ADD vs. SPD?

[Essy]

I had read the Out of Sync Child and felt that the 'sensory seeker' description fit my son perfectly. I saw his doctor today and she's never heard of SPD and instead of seeing an Occupational Therapist she wants him to be evaluated for ADD. Does this sound like a good way to go about it? The thing is that he has a ton of other 'issues' that I don't think would fit with ADD but do with SPD...including some gross motor skill issues, speech (some repetitive stuff and other things) and so forth. I couldn't even go over these with her because she just didn't know anything about it and it was really frustrating me.

I mentioned the fact that we have one good thing going for us is that we homeschool and we can do things at his own pace...she was like...well...with school maybe it would force him to sit still and concentrate more...arghhh...that ticked me off and I just stopped conversation at that point.

Will it always be this frustrating? I just feel like such a horrible failure as a parent when out in public all the time...and even the 'professionals' don't undestand.

[Rachel Jane]

(((((Essy)))))

just my .02

I'd find a different dr if at all possible. Can you ask your friends and neighbors what drs they felt were worth seeing?

If you do go the route of having him tested for ADD, perhaps that dr will have heard of sensory seeking. How frustrating for you. :group:

[Essy]

Ok...she just called me back and the wait for the doctor that she wanted us to see initially is 18 months...yikes...so she's having us see a neurologist. Does this make sense?

Rachel Jane, I think you are right about changing doctors the thing is that I've tried and haven't had much luck...I've even gone through the process for myself and ended up returning to her. I like her as a person and she's our family doctor (not a pediatrician...maybe that's the problem?) She's also not relunctant in referring us when needed which is good I guess...

[Linda]

I started to post, but got distracted. :lol:

I was going to say essentially what RJ did. Your ped should know, or at least have heard of SPD. Although it seems to change names every few years! :crazy:

Unless you really like your ped, I'd switch. The whole school comment thing is loco as well. Especially if it is ADD. You can't force a kid to sit still if they can't sit still. It will make everything worse and he'll be put on medication to "help" control him when he may need something entirely different. :spin:

What does testing for ADD entail? I'd still push for a referral to an OT for testing, don't ask, tell them that's what you want. You can still pursue ADD testing, but that doesn't preclude you from looking into Sensory testing w/ an OT.

:group: Praying for you. It is frustrating at times but if you stay with it, you'll be rewarded and so glad you did in the end. :group:

[Lisalyn]

Essy,

I agree with RJ and Linda. It's frustrating enough without those offhanded remarks and lack of updated knowledge.:group:


I would definitely request an OT evaluation. Maybe you could use the wait time for the ADD referral and neurologist as an excuse to go ahead with an OT.

I just took my 7 year old in this week and was given paperwork to fill out-some type of ADD assessment. She is referring him to a neurologist also, but the wait is long. His issues seem to be more hypersensitivity than seeking.

Eli is super sensory-seeking and spending two hours with his OT each week is making a positive impact. :clap:

[Sue S]

I don't mean to jump in on this thread, but I am curious to know what SPD is. Or at least what SPD stands for. TIA

[Sue S]

I don't mean to jump in on this thread, but I am curious to know what SPD is. Or at least what SPD stands for. TIA


Never mind...I found the answer!

[Essy]

So the appointment with the Pediatric Neurologist is on December 15th. Would I talk to them about the OT...or do I do this on my own? Do I need a refferal? How do I even know where to locate one? Would an OT be able to tell if he had something else wrong with him...like the high functioning autism stuff...or would that be the Neurologist job? I'm just so confused about the whole thing. I just know that something is not completly right with my child.

[Lisalyn]

Essy,

I'm not sure about the OT referral coming from the neuro.

We went through the state's birth to age 3 program for evaluations. They did a basic evaluation in our home and then sent us out for speech, behavioral, psychological and occupational evals.

The OT and speech evals were the first ones. Both therapists asked if we had a diagnosis once the evals were completed. When they found out we did not, they both gave me information on Autism and wrote in their evals that they "discussed autism with mom".

I left there that day with brochures and booklets full of info on autism, sensory integration disorder and auditory processing disorder.

We didn't get the diagnosis until the psych eval.

I think I would call the ped back and tell them to refer you to an OT for an eval while you wait for Dec 15th. It sounds like you may have a problem with that doctor though. :unsure:
Could you call your insurance company and see if they cover this type of appt without a referral?

Maybe you can find a local chapter of the Autism Society and call them. Our local chapter has been great at answering my questions regarding aging out of the birth to 3 program and into the school system. Something I never dreamed I'd need to know....

