17-month-old with SID diagnosis

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Registered: 04-07-2003
17-month-old with SID diagnosis
10
Thu, 11-11-2004 - 2:01am
Guess I will be reading and posting to this board a lot now - my 17-month-old son, Kyle, was diagnosed with SID today by an OT that specializes in sensory problems. I had posted a while back about whether my son might have SI problems.

The OT said he seems to be hypersensitive for tactile (especially oral) sense and hyposensitive for vestibular sense. Is that common to have two totally different problems? Tactile issues include not wanting to hold hands ever (but OK with having the back of his hands touched), hating having his fingernails and toenails trimmed, hating having his hair cut (but he's OK with having it brushed or washed), at times walking on tiptoes (but not that often), feeling uneasy about sitting in grass with bare feet, and major feeding issues (just recently started eating mushy solids, but won't eat anything crunchy). Vestibular issues include loving rough play and having poor balance (but he didn't start walking until 6 weeks ago).

The OT thought my son was at a 14-month-old level for gross motor and fine motor skills. It was weird - he could do some things that an older child (19 months old) would be expected to do, but couldn't do other things that a much younger child (10 months old) would be expected to do. She said my son seemed to have very low muscle tone around his mouth, which I would think explains his major feeding problems from DAY ONE and his communication delays.

My son still needs to be evaluated by an ST because he's REALLY behind in communication. He does no gestures at all and says only one word consistently - "ball" for anything round. He isn't even consistent with mama or dada, although I THINK he assigns those names to us. What would cause a delay in gestures, as well as not being able to do shape sorters?

What could be going on if, at times, Kyle doesn't make good eye contact or pay attention? It doesn't happen all the time - only sometimes. I always thought he just didn't want to pay attention at the time. (He does have a congenital eye problem he inherited from his father - nystagmus, or "wobbly eyes" - but otherwise good vision.) Other than this, Kyle is very social. He wants to be picked up often throughout the day and interacts with us a lot, wanting to be on the sofa with us.

Both evaluations are to see if my son will qualify for the state's First Steps program for babies birth to 3 years old who have developmental delays. I really hope he qualifies, as he really needs help, especially with oral defensiveness. But if he doesn't qualify now, it will be only a matter of time before he will because I think his delays will only get worse as time goes on.

I cannot tell you how much of a pain it has been to feed my son, and it STILL is a major struggle. I swear he would rather not eat at all some days. I don't know if he processes hunger messages his body sends - can that be an SI problem? I await the day he tells me he's hungry - I will fall out of my chair in disbelief and leap for joy!

Michelle and Kyle (5-28-03)

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Registered: 03-27-2004
Thu, 11-11-2004 - 9:34am
Hi Michelle:

I think I posted in response to your last message. From your description, I think my 18 month old son Adam sounds very similar to your son Kyle. He also is hypersensitive with tactile issues and hyposensitive for vestibular issues. I think it is not uncommon with SID for there to be a child with both hypersensitive and hyposensitive issues for whatever reason.

Hopefully, Kyle will qualify for EI. However, it does sound like he will eventually qualify. I have found it to be so helpful for Adam. We are currently getting p.t. twice a week, o.t. once a week (really need it twice a week), feeding/speech therapy twice a week and will be starting a teacher once a week maybe next week. Adam also has major eating issues and will not really eat anything crunchy. He will not or can not bite down on anything. The speech therapist thinks this is a sensory issue. He has recently been much better about eating other things though and as long as I cut it up into small pieces will eat french toast, waffles, scrambled eggs, or pancakes, cottage cheese or yogurt and diced fruit for breakfast, usually some type of pasta for lunch, and meat loaf, fish or some type of breaded chicken for dinner with mixed vegetables. Up until recently, he was really only eating stage 2 baby food and the baby cereal though so I can relate to what you mean about feeding being so tortorous.

Adam also does not have the greatest eye contact and does not pay attention often, although he is pretty social with people. He is not that great with gestures and will wave bye once in a while. He is extremely into clapping, almost overly so. He can sometimes do some of the shapes in a shape sorter depending on his mood. He started walking when he was fifteen months old and still doesn't have the greatest balance. He is not too into climbing yet, just starting.

