I have a thought. It may be far off but a thought non the less. My nephew was just diagnosed with SPD (Sensory Processing Disorder). I was listening to some of the oral afflictions of these SPD kiddos and I got to thinking. I do know that Savannah has reflux, from the test results it is GERD. But it is mild GERD. She does not have damage but has inflamation. I understand that this can be very uncomfortable. But I have a very hard time with the starving to illness. So it leads me to wonder, How much of her aversions are brought on by reflux or could it be, reflux has exsaserbated (sp? :roll: ) more then just a sensory dysfuction.

In listening to what my nephew goes through I got to thinking, Some of our kiddos do suffer from oral aversions. OT evals conclude that there is call for senory integration therapy. But could the sever food aversions be caused from under developed sensory pathways. It would be a what came first question. But do you think reflux could cause a sensory development delay. Savannah has a very easy gag (understandable). But she also has some odd behaviors that could be explained by a very mild SPD. Such as she freaks out if she is chased, she can't stand loud noises, she gets very over stimulated if she spends to much time at the park with many children ( I wrote this one off as her being a preemie).

My nephew is sever and was almost diagnosed autistic but all the symptoms for that were just not there (by the Grace of God). But he has wicked temper tantrums, he is very rammy and agressive, some times he can't get enough touch sometimes it seem as though to touch him you are breaking his arm. He has to have stricked routine (from how to get to the bathroom to take a bath to who is first out the door in the morning). Tags, stiching of socks, the feel of some fabrics all cause him great discomfort. bright lights, noise, smells can drive him crazy. There are reasons for all of these behavior (but way to complicated for this post but you can go to www.spdnetwork.org if you are interested).

Well I wont get to into Sammy's story as it is not a reflux issue but the question at hand. Our kiddos with life threatening aversions, could having reflux from the get-go cause this system to malfuction enough where they would actually starve themselfs to death or are they acctually in so much pain that this is happening? Or could there be an underlineing SPD that would make reflux unbarrable do to the inability to prosses pain correctly? Could someone with a tendensy tword Sensory integration dysfunction triger a case of SPD? Or could having to deal with pain constantly triger a case of SPD?

On of the reasons I ask these is because I have an aquantence who has a child with a short optic nerve. This "one" small defect has caused blindness, retardation, problems with mobility..... Could there be more to "just reflux" then we think? Could this "one problem" cause other systems to malfunction? Is there anything that one could do for these young babies with reflux so they do not go down the same path that some of us have if sensory integration is addressed from the get go?

Janette - I am glad you are feeling better. I am sending quick recovery dust your way :angel9: . If you are interested in more information regarding SPD or DIS. I have a lot of sites, books and information regarding this. My sister has been sudying it for years as she thought that was what it was to begin with. She is a plethera of info and would love to help others who are in her boat. I am sure she would be OK with me giving you her e-mail address too (I'll have to ask though).

Sue

Hi Sue -- I'm sure there's something to all of your theories. Daniel's therapists have all thought he has sensory issues (though not the classic stuff, like the tags in clothes). There was a time when he couldn't even look at food, and he still won't touch certainly things that are slimy (applesauce, chunk of banana). One of our feeding specialists gave us a list of things (plastic easter eggs, sponges, kooshes, etc.) that we put in a bin and then hide a toy so D has to put his hands in these different textures. He actually has no problem with this. I feel he may have some very mild sensory issues but that our main problem is that he is acutely aware of what is food and what isn't. He splashes in puddles, sticks his toes in mud (though we have very little of that here :lol: ), and none of that seems to bother him.

Wow Sue...That is deep! We've known for a long time that Evan has sensory issues. We did feeding therapy with an OT and a ST, and also found sensory toys (koosh balls, sticky goo, etc.) to help him learn to deal with it. Over the winter, we began to explore the sensory issues more with his amazing (and new to us) OT. We've learned that there's a lot more to his sensory issues than just the oral aversions, so it's interesting that you brought this all up, Sue. We now know why he hates to be dressed and undressed, why he's so sensitive to bright lights (especially the sun), why certain smells set him off, and why he is so easily over-stimulated and then has such a tough time coming back down to earth. (BTW, there is no hyperactivity involved.) Through therapy, we've been able to help him deal with many of the touch issues, and he's no longer as sensitive to touching different textures.