[Linda]

Even if your insurance doesn't need a referral, you may not be able to get an appointment w/ the OT w/o a referral.

The one thing I learned from Kristin H. who used to be on the boards was you don't ask for a referral, you tell them you're coming in to pick it up. :D

For sensory issues you need an eval from an OT that specializes in Sensory problems.

A neurologist can help w/ autism, sortof. Autism falls under a neurological disorder but a traditional neurologist really can't do much to help in that area. To get an "official" diagnosis you'll need to see a psych.

[Alice]

One thought would be you could ask for a referral to a developmental pediatrician instead of a neurologist. Behavioral/Developmental Pediatricians specialize in...well, behavior and devlopement. :) They see a lot of kids with ADD, Autism, SPD, etc. It can be tough to find one though if you are out of a major metropolitan area.

Am I right in seeing that your son is only 5? That's early for a diagnosis of ADD, in my opinion. I see a lot of kids that we definitely suspect ADD or we know they have it...but there are a lot of boys at that age that would meet the criteria by checklist but who don't end up having ADD.

[Essy]

Thank you ladies so much for all the answers. This definitely gives me lots to think about. I think I will call my doctor back. It's not that she wouldn't give me the OT referral...but with her not knowing enough about SPD, she's was like... won't you rather have a real diagnoses first? So, I caved and accepted it...and thought I could follow up with an OT after. But from what you are all saying it IS the OT that makes the 'real diagnosis'...right? Will just any OT do? Are they all familiar with this? Or do I have to do research for a particular one in my area to be referred to? I'm hoping to educate my doctor on this as we go along also. Like I said before, she really means well...she's young and a mom herself...and if she's clueless, I can just imagine how many others like her are out there.

[Lisalyn]

Essy,

I'm not sure an OT can actually give an official diagnosis, but if you could walk into that neuro appt or an appt with a devel. ped. carrying an evaluation report, it would help.

Our OT suggested testing for Autism in his report, but we were already scheduled to have that done. We were just a few weeks away on the appt.

He knew it was autism, I'm sure.

It may be different if you're looking at a SPD diagnosis versus Autism. I'm basing my comments solely on our personal experience.
:group:

[Linda]

An OT's eval will be the diagnosis you need for Sensory issues, not Autism Spectrum disorders.

You need to find one that specializes in Sensory issues, not all of them do. We were in a medium sized city in OH when we were looking. Ours was through our Children's Hospital. There was one gal who did the evals and she was on maternity leave. :eek: So, it took a little bit of time to get our dd in. Once we had the eval, they recommend the therapy and therapists that specialize in Sensory issues. In our town, there weren't many but we were able to get in to start therapy maybe a month after the eval was complete. My dd's recommendation was for 3 months once a week. It really did help and I could see how even a little bit longer, or going back during various transitional periods in her life, would have helped even more. Just little reminders here and there of how to self-regulate as she has grown and changed.

[Essy]

I guess I'm just concerned that if I asked my regular doctor for the referral vs. the specialist, she wouldn't know exactly where to send us. I'd hate to get the run around. Would it be that much of an issue to wait an extra month to see the OT? He actually seems to be improving on some things...don't know if it's just my awareness of things now and trying to control them the best I can or what.

I can't tell you all how much I appreciate your input on this. I feel like a period of my life that was involved in advocating for my elderly parents has ended and now a new one is beginning. I'm not sure why God trusts me so much...but may His will be done.

[Melinda S.]

A bit late here, but I went through very close to this, with our family dr. He wasn't pushing us to go somewhere else, but he didn't know anything at all about sensory issues. I stumbled on it at the library, so I called the OT. They said, "we need a referral from the dr, so we have a code to give the insurance co."

I asked the OT specifically what they needed, then took dd to the dr, and said, "I need a referral to this place. Here are the codes they suggested you might use." (They are things like "rule out sensory disorder," and they gave me the number and the name.) The dr did a few basic neuro-type tests, like "close your eyes and touch your nose," and he was clearly puzzled. He could see what I was talking about, but didn't know anything about it. He gave me what I asked for, and then said, "have the OT send me a report, so I can learn about this, please." I happily complied! :)

Family practice drs are great for some things, and I love ours. However, there are some things they don't learn, because they have to be generalists. The time they might spend doing developmental pediatrics, they wind up studying old people, instead.

