and only 2 limbs are involved, legs or arms it's considered ******* diplegia. If all limbs are affected it's ******* quadriplegia. There are also combinations or mixed CP. And tons of varying degrees of severity. My best guess is Amy may be ******* quadriplegic or have mixed CP. Do her arms move in slow, uncontrolled "writhing" movements? If so she may have atheoid cp involvement in her arms and ******* diplegia in her legs. It's all super confusing. I have a good link to a website that describes the different types of CP. I'll post it in a bit so you can try and match up Amy's symptoms to a type.

I just knew Hayley had CP when she was about 12-14 months old. I could just tell. Her feet always gave it away. Not to mention she had lots of risk factors for developing CP. I had a history of miscarriage, thyroid disease, and she had a very traumatic birth. She was born via c-section, breech, and her head was stuck inside for some time. She was born blue and not breathing. We thought she was a still birth but after the longest few min of my life we finally heard a tiny weak cry. She rallied after that and we got to take her home after 2 days.

Gosh helloeveryone, you have to be super woman! I can't fathom how you get everything done without a cape and super hero powers Six kiddos! But you are right. It's the best job in the world

 

[essie0828]

Ughh B&B censors the word sp@stic. So all those little stars in my post are the word sp@stic

 

[essie0828]

https://emedicine.medscape.com/article/1179555-overview#1

 

[essie0828]

https://www.moveforwardpt.com/symptomsconditionsdetail.aspx?cid=29dfec56-f6ff-4609-a92b-8626c9e544c0

 

[essie0828]

The last link is the better one

 

[lilesMom]

Hi I was coming on here to make a post pretty much exact same as it initial one . My son is 15 weeks. He has mild cp. He has hemiplegia on right side. He had a large stroke soon after birth. He is very good though. Have been doing physio with him since a few days old and am starting proper appointments now really. He is a little sweet heart . We r hoping with all the help he will be getting he will do really well.

 

[essie0828]

Hi lilesmom

It's great that you have been getting therapy for your LO since birth. I'm sure it will help him so much. He's sooo young. Makes me miss when Hayley was just a little squish ball

We are just beginning PT and speech therapy for Hayley. We met her therapist and scheduled times to meet yesterday. I'm excited to try and help her walk. She really wants to

How is you little man about feeding? We used to have trouble with DD. She ate 2oz every 2hrs until she was 4mos old. Whew! Thinking back now, I think she was tiring out because of the CP but we didn't know it.

 

[lilesMom]

Aw that's great she will be getting help to walk. Therapy will do her so much good. X
They reckon cos Simon can bear weight on both legs that heveill crawl and walk too. He might be later but I dont care so long as he can. ;-)
Simon is a little milky guzzler thank god. He has silent reflux which we r just getting a handle on with zantac and carobel. They've gonna check his swallow too just in case he has a problem with it.
He does tire pretty fast. It never dawned on me he prob gets more tired cos he has to pur more effort into moving .
Hope ur therapy app goes really well x

 

[mummytobe_93]

i'm not a parent to a cp child but i have a family member with sp*stic quadraplegic cerebral palsy that i also care for.

He is 13 and cannot talk or walk, and also has the mind set of a two year old- he is very loving and laughs a lot, he is also fed by gastro tube and is on lots of medication.

he has lots of therapy physically and also speech therapy so he has learnt to make more noises which occasionally sound like words. its crazy how cp sufferers (if you can call them that?) range so much physically and mentally!

 

[lilesMom]

Hi mummytobe.
Cp does have a massive range doesn't it.
No wonder I didnt really know what to expect when we were told ;-)
Do u care for him on ur own hon ? Xx

 

[essie0828]

i'm not a parent to a cp child but i have a family member with sp*stic quadraplegic cerebral palsy that i also care for.

He is 13 and cannot talk or walk, and also has the mind set of a two year old- he is very loving and laughs a lot, he is also fed by gastro tube and is on lots of medication.

he has lots of therapy physically and also speech therapy so he has learnt to make more noises which occasionally sound like words. its crazy how cp sufferers (if you can call them that?) range so much physically and mentally!

The range is baffling! And the combinations, and types It's very confusing.

It's like now that my daughter has been diagnosed, I see CP everywhere. Kids at DDs appointments and out in public and each one is different. The brain is such a complex organ.... It really makes getting an accurate prognosis difficult. Especially for the younger kiddos like my DD. We really don't know what to expect with her. The not knowing is hard.

 

[essie0828]

Mummytobe it's funny you say that your family member with CP is very loving and sweet! That is the one and only consistent thing I've seen in people with CP. Their smiles, (my DD included ) are amazing. Not fake at allLll

 

[essie0828]

Lilesmom, we still don't know what to expect with DD as well, because she is still quite young. The uncertainty is scary.

 

[essie0828]

Hey helloeveryone How's it going? Hope things are well

 

[lilesMom]

Lilesmom, we still don't know what to expect with DD as well, because she is still quite young. The uncertainty is scary.

I try not to get ahead of myself and just enjoy now. But is hard sometimes.
He is doing great now and im hoping he continues it ;-)
Xxx