We need a diagnoses for our 3 year old could this be it?

by Catherine
(Calgary, Alberta, Canada)

we have a 3 year old daughter (almost 4) and from the day she was born we have had problems with her......she is our 2nd child our first born is awesome no problems at all.....anyways the first year and a half Kya screamed (she never had a new born cry it was a blood curdling scream!) she would scream 10-12 hours solid with no break, she wouldn't take more than 2-5ml of formula at a time for the first 10 months Dr's pushed us away saying colic (I was in emergency with her 2-4 times a week) when Kya was 2 they put her on prevacid for reflux and we started seeing a GI specialist from there we have gone to a metabolics specialist an allergy specialist

....early on this year Kya started having absence seizures so we went for yet more testing and to see yet more specialists.....the cardiologist discharged us as did the neurologist putting these seizures down to exhaustion cause of lack of sleep, we go back in nov to see the nose and throat specialist and we have just done an overnight PSG test at the sleep clinic last week.....I've done a ton of internet research over the last...almost 4 years and came across sensory processing disorders tonight.......
The symptoms we have for Kya are....

she doesn't sleep through the night.....without melatonin shes up til 11pm or midnight then she falls asleep but wakes up through the night.....with the melatonin shes asleep quickly but seems to wake up more through the night........she doesn't nap in the day time!

she doesn't eat well......she choked on everything including her own spit up til recently.....but even now she tends to chew her food then spit it out! (she does tend to eat dirt in the yard!)we have taken milk away from from her 2 weeks ago as we were finding she was substituting milk for food and was up at night for feeds (milk!) she weights 47lbs but since the milk cut out she has lost almost 2lbs!

shes easily irritated.......we think maybe from being tired?!

shes so clumsy and uncoordinated again we think maybe due to being tired?!

she can't stand to be dirty....she has to wash her hands throughout meals or during painting etc etc.......sometimes she has had up to 5 showers in one day!!!

she refuses to wear anything other than pj's .......if we go out she will only wear leggings.....anything stretchy.....and that a fight!

and I'm sure I've missed out a few things......

is this something my daughter may have?........I would love to have some answers as well as a little support as our journey with Kya has been exhausting and we are desperate for some kind of diagnoses!

Thank you for reading :)

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Nov 08, 2011
by: Anonymous

I just had to comment on your note about melatonin and that she woke up during the night. We saw a sleep specialist for our 3 year old son because he would never tire and had problems falling asleep. He prescribed 3 CCs of melatonin which we used the first night. He fell asleep hard right away but woke up SEVERAL times throughout the night. I slowly decreased the dose to just a half a CC and that works the best. A side effect of melatonin is vivid dreams, which would most likely cause them to wake up. Try a small dose and see if that helps. Good luck!

Sep 26, 2011
Understand and then you can help
by: SWW

It's overwhelming! As a parent, you are emotional and in completely foreign territory when dealing with an SPD child. But your child goes through every day with it being too loud, too bright, scratchy, dirty, scary, off-balance and even more painful than almost everyone else they know. There are so many areas to this disorder - visual, tactile, auditory, balance/movement, muscular development - fine and gross.

Let your girl drink her milk - Add some carnation breakfast to it and make it whole milk. Then find a multi-vitamin she will eat. She will find foods she can tolerate. My son existed on milk for so long but he's added new foods - slowly. He can't stand the textures. And if it smells too strong - he has to leave the room. I would struggle to get him to eat and then he would throw it all back up. Let her drink milk and encourage other foods. It's not a battle you can win until she can tolerate it.

All the things you describe point to SPD or to another spectrum disorder. The best thing to do is to get an evaluation or take her straight to an Occupational Therapist.

Finally, the experts can help you understand but YOU need to educate yourself and be THE expert on your child. The therapists will give you a list of overwhelming things to work on and treat. Work with them but also follow your instinct on what is best for your child.

My son is almost 10 - diagnosed at 4 1/2- and he has been desensitized/outgrown many things. He has the tools to cope and he's still learning!

Good luck to you and your daughter

Sep 07, 2011
by: Catherine

she is social although is shy around new people, she does echo what she hears and we find Kya tends to use her words incorrectly sometimes.....for example.....she knows itchy and sore but when she has a meltdown over her eyes being "itchy or sore" sometimes shes will say "my eyes are boring" which makes no sense to us but other times she will say "my eyes are itchy/sore" when she hears words she will mispronounce them when she echos back to us......she also has a different accent than the rest of us.....she really twangs her A's!

We are waiting for our ref to go through to see the developmental behavior ped specialist.....not sure how long it will be til we see him though!

Sep 07, 2011
3 Yr old...
by: Anonymous

we had a similar story with our family. 1st born a gem slept everywhere and all her naps. Was a real pleasure...but my son another story from day one he was hard to burp after feedings and was colicky...I tried every formula there was at the time. Looking back I think he had anxiety. And at the 3 month time he (and my daughter) had those end of the day screams so loud and strident it's enough to make anyone loose their mind. at 18 months we moved and then his full blown autism came out! He was no longer interacting with us and lost speech. my son never really babbled that much either. I saw many professionals in France because that's where we were at the time....and yet they said no autism just tendencies....

He can't stand to have anything wet or sticky on his hands either....I think you need to have her seen by a developmental ped. Is she social? Appropriately with peers? Does she talks in phrases? or does she echo what you say? You know there are all levels of autism so she could be on the high end....like aspergers. Does she have tantrums easily? seizures I don't think are solely due to lack of sleep. I just saw a baby with a seizure disorder and he clearly is having them. My son would cry but not want to go to sleep almost as if he was anxious and unable to settle down.

This is not how my son was crying....but clinging to me and crying more so.

This is more my son.

Looking back it was the formula that made him this way if he were on soy formula it would have been better! Had I known and the doctors were insightful and I lived in France too!

Google autism symptoms in 3 yr old and compare...now you must know not all autistics are alike! If not the developmental ped can steer you towards another professional...i.e. child psychologist...or go to your local Intermediate Unit and askl for and complete evaluation! Make sure she is on age level and see what they come up with!

Good Luck,


Sep 07, 2011
help for kya
by: Anonymous

I am sad for your story, I hope someone can help. I can give you a humble suggestion: ask for a medical evaluation for ASD. wishes.

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