SID support thread - Mothering Forums
Forum Jump: 
Reply
 
Thread Tools
#1 of 241 Old 08-05-2006, 03:21 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.....
JBAmom is offline  
#2 of 241 Old 08-06-2006, 01:41 AM
 
Jewelie's Avatar
 
Join Date: Nov 2005
Posts: 260
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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
Jewelie is offline  
#3 of 241 Old 08-06-2006, 02:14 AM
Banned
 
Delacroix's Avatar
 
Join Date: Aug 2005
Posts: 2,910
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
Delacroix is offline  
#4 of 241 Old 08-06-2006, 03:19 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
JBAmom is offline  
#5 of 241 Old 08-06-2006, 09:22 AM
 
Finch's Avatar
 
Join Date: Mar 2005
Location: NC!
Posts: 9,527
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.).
Finch is offline  
#6 of 241 Old 08-06-2006, 09:36 AM
 
Aeress's Avatar
 
Join Date: Jan 2005
Location: Neat the Shores of Lake Erie
Posts: 6,506
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Dhjammin.gif, Me knit.gif, DD 10 REPlaySkateboard04HL.gif, DD 7 cat.gif, DD 4 joy.gif

We reading.gif, homeschool.gif, cold.gif, eat.gif, sleepytime.gif not in that order

Aeress is offline  
#7 of 241 Old 08-06-2006, 01:41 PM
Banned
 
Delacroix's Avatar
 
Join Date: Aug 2005
Posts: 2,910
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
Delacroix is offline  
#8 of 241 Old 08-06-2006, 01:48 PM
 
ikesmom's Avatar
 
Join Date: Oct 2005
Posts: 1,195
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
ikesmom is offline  
#9 of 241 Old 08-07-2006, 12:50 AM
 
Jewelie's Avatar
 
Join Date: Nov 2005
Posts: 260
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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
Jewelie is offline  
#10 of 241 Old 08-07-2006, 01:50 AM
 
rbear4's Avatar
 
Join Date: Jul 2006
Location: So Cal
Posts: 322
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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
rbear4 is offline  
#11 of 241 Old 08-07-2006, 03:20 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!
JBAmom is offline  
#12 of 241 Old 08-07-2006, 09:34 AM
 
gsdmama's Avatar
 
Join Date: Jan 2006
Location: North Carolina
Posts: 27
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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?
gsdmama is offline  
#13 of 241 Old 08-09-2006, 01:07 AM
 
Jewelie's Avatar
 
Join Date: Nov 2005
Posts: 260
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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 is offline  
#14 of 241 Old 08-09-2006, 01:31 AM
 
Jewelie's Avatar
 
Join Date: Nov 2005
Posts: 260
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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....
Jewelie is offline  
#15 of 241 Old 08-09-2006, 01:55 AM
 
AllyRae's Avatar
 
Join Date: Dec 2003
Location: Ohio
Posts: 6,391
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

~Brandon Michael (11/23/03), Jocelyn Lily Nữ (2/4/07, adopted 5/28/07 from Vietnam), Amelia Rylie (1/14/09), & Ryland Josef William (9/7/05-9/7/05 @ 41 wks). 
AllyRae is offline  
#16 of 241 Old 08-09-2006, 04:29 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
JBAmom is offline  
#17 of 241 Old 08-09-2006, 08:42 AM
 
judejude's Avatar
 
Join Date: Jul 2005
Location: Bloomington, MN
Posts: 1,421
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Me : , husband ,daughter Raven : 10-28-95 :
judejude is offline  
#18 of 241 Old 08-09-2006, 08:54 AM
 
judejude's Avatar
 
Join Date: Jul 2005
Location: Bloomington, MN
Posts: 1,421
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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).

