[JBAmom]

Here's another try because I think a couple other mom's like me are trying to get this going. My apologies to the last two posters on the last SID thread, I hope you catch this one. As I was catching up on recent posts, I was excited to find the old SID thread until I realized that most of the posts were from Spring of last year. So maybe we can start a NEW SID support thread. Here goes.....

 

[Jewelie]

Hi, thanks for starting this. I have 2 girls, 4.5 & 16 mos, both apparantly with SID. Oldest dx about 1 yr ago, has tons of anxiety (weird stuff too like ceiling fans- what's up with that?)

Youngest- we just realized has feeding issues- having a feeding eval soon. also had terrible reflux, still can't put her down asleep.

just stopped OT for oldest b/c we can't afford it anymore. but doing brushing and joint compression alot with both girls.

anyone tried this new therapy for SID that uses electricity- similar to TENS units? (I just read about it on mdc- will try to find it again)

Thanks Mamas- this will be really great!

Julie

 

[Delacroix]

Jewelie,
Thank you for the heads up on this thread! Just today, I finally receive this book, "Sensory Integration: Theory and Practice" by Fisher, Anne G.; Murray, Elizabeth. I'm reading everything that I can right now, as my understanding of this condition is minimal.

I'm seeking empowerment in the information, and will share whatever I can with the mamas here.

Thank you for including me.

 

[JBAmom]

If you haven't already read them, The Out of Sync Child is a great resource, and The Sensory Sensitive Child by Karen Smith and Karen Gouze really helped me see how some of the behaviors are coming from the sensory issues.
Both books were helpful without being too technical.

 

[Finch]

I really liked the book Raising A Sensory Smart Child. It was much more helpful to me than TOOSC because ds was so young when we got him diagnosed (13 mos.).

 

[Aeress]

anyone read anything on using the floor time model? I just started reading information on using this play based approach.

I am also trying to get my hands on Pivotal Response information.

There is alot of new information out there.....always hard to find what works for you and your child....i will check back to some of my resources....

I like building bridges, don't have the book with me, but it is helpful.

 

[Delacroix]

Thank you for the great book info. I read The Out of Sync Child a long time ago, but I think I need to read it again.

Here is a link to the Floortime foundation.

http://www.floortime.org/ft.php?page...yths+and+Facts

Floortime was developed by Stanley Greenspan, a doctor whom I admire tremendously.

 

[ikesmom]

Depending on how old your kids are you might consider yoga. It tones, stretches, some apply pressure, and its relaxing. It is great for anxiousness and you can drop in for a class or two without a long term commitment. The child yoga here was 8 bucks for an hour. Most holistic minded people don't mind if a child has issues just as long as its not disruptive. If you can't do that then a video at home would work too.

 

[Jewelie]

thanks JBA Mom for starting this- its exactly what I need! I'm glad you found it Delacroix and everyone else who's here. I'd love to hear from everyone about your children and where this path has taken you. We just stopped OT ($ reasons) and I'm looking for ways to support my children myself.... I look forward to learning much from you mamas.

thanks,
julie

 

[rbear4]

I have 3 kids with official SID (ages 6,10 and 12) and one who has loads of sensory issues who likely would qualify as well or so I hear. We are very much an SI family and have been for years. I also started working parttime last year for a friend who is an SIPT certified OT. I am a teacher by trade but have been Stay home mom forever so I have to go back to school to get a new credential. In the mean time I am working as an aide for her while I go to school.

Our school distict is notoriously bad about SI type OT. My 2nd child did have clinical OT paid for a while but now has consulting only. My oldest is being re-evaled for OT currently. Mostly I just do it at home. I have a sensory type gym in my playroom complete with suspended swing, tent, therapy balls, weighted blanket and toys. I am in the market to get my son a new vibrating type toy.

Renee

 

[JBAmom]

Our clan: 2 sons age 5 and 7, both with SID, daughter age 2 with no apparent SI issues.
Younger son has always been sensitive to seemingly everything, and had multiple allergies as an infant. Treated allergies with NAET, which seemed to take care of allergies as well as aggressive behavior. This past year we were surprised to discover that his remaining quirkiness might be something besides a unique personality. He is tactile and auditory sensitive, seeks vestibular stim almost constantly, fine motor delays, motor planning delays, visual tracking problems, other perceptual-motor problems that I still don't understand, delays in social skills and play skills that are very much like Asperger's though he has not been Dx'd. We have been doing O.T. for a couple months, and just started a social skills class.
Older son's development seemed fine until 1 1/2 years ago in K. Began having social problems, low self-esteem, difficulty paying attention and following directions in class, dislike for all team sports, and these problems spiraled downhill until this past winter. The school suggested and had him tested as positive for ADD. Our Dr. agreed with that. We tried NAET with him and saw dramatic improvement in his attitude both at home and school. We did a gut-clearing/anti-candida diet and have seen great improvement in ADD symptoms. O.T. screened him for SID, he is tactile sensitive, seeks deep pressure, visual tracking problems, and great difficulty with auditory processing. I haven't seen much progress with O.T. yet, we are waiting to get a sensorimotor visual exam. I am still looking for answers to explain his auditory processing problems, also.
We have had to get most of our therapies ourselves, fortunately our insurance has covered a lot of it. Our younger son did not qualify for services from early intervention, because SID is not a Dx that they service.
Older son gets a total of 1 hr a week of educational support from the school, which is almost worthless. But I know more now after lots of reading and chatting with other moms like this, so when school starts in the fall, I will try to ask for more.
I'd love to hear about your kids too!

