Allie's OT sent one home with us on Friday. I'm not sure it does anything for her. I googled it and found that it is mostly used for kids with cerebral palsy who need help with trunk strength - for kids who aren't able to sit up, etc. Allie is doing great with strength, and we know that she does not have CP.

Anyway, I put it on her on Sat and she threw a fit, so I took it off. I tried later in the day and she did okay for about 10 mins, and I think the pressure on her belly made her reflux, so I took it off. Yesterday, she wore it for about 25 minutes.

When she's wearing the vest, she tips to the right and seems a lot more unstable and wobbly than she normally is. She was falling over when she was sitting up (which she never does anymore). This concerned me.

Does anyone have experience with this? I am going to bring up this to Allie's OT. She seems to think that Allie has Sensory Integration issues, but I am wondering if Allie really does. Noises do not bother her and the only time that textures bother her is if it is food in her mouth. She will touch and play with anything, it's eating that is her issue. She does not stay and play with a toy for very long, but I was told that this is "normal" by the neurologist.

Any input would be appreciated. Maybe I'll post this to our OT if I don't get any responses.

Thanks,
C

James' OT just started using this with him. He has actually only worn it once and did great with it. She was going to put it on him last Thursday, but since he wasn't feeling good and having one of his "off" days, she decided to wait. He was already too upset and she didn't want to make him madder. The time he wore it, he wore it for about 40 minutes and it really worked well for him. James likes and needs pressure. He looked so darn cute in it... it was green like kermit the frog. I wish I had had my camera.

Anyway, as for the sensory issues it is so difficult. I now have two kids with sensory issues and must admit with my oldest daughter I didn't have a clue what it meant or how to handle it. Jessie's issues were more tactile (touching things). She was always very scattered (as our OT calls it) in her play... just bounced from toy to toy never really playing with anything for more than a couple of minutes. James has days like that, but not as much as Jessie did. Jessie was pretty much constant with the playing issue. If James is having a good day, then he will sit and play with a toy for 30 minutes. On bad days, he just makes a huge mess in the house... making scattered messes in every room. James' sensory issues are greatly affecting his eating. When is having a good day, he will eat somewhat decent for him. On those bad days, forget it... he won't eat hardly anything.

Can you talk at length with your OT about your concerns with the vest? I know we use the vest for pressure as that is what James needs. We also use pillows and massage at home for his pressure issues. Our OT has been great. We talk at length about what she is doing with James and what she hopes to accomplish with the therapy. I know I would be concerned if James became unstable/wobbly in the vest. When James put the vest it calmed him down and he was able to focus on some table activities, and that was the OT's goal.

I would definitely talk more to your OT. Does the OT do sensory activites/exercise with Allie? James does a lot of shaving cream play, pinto bean play, and lots of crawling, climbing, and swinging during therapy. Our OT loves to work with sensory kids, so we really lucked out and got a great therapist. I would be curious to see what is your OT's experience in working with sensory kids and is she just basing this sensory dx on the feeding issues or are there other things she is seeing with Allie. Let me know what comes of your talk with the OT.

I don't know much about the vest, I have seen it used on kids in OT while Connor was doing his Physical therapy. Ally sounds a lot like Connor, he will touch other things but doesn't like food and gags with solids. He doesn't like to touch grass, but I know "normal" kids who were the same way. Connor doesn't play with a toy long either but I would think that's just normal toddler behavior. Hows Allie doing in Ot? We are thinking of trying to go that route with Connor to help with his eating since speech isn't covered by our ins.

As far as I know the vests are to help them focus inwardly and to attend less to the external stimuli that can be overwhelming. To me it seems like Alli’s issues are only with eating so I don’t think the vest would help with that. I to would be worried that the pressure could make her reflux more.

Jessie's issues were more tactile (touching things). She was always very scattered (as our OT calls it) in her play... just bounced from toy to toy never really playing with anything for more than a couple of minutes.

Allie does this exact thing - she does not play with a toy for more than a couple of minutes, her attention span is really short, but her OT has never mentioned this. Her OT simply things she has sensory issues because of the fact that Allie does not like food in her mouth and gags on it often.

Is Jessie's lack of attention to toys the only thing that led to a diagnosis of sensory integration issues, or is there more? I know that Jessie has autism spectrum disorder. The neuro that we saw said that autistic kids usually sit and play with a toy for a long period of time, but that doesn't ring true with your little one, does it? These kids are just so hard to figure out! :banghead:

Connor's mommy -

It's so hard to figure out if Allie is doing well in OT or if she's just outgrowing reflux and getting better. Her bottle aversion is so much better, but it is hard to get her to eat without letting her watch a video. Her spoon aversion is still going strong, and her gagging is better, but she still does it from time to time. We are paying $100 per week for Allie's therapy b/c it's not covered on our insurance so we're really trying to figure out if it's worth it or not. I would go bankrupt trying to get this kid to eat, I just don't know if it's helping or not. If your insurance covers it, I say go for it, it can't hurt to give it a try.