Me : , husband ,daughter Raven : 10-28-95 :
judejude is offline  
#19 of 241 Old 08-09-2006, 01:23 PM
 
ikesmom's Avatar
 
Join Date: Oct 2005
Posts: 1,195
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
ikesmom is offline  
#20 of 241 Old 08-09-2006, 02:00 PM
 
Finch's Avatar
 
Join Date: Mar 2005
Location: NC!
Posts: 9,527
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
Finch is offline  
#21 of 241 Old 08-09-2006, 03:25 PM
 
Megamama's Avatar
 
Join Date: Jan 2004
Location: Gainesville, FL
Posts: 1,439
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Listening in...we're sure that our newly diagnosed ASD son has SI issues..almost everyone on the spectrum does, and he does a lot of stimming (especially verbal and hand flaps). We just started ST and the therapist can see the verbal stims and is goign to do some SI work with him next session.

I need to read some of these books. I think his food issues were all sensory..I think he can possibly smell stuff coming and won't taste things because of that unless he recognizes them. Not sure. I am lookign forward to seeing an OT soon, through the schools or hopefully if we get some moeny, privately. He really really needs it. We're also still not close to toilet learning and he will be 4 in november...though on the GF/CF he now has solid movements again for the first time in years and he is actually AWARE of them now I have hope.
Megamama is offline  
#22 of 241 Old 08-09-2006, 03:46 PM
 
Hawklin's Avatar
 
Join Date: Aug 2005
Location: Ocean State!
Posts: 74
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Wow! I'm mother to 7 and my youngest child, Will, current age 19 months was diagnosed at the beginning of this year with SID. He is currently in Early Intervention and he has weekly sessions with a nutritionist and OT. Our OT is awesome. Anyway, I struggle with this as it's so hard to understand for me. I've never heard of it until DS and I got the Out of Sync Child and found because DS was so young that most of it didn't apply....though, now, I see things developing as he gets older which I know are all part of SID.

I hope you'll allow me to join you...I'm always looking for people who have been there done that and have things to share on this as I find myself struggling with it a lot! Knowledge is power!


Linda
Hawklin is offline  
#23 of 241 Old 08-09-2006, 07:08 PM
 
Finch's Avatar
 
Join Date: Mar 2005
Location: NC!
Posts: 9,527
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Linda,

Try reading the Raising A Sensory Smart Child book. I too had my ds diagnosed young and found that the Out of Sync books were very hard for me to relate to because ds was so young.
Finch is offline  
#24 of 241 Old 08-09-2006, 07:09 PM
 
~*SugarMama*~'s Avatar
 
Join Date: Jul 2005
Location: Sterling Heights, MI
Posts: 532
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I am reading/joining even though we don't have an official dx yet. We are working towards getting an evaluation though but in my gut, I know that part of DD's trouble is SID.

I posted about her in here once before, but here goes again. DD will be four in just a few short weeks but still refuses to wear clothes. She will deal with wearing panties though because she is partially modest. But for actual clothes, they come off as soon as they go on. They are either too hot, too tight, too itchy, too something. But she will often go the complete opposite way too....being overly affectionate (smashing her face into yours to kiss, squeezing instead of hugging, hitting instead of patting)

She had severe reflux as an infant and still deals with it as a toddler. Anything that is too squishy or too stringy will make her gag still. She will not touch red meat because it gags her. She will not eat most foods that require a lot of chewing. If left to her own, she would live on steamed veggies, very soft fruit and noodles/soup.

Taking her to a store is a nightmare because she gets overwhelmed by the sights and sounds and smells all assaulting her at the same time. While out, we often find one of us taking her off somewhere that is quiet and spending most of the time there either rocking her or reading to her. But on the flip side to that...at home, she prefers constant noise and visual stimulation. Her favorite toys are usually bright and noisy and music (if played at home) will always calm her. Try that trick in the store though and you are looking at a sure fire way to meltdown.

