No Actual Condition

[flyawayfree]

My pregnancy was normal and my son had a normal delivery. He became very ill at 5 days and was in the Mater Children's Hospital on naso-gastric feeds and drips for two week.s The doctors never diagnosed what was wrong and he got better so they thought nothing more of it. He developed normally, sitting at 8 months, etc. But has never crawled. He is now 14 months and still not crawling, but getting ready to walk. Not able to transition himself, such as sit up or pull to standing, and the physio give us exercises but they don't seem to help. He has also been diagnosed wiht some type of seizures and we started medication three weeks ago, have an appointment with neuro-specialist in two week's. I have also been told his brain is 4 months smaller than it should be (had an MRI at 12 months). I am only 19 and finding it hard to cope with because my DP doesn't seem to be too concerned. I love my son to bits, and would never change anything about him. But am curious if anyone knows of suport groups or anything? I live in ocean shores, but will travel (ie tweed) if I have to.

[MamaRabbit]

Hi supa_star323, sorry to hear about the frightening time you are having. My son has some troubles, a little different to yours, but in the same type of area (ie. scans, neuro's, meds, development delay etc). Because we don't have a label or diagnosis we haven't been able to find many support groups that we really fit into. I have however made some wonderful friends via the internet all around Aust and the world who are in the same boat as me, I've found a great deal of comfort in them when I have found things a little tough. Are you in an early intervention program (physio, ot, speech) where you can talk to other parents in person? We attend one in Sydney that has a play group each week which allows the mums a chance to have a coffee and swap notes etc.

Your local childrens hospital should have a social worker that has information on all the services available in your area.

I hope this helps a little. Feel free to drop me a note anytime.

[kiwibird27]

Thats really tough, My daughter has a similar story but a very long list of medical issues, including Global developmental delay. I would agree with mamarabbit, talk to social work at childrens hospital, they will be able to let u know about support groups in your area, Do u belong to DADHC??? I know they have long waiting lists but could let u know about playgroups that would suit u. I have met lots of people on here that have offered great support, I know what your going through and just wanted to send u hugs!!!!!!!