He also has speech delays. He says maybe five words if I'm lucky, mommom, daddy, nannan (for my mom), dat for cat and baba for bottle. Although he does say ba for sheep and moo for cow also so maybe they count as two more words. He also says yea for when he's excited and clapping. He also does some arm flapping which gets me concerned. Does your son do this also? He occasionally does some toe walking too, but not that often anymore. I also feel like he hardly ever follows simple directions and occasionally does some head banging when he is frustrated. I took him to the neurologist who recommended that we have a psychologist evaluate him to see if he possibly is on the PDD spectrum. He thought if anything he may have PDD-NOS or mild autism, but he said that it will be a very close call to make. It is also possible that his various symptoms are just due to straight sensory issues, but it is hard to tell at this point. His eval is going to be next Thursday which I'm very stressed about.

Anyway, welcome back to the board. I've only recently started posting here as well, but it seems like a good place to get information and reassurance that we are not alone.

-Debbie

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Registered: 11-01-2004
Thu, 11-11-2004 - 1:15pm

Welcome Back Michelle, I remember you posting not that long ago about you son Kyle.

               

 

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Registered: 04-07-2003
Thu, 11-11-2004 - 5:16pm
Debbie,

Thank you so much for your kind post. It does sound like our sons are a lot alike regarding SI problems. I'm glad to hear your son is now eating some solid foods. My son also is eating some solid foods (only mushy ones), but doesn't really chew them. The OT said Kyle has very low muscle tone in the face - that is probably part of the problem. And, he is not doing any self feeding at all, except for water from a sippy cup. Is your son feeding himself solids?

It sounds like your son is more ahead of my son in communication, so I think Kyle should easily qualify for First Steps. No gestures at all here - sigh. Kyle is climbing furniture - he gets up on the sofa when we are on it.

Regarding arm flapping, he doesn't do that, but he does bat at his ears (especially his right one) when really stressed - usually during a feeding. But outside of that (and he doesn't do it very long or even every day), he doesn't have any repeating behaviors.

Good luck with the eval regarding PDD. I hope I don't have to cross that bridge, but who knows, I might have to sometime in the future. Right now, I just have to get my DH to accept that our son probably has SID - I don't think he wants to accept that anything major is wrong with him.

The good news is that Kyle has gotten over some sensory stuff on his own - he used to HATE having his face wiped after feedings, but now he easily tolerates it. And he is advancing on all fronts, albeit slower than normal.

Thanks so much for your support. It's good to know I'm not alone.

Michelle and Kyle (5-28-03)

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Registered: 04-07-2003
Thu, 11-11-2004 - 5:19pm
Thanks, Rachel, for your kind post. I do have the two books you mentioned, and am reading the first one (The Out-of-Sync Child) right now. It's helpful, although much of the info seems more directed at older children.

Thanks again for your support!

Michelle and Kyle (5-28-03)

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Registered: 03-27-2004
Thu, 11-11-2004 - 10:38pm
Hi again Michelle:

I wanted to answer your question to me in your last post. Adam is actually feeding himself solids with his hands which I am very excited about. He has maybe only been doing this for the last two months or so. It seemed to start about a month after he began to walk. He also drinks out of a straw cup. We never used a sippy cup for him because the feeding therapist believes that it is not good for when children have low muscle tone around their mouth. It supposedly worsens the tone and when you drink out of straw it works to strengthen the muscles. I have had Adam drinking this yogurt drink out of his straw cup every day for the last month and the feeding therapist says that his muscle tone has dramatically improved around his mouth. She thinks it is largely a result of the drinking thick liquids from a straw.

That is great that some of your son's issues have improved on their own. It is also really good that he is climbing. Adam actually climbed onto the sofa today for the first time when I was on it. I started brushing him two days ago every hour and a half to two hours at the suggestion of our O.T. and I think it has made a real difference with respect to him knowing where his body is in space.

I can relate to your issue with your husband's acceptance of your son's problems. For a long time, my husband refused to admit that there was anything wrong with Adam- just that he was moving along at his own pace. It took him going to several birthday parties with us and seeing how the other kids were to admit that there are some issues. I think he finally is on the same page now. Although sometimes he slips after talking to his father who is in big time denial mode and starts acting like he would ultimately have been fine without all of the therapy also.