Thanks for the input guys,

Cchristyn

With Jessie, the sensory integration dx was a combination of things... the scattered play, not wanting to touch certain things, coming unglued in certain situations, socialization problems, and becoming easily overstimulated... most of which tied in with the autism. Our neurologist never even looked at autism. He did an EEG and it came back normal so he wouldn't see us again. Jessie also had loss of speech so that was one more thing that pointed towards autism... again the neurologist wouldn't even look at that. I was very disappointed in the neuro. Jessie's OT is the one who first mentioned it (and that his how she treated Jessie) and then school district confirmed it with their testing at age 3. The school has been great in treating the autism and sensory issues. I found out this morning that they now have a motor lab with a ball pit, big balls for bouncing on, things to roll on, etc. They also have a thing called function junction which is where the kids do a lot of climbing, crawling, running... anything to get them moving. For Jessie and James movement is actually calming for them... most people think I am nuts when I try to explain it to them. If James is having a bad day, we go jump on the trampoline, swing, or play in the ball pit and it is amazing how it calms him down and is able to focus more on his play and hopefully eventually eating.

When does Allie go back to OT? And I was curious why (if you don't mind me asking) insurance doesn't cover her therapy? I just find that horrible that insurance won't cover therapy. I keep hearing more and more people say it isn't covered.

Thanks for responding.

I think we talked about Allie's neuro appointment in other ports - he was not helpful at all. Allie has also had a loss of some words (she used to say mama, dada, ball, up and baba) and it all went to just baba. Mama came back over the weekend, so I'm hoping the other words come back too. The neuro said that it is very common for kids to lose words when they work on other skills (and Allie is almost walking now, so I hope that's the case). Allie's OT said this too, and I read that in what to expect the toddler years. I don't think that Allie has autism, but I'm not a professional. She loves to be held and snuggled, she makes great eye contact with us and she is learning new things. I do think she's behind a bit with a few things, but she is making progress. She recently learned how to turn the lights on and off and when I tell her to do it, she follows my instructions, so I'm pretty sure she understands what I say. She also sits down in the bathtub when I tell her to, showing me that she understands. She follows the word no very well. However, she does not bang two objects together, which the CDC's website says is a "warning sign" for autism if they are not doing it by age 1. We are trying to get her to do it, but she won't even hold a toy in each hand. When we give her a toy, she drops the one she has and just holds on to one at a time.

We are actually taking Allie to therapy tonight at 6:00. She has been going once a week and we have to pay her babysitter mileage to drive her there, so it's $137.00 per week (that does not include how much we pay our babysitter - which is also a ton of money). As far as insurance, ask away. The therapist we see is considered "out of network" for our insurance, and we have a $3,000.00 deductible for that (needless to say, our insurance only applies $40.00 of the $100.00 we pay for each visit toward our out of network deductible, so we'll never meet it). We tried finding an in-network therapist, but none are closer than 60 miles away and it's not feasible to do that, for Allie or our sakes. We have seen other therapists in our area that were covered, and they had nothing to offer us. So, we bit the bullet and are seeing if this woman can help us (she's now the third one we've seen). We've been seeing her since June and we're making a small amount of progress, but I'm not sure if it's due to therapy or other factors. It's so hard to tell.

Thanks for being here and helping me to figure out my little kiddo. I guess it will all happen in due time. If you have any input re autism, I am happy to listen. Maybe I'm in denial, but she really is interactive.

Christyn

Christyn - I'm going a little off topic - but why are you paying for this through your insurance and not through early intervention? Did she not have enough of a delay to qualify? I know that we went through a lot of this with Brayden including the loss of speech. The pediatrician refused to refer us to any type of therapy because he was so "social" and felt he was fine. Finally I called early intervention after I watched him go downhill for several months. When he was evaluated he showed enough of a delay to qualify for all free services. We were able to choose the therapist we wanted to work with (against their advice) and they pay for it all. I feel very strongly that he would not have qualified for as many services when he was Alie's age since he wasn't that bad. But I also feel that he would not have gotten as bad if he had some intervention when he was her age as well!

Also - you can appeal to the insurance for them to cover your therapist as "in-network." It takes a long process...but if you can show them why their in-network providers are both too far and/or not qualified to care for Allie's needs, they can decide to cover the person as in network... Of course they wont make it easy for you to do this, but I've seen it work.