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Struggling with diagnosis

by Rebecca
(Ireland)

Hi

My 3.5 year old daughter ticks nearly all the boxes under the Social, Emotional, Play, And Self-Regulation Dysfunction heading.

We are in Ireland, and I guess professionals here have much less experience of sensory processing than in the US.

Our OT has 'tested' our daughter's vestibular functioning and tells us that since all is fine with that she cannot have a sensory problem. She told us that regulation difficulties would be a SYMPTOM of vestibular problems, which are at the root of sensory processing.

Can anyone comment on this? From what I have read this doesn't seem to be correct, but I need to make sure I am right before trying to get a second opinion.

The symptoms she has include: no sense of smell, not feeling thirsty, toileting problems (not feeling the need to go), and she does not react to pain or temperature as much as other children do. She has severe mood swings and can get upset over minor things to the point of not being able to stop crying. She takes herself to bed when upset and asks for the curtains to be drawn and black out blinds put up. She has good days and bad days, and very bad days. All of her symptoms are much worse when there is a change to routine, when she is tired, sick, or when I notice she hasn't had a drink or eaten for a while. As a baby she was always unsettled, screamed when getting dressed, had disturbed sleep, and never played with any toys. She has strong preferences regarding food textures. A big concern at the moment is the amount of time she spends being withdrawn, seemingly depressed, saying she is 'so tired' and refusing to engage in activities. Transition between activities during the day is a huge problem area, as is getting her to leave the house. She can also have very active days, when she does not stop talking and engages in highly creative imaginative play in her own world. She prefers to play with younger or older children, and although she is usually very sociable and confident, she is not good in group situations (hides under the table). She often avoids eye contact and has days when she is very distracted, fidgety, won't pay attention or concentrate.

Thank you so much for reading. We are desperate to get some help.

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Struggling with diagnosis

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Mar 01, 2010
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non-believers
by: Anonymous

Hi

I'm in Dundalk, Co Louth and my 5 year old son has just been diagnosed with SPD. There is a great place in Dundalk that gives friendly, professional help and advise to parents of children with SPD. I am so grateful to them i always knew he was different from his brothers but no one would believe me. Everyone said he was just been bold. Even now after diagnoses they still don't believe. A mother knows her child.

Jan 30, 2010
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same
by: Anonymous

sounds exactly like my 4 1/2 year old daughter who does have SPD. Keep pursuing diagnosis and ot and a neurologists suggestions. Remember you are your daughter's advocate!

Jan 28, 2010
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Hello
by: Mary

I'm in the United States and my son had a lot of the the same signs. He's 3 and I can think back to the age 13 months when he started showing signs of Sensory Integration.

I found the following website and it has help a lot. http://www.spdfoundation.net/ Also read The out-of-Sync Child by Carol Stock Kranowitz.

He's currently going to OT and Speech therapy. PT is on hold for now they think the issues he has is tied back to Sensory.

Don't give up! I've been fighting for the past year to find out what was wrong with my son. Our Early Childhood program keep telling me there was nothing wrong with him and that he was just speech delayed. I called his doctor and demanded a full work up. I had him evaluated with a OT;PT and Speech terapist.

Jan 28, 2010
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Struggling with Diagnosis
by: Anonymous

Hello,

I am from Ireland too. My daughter is 7 now. She had some systoms that your child have. She went to OT for assessment. she said my daughter have Dyspraxia/ Developmental coordination Disorder. Maybe you should find a good OT to give her full assessment to see if she have other problem eg Austim, SPD, Etc.....They can go through them all during the assessment. They will find something. If they find something more, they may refers her to other eg psychologist. I am not sure. But if i were you i search for a good OT before it too late.

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