OT--help me talk to my Pediatrician please! update#11!

[LMC]

My DS (11) is a VERY selective eater and has HUGE sensory issues and I just can't let it bother me anymore. He only eats one certain type of popcorn chicken; not kidding, one brand, anything else and he won't eat it. He also eats pizza, tacos, plain cheeseburgers, one style of macncheese (no boxed stuff) and ritz crackers. That's about it. Ocassionally he may have something else but rarely. He gets plenty as his weight is good maybe a little high. He gags and vomits at the drop of a hat and always has. He can see a glass of milk or a bag of doritos and loose it. I just put him in public school in January and he lost 15 pounds in 6 weeks (he needed to anyway) but he was not eating most days as he couldn't stand being in the lunch room. They were SUPPOSE to let him eat in another location away from the sights and smells but stopped after about the 1st week so it is now in his IEP that he must eat everyday (I send the same lunch every day) even if it means he goes to another room. I know how frustrating this can be. There is a sensory therapy that you can get now that uses a moving chair, music, and pink lights. I would have to research to get the exact name but I spoke with a woman whose son was like this and she went to Atlanta last year for the therapy and said it worked wonders on her son. He couldn't look at condiments before the therapy and after, he was eating them on his foods! Get the book and read it but your best bet would probably be to see a neurologist.

 

[hookedup]

Jodi,

I was looking at a site for something for my ds and I saw this book and thought of you. I personally don't know anything about it - my ds does not have that type of sensory issues (his are motor related) but in case you are interested...

Just Take A Bite
Just Take A Bite Easy, Effective Answers to Food Aversions and Eating Challenges by Lori Ernsperger, Ph.D. and Tania Stegen-Hanson, OTR/L, (Foreword by Temple Grandin).
Do you know a child who will only eat a few types of food? Here's help for the child with food aversions and limited food choices, whether the reluctance to eat is due to sensitivity (to taste, texture, or smell), to a fear of trying new foods, to delays in oral-motor development, or any combination of the above. This book shows us how to address eating issues in a kind and caring manner (no coersion, pleading or force-feeding) using games and activities as well as a structured treatment plan. Paperback. 229 pages.

I found this book on the site: http://www.sensorycomfort.com

 

[SueM in MN]

Just Take A Bite
Just Take A Bite Easy, Effective Answers to Food Aversions and Eating Challenges by Lori Ernsperger, Ph.D. and Tania Stegen-Hanson, OTR/L, (Foreword by Temple Grandin).

I saw Temple Grandin's name and wanted to add a bit about her. She is a designer (very successful) humane ways of handling cattle for slaughterhouses (sort of a contradiction of ideas) - this is a link to her page about herself, not her work . Anyway, she is a high functioning person with autism, who used her different way of viewing the world to think about how animals react to things humans do to them. Her parents were told that she was autistic and that they should just institutional her. Obviously, they didn't do that and she ended up with a PhD and was able to use her unique skills as a person with autism.
She has also written several books about what it is like to be autistic. I have read 2 of her books, Thinking in Pictures and Emergence, Labeled Autistic. They are fascinating and I'd recommend them to anyone with a child on the autism spectum. I have to warn you before you read them that at times she goes on and on and on with detail upon detail about something that is obviously veryinteresting to her, but not to most of the readers. If you live with someone with autism, OCD or any similar condition, that should not be news to you. It's a good illustration of getting caught in an idea. I have to praise her editor for not editing out the repetitive information. I found it to a fascinating glimpse into why people with those conditions do some of the things they do.

I have not read the newest book, Unwritten Rules of Social Relationships, that she wrote with Sean Barron, but I have seen him on TV and he is quite interesting too. He is autistic and he and his mom wrote a book about autism.

 

[JoBird]

hookedup,
Thanks for the link! I am going to try to get that book, I think it might help me tremendously.
I am feeling stronger today...I think my mind is adjusting to this and I am ready to face it head on!