I was just curious...what state do you live in as far as EI is concerned? I know that some states are more difficult to qualify for than others.

-Debbie

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Registered: 04-07-2003
Fri, 11-12-2004 - 1:09am
Hi, Debbie. Thanks for your follow-up post. It's good to hear about using straw cup - I have one and maybe I will try that.

I'm sure we will do a brushing program after getting set up with an OT. I did massage my son tonight with lotion after his bath - he is very sensitive on the palms of his hands and the bottom of his feet, but did OK for the rest of the massage.

I live in Missouri (St. Louis area). Our EI program is called First Steps. Kyle needs a 50% delay (as in 50% of his age) in at least one area to qualify, or be near 50% in one area and have significant delays in other areas. The OT who evaluated Kyle said he had delays in every area to some degree, with communication seeming the worse by far. The First Steps person seemed pretty sure Kyle would qualify for the program; I am really going to push for it, telling them why go through the expense and time of evaluating Kyle again in a month or so when his delays will be even greater.

Thanks so much for your support - it means a lot.

Michelle and Kyle (5-28-03)

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Registered: 04-01-2003
Fri, 11-12-2004 - 3:45am
Hi Michelle,

I am fairly new here also. My dd, Makenna, is 19 months. I really do love the Out of Sync Child but I also really get what you are saying about it being geared toward older children. I was just looking tonight for sensory diet examples to try and start incorporating and many of them had the child identifying objects or saying things. Stuff that dd just cannot do. I was going to look into getting The Out of Sync Child Has Fun. Is it written the same way or is there plenty of activities for our children's age?

Makenna won't do any climbing, running, etc and even though she started walking at about 13 months, I often get asked if she just started because she is so unsteady on her feet. She's extremely tactile defensive--really picky about what touches her--but primarily NO one can touch her (except me and sometimes dh). Talk about having a constant battle on my hands with family members! .

Good luck with everything and I hope your ds gets approved for the program! My dd did not qualify for EI by the standard reasons. She scored high in nearly all areas except language (had a 20% delay) but they used "informed clinical decision" to approve her because they reasoned that her sensory issues were so severe that she would only continue to fall behind without intervention so would qualify for the program later anyway. This way they could work on prevention rather than correction.

And I have been there with the dh issue also! My dh's FIRST words about all this were, "There is NOTHING wrong with her." But, he has come around rather quickly, especially after doing the brushing and seeing small baby-step improvements!

Shanna & Makenna (19 months)

www.littlemakenna.com

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Registered: 03-27-2003
Fri, 11-12-2004 - 12:56pm
Your son sounds a lot like my 2 boys, but especially my younger 3.5 year old son, McKay. His facial muscles were quite weak (they're slowly getting better) and he had/has a lot of tactile defensiveness, as well as vestibular and proprioceptive issues. He did EI and now is in Special Ed preschool, and both have helped SO much. I would fight tooth and nail to get Kyle into EI now. Every month is precious. And it sounds like he needs it.

Also, one observation I have is that sometimes the eating is affected by the low facial muscle tone, but also the low facial muscle tone is then affected by the not eating. Eating and drinking provides a lot of chance for these kids to excercise their muscles, so slowness in eating can lead to less talking. The more I learn about the normal development patterns of humans, the more interconnected (and frankly miraculous!) it all is. So sometimes just letting them chew on chewy toys (or chewing on fruit snacks or licorice, etc.) can help them get stronger muscles in the face, and it does help in eating.

I love the Out-of-Sync child, but yes, you do have to adapt for younger kids. Your OT will be great at this. Do you have a therapy ball? You can get "excercise balls" alt Walmart for like $12 and work on vestibular and proprioceptive issues with your son. Do you have a swing? My son LOVES that and I get a lot more speech out of him when we work on the swingset outside. Beanbags are great, as are letting Kyle play with lots of differently textured things. My older son loves to paint in shaving cream on the kitchen table (it cleans the table nicely too!), and drive cars on cookie sheets that I cover in flour or cornmeal and then put "obstacles" of tp rolls, spoons, etc. all over. And playdough. My oder son loves it. My younger son is more tactilly cautious, so we put him in the bath and then put in bubbles, or turn the water colors or get foam soap, etc. (For some reason, he's more willing in the bath.) He also likes to play with brightly colored sponges we put in the bathtub for him. Ummm, other things he likes, for tactile stim are feather dusters (he likes to grab it and pull it through his hand), polar fleece blankies, bumpy balls (you know, they are balls with little bumps all over them? I can't think of the name right off...), koosh balls are getting more ok, and silky fabrics. There are more, but I'll have to think a little more.