I would really appreciate that list of websites, books and info. that you have. Once I've recuperated a bit more, I really have to get back into doing more of his proprioceptive activities and also find the time to dig out the info. that his OT gave me.

Hmmm. Sounds very interesting. Are you working with a therapist who might be interested in pursuing some research on the connections between the sensory issues & gerd?

I, for one, am convinced that stuff like this is more common than we think. So much "unexplained" stuff gets lumped together and labeled "colic" - but it just seems more logical that so much can go haywire with a baby's nervous system and it's worth it to figure it all out. I guess if babies were born able to swear and explain in full sentences what hurts and where, then science would invest more in their comfort and well being. Instead we're stuck with "all babies cry" and "all babies spit up." :evil:

Lucy I hear your frustration, we went through that with Savannah... Went??? Still are!! I got to thinking about this then but when my sister started explaining Sammy's stuff.......

Savannah was the same way as Daniel and Ian. She would gag if she even saw food or even things that looked like food. She wouldn't touch anything slimmy or even allow her hands and feet to get wet. There was no mud, slimmy food or even puddles. We went to OT for two years and now she is loving playing in the mud (coverd from head to toe sometimes) and she will eat bananas and she is the first one to splat into a puddle.

We have a bucket of beans. We bought about 20 lb of beans and put it into a plastic bin with a lid and we would hide toys and fun stuff. After she started putting her hands in it (that took a while) she liked finding things. Then we would put toys in there and pretend food (including broccoli, the food she was most sensitive too). The trick was to find the food and she would get to pick a prize from the goodie box when she did. We did that at home for some time. Now broccoli is one of her favorite veggies (go figure hu?). Once she got a less sensetive and you could put things in front of her without gagging we started with the slimey and sticky stuff. She first touched it with a straw then we moved to a spoon then we moved to a toothpick then to her finger tip then her finger then it touched her nose and cheeks then we would have her put it on her lips like lipstick. Soon she was putting it in her mouth. Mind you it took us two years to go from that sever to this point. Up until just recently she would only get her fingers dirty. The palms of her hands got dirty for the first time a month ago or so. I took a picture to proove it.


Janette - I will get all that info together for you and post it.

But there has to be a link in there somewhere with the sensory nervouse system and reflux. What came first I don't know but it's worth a thought hu?

Sue

Wow. I think that I see Walker and Curran there. I know that Aspergers has been mentioned a few times with Walker, but they have not been mentioned for awhile now. We will probably have him formally assessed for a learning difficulty this year as we know that he has the speech and language delay.

There may be a connection between this and GERD. Just a matter of searching and time and maybe we will find it.

I for one have found your posting of this topic fascinating. Thanks!

Leigh

Leigh, I hold you and your family deep in prayer. Seeing what my nephew and sister go through on a daily basis to have three with these potential hurdles has got to be exhausting. Aspergers was Sammy's first diagnosis.

Ladies, here is some info to look into. It's a lot of info but go through it slowly.

Titles to look up on a search engine:
Sensory integration disorder
Sensory integration dysfunction
Aspergers
Autism Spectrum
PDD (Pervasive developmental disorder)
PDD-NOS

Casein and gluten free diet (you will find stuff under that due to some research. Children with these disorders process those two proteins as an opiate and that is what is causing them to behave as they are)

Books
The out of sync Child (explains sensory integration disorder, there are many other resources on the back of this book)

Message board:
www.SensoryIntegration@group.msn.com
www.beyondplay.com (SI therapy items, they are wicked expensive but it will give you invaluable information about what OT does and why. My sister uses these ideas and goes to the store and finds the same things for much less money.)

Again she is willing to give out her e-mail address to anyone struggling with these issues if you want it.