I am still waiting to hear from the OT, but I called my insurance and they said they cover 90% of OT visits, up to 24 a year. Is this anything like what any of you have experienced? I know that once a diagnosis comes things may change. I am willing to pay any amount of money to get her help.

When I called the insurance I asked if I needed a referral and she said, very condescendingly, "Well what makes YOU so sure that she needs an OT"? I wanted to scream! I just said, "many hours of research and living with my child, that was enough." BTW, her ped. nurse called yesterday and said they would give any referral I needed, of course. DUH! Insurance companies are such pains to deal with!
Okay, on with the day! Thanks again, everyone! Ya'll are so special to me!

 

[SueM in MN]

Even though you are going ahead with the private OT, I'd suggest you should still contact the school district. They can do an evaluation without a doctor referral and the eval would look at more than just the feeding issues. If she qualifies, the services would be free of charge thru the school district.

 

[belle&beast]

Even though you are going ahead with the private OT, I'd suggest you should still contact the school district. They can do an evaluation without a doctor referral and the eval would look at more than just the feeding issues. If she qualifies, the services would be free of charge thru the school district.

Excellent point! And you can do both if you are able to afford the private therapist.

 

[riu girl]

Regarding whehter or not kids overcome/improve their sensory issues, in my DDs case the answer is YES! As an infant/toddler, DD was diagnosed with both bulimia (she would eat only a few different types of foods, shake her hands so bad since eating was so hard for her sensory wise, then vomit as soon as she had finished eating), and infantile aneroxia (she just would NOT eat since it was so hard on her sensory wise). She also had other senory issues and was diagnosed with SID. She was very thin and looked ill all the time.

She was in the hospital so much due to be dehydrated so much and the doctors talked all the time about putting her on a feeding tube since she was classed as failure to thrive for so long.

I was at the end of my rope and finally one of the doctors reccommended putting her on cyprohyptadine (2mg twice a day). This is an anti-histamine and one of the side effects is that is makes kids HUNGRY!!! It seems like with this drug, the kids(for DD anyway) become so hungry that they seem to work out some of the sensory eating stuff since the food is so important to them. Well, three-four weeks after starting this med, DD actually asked for food (First time in her life) and had gained about one pound per week. The doctor wanted her to stay on it for 3 months but I took her off in less then a month since she was gaining weight and became interested in food. This was all about 5-6 years ago. She has not stopped eating/gaining weight since. She is now 9 and a happy, healthy robust 80+ pounds!!! Developmentally things really took off since she started eating and she is now only classed as ADHD (and an anxiety disorder which hasn't been diagnosed but I see it) and is an A/B student at school.

I bet if assessed for SID now, she would show up negative since all of the other sensory stuff has diminshed so much.

So just hang in there and get all the assistance/therapy that you can. At one point we had speech, OT, PT, nurse once a week to the house, two different behavioural thereapists, psych, etc etc. Whatever it takes, therapy and your increased knowledge will help. All of the books you are planning on purchasing alre great, especially the Out of Sync one. Its my fav.

Good luck and hang in there.

 

[BlondeAlligator]

JoBird,

I am sooo with you about the frustration of dealing with insurance companies! When we looked into private speech therapy for my DD, we were told by the insurance company that specch therapy for Autism would not be covered because there was nothing physiologically wrong with her to cause the impedement. WHAT?? It's a known fact that speech is one of the biggest challenges for kids with Autism, and without speech therapy, how else are we supposed to help that problem! Well, our rehab place is being wonderful...just yesterday I spoke with them and they said that they went ahead & processed the claim just to see...and they got the claim approved! They understand that insurance companies can be difficult & do whatever they can to help out the parents in processing their claims. The lady who handles the beilling is so nice & helpful...quite a change from our insurance company.

Just hang in there & keep us posted. My thoughts are with you & I'm here is you need to chat!

Have a great weekend!

Allison