What can I do to help ds?

[Louisajane27]

A little bit of background ds2 is 6months old and has severe brain damage on the left hand side of brain and the front of his brain is unusually developed. He also has problems with his heart and needs 24hour oxygen and tube feeding.

Ds2 is yet to reach any milestones he dosen't smile, can't hold his head, can't roll over and so on. I have tried lots of different things with him such as massage, sensory play, treasure baskets, lots of cuddles and songs/stories but I'm worried I'm not doing the right things or enough things. Can anyone help with ideas or share experiences.

Hi, I'm sorry to hear about your DS. Do you know what caused his brain damage?

Is there anyone helping you or referred you anywhere so that you can get help for your DS?

What has your health visitor got to say in which ways you can help your DS????? Also visit your local children's centre to get help and join in the play groups for kids who are your DS's age. There's baby movement classes- this may help strengthen your DS muscles etc.

Good luck.

Keep doing what your doing, usually for some kids it takes a long while to see the results. But keep doing all the activities that you put on your post.

One of my friends got referred though her hv to take her dd to swimming physio therapy. To help with core muscles etc.

Might be worth looking into?

Hi thank you both for your advice. He is under lots of different clinics neurology, cardiology, respitory, peadatrition, genetics and so on. We don't have a diagnosis but a best guess that he most likely suffered from a stroke or infection between 20-28 weeks gestation. Our peadatrition has referred him for physio but I've not heard anything yet, I will chase it up when I see peadatrition again at the end of the month.

Our hv dosen't really say much about activities or his development she just checks his weight. We do have a lady from the children centre who visits us and she does some nice activities with him. I have asked about sensory group or if there is a group where sn mums meet but there dosen't seem to be much in our area.

Thank you both again for all your advice, some days I just feel useless like I'm not doing enough.

You could try going on your councils website under the new local offer there should be a list of groups, and other bits.
Good luck

My DS is also 6 months. We get:

• Lead professional who coordinates all his care and Team Around the Child meetings
• paediatrician every 4 to 6 weeks
• weekly hydrotherapy at local special school in a group
• weekly play therapy in the sensory room at hospital - this is individual - we are also able to use the sensory room to repeat activities we have been shown any time it is free
• fortnightly OT and physio (they give is activities to do and lend us equipment for it)
• we have just has initial assessment for portage - a home visiting service for children with Additional needs. This will start January on a weekly basis and they will give us activities to help meet targets and lend us toys.

All this is free and we have been referred through professionals at the hospital. I also go to a couple of special needs parent and toddler groups and they have signposted me to a few things. Like for instance you are entitled to borrow sensory toys for free from Cerebra and Newlife charity. Newlife is great. They courier tho a massive crate of sensory equipment and then arrange for it to be collected all free of charge.

Don't wait to see paediatrician for physio. Ring the physio department directly and ask where you are on the waiting list.

Good luck x