I am beginning to be a believer in there is a link here. With what you all are saying, what we all are going through is so similar. With those children suffering with reflux and have no true indication of damage could this really be a combination issue and that is why they are having such a horrific time with it? (could this be why the GI's are looking at us as though we are crazy ladies and we “think our children are sicker then they really are") Savannah's GI is looking at the minimal inflammation and the borderline ph levels and wondering why she has such a reaction with not much to show for it. Maybe she had such a time of it when it was bad and painful that she is now dealing with something else entirely that is keeping her where she is at (Then add her age (four) to that and wow!)

Sue

Children with these disorders process those two proteins as an opiate and that is what is causing them to behave as they are)

Some children not all children with these disorders are better once off the two proteins

Just clairifying

I think Sue that I agree with you about the sensory processing and reflux. I know about sensory inttegration and have wonder about reflux and if there is a link to them together as to the fact that Hobbes had a mild form of reflux and has sensory integration with him having austum.I guess you could say that it is part of his austum. I was told that sensory intergration is another part of austum. It is right in that field of things(not explaining very well)I am just saying that it is for Hobbes, not every child. Hobbes's problem is he is a sensory seeker as they call it. He NEEDS the constant touch of my self(skin to skin) always on the "GO", has trouble with attention span, crashes into people, enjoys tight space(He likes to take a blanket which when he is touching it , no one but he can and sit and huddle under it for long periods of time), appears not to hear what spoke to, makes stranger noises or sounds. He can also be very overstimulated if there are alot of people in a room or he can isolate himself and focus on his movies. He is always chewing on non-food objects. He alos has a strong need fro water. He has to have some part of his body in any form of water. He bathes over 20 x/ aday if we allow it. He has to transfer any type of liquid to anything that it handle it. It at times does amazes me when he does everyday. You never really know what he is going to do.

Sorry to ramble on and if I didn't make any sense. :oops: I have some infor here if anyone has questions and I think that i have some sites that may be help. I was told that you have to watch what site you go on b/c the information itself is very hard to sort through and not all information is upto date. Good luck.

Wow Hobbes sounds exactly like Sammy. What is the difference between Autism and SPD? they sound a lot alike. Are you doing the brush therapy with Hobbies? It seems to have made a difference for Sammy in that he is not as rammy and touchy.

I wonder if they see reflux more often with SPD and autistic children because their sensory nervous system is recognizing it as major pain bringing it more to attention?

I wonder if there is any way of doing pain therapy for these kiddos. I have been able to desensitize Savannah with touch, taste, and smell to the point that things are not such an issue any more. But I still have difficulty getting her to eat a good amount of food. I wonder if it has something to do with still having SI issues were her throat is concerned? What could you do for that? I wonder if children do seem to get better as they get older because with day to day food and drink they slowly desensitize their self.


Hmmm? :scratch:
Sue

[quote="Hopesfriend"]Wow Hobbes sounds exactly like Sammy. What is the difference between Autism and SPD? they sound a lot alike. Are you doing the brush therapy with Hobbies? It seems to have made a difference for Sammy in that he is not as rammy and touchy.

Sue, I was told and from the info I have from the Austusm Society, SPD is a type of Austusm, just like Aspergers, PPD area type of Austum. I reread the information after the last post and went speaking to the CDW who would work with Hobbes in August she agreed. They want to start the brushing but DH is not for it. He is not should about it. The Ot will explain it toi him on Monday. I would like to do b/c It is me who is being touch 24-7 and Hobbes can't sleep unless He can touch me.

But I still have difficulty getting her to eat a good amount of food. I wonder if it has something to do with still having SI issues were her throat is concerned? What could you do for that? I wonder if children do seem to get better as they get older because with day to day food and drink they slowly desensitize their self.

Sue, I didn't know if this would help you with Savannah but Hobbes doesn't eat either and he doesn't have reflux any more. He is a very picky eater. I have been told that is part of the austum. That Ausitic children are fussy eater. Here where may be it will help you. They suggested to me that with Hobbes, if say he likes mashed potatoes and there is something new I want him to try , just put a size less then a dime in the mash potatoes and then go from there and soon he would be eat a tablespoon of the new iten without even knowing. Sneaky! I am going to start to try it soon. We are just trying to deal if more seroius points first. Maybe it would work for you and Savannah. Oh they also just let him eat what he likes. So maybe that would work for her as well. i know it is hard.

