Who gave you your child's diagnosis?

iVillage Member
Registered: 04-04-2003
Who gave you your child's diagnosis?
3
Thu, 08-28-2003 - 10:12am
I was just curious as to who most of you got your child's diagnosis from. My situation is that my DD has had reflux since birth; in addition, almost from the very beginning, she was very, very fussy, a poor sleeper, poor eater, sensitive to noise, touch, didn't like to be held by strangers (even as an infant), etc., etc. I kept "hounding" my pediatrician for more answers as I thought there was something going on in addition to her reflux. Her pedi just always kind of blowed me off and acted like everything I was experiencing was normal. Even as a first-time mom I was convinced it was not. I did tons and tons of research on the Internet when I came across sensory integration disorder. I immediately contacted early intervention and DD (now 23 mos.) has been receiving OT and SLP for the last 10 mos. DD's therapists went to her well-baby check several months ago and explained to the pedi what they had observed going on with DD. I think that really irritated the doctor because I had been saying all along that there was something else "wrong" in addition to DD's reflux.

Anyway, I said all that to ask this -- have most of you taken your sensory kiddo to a neurologist? I'm just wondering if that might be helpful and if it's something I shoud ask my pedi about. My insurance requires a referral so I would have to "convince" her pedi to refer us to a neurologist if need be. I'm also concerned because DD stopped breathing when she was 6 days old (due to reflux) and wasn't breathing for several mintues at least 2-3 times while we waited for the ambulance to arrive -- it took them 25 minutes to get there as the small town I was in didn't have their own ambulance service. I'm getting more and more concerned that there might have been some neurological damage done at that point -- although the doctors assured me that she was too little for any damage to be done.

Thanks for any help you could provide. It's been one of these weeks were I feel like I'm at my wit's end with DD. If I could just get her sleeping through the night and eating some sort of solid foods. :(


Melanie

iVillage Member
Registered: 08-09-2003
Thu, 08-28-2003 - 12:04pm
Hello Melanie.

My DD was diagnosed with Developmental Delays by an OT through our local EIP. At her recommendation, I took my DD to a private OT for a second opinion and to inquire about services. She was evaluated at a 20 month age lvl at 3.3 yrs old for her fine gross motor skills. On a hunch, OT gave me a sensory integration questionnaire. The results showed positive signs that my DD had sensory issues and was then diagnosed with DSI. Luckily, the private OT I had taken her to was certified and experienced with working with DSI patients. After helping DD get over some of her tactile defensiveness, she now works at a 46-48 month age lvl after 4 months of therapy at the age of 3.7 yrs old.

I would suggest getting the book "The Out-of-Sync Child" by Carol Stock Kranowitz. It's a wonderful book that explains the ins and outs of DSI in lay-man's terms where anyone will be able to understand it. And finding an OT that is familiar/certified/experienced with sensory issues. Not everyone has the same outcomes, but I believe it really makes a world of difference. My DD will probably always have sensory issues but it makes her feel really great that she now knows how to cope with anything IF they do arise. And that's probably the most important thing I learned from all this, how to cope.

Hope this helps you get started.


Charlotte & Taylor-3.7 yrs old with Mixed Receptive/Expressive Language Disorder with just a lil bit of Sensory Issues to work on :)

iVillage Member
Registered: 08-13-2003
Fri, 08-29-2003 - 10:40am
Hang in there, I know it can be frustrating. My daughter Harper is 17 mo with SID and Hypotonia. Her ped sent her to a neurologist at 12 mo. She received an MRI and tons of bloodwork. Everything came back negative, thank god. She goes to pt,ot, and speech 3x a week. She's making a ton of progress, but like you, sometimes I just get frustrated. She's not mobile yet and still on baby food, except for graham crackers. That was our milestone last week, after being fed her cinnamon sticks for months she finally decided last week to start feeding herself. Hopefully this continues. Is your DD walking, talking, etc.? I wish you the best of luck. I do recommend getting her to a neuro, if there is something the earlier you find out the better. And, if not you will feel a huge weight lifted off your shoulder. We are taking Harper back in November for a reevaluation. I'm sure they will just tell us to continue therapy. Thank goodness for our therapists. They've been my godsend and it seems like they've been yours too. Good luck with everything.

Wendy

Harper Lily 3/15/02

iVillage Member
Registered: 03-27-2003
Fri, 08-29-2003 - 8:48pm
Hi, my son is 2 1/2 yr and at seven months he was not even holding his head up. Our Ped. sent him for PT who then sent him for OT along with the PT. After about 4 months of therapy the PT said that we really should see a neuro. so our pediatrician made the appointment for us. The nuerologist diagnosed him with cerebral palsy and said to continue the therapy. He wears braces on his legs and started walking at 17 months. Today you wouldn't know unless you really watched him that he had cp. He does have some sensory problems that he goes to OT for. He still eats baby food, he screams if someone he does not know tries to talk to him and is showing some mild autistic symptoms. He will be going back to the nuerologist next month to talk about the sensory problems. All I can tell you is stay on top of things! We were blessed with such a good PT that contacted out ped. to tell him that my son needed to be seen by a nuerologist. Don't be shy when it comes to asking your doctor for refferals and such! Good luck!

P.S. Get the book The Out of Sync Child and The Out of Sync Child Has Fun. Both of these books are great!! they gave me so many good ideas.