DD very delayed at 1 year old.....

LIVLAFLUV

Hi!

I really enjoy coming to The Bump, my outlet to read inspirational stories and how wonderful you preemie moms are and so knowledgable!!  My story reads like a book, PROM at 28 weeks and delivered my DD in July 2011, she had a grade 4 and 3 IVH which resulted in a brain cyst (prob PVL). She is not really able to roll without some help and has weak trunk tone so sitting and head control is not good.  She looks more like a 6 month old than a >1 year old~and eating is such a huge challenge!!!!

Now comes the fun part, (NOT).. the therapist are requesting all the special equipment, seating system, toys, etc.  I guess my frustrations are, if all this special equipment is being requested, then Im not blind to the fact that this is beyond just being delayed in meeting milestones but an actual neurological disorder from the IVH and cyst. Just wondering, if your scenerio sounds similar, is an actual diagnosis done later in life, maybe CP or something? did your md at least hint around at a possible diagnosis? Docs just keep telling me its a waiting game, UGH!!! just looking for a light at end of tunnel!! is this really being delayed vs something neurological!!  Just needed to vent as an advocate for my DD who is the light and love of our lives and just deserves a break!!!!!  

 

Thanks 

 

Natalie_may

Oh my, how frustrating! My son Liam has spastic diplegic cp, and he was diagnosed at a year. Drs wanted to wait until that year mark and he has very classic symptoms making diagnosis clear.
I would make the therapists your allies right now, they clearly feel like more assistance and assistive technology is needed but sometimes like in our case insurance won't cover those things without a diagnosis. Your PT might have dr recommendations for you, Liam was first diagnosed by a neuro who dumped us with the diagnosis and no plan : but was later re diagnosed by a physiatrist who has helped immensely and is the dr we see primarily for cp related care. It was our PT who reccomended it.
I'll add more once I get to a computer but best of luck on this journey.

Sherry414

My daughter was diagnoised with CP recently. she is a triplet so it was easier to see there were issues when, for example, her sister was walking and she was not sitting or crawling or her other sister, who is also delayed because of other health issues, started passing her in milestones. If you don't already I would get Early On to evaluate her. Then I would see about getting her to a PMR Dr who specializes in these types of issues. I am confused by all the suggestions of this or that equipment. she is very young and IMO should be getting PT. Kids can surprise you so I think getting her all this equipment is premature on their part. We were told my daughter would need braces or a walker to walk but it was also mentioned that at this point it is way to early to know for sure.