2 year old held constantly

Harrysmum2

Hi everyone I'm hoping you can help me. I have a gorgeous 2 year old boy with 4 limb cerebral palsy and epilepsy, he is a very happy little boy as long as he is being held constantly from 10am until he falls asleep in the evenings. He will go in his squiggles chair when he wakes for up to two hours but from 10am that's it. The moment I put him down he cries and then screams until he is picked up again. He never used to go in his buggy but now will go out for walks but I literally can't stop walking without him screaming. In the car I have to have someone in the back entertaining him but that doesn't always work.
The main problem though is at home as I can't get anything done and I now have another baby who is 10 weeks and obviously needs attention as well.
Has anyone else experienced this with their child? And have you any ideas what I can do to encourage him to go down for short periods of time?

imogen37

Hi

Have been wanting to reply for some time, but found it hard to get my thoughts together. Also not sure if I have got anything to say you find beneficial.

I can partly relate to your situation. My son is 17 months, 4-limb CP, no epilepsy. Last year he was crying constantly if not held. He was in pain with muscle spasms and frightened of his involuntary movements and being held stopped the involuntary movements, helped to control the muscle spasms and made him feel secure. I decided to ignore what the birth certificate says-because of his condition, he has not had the necessary motor/sensory/emotional experiences to learn that the world is OK. Because he was really not that able to move, he could not entertain himself, so wanted to be held for company and attention.

For the first year he was really bad at sleeping. For a daytime nap he would only sleep on a couch in the living room with TV on and people (mainly me!) coming and going. For night time he would only fall asleep in my or dad's arms, and even then he would reach out or peep out to check me/dad was still there.

Things have got better. Sleep started to improve after we used homeopathy. he would switch off more easily after that and I pushed and pushed until I got him to have a nap in his cot. For a few months he was also on Nitrazepam, which helped for a few weeks. He sleeps on his tommy. He is not the best of the sleepers now and most nights he ends up in our bed. Bach rescue night time helps with falling asleep.

That's my son. Don't know if I have managed to be any help though!

x

benedictajane

hello, my son is now 6 - he also cried almost incessantly for the first three years - I am not sure now when it started to improve but one very important step was when he had to have a gastrostomy - he became ill and as a result his swallow became unreliable for a period. Apart from helping with weight gain and general health, the gastrostomy enabled us to 'vent' him - his quadraplegia means he suffers from trapped wind that makes him very uncomfortable. he is also athetoid so his discomfort translated into extension making it very difficult to put him in a chair. He was always particularly unhappy in the car and this improved when we got a vehicle that could take him in his chair rather than putting him in a car seat. Have you see the gastro consultant? If not I think this could be helpful - constipation/trapped wind/upset tummy can cause misery. Massage, swinging and vibration can soothe. Frequent change of position (lying over a peanut ball, standing in a standing frame) might also help.

Hope some of this proves relevant, I do think it will get better as he gets older.