Developmental Delay

Ameer - posted on 06/09/2015 ( 2 moms have responded )

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Hi , My daughter is 9 months now and we have been told that she has developmental delay and she is more like a 4/5 months old baby. she is still been investigated and we recently had Mri done and basic genetic test and few other blood test. All results came normal and we had a appointment in GOSH with a neurologist who has told us that they will need to to do another MRI with general anaesthetic. and they will be sending us to a Genetic doctor so they can do more test and try to find out why is she having a developmental delay. She did not use to smile until this last few days. even now we have to work hard with her so she can give 1 smile. She can roll over on 1 side and not the other. She cannot sit and does not have any head control. Very worried and waiting time for the test is 3-6 months more . We as parents are very worried and do now know if she would be able to catch up as a normal child or will the delay will be there for long term. We are seeing general paediatric & paediatric neurologist but no one seems to know what is reason. We are confused and with every appointment get more and more confused. Any advise or any info will be greatly appreciated.

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Ameer - posted on 06/10/2015

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Thanks Diana for your reply, yes of course she is our princess and we hare continuously trying our best for her, buying different toys and things that can help or encourage her to sit or to develop some sort of stomach muscle and chest muscles. We have attended every PT appointment and had to get PALS involved in the start as the so called early intervention was not happening. now just waiting for the GOSH appointment for her MRI & Other test & Genetic doctor to see her. The time appointments takes is very long 3-6 Months. The waiting time is the killing part. We had a very helpful Health Visitor. She had almost been with Daania's First check up at 6 weeks. Daania is Little Fighter :)

Diana - posted on 06/09/2015

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oh my heart hurts for you. best I can say is treat her like she is a perfectly typical princess. early interventions can do amazing things with the progress of DD students, but eh most impactful is the parents that treat them like that are exceptional just the way they are, they let them struggle, they don't do everything for them. they move preferred items just far enough away that they really have to make an effort to get that. Keep her working and stretching to get what she wants. you are her first teacher and can open the world to her.
and fight for services, anything it sounds like OT, PT, SPL, and make sure she gets every tool possible early on, you are her hero, her advocate, her mom. You got this. I see kids exit out of sped as a result of early interaction and parents that didn't let their child feel like they where anything but amazing.

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