:D

That's the most cofusing part of this whole thing. Savannah likes the taste of almost everything. It is not that she doesn't like it, it is that she says she is not hungry. Or she doesn't feel like eating. Then after a few days of no food she will eat a bite or two (curtainly not enough to counter the days of nothing). She will even ask for different things but when it comes to her plate she is not interested. That is why I was thinking maybe it is a swallow or throat thing. Her swallow is normal but I don't think she likes to do it. there is nothing to really explain her failure to thrive. Or should I say periods of failure to thrive. Why isn't it all the time? Why will she go a couple of weeks were things are getting on track and then all of the sudden she is lousing wieght again?

I thank you for entertaining this thought process with me. My dad just reminded me that my Grandfather also has a SI issue. He does not feel pain. He cut off his thumb a while back and finished his project before he went to the hospital. My Grandma on the other hand ran around screaming and then fainted :lol: My cousin is the same way to a lesser extent. Then there is Sammy who if he even gets a paper cut you would think the world has come to an end. And it isn't for show, he is truly in a lot of pain from something so small.

Can reflux without asid be painful?

Sue

Sue, I think that it can be painful. Zoee reflux and when they did her Ph probe when she was 12 weeks old(13months now) It showed very little acis but now she is on Prevacid. She goes into fussy periods where you can see in her eyes that she is not feeling well.

Just a question, have you had a genetic specialist to see her to see what maybe they can come up with?

Wow! I'm MIA for 24 hours (Brandon's 6th birthday) and after catching up on this, I'm on information overload. There's a tonne of great stuff here, and I think I'll go in and make it a sticky so that it's more easily accessible for everyone. I've had a couple of people mention The Out of Sync Child to me, so I guess I should really check it out. I've also heard great things about brushing from another mom of a child with sensory issues. Hopefully dh will agree to you doing it, Shannon. There's definitely no harm in at least trying it. You'll have to keep us posted on that.

Finally, I looked up the "official" wording that Evan's therapist gave us. She strongly believes that he has Tactile Discriminitive Dysfunction, which would affect the sensory, as well as the motor planning. Thanks for the idea of doing a google, Sue!

Thanks Sue for all this information. I am truly one of the lucky ones now as although there were many problems with Walker when he was younger and Aspergers and Pervasive? disorders were bantied about quite a bit, we are fortunate that whatever may be causing his speech and language problems keep him high functioning. Up until SK Walker needed touch so very much, lined things up in order (for instance 100 matchbox cars would be sorted according to colour and type and placed ram rod straight end to end around the floor), his banging his head into you (still does this at times), his need for certain textures in pyjamas mainly, his excessive cleanliness as a younger child (not so much of a problem now where he used to freak if he was dirty before), his unwillingness to look you in the eye (still a problem), his dislike of loud noises, and now I see on the list several things that seem to explain his excessive silliness and wanting to fit in, but not having the social skills to do so. Funny, but it has all been put down to his speech problems.

Curran falls into another segment as he is not the same as Walker. One thing that struck me about it was the fear of heights, etc. Whenever I have to take Curran to a walk in clinic or hospital and he needs to get up on the table he freaks. At one clinic the doctor asked me if he ever suffered a fall and the answer is no. He just does not like heights and even needs diaper changes on the floor as he freaks if he is placed on a change station. The doctor told me that no child so young has such fears. Well, Curran does and has for a very long time. He also seems to have no concept about noise levels and must be reminded constantly of "gentle, gentle".

Iain must have sensory issues with food as he has had MAJOR texture aversions (and just plain food aversions in the past). He is playing with food on a regular basis now.

Fascinating stuff. I am going to read more about this. The book "Out of Sync Child" was one I remember hearing about from the speech pathologist that dealt with Walker at the hospital. As I have a very extensive library, I shall endeavour to add it.

