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Im wanting to get a chatty group of moms together to talk about what sensory equipment you use and how to craft a sensory diet for your kids. How therapy is going if you're doing any, people with questions on whether or not their child may have sensory issues...

I'd start a thread on the SN forum, but it just gets lost. Since we just had her official PT and OT/ST evals and are just starting therapy, I am learning new things about her, and wanting to ask questions and read and research more. Maybe having a tribe would take up less room on the larger general SN forum.

I'll post a summary of Grace's diagnosis after the kids go to bed tonight.
 

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We're in! DS is 3 and has SID. He had OT for two months and then insurance ran out. We contested it, but no dice. He'll be evaluated in the fall by the local public schools, but we're doubtful he'll qualify because his speech, language, etc is all quite good.

DS is tactile defensive, has some vestibular issues, and lately seems to really have a lot of auditory defensiveness/seeking. He wants things loud, then loud unexpected things freak him out.
:

I'd love to know more about what folks are doing in terms of a "sensory diet." It's hard for me to think about what he "should" be doing, especially when we're at the park or something. I don't like stressing, when he's climbing a train, that really he should be jumping and getting good deep muscle input. Or something like that. I also have a hard time carving out OT time at home, because it's hard to feel like there's something else obligatory in our schedules (he's got tons of food allergies, so working around the obligatory nature of eating, which he hates to do, going to daycare, etc, feels like enough at this point).

Finally, I'd love to hear from others more about what triggers sensory imbalances in their kids. For days I've felt like he was on a pretty even keel. Today everything sent him out of whack. It came out in his sensory issues, emotionally, everything. VERY tiring.

Looking forward to hearing/learning from others. Thanks for starting this tribe!

megin
 

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Ok. Ds has Pervasive Developmental Delay and Sensory Issues.

He is a Reluctant Feeder...Hardly eats and when he does, it's precious few items. I'm trying to find ways of getting him to eat fruits, veggies and....well, NORMAL food!
 

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Oh, I just noticed that this thread is in Tribal Areas. I find that rather confusing and don't think it'll get noticed as much.

Unless, of course, people are wanting to meet other parents in real life in their own area.
 

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Hi - my 8yo dd is borderline sid. She got nixed any support from the school system, and is in a montessori school now. We don't do a ton of ot at home, either. she's very tactile, a tactile learner, has auditory issues, and also has some distractability stuff. it's been a loooong row to hoe, I'll tell ya! She made a lot of progress this year. more to say, but must try to sleep...
 

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subscribing here

My daughter hasn't been diagnosed with SDI (SPD, SID whatever acronym you choose to use
), but she definitely has some sensory issues. Her speech therapist recognized it and has given us a lot of great input on how to help her with it. I don't know if her is enough to even be diagnosed, but I'm not going to work on a diagnosis right now as I will have to pay for OT (we're homeschooling) and we're doing well with it right now with just what our ST tells us. Our ST is great and the office has a little gym in it. Now I take Charlotte a little early every week so she can swing before her appointment and it really seems to help her. Sometimes they read books and do craft projects while she is on the swing as well. I love that the ST really recognizes how things work together and gives Charlotte that stimulation.
 

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SID is all we do know right now, so I'd like to be part of this. We have 2 boys with SID. 7 yr old with Dx of ADD (that I'm not sure I agree with), tactile defensive, seeking deep pressure/proprioception, auditory processing, and visual tracking issues that we are having tested further this week. Has made great progress with attention, following directions, and school work since addressing allergies and going on an anti-candida diet. The SI stuff seems like a separate issue with him because it hasn't improved much. Though he is more able to regulate his emotions, etc. Currently doing O.T., may begin vision therapy. 5 yr old who we have not had diagnosed, looks some like Asperger's more at some times than others. Has significant tactile defensiveness, auditory defensive, vestibular seeking almost constantly, visual tracking problems, left/right hemisphere integration problems, and motor planning problems. Getting O.T. now, looking into a social skills class that we may try.
I was intrigued by Megin's comment about triggers for sensory imbalance. I hadn't thought of it that way, but that is what happens. Especially our younger son. We all know he gets out of whack, and then he has great difficulty with his behavior - aggressive, obstinate. But he has helped us figure out that no matter what causes the upset, he gets back to normal by getting much vigorous vestibular input. It might just be lack of vestibular input that gets him out of balance, like sitting still for 3 hrs. He prefers to swing over anything else in the world. We got a small trampoline and exercise ball for the boys, which have been good investments. We keep them in the kitchen so they get used a lot, usually without me ever having to suggest it. These are part of their sensory diet. We tried brushing with him for a week and it really unnerved him.
Both our boys seem to naturally seek the activities that help them feel more balanced. At the playground, one swings and slides (good vestibular), the other climbs, hangs and jumps or crashes into things (good proprioceptive). So we work in a trip to the playground as often as possible. We encourage wrestling (within limits) because it's great proprioceptive input and maybe even motor planning. We are trying to work squishing with the big ball, and joint compression into their bedtime routine. That's all we can fit into our day.
 

