- Re: Sensory integration issues

[Guest guest]

We are setting up a neuro appointment for Luke at Mayo. The soonest Dr. Renaud can see him (being a new patient of hers) is in 2-3 months so we will coordinate it with Asenath and Zipporrah's next trip to see the neuro, rheumotologist, and geneticist. I wanted to write you back and talk about the sensory integration disorder. I am amazed how "popular" this issue is lately with therapists, doctors, and social workers! I have heard tons about this subject; so much that I purchased two books on the topic. We knew Marquis (2-adopted) has it due to inutero drug exposure, and know Zipporrah and Asenath have it due to stroke damage, so if Luke is having stroke episodes I know it is possible for him to have the same issues. I used to always just call it "sensory issues." Now I know the technical name for it. Luke definitely has sensory issue problems because he can't feel pain in his extremities, nor temperature anywhere except for his spine (on rare occassions he says he will feel some type of stabbing pains, burning pain, and temperatures) and he also has numbness and tingling in his face (as do I) when he is worn down. All of these things are definitely sensory in nature. I have been researching more in this area trying to see how much Asenath may be dealing with because she "loses it" quite frequently about strange things. She become afraid of swings, stairs, and slides at times (and other times is ok with them) and we have discussed the reasonings with the therapists. It could be balance issues affecting her perception of safety and sensory integration goes along with this as well. Steroids definitely make her easily upset as well. Zipporrah too has been diagnosed with the disorder because of her first SLE at 2 months. She has a problem calming herself without me (her stabilizer) and has problems with laying in certain positions due to body awareness issue. (So they tell me-plus lots of other things) Anyway, this is a long note just to say I agree with you on the possibility of sensory integration issues being in Luke! Hope you are having a good weekend. Enjoy mommy's day! Darla: mommy to Asenath, Zipporrah, and the gang Re: eye issue/possible SLE ?'s Best wishes for Luke on his appointment. I think with your family's history, I would still continue the testing. My oldest daughter is 7, and had to have a MRI for migranes. She actually thought it was cool, and wanted to do it again. I have no experience with nerve testing, but I would ask how detailed it is before they do it. Maybe they can do the MRI first, and then if they do not get answers, then go foward with testing. The shower thing is very unusual, I would want to get that checked out. I know a family with a son with sensory integration problems, could he possibly have this type of problem? These types of problems can cause alot of discomfort to the individual, where is soothing to a person without these issues. Best wishes for your entire family. Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Is there anything they can do about sensory integration problems? I wonder if some of Gracies problems are due to this. We have days where all she wants is someone to scratch her. She cannot verbally tell us what is wrong so we really do not know why. All she does is take your hand and rub it on her legs or arms, then we understand what she wants. I also think she has a very high pain tolerance. (Although I do not agree with it) my husband was showing her the flame on a lighter and she just put her hand in the flame. My husband was shocked when she never moved it out. Fortunatly she did not get burned, but he was surprised that she did not move. I kind of wish he never told me about it, but I guess that is what daddys do (get into trouble). I hope Luke's appointment goes well. I will be praying that it is nothing to serious. We all know you have too much on your hands already. Best wishes, and thanks for the extra info. I really had only heard a little on this before.

[Guest guest]

Hasn't Grace been on many antibiotics? She may have yeast- if she is itchy. My son's pain insensitivity went away and he became much more sensitive after we eliminated everything with casein ( milk protein) in it, including Cool-Whip ( which is loaded in it even though they claim it is non-dairy) and Nutra Grain bars.

There has been some research on kids with developmental & physical problems concerning casein- it is a hard protein to digest, and even harder for these kids.

Cindy-GA

Re: - Re: Sensory integration issues

Is there anything they can do about sensory integration problems? I wonder if some of Gracies problems are due to this. We have days where all she wants is someone to scratch her. She cannot verbally tell us what is wrong so we really do not know why. All she does is take your hand and rub it on her legs or arms, then we understand what she wants. I also think she has a very high pain tolerance. (Although I do not agree with it) my husband was showing her the flame on a lighter and she just put her hand in the flame. My husband was shocked when she never moved it out. Fortunatly she did not get burned, but he was surprised that she did not move. I kind of wish he never told me about it, but I guess that is what daddys do (get into trouble). I hope Luke's appointment goes well. I will be praying that it is nothing to serious. We all know you have too much on your hands already. Best wishes, and thanks for the extra info. I really had only heard a little on this before.

Please contact mito-owner with any problems or questions.

[Guest guest]

No, she is rarely on antibiotics. But, she used to have a severe milk protein intolerance. She actually just switched to normal milk about 6 months ago. She will see her GI soon, I will ask then. We have treated her face with Elidel, because she has eczema there, but the rest of her is not red just itchy. Thanks for the insight, I will check it out.

[Guest guest]

Fish oil helps with eczema... you can buy flavored at Kirkmans.

Cindy-GA

Re: - Re: Sensory integration issues

No, she is rarely on antibiotics. But, she used to have a severe milk protein intolerance. She actually just switched to normal milk about 6 months ago. She will see her GI soon, I will ask then. We have treated her face with Elidel, because she has eczema there, but the rest of her is not red just itchy. Thanks for the insight, I will check it out.

Please contact mito-owner with any problems or questions.

[Guest guest]

My son's pain insensitivity went away and he became much more sensitive after we eliminated everything with casein ( milk protein) in it, including Cool-Whip ( which is loaded in it even though they claim it is non-dairy) and Nutra Grain bars

Cindy, That is interesting. One of the first things I noticed about Chelsea was a high pain tolerance (she did not even flinch at her first blood draw at 7 mos). She has been on a vegan diet (no meat, eggs, or dairy) for over a year and still has a high tolerance for pain.

e, Chelsea's mom (nonspecific mito)