Tuesday, January 5, 2010

Our journey up to diagnosis

I could sit and write for hours about the symptoms of SPD, but I don't have enough time for that right now. So, I'm going to talk about the main one that eventually led to my son's diagnosis.

One of the most common symptoms is feeding difficulties/extreme pickiness. My journey into SPD started because of my son's pickiness. My son ate everything until around his 2nd birthday and then he stopped eating most foods almost overnight. He got to where he only wanted chicken nuggets, macaroni and cheese, some fruits, or peanut butter and jelly. I asked my pediatrician about it at his 2 year check up and she said it was just a "stage" that he was going through and to just wait it out. Well, that year it just got progressively worse. I asked again at his 3 year check up and she said it was a power struggle and not to make a big deal out of it. Through the year it got even worse. I brought it up again at his 4 year check up. She said that if he wouldn't eat what we were having to give him a peanut butter sandwich because he was eating almost no protein and she thought it was a good alternative.

It was to the point that if we tried to make him eat something, he would immediately vomit on his plate. That's always nice when you're trying to enjoy your dinner. Every meal time was a battle. Lots of gagging, vomiting, crying, arguing, pleading, bribing. We tried telling him he would have to sit at the table until he ate his food and he would sit for an hour until we gave up. We told him just to take one bite and he would gag and vomit. It was horrible! Nothing worked and I was just so angry! I mean, just eat it already!!!

I learned early on that there was no forcing him. He wasn't going to do it. He would go to bed hungry, I could take away things, send him to time out, it didn't matter. He just plain wasn't going to eat it.

I went to people for support but they thought I was just a weak mother that was somehow being manipulated by a 3 year old. I can't tell you how many times I heard, "If he's hungry enough he will eat" or "When I was young I either ate what Mom made or I starved" or "I can't believe you are going to make him something different". What would they rather I do? Let him starve himself to death?

It wasn't until his 5 year check up that I finally got somewhere. I actually told his pediatrician that I would not leave her office until she addressed the issue and gave me some sort of guidance. I was so tired of being told it would eventually get better, then watch it get worse day by day. She recommended that I take him to an Occupational Therapist for feeding therapy.

I gladly made an appointment with the OT, hopeful that they would have some answers for me. One of the first things they had me fill out was a sensory profile. I didn't understand what it was so I asked the receptionist to explain. She said that it was a checklist to determine his sensory integration issues. I discovered that it is almost NEVER just a food issue. The food/feeding issues are almost always associated with SPD.

I was shocked. I had never thought of him as having sensory issues. I knew that he didn't like to have his hands messy or do messy play. I knew that he flapped his hands when he was excited or upset. I knew that as a baby he had a hard time settling down to go to sleep. I knew he threw occasional tantrums for things that I thought were trivial. I knew he always complained about the water being too hot when it felt just fine to me. I knew he was jittery and had a hard time sitting still for long periods. I knew he liked to jump and climb and crash into things.

I never, ever, knew that those things could point to a bigger problem. I truly thought he just had a feeding issue. As we went through the evaluation with the OT it became apparent right away that he had SPD. I had never heard of it before but was extremely grateful to finally have a name to apply to the things we had been through for the last few years.

So, that's our story. There's a lot more to it than that, but it's overwhelming so I have to do it in stages.


  1. I'm so glad you decided to start a blog that helps educate people on a disorder that is unfamilar to so many people.

  2. Thank you so much for doing this blog. My daughter has some similar symptoms (although more mild-moderate). For 4 years we've got nowhere with the Peditrician. I will be requested a referral for OT to look into this more.

  3. Thanks, blue-eyed girls. That's my hope with this blog...that I can educate people about SPD and hopefully prevent the wasted years of "it's just a phase" that I got from my pediatrician.