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DD (26 months) was jsut diagnosed with SID - the OT was mpressed with how much we "allow" and how dd and i have found plenty of outlets for her "behaviors" without knowing anything. I just let the kid be a kid. This is a whole new world to us...
 

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Hi. I'm so happy to find this thread.

Can't write much now (screaming infant), but I have 6 yo boy with sensory issues (no Dx yet) but copes very well. jUST A little weird and not great in big groups and only eats like six white foods.

More later!
 

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Sounds like a lot of us don't have 'official dxs, and also no 'official' help! UGH! We mostly do BIIIIG hugging at home, some rough play - heavy tickle time and rolling together on the sheepkins. I used to do massage on her when she was little, but haven't in a few yrs. Sometimes a scalp massage helps her to focus on homework. No major issues here, but last year she got really picky about food - hoping that is a phase lol!
 

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Hi, I just found this thread and I'm trying to figure out if my dd has sensory issues or if she's just acting age-appropriate. She does a lot of throwing, aggressive behaviour and loud, abrupt noises. I don't want to label her with a disorder, but I do want to understand her behaviour and help her if I can.
 

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Here, here! My 7 yr old is extra sensitive, and was dx when he was 3 with moderate DSI (and autism), and my 4.5 yr old has never been dx but is VERY much a sensory seeker, and I MUST do something about that... ahh!!

My 7 yr old is much, much better now. Not much time to type now, but he had OT 3 times a week for a couple years, though now, he doesn't get any services.
 

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Hey all,

I just wanted to post some info I just found out that I thought might be of interest. I am on an apraxia board that frequently discusses supplements that seem to help our kids (with the main one being omega fatty acids). The new supplement that multiple are trying is Vitamin E. I think it might be something for everyone with kids with sensory issues to check out.

The woman who first posted it has a 3 year old child (I think he's 3 anyway) with apraxia and lot of sensory issues. She is actually a pediatrician too. Long story short she saw rather dramatic results in his sensory issues among other areas within a few days of starting Vitamin E. She says that Vitamin E is important for fatty acid metabolism so maybe (as someone has mentioned around here, but I can't remember who at the moment) fatty acid metabolism issues are part of the problem here.

Anyway she says to start off with 400 IU per day of Vitamin E as a minimum dose even for young kids like 2 or 3. She says the only side effect she knows of is possible bleeding issues, but that is only at super high doses. She actually has her son on a much higher dose than that even and feels secure with it although does not recommend it to most people at this point. She has been in contact with people who she calls "some of the best Vitamin E researchers in the world" and they tell her that really there is no danger in taking it even at super duper high high doses as long as you take the natural (not synthetic form).

Multiple other people on that board have started trying this supplement in the last month and have come back to say they have seen noticeable changes in sensory issues and motor skills within just a couple of days. They tend to see less dramatic changes with speech, but some do see them.

I bought some Vitamin E today and will start Charlotte on it tonight. There does no brand that is more recommended than others. Here's the important thing to look for: make sure you find "d Alpha Tocopheryl" and not "dl Alpha Tocopheryl." The "d" is the natural form and "dl" is the synthetic form. You can find mixes of it with "alpha" and "gamma" forms which is fine and possibly even better to get both forms, but alpha is the main form.

Anyway take it for what you will, but the results these parents were seeing was enough to make me try it and since this mom is also a pediatrician who has looked into the safety of children taking this dosage (including her own child) I feel safe in trying it. You may want to consult a physician before trying it with your own child though.
 
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