Are there other conditions that seem to be frequently found in kids with SPD?

[LBW]

I can't remember but have you ever tried limiting his diet? Specifically wheat and dairy? I don't think it is well understood and certainly not all children who have these types of problems do have a positive response to gluten and milk proteins being removed from their diets, but it seems like many do. Of course artificial dyes, flavorings, etc. can also make matters worse.

Along with OT and weekly behavior therapy, changing my 7-year old's diet has resulted in some of the most improvement in his sensory/ADHD/behavior issues. I took him to a holistic healthcare provider last fall (a nurse practitioner) and she ordered a full panel of blood and urine screens. The results showed that he had major gluten sensitivities, lots of vitamin deficiencies, high levels of yeast, and worrisome levels of bad bacteria (c. difficile). We immediately removed gluten from his diet, treated the yeast, and began using probiotics and vitamin supplements. He's a much happier, more relaxed kid than he was a few months ago. His frustration tolerance has improved. A lot of his sensory issues are improved, too. He can handle noisy environments, for example, something he couldn't do a few months ago. The other amazing (to me!) result is that he's finally having regular BMs. I had taken him off Miralax last year b/c of concerns that it was contributing to his issues. His new diet + Caricol (a papaya supplement) are working better than the Miralax ever did!

There are a lot of resources out there about the connection between the gut (some now call it the "second brain") and behavior, autism, ADHD, allergies, asthma, etc. It's worth investigating if you feel like your current approaches aren't helping as much as they could.

[Indianamom2]

What types of testing are you planning to have done?

The problem with the SPD diagnosis is that it basically just describes a set of behaviors and symptoms. OT can help with these symptoms, but very often children diagnosed with SPD in early childhood have that as a placeholder until they are older and other diagnoses can be formally made. There are many conditions that have the SPD constellation of symptoms. Things like anxiety, ADHD, ODD, depression, autism, etc. These diagnoses may exist in combination as well. And sometimes just a kid who is not neurotypical, but is not necessarily diagnosable.

Sometimes it's a long process and there may not necessarily be a definitive answer. And diagnoses can be fluid and change. Older DD has many of the symptoms you describe. For many years she carried an anxiety diagnosis. As she has gotten older, I am seeing more ADHD symptoms. She's also begun to have a lot more depressive symptoms.

I think you're doing the right thing in getting more evaluations done and getting more information now that he is older.

Beth summed it up very well. DD's symptoms have always been fluid, but as she is getting older, it is getting somewhat easier to pin down. In our case, she has SPD (somewhat mild), MAJOR anxiety (being medicated now), and ADHD-inattentive type. But it took until she was 9 to get this sorted out, and I wouldn't be surprised at all if things shift a bit one way or the other as time goes on.

[niccig]

I agree with others to seek evaluation from others. They're could be other things like anxiety that is outside OT scope of practice. We're constantly told in grad school to be a SLP, that we can work within our scope of practice and are to refer on to others when see things outside our area of expertise that may need to be evaluated and treated.

[hillview]

I recommend a metro area neuropsych. both boys have had them for very different situations. DS1 recently dx with dyslexia. DS2 has some ADHD-impulse control, NLD. Both kids have some anxiety issues. The report (like 50 pages) is super helpful in terms of sorting out what to do. DS2's melt downs have gotten a LOT better once we knew more of the situation.

[gatorsmom]

Along with OT and weekly behavior therapy, changing my 7-year old's diet has resulted in some of the most improvement in his sensory/ADHD/behavior issues. I took him to a holistic healthcare provider last fall (a nurse practitioner) and she ordered a full panel of blood and urine screens. The results showed that he had major gluten sensitivities, lots of vitamin deficiencies, high levels of yeast, and worrisome levels of bad bacteria (c. difficile). We immediately removed gluten from his diet, treated the yeast, and began using probiotics and vitamin supplements. He's a much happier, more relaxed kid than he was a few months ago. His frustration tolerance has improved. A lot of his sensory issues are improved, too. He can handle noisy environments, for example, something he couldn't do a few months ago. The other amazing (to me!) result is that he's finally having regular BMs. I had taken him off Miralax last year b/c of concerns that it was contributing to his issues. His new diet + Caricol (a papaya supplement) are working better than the Miralax ever did!

There are a lot of resources out there about the connection between the gut (some now call it the "second brain") and behavior, autism, ADHD, allergies, asthma, etc. It's worth investigating if you feel like your current approaches aren't helping as much as they could.

This sounds eerily familiar. The intolerance to noise, the gut issues, excitement bout regular bowel movement, etc. all major issues we are dealing with on a daily basis.

I recommend a metro area neuropsych. both boys have had them for very different situations. DS1 recently dx with dyslexia. DS2 has some ADHD-impulse control, NLD. Both kids have some anxiety issues. The report (like 50 pages) is super helpful in terms of sorting out what to do. DS2's melt downs have gotten a LOT better once we knew more of the situation.