The description of Savannah asking for food and then refusing reminds me so much of Curran. At the height of his problem he would lose 2 lbs at a time and take 2 or 3 months to gain it back. We were so up and down over the course of a year that I was going batty. He was a good weight to begin with so the ped and GI feel that I am being over-reactive that he stalled on his weight for over a year due to the ups and downs. Even now his GI (the mineral oil king) tells me that he is such a good weight and height... What more do I want?! ARRRRRGGGGG!

There should be key words or sentences that when uttered by our peds or GIs would allow us to smack them into next week without fear of reprocussion....I have an extensive list of them that irk me beyond belief.

Leigh

[quote="Janette"]. Hopefully dh will agree to you doing it, Shannon. There's definitely no harm in at least trying it. You'll have to keep us posted on that.

Janette, I have heard great things about thte brushing. We would hear more about it on Monday when the OT and CDW come. Will update more then.

I don't know what is wrong with some GI's. As mothers, we know when something is a-miss. We are with these children day and night. I worry about Savannah's up and down weight. I wonder what is developing when she is "down".

Leigh - I wonder if you put a weight blanket on Curren while he is on a changing station or up a bit higher then he is comfortable. One of the problems with sensory stuff is they are out of sink with were they are in space. What seem to help with some are these heavy blankets that weigh them down. It helps with my nephew who does not like to even sleep in a bed. He has slept on a mattress on the floor since he was about two until the blanket. So I wouldn't call it a fear of height but a fear of his place in space. That's a hard one to explain. But my nephew says that he feels like he is floating and falling at the same time (have you ever drank to much and had the spins? I got the impression it is somewhat like that were you felt better if you put your foot on the floor). Omit the floating and you may have something. Those blankets are really expensive on line but there are ways of making them with little squares with small weights in them. You know to even see if it would work before you go through trouble I wonder if we can all put our heads together to figure something around the house you can try first. I was thinking a pillowcase with sand in it but the sand would fall to one side. If you do figure out a good way let me know.

Savannah still doesn’t like to be chased or if you move to fast around her she will drop to the ground and cover her head. She gags if water touches her mouth (unexpected water that is). She is almost brought to crazy if she has growing pains. Though she doesn't feel pain like one would expect from a child except if she has growing pains or is bitten by a bug. Then she could cry for an hour(with a bug bite that is). and If I don't get the itchy or pain under control it could last longer then that. But she has cut her knees had stitches in her chin bumped her head hard enough for a bruise and a bump and broke her color bone. And still there is very little reaction. (Well the broken collarbone gave reaction but not what the docs would have expected for the severity of the break and not for the duration they expected. So it is obvious there is something there to wonder. So I do still wonder if what she is going through now with consumption is not necessarily the reflux alone causing sever symptoms. The only way we can tell is to do, yet, another scope and PH probe.

She is still eating(day 13). We are still going meal to meal now. I am hoping that it turns to day to day soon. I think she is getting healthy enough to start letting go a bit of the meal to meal.
Sue

Leigh - I wonder if you put a weight blanket on Curren while he is on a changing station or up a bit higher then he is comfortable. One of the problems with sensory stuff is they are out of sink with were they are in space. What seem to help with some are these heavy blankets that weigh them down. It helps with my nephew who does not like to even sleep in a bed. He has slept on a mattress on the floor since he was about two until the blanket. So I wouldn't call it a fear of height but a fear of his place in space. That's a hard one to explain. But my nephew says that he feels like he is floating and falling at the same time (have you ever drank to much and had the spins? I got the impression it is somewhat like that were you felt better if you put your foot on the floor). Omit the floating and you may have something. Those blankets are really expensive on line but there are ways of making them with little squares with small weights in them. You know to even see if it would work before you go through trouble I wonder if we can all put our heads together to figure something around the house you can try first. I was thinking a pillowcase with sand in it but the sand would fall to one side. If you do figure out a good way let me know.

Sue, we are going to be the weight blanket for Hobbes on Monday when the OT is bringing one for him. I heard that it does work wonders. I can't wait to see if it works for Hobbes. Thanks for saying that it worked for your newphew.