Not sure what else fits in with SID and what might be being contributed by other factors but I would very much like to remain here reading.
~*SugarMama*~ is offline  
#25 of 241 Old 08-09-2006, 11:40 PM
 
judejude's Avatar
 
Join Date: Jul 2005
Location: Bloomington, MN
Posts: 1,421
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by ~*SugarMama*~
But she will often go the complete opposite way too....being overly affectionate (smashing her face into yours to kiss, squeezing instead of hugging, hitting instead of patting)

She will not eat most foods that require a lot of chewing. If left to her own, she would live on steamed veggies, very soft fruit and noodles/soup.
Oh geez, this is dd, but she is 10 and still does the hitting instead of patting and having to discuss with her how hard is too hard seems never ending. Also, when she is petting your arm and ends up pinching you instead---that drives me nuts. A lot of times she acts as shocked as you are that she did it too.

DD won't eat foods that require much chewing either...but I have to tell you, YOU ARE SOOOO LUCKY! The fact that your kid would live on steamed veggies and soft fruit??? Holy buckets!!! The closest my kid comes to veggies is mashed potatoes and there is no such thing as fruit...although she goes through phases where she will eat grapes. Thank goodness she is old enough to peel her own grapes now. I refuse to do it anymore.
DD lives on starch starch and more starch...oh, ya and throw some butter on everything. I am just grateful that she will eat whole wheat and spelt pasta half the time.
Oh how I wish she would eat any veggies or fruit

Me : , husband ,daughter Raven : 10-28-95 :
judejude is offline  
#26 of 241 Old 08-10-2006, 12:02 AM
 
Jewelie's Avatar
 
Join Date: Nov 2005
Posts: 260
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
ok, so, God it kills me to ask this but be honest. My oldest daughter had 4 catheterizations when she was little- 1st at 3 mos when she had a high fever to dx UTI, then a few wks later when she was dx with vesicourital reflux (urine refluxing from bladder into kidney which can lead to permanent kidney damage if left untreated) through a horrible test called the VCUG, then to rule out a UTI later, then the last one at 18 mos when we did the repeat VCUG (clear finally) (this time she was sedated). Could those invasive tests have caused or made her SID worse?

thanks,
julie
Jewelie is offline  
#27 of 241 Old 08-10-2006, 01:31 AM
 
Jewelie's Avatar
 
Join Date: Nov 2005
Posts: 260
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I know I'm interrupting myself but now that I finally have a support system I am thinking of many questions so here goes:

what do you say to the doubters in your life (friends, family?) who think this is either the latest popular dx or the OT's are just taking your money, or you are neurotic and just need to set some limits for that brat already? I struggle with educating the people in my life b/c I struggle so much to understand this myself. And I was never sure if the OT was actually helping or not. Any quick and dirty page of info that would make it real to them? Delacroix, I liked the one you posted on the special needs forum...

I think part of what has me confused and murky/slow on the uptake with my second is that she also seems to have SID but with almost opposite manifestations. Oldest daughter looked into my eyes at birth, was an easy baby who actually preferred to be put down to sleep (I would try to hold her as she drifted off and she would try to roll away and cry if I didn't get it). spit up but no reflux. Took to solids like someone crazed. almost weaned herself at about 9mos b/c she was so wild for the pureed baby food. But choked (turned blue, no sound) on most finger food way past the pt most of her peers were off pureed baby food. Inspite of all the baby food and nursing, she fell almost off the wt growth chart- from 50th to 2nd percentile by around 12 mos. Other symptoms appeared later and now we have a 4.5 yr old who has potty accidents daily (unless I resort to threatening ea few hrs to put pull-ups on her if she doesn't go), and multiple ever-changing bizarre phobias. She's also very funny and full of life and loves her friends, has compassion (I now see), is an accomplished artist and storyweaver.

younger dd avoided eye contact (I mean REALLY avoided) for wks and wks after birth, cried alot, esp in car, terrible reflux, at 16 mos STILL only naps in arms, kozy carrier, or carseat, (ok, sometimes for a few minutes in bean bag chair). But if I put her down flat on the bed, she wakes up screaming. And WHENEVER she wakes up, its almost always screaming. (dh found another place to sleep at least a year ago).