 

[gsdmama]

My 5 year old son has definate sensory integration issues and possibly Asperger's Syndrome. We were receiving therapy through our school district's early childhood program, but I have elected not to send my son to kindergarten this year, so I'm looking into private OT. My son will be seen by TEACCH for the first time tomorrow.

Thanks for the heads up about this thread Julie. I didn't realize your younger daughter is going in for a feeding eval - are you seeing Jodi Petry at Duke?

 

[Jewelie]

Thanks for all the replys. I am so excited to have such experienced parents whose brains I might be able to pick! Let me start right away-

JBA Mom, what is NAET?

Also, has anyone who's children have SID w/o ASD had success/improvement with GFCF or other diets?

thanks,
julie

 

[Jewelie]

sorry- JBA Mom you did mention you had success w/a gut-clearing anti-candida diet. I missed that before. Can you tell me more? I did The Yeast Connection diet (from the book) years before I had children and I had dramatic results. Someone suggested we do testing for heavy metal toxicity (hair testing). anyone heard of this for SI issues? Our money is so tight I feel like we have to have to be really selective with any testing we do that isnt' covered by insurance....

 

[AllyRae]

I'm reading along as well--my 2 1/2 year old was diagnosed with SID/modulation delays almost 2 years ago. It's 1 AM, so I can't type long, but I wanted to let you know I was reading.

 

[JBAmom]

NAET is an acronym for Nambudripad's Allergy Elimination Technique. It is an alternative allergy treatment, that was discovered by Devi Nambudripad, which proposes to actually eliminate the allergy. She has a couple books - Say Goodbye to Illness, Say Goodbye to Allergy Related Autism, and Say Goodbye to Allergy Related ADHD. I don't remember the title names exactly because I've given my copies away. If you're interested, that is the best source of info on the technique. You can find a practioner near you at www.NAET.com. The practitioners usually are some type of medical professional who has been trained to use the technique and often use it along with their regular practice, ie. nutritionist, chiropractor. The technique itself uses principles from chiropractic, nutrition, acupressure and kinesiology. It is a process of exposing the body to the allergen while balancing the body's energy. Specific food avoidance after treament is only 26 hours, go back a week later to check it, then that specific allergy is gone. I wouldn't believe it if it hadn't worked so visibly and dramatically for our kids.
My younger son had allergies to many foods, and to just about any substance that touched his skin, he reacted with exzema and nasal congestion and was becoming increasingly angry and aggressive. All these symptoms disappeared within about 5 months of weekly treatments and he can now eat and touch anything. After 3 years he remains allergy free as far as we can tell, though he is still angry and aggressive sometimes, but I think that is from his SID problems.
My older son had no visible allergy symptoms, but I wanted to try NAET before following my Dr. suggestion of medication. It improved his attitude and disposition. The NAET practitioner also did the anti-candida treatment which involved NAET-type clearing (balancing) along with a very strict diet for 2 weeks. This definitely improved his ADD symptoms. It's possible that any anti-candida diet would have helped, maybe even one that could be done at home.
Though both boys improved so much with NAET, their SID symptoms improved only in that they are overall more comfortable. NAET is expensive and is probably never covered by insurance. I would recommend it for anyone who clearly suffers from allergies, or for anyone who has a hunch that ADHD/ADD or ASD is being caused by an agent (food, vaccination, yeast, etc.) But if your children's symptoms are just SID, without another component, I am skeptical that it would help much.

 

[judejude]

Count us in

DD is 10 (and a 1/2

) and she has had SID since she was born...and/or it was created in the NICU when she was in there for a month after birth.
She showed no sign of it while in the hospital for that month because I think her body was just shut down, but the second we got her home it all started.