As to Kyle hitting his ear, you might want to watch that. My younger son used to just do that when he was about 15 months, and I didn't think much of it, but it did develop into a stim the older he got. It kind of grew into flapping his hands and screaming. I'm not trying to scare you at all, but I wish I would have kept more of an eye on it. I am trying to break the stim now by pointing it out to him ("McKay, stop!" said nicely) and saying, Oh, you're feeling so excited now! Or Are you upest? Or whatever. It would have been a lot easier to break a long time ago though. Plus, the less he is stimming now the more words I seem to get out of him.

And I agree on it taking awhile for husbands to accept that anything could be wrong. My husband kept insisting it was just because they are smart boys that they were having a hard time speaking. (Yes, they are brilliant, really, but still.) I finally had to convince him that if it was just because they are so smart (my 3 year old loves phonics and loves to tell everyone, "The vowels are A E I O and U. Sometimes Y is a vowel too. All other letters are called consonants. Y can be a consonant or a vowel. LOL!), then a little therapy wouldn't hurt them. But if there was an underlying problem, then lack of therapy really could be a huge problem. He came around a lot when he saw the progress they made in therapy.

Good luck! I'll try and think of more toddler sensory diet things you can do.

Rachel

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Registered: 04-07-2003
Sat, 11-13-2004 - 8:07pm
Shanna,

Thanks so much for your support. I skimmed the book "The Out of Sync Child Has Fun," and most of the activities are for children ages 2 or 3 and up. But, you might be able to alter some of the activities to make them suitable for your DD. At the very least, you'd be able to use ideas from the book soon as Makenna gets older.

I'm glad you've seen improvement in Makenna since getting therapy help. It sounds like your DD is really tactile defensive. It's weird but my son isn't outwardly tactile defensive. He wants to be picked up - sometimes very often during a day - and now likes to put his face again ours when we are holding him. And he doesn't mind my kisses, and I kiss him a lot because I love him so much and can't help it! (LOL) Clothes don't seem to bother him. But, he won't hold our hands for anything and doesn't like hugs while he is sitting on the floor. Also, the bottoms of his feet are sensitive. He is VERY sensitive regarding his mouth - feedings are hell - yet he loves vibration in his mouth. Go figure!

I hope you continue to see improvement in Makenna (she is so cute, by the way!), especially that she will grow to like being hugged, etc. I am really looking forward to starting therapy for Kyle.

Thanks again for your support!

Michelle and Kyle (17 months)

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Registered: 04-07-2003
Sat, 11-13-2004 - 10:27pm
Thanks, Rachel, for all of your support and good ideas about activities to do with my son. I do have a big exercise ball and use it with Kyle a few times a day. I put him on it either on his stomach or back, and roll him around on it to help with his balance, etc. I'm sure an OT will have more ideas for me on how to use the ball with Kyle.

I did think Kyle's eating situation was perhaps slowing development of his communication skills, but I would think it wouldn't affect his use of gestures, which are none right now. Also, Kyle has had eating problems from Day One - he didn't suck perfectly from a bottle until he was 9 or 10 months old! I'm thinking Kyle's feeding and communication skills are being hindered by very low muscle tone in his face, and that feeding is further affected by him being VERY sensitive in his mouth area. I also honestly don't know if he processes hunger pains very often. He's been that way since birth.

Kyle doesn't hit his ear very often, and I don't think it's for "stimming" (a new word to me). He seems to do it when he's very stressed, which is usually during a feeding. I try to calm him down when he does it. I hate to see him so stressed when I'm just trying to feed him.

Kyle does crawl very fast in place sometimes and spin in circles while sitting on the floor. Those are probably stim activities, but they might be good for him for his hypo vestibular problem. I'll be asking an OT about that.

Thanks again for your support! It's nice to know I'm not alone in this.

Michelle and Kyle (17 months)