17 mo with SID and Hypotonia

iVillage Member
Registered: 08-13-2003
17 mo with SID and Hypotonia
5
Wed, 08-13-2003 - 10:57pm
I've been searching for support from other parents in my same situation. My daughter Harper was diagnosed with SID and Hypotonia at 12 mo. She goes to PT, OT, and ST 3x a week. Two weeks ago she got into four point by herself, but still no crawling. We're both frustrated. I know she wants to be mobile, but it just hasn't happened yet. It's getting harder and harder as the months roll on. Anyone one else in the same boat. Any success stories to lift my spirits. I love my daughter dearly and feel guilty for being frustrated. It's just hard sometimes. It seems I'm explaining SID on a daily basis and people always look at me like I'm out of my mind. Any suggestions???

Wendy

Harper 3/15/02

iVillage Member
Registered: 03-27-2003
Sat, 08-23-2003 - 6:52am
Hi Wendy,

Welcome to the Sensory Integration Board!

I am a mom of a 4.5 year old son with hypotonia and DSI...we go to OT, PT, and speech for a total of nine sessions a week...and we go to hippotherapy...

We have been going to therapies for over 2 years now and we have seen progress with the hypotonia, he does not get as tired anymore, even will walk around wal-mart for a little while!!!

They tell me to just be patient as things will get better slowly, but it is hard to watch them struggle with everyday tasks...

And frustration and guilt are parts of our lives I think, I know I always wonder if I may have done something that caused all my sons problems...Although I know I could not have done anything differently...


Lynn

Homeschooling, its any where you want to be!
iVillage Member
Registered: 04-13-2003
Sat, 08-23-2003 - 8:55pm
Hi Wendy,

My daughter Csilla was born the same day your baby was and has hypotonia and SID also. She just started crawling a month ago, we thought the same, that it will never happen but it did. Just hang in there. What I concerned about with Csilla is her mental development. She does not really understand much what we say, does not play at all on her own and makes faces like she is "somewhere else". How is Harper in that area? She was born by cesarian and was in the special care nursery for a week, they had a hard time stabalizing her blood sugar (which can cause brain damage). She did not want to wake up for about 3 weeks after she was born, I had to wake her up each time it was time to eat and try to keep her awake. Something happened to her at birth because she was soooo active, till the second she was born. I thing it might be the spinal they gave me because I did not feel ANYTHING for 11 hours from my chest down. If it effected me like that, I would think it also did her.

Enough about me, you are doing all the right therapies, it just might take a little longer, hang in there! Let us know a little more about Harper. Is he seeing a neuro?

There is also a great hypotonia board you might want to visit, they are great too!!

Good luck, Eva, mommy to Csilla 3/15/02 and Keefe 10/25/99

iVillage Member
Registered: 04-05-2003
Sun, 08-24-2003 - 9:16am
Hi Wendy'

Welcome to the board. I lurk here and would love to see more activity so I was so happy to see your post.

I am Mom to Alex, 21 months with hypotonia and SI. He combat crawled at 10 months and got to all fours at one year. He walked (thanks to PT) at 161/2 months. He is a very happy little boy. But the SI stuff makes me crazy! I'd like to here more details about your daughters behavior. Alex did lots of stuff that kept me awake many nights thinking he had autism. I can see clearly now that he does not, but have found that the sensory stuff is keeping him from learning. He did cycle through the behaviors and I think they are improving. Alex still follows lines and will stomp his feet like a march or slap his hand when crawling. His attention span is what we worry about now. And he is speech delayed.

I have given him Pro-efa and I am blown away at the results. I know what you are going through and thank goodness for these boards as I would be a nutcake without them. Hang in there and do what you are doing....its gets better....but slowly unfortunately!

Love to hear more from you. Like someone else said, the hypotonia board is very active, but I would love to discuss more about the SI issues of hypo kids. Take care

Kate and ALex

iVillage Member
Registered: 08-13-2003
Mon, 08-25-2003 - 5:36pm
I was so happy to hear from all of you. Are any of you from Michigan? It's so nice to share with others in the same boat. Harper was a baby who hated being on her stomache. She didn't roll over until 11 months. For a while her ped just thought she was being stubborn. Then everything else was late too. Sitting at 9 mo. Still no crawling or walking. She's getting very close,but her hip muscles are still a bit week. Her therapist and I call her our little frog because of the way she holds her legs. She's gotten much better with the sensory stuff. She doesn't zone out much anymore. When the world was too much she used to stare at her hands. She also makes wonderful eye contact. We're still working on getting her to eat table food. The only thing she'll eat is cinnamon graham cracker sticks and baby nutrigrain bars, and I have to feed it to her. Her hand to mouth coordination isn't too hot.Her main sensory stuff is around her shoulders and arms. But, still getting better. I hope the brushing program is helping. Fortunately, she is a very happy girl. Everyone falls in love with her. She does cry loudly at therapy when they make her work hard. She has my personality of not wanting to do something unless she can do it perfectly. She'll try more things if I'm not in the room. I'm currently trying to find a day care for her to attend 2 days a week to be around other kids. I think she needs some peer pressure to get moving. She also loves kids and I just got called back to my job as a teacher so I won't be staying home this year. My parents watch her right now and take her to therapy. That was the situation last year as well. I just hope she continues to improve and can lead a productive life. My goal for her, since she has had early intervention, is to not need special ed in school. But, I will make sure she gets help if she needs it. I love her to death. I missed her terribly today it was my first day back to school.

Take care everyone

Wendy

Harper Lily 3/15/02

iVillage Member
Registered: 04-13-2003
Tue, 08-26-2003 - 11:39am
Hi Wendy,

You wrote about putting Harper in daycare. I beleive it has helped Csilla a lot being around other children, interacting with them, she seemed "more alive". Also, the daycare she goes to is wonderful about being interested in her care. They actually asked if her therapist would come in and show them what they would be able to do, explain more about her needs. You should ask them if they would be open to that, it would help them too, they would understand what they can or can't do.

Good Luck, Eva