We get longer stretches at night w/o my holding her but even at night most of the time, her head is on my shoulder and my arm is around her. I don't mind most of the time - its kind of sweet, esp since oldest dd can be so resistant to affection. But I'm just now realizing this too has something to do with SID. And this child won't eat anything creamy. But chokes on anything not creamy. So what's left? potato chips made from potato flour that dissolve in her mouth. And a few other things like bread. (feeding eval Tues).

Both took easily to nursing, thank you God. Both were full term born naturally, no complications. We've done selective vax's for both. I refused to do the VCUG with youngest under heavy medical pressure that she could get very sick as a newborn if she got a UTI- gamble paid off. No UTI's so far.

I wonder is dd's anxiety is directly related to SID or exacerbated by all the medical testing she's had.... I keep trying to figure out what the common denominator is: our black ceiling fan, doorknobs, nozels, soap dispensers, jets (like bathtub or pool).... She asks us to cover them up and if I can't or won't, she can become pretty hysterical.

must go to bed....

julie
Jewelie is offline  
#28 of 241 Old 08-11-2006, 05:45 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Julie, I have never heard of an experience like the medical procedures you described actually causing SID. I have understood SID to be either a genetic brain difference or related to some kind of insult to the brain whether it is impact, nutritional, chemical, etc. We were in a car accident a week before my 2nd son was born, he of course seemed fine at the time, but I wonder if that caused it with him.
Also, it is sooo hard to explain SID to family or even teachers because it is relatively brand new in terms of medical understanding. The field of study that relates SID to behavior I think is only about 10 years old. People are skeptical of new information, especially with a problem that is not visible. I have barely introduced my own parents to our sons' issues because I feel sure they will think we are looking for an explanation for their behavior; they believe we just need to be more firm with them.
SID symptoms looks very different in different people because there are so many variables involved. There are 7 senses to consider, the reaction can either be "need more", "need less" or it can vary too. Both of my kids are tactile sensitive, but one of them loves to get dirty yet can't stand the feeling of his clothes rubbing against his skin. The other one hates to get his hands messy and is very reluctant to hug anyone but me and DH, but never complains about ill-fitting socks or tags. This is all tactile oversensitivity, but manifesting in these different ways. So the fact that your kids' issues look different from each other I think would be expected.
You really do have to be a detective sometimes to find out what the trigger is. Once our son was freaking out insisting that his door needed to be closed. We finally figured out it had nothing to do with doors, he was afraid he would hear our alarm clock downstairs, so he shut the doors so he wouldn't hear it. I've been gathering from other moms that anxiety is part of SID. Has anyone read anything about that?
JBAmom is offline  
#29 of 241 Old 08-11-2006, 05:48 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Sugarmama, are you getting your evaluation from an O.T.? Sure sounds like there are some SI issues.
JBAmom is offline  
#30 of 241 Old 08-11-2006, 05:56 AM - Thread Starter
 
JBAmom's Avatar
 
Join Date: Jun 2006
Posts: 160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
One more thing, I just wanted to share this discovery that might be obvious to everyone else. The other day the kids were doing well at the park so we made a last minute decision to go to the beach that was right there. As soon as we got there my son started to fall apart. He got angry, aggressive, unreasonable, and as we were leaving he went on about how he hates sand, hates the beach, etc. I happened to have some nuts in the car, so he ate them, and within 10 minutes he was as happy and pleasant as could be. We saw the O.T. later that day, who explained that he is not hypoglycemic, but that because of his poor regulation (part of SID), he doesn't know he is hungry, he just knows that he feels bad, and it heightens all of his sensitivities - thus hated the sand at that time, might love it when he is well fed and rested.
JBAmom is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off