Any Cerebral Palsy parents out there :)

[essie0828]

Thanks hun I'm over the moon! She took 2 steps on the day she turned 22 months old. Odd amount of 2s there We were able to get her to do it again for my mom and OH. My mom cried and tried to hide it I can't wait to see what DD can do by the new yr!

 

[lilesMom]

That's really great.
Now she has started u will be running after her soon enough. hee hee
She looks gorgeously n ur pic
Simon can roll now and can go backwards a little on the floor.
Its great to see progress xxx

 

[nearlythere38]

Hi ladies

Not having a good time at the moment. On december 23rd Ava had a different kind of seizure, we went to hospital. On boxing day she was transferred to the big hospital. The seizures started at every hour 2 hours from monday and are now every hour. She stiffens, her eyes flicker, she loses colour and she clicks her tongue. They are very frightening. Her oxygen drops very quickly, has been as low as 14%. So is needing oxygen with each seizure. Shes had a CT scan, various blood tests which have come back normal. Her eeg was abnormal this time and shows where the seizures are starting from. They havent been able to control them with meds as yet, and so far she has required 5 'rescue' medications which then sedate her for a day. Shes asleep most of the time and not feeding. They are speaking to the genetics department tomorrow and wil be arranging another MRI. Still awaiting lumbar puncture results xx

 

[lilesMom]

Oh no. Xx h s xx
It took them days to control Simons initial seizures too
He was sedated and drip fed for days.
Its so tough xxx
I'll be praying for answers for u xxx

 

[essie0828]

Oh no hun. praying for Ava. I hope the seizures stop very soon.

 

[lilesMom]

Hi guys.
How are ye?
Nearly there how's ava hon xxx
Hugs xxx

Essie how goes the walking? X

Simon is doung well.
He is motoring with food.
Meds are still working thank god.
I'm even getting some time to ecexercise again.
;-) so I'm feeling bwtter too.

Hope ye r well xxx

 

[essie0828]

Go Simon! It's so fun to feed them new stuff at that age, especially if the reflux monster stays away. Yay for rolling and scooting DD didn't roll properly until almost 9 months. I'm glad to hear the seizures are being controlled with his meds. It's nice getting a little time to exercise huh? Or any time personal time for that matter. Now that DD is quite mobile I find myself wishing I could poop in peace. Never fails, she follows me in the bathroom, waits till im "busy" and then trashes the bathroom. Silly girl.

I've been wondering about Ava. Hope things are ok :

 

[lilesMom]

i had big thing typed and comp dissapeeared it again, arrgghhh

hope ava is doing ok xxx

essie glad things r goin well.
simon comes everywhere with me too cos of reflux,
u know how it is
he was doing great but now bit blocked up from food so its back again.
idd u ever use laxatives for dd?
i have prescription but am reluctant in case he comes to rely on um.
i have gravity strider at home and use it when simon is asleep.
i def fell much better since using it regularly again
he can sleep in buggy by day now again and it gives me a huge break to get things done
hope alls well xxxx

 

[nearlythere38]

Hi ladies,

Still in hospital here, 3 weeks now. Ava is still having seizures, not responding to meds so far. Her MRI was abnormal, showed diffuse changes and slight shrinkage of the brain.

They are querying PEHO syndrome and storage disease. Waiting for various test results.

Unfortunately they have said that given Ava's clinical picture and deterioration, they feel that she has a life limiting condition, and is unlikely to reach adulthood.

 

[lilesMom]

Oh nearly there.
I am so so sorry. Xxx
hve no proper words to convey it.
If u ever need to chat or vent or whatever I'm here.
On here or pm me if u like.
Hugs honey. I am so very sorry.
I hope ye get some relief and some bwtter news soon. Xx

 

[sophxx]

Hi ladies,

Still in hospital here, 3 weeks now. Ava is still having seizures, not responding to meds so far. Her MRI was abnormal, showed diffuse changes and slight shrinkage of the brain.

They are querying PEHO syndrome and storage disease. Waiting for various test results.

Unfortunately they have said that given Ava's clinical picture and deterioration, they feel that she has a life limiting condition, and is unlikely to reach adulthood.

So sorry to read that. My auntie was told this when my cousin was born brain damaged. She has quite serve learning difficulties but has just celebrated her 50 the birthday. X

 

[essie0828]

Nearlythere there really are no words. I am so sorry hun. Cherish every second with her and come here anytime to chat or talk if you would like. You are always welcome here.