You all have decided me. I am going to call our previous pediatrician (in metro area) for recommendations on how tonstart this process. Then Greenbean and I will take a little trip there and getting testing done. The previous ped's practice did rotations at the Children's Hospital there so i think she might be a good place to start (unless you guys think there is a better way to go about this??).

Thanks again, everyone!

[hillview]

FWIW I got my recommendation from a private school (our school) special ed teacher. Might be worth calling a few schools in the high rent district too. ALSO I found some ADHD boards (well list serves really) and they had some good suggestions too (same one I ended up at).

[gatorsmom]

Along with OT and weekly behavior therapy, changing my 7-year old's diet has resulted in some of the most improvement in his sensory/ADHD/behavior issues. I took him to a holistic healthcare provider last fall (a nurse practitioner) and she ordered a full panel of blood and urine screens.

.

This I can get working on with our current ped. When you say a "full panel of blood and urine screens" what specifically should I ask him to look for? Our current ped is not holistic AT ALL. However, he is very well-read and if I tell him what specifically we want to test for and why, I think we will get those tests. But I don't imagine we will get anything we don't ask for.

[HannaAddict]

I second asking who the respected people are from the higher end private schools. Here there is a definite difference in providers and private school parents are a good source for who is good and who is not. A great connected OT could provide a name too, but if your OT hasn't suggested this, I wouldn't really rely on her for a rec. Hope you find some answers. I would explore this before doing blood work.

[mikeys_mom]

I agree with all the PP's about starting with a neuropsych evaluation. Over the years, DS had been evaluated by various OT's and early intervention teams at the request of the school and different teachers. They all tried to do what they could and he did various therapy sessions but the end result was always that in the sessions he seemed fine and was discharged. We were told several times that he is for sure not on the autism spectrum because he is so assertive and talkative. At home, to us he was just our quirky kid and we were able to accommodate his needs and keep him away from situations that we knew would end badly or prepare him adequately when we knew there could be an issue.

At around age 7, the school issues were escalating and it became clear that we needed more extensive testing. We did a psycho-ed evaluation and the psychologist even noted in his report that he works with ASD kids and DS is in his opinion not on the autism spectrum. He was concerned about his tics and advised us to get a consult with a neurologist. We had to go through our family Dr for the neurology consult and she suggested that we consult with a psychiatrist as well just to cover our bases. Psychiatrist met with us, and after the initial consult which was almost 2 hours long, decided that "just to cover the bases", we should meet with a developmental ped to administer the ADOS (autism) test. Long story short, after a long process, we ended up with an ASD diagnosis. Dev ped was amazingly thorough and considered lots of factors, not just the ADOS test results. She told us, that his was not a diagnosis that was easy to detect and some of his issues are so subtle that he can fool Dr's and therapists into thinking that he is just quirky. In addition, she said that had he been evaluated even by her a couple of years earlier, she may not have given the diagnosis. It's typically when certain behaviours are no longer age appropriate that you can get a formal diagnosis.

I'm not saying at all that your DS has autism, just that it is very possible he does have something other than SPD but that a diagnosis won't happen until he is a bit older. Sounds like now would be a good time to start the testing process as IME, it can take a while to get everything sorted out. Took us about a year from the time I initiated the evaluation process until we got a diagnosis. Some of these specialists have a long waitlist.

[LBW]

Took us about a year from the time I initiated the evaluation process until we got a diagnosis. Some of these specialists have a long waitlist.

This has been my experience. We've been waiting since late spring 2013 for our intial appt with the developmental peds/neuropsych group at our local hospital. It's coming up in a couple of weeks, thankfully, but it's been a long road without a lot of answers. I was able to take him to a peds neurologist about a year ago for an initial eval. We made the appt b/c the doctor was the only one locally with appts available and I felt like were were in a crisis situation. I know now why he had availability. He was truly awful to deal with. In hindsight, I should have just pursued an appt at the best group (the hospital group) right away. It still would have been a long wait, but we probably would have had the appt 3-4 months ago.

We've done O/T, therapy, and nutrition counseling on our own rather than let DS2 continue to worsen while waiting for the hospital group eval.

Lisa - Here are the tests our nurse practitioner ran:
1) urine analysis, through Great Plains Laboratory: organic urine analysis (metabolic and nutritional panel). This test showed gluten, yeast, and bacteria issues, and some of the vitamin deficiencies.
2) bloodwork, through LabCorp: Celiac panel; Comp. Metabolic Panel (14); TSH; Vitamin D, 25−Hydroxy; Zinc, Plasma or Serum; Ferritin, Serum;
F078−IgG Casein; F079−IgG Gluten; Venipuncture. These tests also showed gluten issues and other vitamin deficiencies.