The OT who came to the house wouldn''t believe us because she was so young. Of course I didn't know what to call it at the time. DD cried like hell everytime the phone rang, someone sneezed, coughed, laughed, or anything else unexpected.(don't get me started about the noises outside of the house - buses going by, car horns, etc.) She also woke up to any little noise, and I mean little. She slept with us, but during the day could not be put down while sleeping-- you had to hold her the whole time she slept or she would wake up EVERY time.

Anyway, this went on and she was diagnosed at some age...maybe 2 1/2. The psychologist was an expert on autism and she felt like her issues were about 50% neurological and 50% caused by all her time in the hospital (dd had had about 6 surgeries by this time and 7 hospitalizations, not counting the numerous CAT scans and other tests all the time)
Well, it proved to be true because every hospital visit worsened her symptoms for a while...and then when she'd start to improve we'd be back in the hospital again and starting all over.

Anyway, DD was born not to be a very good eater. She was a good nurser from the beginning, but didn't nurse quite as much as most babies. She didn't like solids much and didn't really start eating them regularly until about 18 months.
Weight was always an issue and at age 5 we finally gave into the idea of a g-tube. By this time she had eliminated so many foods that she was down to white bread and butter, tofutti cuties (tofu ice cream sandwiches), and cheetos and soy milk.
She threw up regularly, partly due to the Chiari Malformation Type II that put pressure at the back of her throat, but mostly due to textures and such.

After the g-tube the food intake slowly picked up and she is a good eater today and we only use the g-tube for medication.
She still will only eat certain things, but continues to try new things. She spits her food out a lot (in a napkin

) but still will try, which makes me happy.
She talks about being grown up someday and eating all kinds of things. I think she hopes that when she grows up she won't have this problem. She talks about liking certain foods to be "cool" with her friends...like she pretends to love pop/soda but she will only pretend to take a sip and then talks about how good it is

It's been a journey that is for sure. We went to the movies yesterday and I fed her m&m's while she sat with her fingers in her ears

My favorite books are: The Out of Sync Child, Helping the Child Who Doesn't Fit In, Quirky Kids, The Explosive Child, Nonverbal Learning Disablities at Home, and probably some more. I have the book Can't Eat Won't Eat but I've never read it

I would have read it for sure if I had had it years ago. I guess I bought it now because I could still use some tips even though we are not in crisis anymore.

I could probably go on and on, but I'll quit now to spare you

DD's primary diagnosis is Spina Bifida with Hydrocephalus...There's a whole other list, but that's the primary diagnosis. She has an anxiety disorder with specific phobias, but it's hard to say which came first the anxiety or the SID.

 

[judejude]

Quote:

Originally Posted by gsdmama My 5 year old son has definate sensory integration issues and possibly Asperger's Syndrome. We were receiving therapy through our school district's early childhood program, but I have elected not to send my son to kindergarten this year, so I'm looking into private OT. My son will be seen by TEACCH for the first time tomorrow.

I can't tell you how our lives were improved when we went from the OT through the schools (early intervention) to a private OT, and later, speech therapist. (2 or 3 evals with the schools said she had no feeding issues and on the 1st eval privately they noticed that she was not moving her tongue back and forth in her mouth---go figure)

Just remember people, that the schools go by an educational model and the private therapists go by a medical model. Medical model, meaning they cover everything, not just things pertaining to education (which I still can't totally figure out, that whole educational model thing...I know what it is, but it still boggles the mind most of the time).

 

[ikesmom]

I feel like I shouldn't post knowing that hypersensitive is a whole different diagnosis but my ds (6) is more hyposensitive. He has poor muscle tone, trunk control, large and fine motor strength/skills ect. There are times he reacts to loud noises, smells, and he is so ticklish all over it is absolutely rediculous. Not sure if that is just abnoxiousness or reaction? He stuffs his mouth full of food to where he can't chew or even spit it out. We have to watch him for choking. OT said he probably couldnt feel the food in mouth. He had nursing difficulty as a infant. His vestibular balance is off. He doesn't bump into things really, but he is extremely carefull. He stands with a irregular gait and clench fisted on the playground. He looks jerky in his movement. Somehow he still participates in activities/sports. He observes, laughs, and moves at his own pace. He is verrry social so it s pretty minor in appearance.

He gets therapy through the school. He will have new therapists this year and I work with him a lot too. He has LD's too.

 

[Finch]

Quote:

Originally Posted by gsdmama My 5 year old son has definate sensory integration issues and possibly Asperger's Syndrome. We were receiving therapy through our school district's early childhood program, but I have elected not to send my son to kindergarten this year, so I'm looking into private OT. My son will be seen by TEACCH for the first time tomorrow. Thanks for the heads up about this thread Julie. I didn't realize your younger daughter is going in for a feeding eval - are you seeing Jodi Petry at Duke?

Jodi is my son's OT! Love love love her.

Love, love, love TEACCH as well. Lmk how that goes.