 

[essie0828]

Lilesmom I did have to use laxatives with DD and still do sometimes. We use an osmotic laxative. The docs recommended juice for her but she never would drink it and still won't. Most likely, if he will drink it, juice will unblock him. The sugar acts as an osmotic laxative, a natural one. Our doc said we could give her 2oz full strength juice per pound of body weight per day until she pooped. Plus all the extra water he will drink. Also you can try bicycling his legs, rubbing his tummy in a clockwise circle, warm bath, and checking his temperature rectally with lots of lube. All those have worked for us depending on the severity of constipation. There have been times I've had to try all those and then resort to polyethylene glycol as a short term last resort per doctors recommendations.

 

[essie0828]

Also avoid giving him bananas, rice, apples, and bread for a while until he's regular then reintroduce them one at a time to see how he handles them. Our doc said to go for "P" foods. Peas, peaches, papaya, pears. DD loved pureed carrots and butternut squash but too much of those constipated her to. There was tons of trial and error with her until I found a diet she did well on and no sooner than we nailed it her tastes would change Feeding is a struggle for us sometimes.

 

[essie0828]

We have had some new developments with Hayley and not the good kind. She's pronating her wrists now and showing tone related tightness in her hands and arms. She was motoring on with sign language but has stalled out with it as she is frustrated with her hands. We go to the CP clinic at the #3 hospital in the nation on the 27th of this month and I fully expect her diagnosis to change to ******* quadriplegia. I was really hoping her hands would be unaffected as that's how she communicates But over all she's making progress and I'm very thankful. She's up on her feet more and more and loves walking even though she still needs help with balance. She's bringing me things I ask for, usually her tablet so I can turn on her game . She was measured for wrist splints and we should have them soon. Her OT is great and is helping tons. We also have her in a Kaye Walker now and she insists on pushing it backwards but she is up and walking with it. I'll take it!

 

[lilesMom]

Lilesmom I did have to use laxatives with DD and still do sometimes. We use an osmotic laxative. The docs recommended juice for her but she never would drink it and still won't. Most likely, if he will drink it, juice will unblock him. The sugar acts as an osmotic laxative, a natural one. Our doc said we could give her 2oz full strength juice per pound of body weight per day until she pooped. Plus all the extra water he will drink. Also you can try bicycling his legs, rubbing his tummy in a clockwise circle, warm bath, and checking his temperature rectally with lots of lube. All those have worked for us depending on the severity of constipation. There have been times I've had to try all those and then resort to polyethylene glycol as a short term last resort per doctors recommendations.

Thanks for great info xxx
I was reluctant to give juice incase it maje reflux worse.
But if ir avoids lax then prob good idea xx
Thanjs honey.
Still trying to find his best diet
Cos he is only eating 6 weeks ;-)
Thanks hon.
Hope Alls well xxx
How's dd xxx

 

[lilesMom]

Nearly there. I've been thinking bout u and ava all night.
Hope ye r as well as ye can be in present situation.
Hope meds start yo work soon and ye get to go home.
Hugs xxx

 

[lilesMom]

Sorry I was posting as I was reading.
I'm so naive . I dient realise that diagnosis change coups happen.
Sorry it's affecting her hands more xx
Simon has asplint for right hand for nt time.
It's helped loads.
His hand is much looser. No swelling any more
And he is more inclined to use it.
I love our OT too ;-) xxx
Woohoo. Walking is walking.
Directioncomes later xxx

 

[lilesMom]

I was wondering why brown sugar and water worked so well tomove bowels.
Just gave him pear juice AMD water.
Worked already xx

 

[essie0828]

I was wondering why brown sugar and water worked so well tomove bowels.
Just gave him pear juice AMD water.
Worked already xx

Yay! Im glad he likes the juice. Pear juice was the only kind DD would ever drink but she only took sips. I have had to put brown sugar in her milk before to help her go.

When DD was diagnosed her neurologist didn't get to examine her arms well as DD was throwing a fit and wouldn't let the neurologist touch em. The neurologist said that she was calling her diplegic for now but things may change. It's looking like they have. She's also showing signs of right sided hemiplegia. Her right arm, leg, back muscles are all tighter and she uses them less. She's super sensitive on the right side of her mouth as well. We have to do oral desensitization stuff with her because she guards her mouth so bad. Does Simon get freaked out if you touch inside his mouth, cheeks, gums and teeth??