She is still eating(day 13). We are still going meal to meal now. I am hoping that it turns to day to day soon. I think she is getting healthy enough to start letting go a bit of the meal to meal.
Sue

Great to heard that Savannah is still eating. I hope that you can get it to every day instead of meal to meal. Crossing my fingers and praying for that to happen for you and Savannah! :D

Good luck at the OT

Message board:
www.SensoryIntegration@group.msn.com
I've been doing a lot of research lately, as Evan has been diagnosed with Tactile Discrimination Dysfunction, a sensory processing disorder. Unfortunately, the link that you gave for the message board doesn't work. Do you remember what it was?

Janette, I have heard great things about thte brushing. We would hear more about it on Monday when the OT and CDW come. Will update more then.
Shannon,

Did you ever go ahead with the brushing?

Okay...I've gone ahead and moved this thread to this new, more suitable forum. It'll be easier to find that way. :wink:

Janette, I have heard great things about thte brushing. We would hear more about it on Monday when the OT and CDW come. Will update more then.
Shannon,

Did you ever go ahead with the brushing?

Yes, we did and it was not for Hobbes. An hour after the brushing, he would become hyper and he had a lot more meltdowns so we decided that it was not for him especially since it was to calm him down not to cause he to have meltdowns. We have seen an Ot this past week who has found that Hobbes is an oral seeker. He has to touch, lick, etc. So she is going to help us redirect him in to postive oral seeking subject instead of the negative that he does like spitting, lick, the need to transfer liquid to one thing to another. He also has no seek of danger(I know what children do at 3) but for Hobbes it is not safe. We will always have to watch him because he just does things like climbing the counters, wall unit, , jumping off of things that could really hurt him. He is covered in bruises now from banging his knees, elbows, falling etc. So we will have our hands full with him.

Sorry to hear that the brushing didn't work! About having no sense of danger, Evan was like that for the longest time and is finally learning to be a bit more safe. It's so hard when they hit 3 yo. and have no sense of danger.

Just a little note to add...I found it interesting to learn that Sensory Integration Dysfunction (an umbrella term) is a neurological problem. So why didn't Evan's neurologist come up with something around that? :shock:

Here's an excellent, parent-friendly checklist I found.

www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

Thanks Janette! That was interesting! Hobbes seems to be more of the hypersensivity but there are one or two that are the other one. I think that i am seeing some of the sensory issues that they mention with Zoee as well so I will keep an eye on her with these issues. It is weird all of what they mention is what helped diagnosed Hobbes with austism.

Just a little note to add...I found it interesting to learn that Sensory Integration Dysfunction (an umbrella term) is a neurological problem. So why didn't Evan's neurologist come up with something around that? :shock:

I think that it is problem that is hard to diagnosed but I agree that he should have picked up on sometimes. :?

I think that it is problem that is hard to diagnosed but I agree that he should have picked up on sometimes. :?
I know. I was half being sarcastic, but it does make me wonder just a bit. :?

:oops: Sorry Janette! My brain is a little slow at times! :oops: :lol:

:oops: Sorry Janette! My brain is a little slow at times! :oops: :lol:
lol...It's not you, Shannon. It's hard to read the emotions on here without seeing faces or hearing the expression in people's voices, and when we're too tired or on the run and forget to add in "said sarcastically" and the like, it makes it even harder.

It's interesting to hear all the stories and know that I am not alone. My daughter is 14 months now and she has issues when people come close to her and say hi. Then again it just might be that from the moment that she was born all the strangers ever did was hurt her. She also cries histerically if my nephew yells in her face or in the room were she is in then after that she is no good. Just by looking at his face she starts to cry. She also has a hard time when the room is very noisy. She will cry the entire time that we are there.

She also does not like to be held to much she was never rocked to sleep and now that she moves around a bit she really doesn't like to be held.

Am I just over exagerating or does this sound like she has some type of sensory issues?

Ada

It's possible, Ada, especially with the noise one. She could just be sensitive to loud noises though. Did you do the checklist that's posted in this forum? If you just have the couple of things that you mentioned here, I wouldn't be too concerned.