From what you said, it sounds like you could tell your dr, "I will go to the appointments you want me to do, but I also would really like to pursue this other angle. Could you please give me the referral they need?" That way, you are following his/her advice, but you are also doing what you think needs done. You would probably need to call around and see what you need to do, first. If there's a children's hospital near you, that would be the best starting place, IMHO.

[Robin H in VA]

:group: Essy

I had to look at where you are from when I read what you doctor said about school.:eyes: Kinda sounds like our ped. Our ped told me that if my ds was in school, he would be a 'different' child. That he would learn 'so much more'. I have even gone through testing at the local school with ds and have been told by the people there, that they could tell more about ds if I would just send him to school.

I just wanted to say, sorry that you too had to go through the same thing we did with our ped. I am still looking for a new doctor for ds, but I am not sure if I am going to find any that are homeschool friendly. Then I have to make sure they are one of the doctors on the insurance lists.

Our ped did get us another appointment with a neoroligist, but our appointment is not until January. I had to practically jump through hoops to get this done, but I guess it is a start.

One thing I did want to ask of everyone and I hope that it will help you too. How is a child tested for ADD or other disorders and who does this kind of testing??

Our ped gave me this evaluation sheet that is used for ADD evaluations and told me that I could fill it out and see what I come up with.:unsure: The form is NICHQ Vanderbilt ASSESSMENT Scale - PARENT informant. Has anyone else been given this to fill out with no other instructions?? Is this a normal process??

[Melinda S.]

The "testing" for ADD is somewhat subjective, and does rely on parent and teacher assessments. If you don't have a teacher, you might be given that one, as well. It can be done by several types of drs or psychologists, I think, though if drugs are needed that requires a dr. I think most specialists for this are psychiatrists.

Ours was done by a neuropsychologist, a person who does educational testing. She gave us the diagnosis, though it was mostly based on my assessment of dds struggles. It's somewhat subjective, because all kids do these things some of the time. It's a question of how much it interferes with their lives.

[Robin H in VA]

The "testing" for ADD is somewhat subjective, and does rely on parent and teacher assessments. If you don't have a teacher, you might be given that one, as well. It can be done by several types of drs or psychologists, I think, though if drugs are needed that requires a dr. I think most specialists for this are psychiatrists.

Ours was done by a neuropsychologist, a person who does educational testing. She gave us the diagnosis, though it was mostly based on my assessment of dds struggles. It's somewhat subjective, because all kids do these things some of the time. It's a question of how much it interferes with their lives.


We homeschool, so having a teacher do an assesement is not going to happen, so how would I go about getting another professional to do this type of testing? I did the assessment that was given to me from our ped. I took it to the school where my son is being tested for speech issues, but I was told that they could not tell my anything, they didn't even look at the assessment.

Sometimes I just feel like I should give up and not worry so much about it and that ds will 'get it' someday.:sad:

[Melinda S.]

The neuropsych had me do it. I tried to focus on educational things on the "teacher" one and home things on the parent one, as much as I could. If you have any friends who are teachers, who have spent time with him, or any Sunday school teachers (even from a year ago) who have several years of experience with a lot of different kids, those might be good choices.

Schools have gotten in big trouble for saying, 'we think your child is ADD,' since they are not medical professionals. I'm betting they are running a bit scared, because of that.

My dd has outgrown a lot of things, at 12.5, though others are still a struggle. I would base a lot on how much it's interfering with his life. Little boys ARE going to be active, but if it's causing a lot of problems, it might be time to get it looked into.

[Rachael]

My older son has ADD. He has a few of the "H" type issues, but not enough to have ADHD. We resisted even doing the evaluation until he was nearly 9, but by that point, we could no longer manage his behaviors on our own, and his behaviors were greatly interfering with school, family, and social time. We used the Vanderbilt assessment. I filled out the teacher form, and DH filled out the parent one.

I absolutely hated the idea of meds. In fact, I was nearly in tears at the ped office. My DH was for them. Our ped said to do a 3 week trial, and then we'd discontinue the meds if I still didn't want them. After the first week, I was sold. His behaviors were so so much better, and our family life was so less stressful.

[Essy]

A bit late here, but I went through very close to this, with our family dr. He wasn't pushing us to go somewhere else, but he didn't know anything at all about sensory issues. I stumbled on it at the library, so I called the OT. They said, "we need a referral from the dr, so we have a code to give the insurance co."

