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Always felt alone...
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Heather Offline
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Posts: 117
Joined: Apr 2012
#1
Always felt alone...

Hello, my name is Heather. I'm happily married and have three amazing girls. Two out of my three children have been diagnosed with SPD. My 4 year old is the first of the two to receive this diagnosis. When she was 18 months, she wasn't talking, walking, and was always stuffing food in her mouth and choking. We got a referral for OT after numerous test. She received speech and physical therapy as well since that age. Now you would never suspect her having SPD. She still has her little issues such as sounds, textures, foods, and under sensitivity but nothing that she can't tolerate.

My youngest however, has a severe case. She is 23 months. Her OT has said that is is borderline debilitating. She has constant meltdowns due to many stressors. She has never slept through the night ever. She hates baths and her nails being trimmed. Lights bother her and new people causes her to shut down. She was also deemed hypersensitive and sensory seeking. She always has bruises on her from her repetitive rocking and head banging. The list goes on. She also receives speech and physical therapy in conjunction with OT.

I have always felt very alone. Most people outside of my household seem to look at my girls like they are mutants or claim my husband and I are making it up. I am just so relieved to know that others can relate to what I am going through.
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Marci Offline
Regular

Posts: 88
Joined: Jul 2011
#2
RE: Always felt alone...

(04-06-2012, 05:33 PM)heatherv112506 Wrote: My youngest however, has a severe case. She is 23 months. Her OT has said that is is borderline debilitating. She has constant meltdowns due to many stressors. She has never slept through the night ever. She hates baths and her nails being trimmed. Lights bother her and new people causes her to shut down. She was also deemed hypersensitive and sensory seeking. She always has bruises on her from her repetitive rocking and head banging. The list goes on. She also receives speech and physical therapy in conjunction with OT.
Welcome, Heather, and you are not alone. Smile

Today here was a good day, yesterday was a horrible day - major SPD meltdown in my 12 yr old. We've reached the point where I can look back and find his "trigger" (and sometimes learn from it) and what made him ready to "trigger". Yesterday he didn't eat a good breakfast, which means the whole day is at risk, and unfortunately he hit a minor bump and because he was vulnerable, he melted down.

Have your SPD girls ever been tested for food allergies/intolerances? Had their vitamin/mineral levels checked? My son has celiac (gluten intolerance) and malabsorbs various nutrients. Working with his neurologist and gastroenterologist we've come up with a supplements regimen (specific high dose vitamins that he was very deficient of and Omega fatty acids) and that has made a major difference in his life.

I've learned the average pediatrician knows ZIP about using nutrition to improve a child's sensory problems, so if you do see a specialist (neuro or developmental) ask about using supplements to help your kids.
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Heather Offline
Site Moderator
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Posts: 117
Joined: Apr 2012
#3
RE: Always felt alone...

Both girls have been tested. My older girl had some out of wack results and it was determined she has Juvenile Rheumatoid Arthritis. She is going to see a rheumatologist in a few weeks. My youngest was checked and there was no allergies, but she hasn't been tested for intolerance's. My OT is trying to get the pediatrician to sign off on the referral. Luckily, even though their doctor knows zip about it, anything that they needs or is suggested by the therapist, she never questions, just signs off. With my older girl, she wasn't allergic to any major allergens, but it did showed there was an allergy to something, just not sure what. So she is going for a referral to an allergist. My older girl also vitamin deficiency anemia as well. But the baby, the most severe, has beautiful blood work levels... still a puzzle



(04-06-2012, 11:32 PM)Marci Wrote:
(04-06-2012, 05:33 PM)heatherv112506 Wrote: My youngest however, has a severe case. She is 23 months. Her OT has said that is is borderline debilitating. She has constant meltdowns due to many stressors. She has never slept through the night ever. She hates baths and her nails being trimmed. Lights bother her and new people causes her to shut down. She was also deemed hypersensitive and sensory seeking. She always has bruises on her from her repetitive rocking and head banging. The list goes on. She also receives speech and physical therapy in conjunction with OT.
Welcome, Heather, and you are not alone. Smile

Today here was a good day, yesterday was a horrible day - major SPD meltdown in my 12 yr old. We've reached the point where I can look back and find his "trigger" (and sometimes learn from it) and what made him ready to "trigger". Yesterday he didn't eat a good breakfast, which means the whole day is at risk, and unfortunately he hit a minor bump and because he was vulnerable, he melted down.

Have your SPD girls ever been tested for food allergies/intolerances? Had their vitamin/mineral levels checked? My son has celiac (gluten intolerance) and malabsorbs various nutrients. Working with his neurologist and gastroenterologist we've come up with a supplements regimen (specific high dose vitamins that he was very deficient of and Omega fatty acids) and that has made a major difference in his life.

I've learned the average pediatrician knows ZIP about using nutrition to improve a child's sensory problems, so if you do see a specialist (neuro or developmental) ask about using supplements to help your kids.
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