How to help my delayed 3yr old who is undiagnosed and gross motor skills are regressing.

Katrina - posted on 05/31/2012

you really need to get her tested because it could get worse and worse over time and where is going to stop. If one doctor doesnt give you the answer move on. I know i was watching this show on tv where the same thing was happening but it was so long time ago but i do remember she kept taking her son to places till one doctor would finally do a whole range of test and she got answers

Emily - posted on 05/24/2012

Where do you live? Different states offer plenty of services, if you can get your doctor to refer or write a prescription for anything you feel may be helpful in keeping your daughter safe. My son was refered to the central california regional center, which has been a tremendous help in getting in home care, and services for my son. SSI can also get you in home care, you just need a doctor to fill out the forms from Social security.

Michelle - posted on 05/22/2012

I am in the same boat with my son Joseph. I have not been able to get a diagnosis yet for him. He is developmentally delayed with moderate hypotonia. He has been able to make progress in all skills though albeit slow. There has been no regression. The regression would be what worried me the most.

If you have not all ready it is time to take her to the specialists. A neurologist is a good start. Especially if you can find a helpful one. I have not yet but I live in a HORRIBLE city to find specialists. She needs a MRI if you have no done one. Also I would push for a micro-array DNA test. This will help to find most genetic abnormalities. Keep working and pushing for a diagnosis. I know I am and I have not given up yet. :D

Joanne - posted on 05/19/2012

She needs to be seen by a neurologist, my guess would be a metabolic neurologist. Skills should not regress. Has she had a complete metabolic work-up including spinal taps, muscle biopsies and skin biopsies? I know that know that these are not fun things to do and they take awhile to get answers but you need to be aggressive at this point with her losing skills. If your not getting answers from one doc get a second opinion. We don't have a diagnosis for our son either, and he was going backward for along time. We went through the Mayo Clinic and they were great. Even though we still don't have answers.
I'm part of another group called SWAN USA, syndromes without a name. There are lots of us out there looking to help our children. They are very helpful and supportive.
Don't take no for an answer. Keep fighting for your daughter. I know it is awful and it is hard, and you just want someone to tell you want is wrong and how to fix it.

Rebecca - posted on 05/18/2012

I am trying to clarify, your daughter doesn't have a diagnosis? If that is a problem for you, I can relate. It took YEARS for my son to have a diagnosis of his issues. Mostly because insurance didn't want to pay for testing without a diagnosis or a doctor's guess at a future diagnosis. Eventually I had to find a pediatrician who specialized in cognitive and behavioral issues who would go out on a limb and say that my son might have Autism and needs testing. Then the specialists had to speak directly with insurance and explain why testing is medically necessary for treatment.

My best advice would be for you to seek a specialist in gross motor who can help you find testing, etc. whatever you need to get that diagnosis. Without a diagnosis you are flying blind. No one will be able to assist you because they don't know what they are treating. It may take a LOT of work on your part to get that diagnosis but I can tell you that once you have it, it can be like gold. It will open up therapies and opportunities for assistance for you and your daughter.

Finally, I would say, don't give up. You are your daughter's best advocate. If your doctor won't give a diagnosis find a different doctor. Just keep going. One thing you have in your favor is that your daughter isn't of school age yet. Most states have some sort of Early Intervention program to help kids with any and all developmental delays, etc. that occur before they turn 5 and enter the school system. Again, a physician should refer you to such programs. I hope this helps a bit. I know it is frustrating! Keep your chin up :)