I asked the OT specifically what they needed, then took dd to the dr, and said, "I need a referral to this place. Here are the codes they suggested you might use." (They are things like "rule out sensory disorder," and they gave me the number and the name.) The dr did a few basic neuro-type tests, like "close your eyes and touch your nose," and he was clearly puzzled. He could see what I was talking about, but didn't know anything about it. He gave me what I asked for, and then said, "have the OT send me a report, so I can learn about this, please." I happily complied! :)

Family practice drs are great for some things, and I love ours. However, there are some things they don't learn, because they have to be generalists. The time they might spend doing developmental pediatrics, they wind up studying old people, instead.

From what you said, it sounds like you could tell your dr, "I will go to the appointments you want me to do, but I also would really like to pursue this other angle. Could you please give me the referral they need?" That way, you are following his/her advice, but you are also doing what you think needs done. You would probably need to call around and see what you need to do, first. If there's a children's hospital near you, that would be the best starting place, IMHO.

Yes...she is willing to work with me, but I have to be the one to take lead alot of the times and that can be a bit frustrating...but I'm sort of used to that since I cared for both of my elderly parents prior to them passing away. Anyway...how did you find your OT?

The thing with my son is that he has several 'issues' that I'm not sure are related or not...but could be sensory related somehow. He has some gross motor skills issues...still doesn't dress himself all that well...can't put on his own socks, etc...even though his fine motor skills are excellent and can hold a pencil perfectly and work a screwdriver to undo tiny screws on the face of electrical plates (ask me how I know...lol). Also with his speach...I can't quite put my finger on what the issue is...he repeats things a lot...doesn't ask a whole lot of questions. He memorizes things from tv, books and so forth and repeats them alot. And ofcourse the outright sensory seeking stuff...no respect for personal space...always 'mouthing' everything and everyone(very kissy and affectionate)...lol. Also lots of issues with food...will only eat certain things...mostly harder textured foods...bread, bagels, pizza, raw fruits and vegetables etc. Lots of sleep issues too...wakes up alot during the night. At first we thought it was his sleep apnea...then he had his adnoids and tonsils removed and the sleep issues continued. I've noticed time after time that he usually wakes up is after my dh and I shut the tv and go to bed ourselves...so I'm thinking that the tv background noise might actually help him sleep?

Wow...ok...so I didn't mean to write this much...lol. But I guess it is good to put it all down like this. It might help me when I have my appointment.

[Melinda S.]

I called the local children's hospital. They have several OT/PT/ST offices in our city, and they sent me to the closest one of these. A place that does several types of therapy in one would be a good bet, when you are trying to figure out what the problems might be. One thing I have learned is that kids can manifest things like SPD in a huge variety of ways.

My dd had a lot of fine motor issues, which were well addressed by the OT. She still has some gross motor issues, though many of these are better than they used to be. Is he 5yo? That's probably a pretty good time to get it looked into. For the ADHD issues, it might be a bit early, though.

[Jo in PRC]

Oh Essy, :group: . It's so hard to wade through all this, isn't it? When our Anna was diagnosed, she saw a pediatric neuropsychologist. I loved it, because he was able to address ALL of her issues in a way that made sense. Then we worked with the OT, PT and other therapists to make the best plan. Once we had "experts" involved, it really was much easier. I'll be thinking of you and hoping for just the right person to help you. ~Jo

[Essy]

Just wanted to give you all an update on what has been going on here.

Monday we saw the Pediatriac Neurologist and as she said 'he definitely has hyperactivity' ummm....duh! And she told us about the drugs available...thanks, but no thanks. We will not be returning to her, we just don't see eye to eye...as she said 'school is a good thing'. And then proceeds to tell us what a bad scary world it is out there for 'children of color' and how they better be well behaved and in control for their own sake...and how it could develop into low self esteem. I'm thinking that this might be more of an issue for school children, no? So...why be so eager to throw them into that. Yikes. I think she was trying to be sympathetic but geesh. Anyway...we came out with tons of referrals. Psychiatric, Occupational Therapist, Speech Therapist, Nutritionist, genetic testing, MRI.

So...the main one that I was most interested in was the OT, so I got that going right away. I spoke with her on the phone today and I feel so validated. When I told her about my son's behavior she just said 'sounds like typical Sensory Seeking stuff'...I could have hugged her. I have the speech therapy stuff started too. They do a chat over the phone before even booking an appointment.

Anyway...thanks everyone so much for being here for us and pointing us in the right direction.

[Alice R]

My husband is an OT and OTs do NOT diagnose ADD. They might tell you that your child has some symptoms but they are not qualified to make a diagnosis like that.

I work with a clinical psych and he diagnoses ADD and other things like PDD.

My friend just go an ADD diagnosis from a Developmental Ped.

A neuro can also make a diagnosis.