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Thread: I'm back for some opinions.....(M)(long)

  1. #1
    amelia1 is offline INCIIDer - A Community Creator
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    Default I'm back for some opinions.....(M)(long)

    I mostly lurk here so here's our background. DD is 4yrs old and has a motor tic disorder that started shortly after a seizure that the Dr.'s are calling an atypical febrile seizure. Mostly because they aren't sure what caused it and she did have a slight fever at the time. I also started noticing some behaviors/quirks of DD that, while not over the top, were certainly not the norm for most kids her age. Through some research I decided that she was exhibiting some signs of SPD. DH wasn't completly on board with me so I didn't pursue it. So...we were at one of her neuro appts and the Dr. asked me if I had ever heard of SPD. She said that DD was showing some signs of it and I might want to talk with Pedi about OT. DH was there and heard this but still, not really on board. Anyway....at my other DD's checkup with pedi, I mentioned this to the Dr. mostly because she is having issues with pee accidents. She will have 4-5 accidents a day but then sometimes go several days at a time with none. She says she can't feel that she has to go, etc. At first I thought she was using that as a excuse but the more I read, I am leaning towards the interoceptive sense issue. (She has issues with noise and things she perceives to be scary too.) She fits the bill. Runs to the bathroom at the last minute and then pees in the floor before she can get her pants down, etc. I know this is long and thanks for reading this far. I just don't want to be over reacting but if it is an SPD issue, I want to help her. Pedi pretty much left it up to me as far as seeing OT. I'm not sure what to do.





    and was pt'd for about a year or so with some accidents here and there.

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    Your dd sounds a lot like my dd when she was 4. I'd never really heard of SPD back then. She did have a hard time training with many accidents like you describe. She had a hard time with noises. I'll give you my advice about getting help do it NOW instead of later. We did get help for SPD by way of OT but not until my dd was 9. It could have helped her so much if I had known earlier. Especially as your dd approaches school age there are so many things that will become more pronounced. It will not go away on it's own. Believe me I've been there.

    I'd talk with the ped and ask for a referral and just go have an evaluation done. It can't hurt. Perhaps hearing these things from another professional will change your dh's mind. I know it helped my dh a lot plus he has a coworker whose twins have SPD. I told him what I knew and then he talked with her about it.

    After 6 months of OT (she also has vision problems we've done therapy for as well) I have a child who is confident and enjoys life. She does have the occasional accident and noises still bother her but to a much lesser degree. She is less clumsy and she is happy. It's amazing.

    Paula

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    amelia1 is offline INCIIDer - A Community Creator
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    Did you find your DD was very sensitive emotionally? My DD gets her feelings hurt so easily. Sometimes it's hard to discipline her.

  4. #4
    JulieATL is offline INCIIDer - A Community Creator
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    Default I say definitely consult with an OT.....m

    particularly if you have any insurance coverage for it, why not just see what they say? They will do an eval, you will fill out a checklist and see if there is anything they can do to help her. I have heard of many children with sensory issues having difficulty being able to tell when they have to "go". I see many potential benefits of consulting with an OT, but I don't see any down sides. My dh was also pretty skeptical of the SPD stuff, until he came with me to an OT appt and the OT explained in detail what SPD was and gave us some reading material which made it more "legitimate" to dh, since it sounded more medical. Let us know what you decide to do.

    - Julie

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    One of my kids with SPD also has an issue with pee accidents (he's 4.5). He did an intensive OT program at the Star Center here in Denver last fall. His pee issues have improved, but not they are not entirely gone. I do think it helped, since he is sensory under-responsive, among other things. He is having fewer accidents than he was a couple months ago, he's more aware of when he needs to pee, but his other pee problems remain.

    He has also been seeing the urologist since last spring for this problem (he has a history kidney issues, including surgery as an infant, so there's always a chance he has some other physical abnormality contributing to this problem). It is compounded by the fact that it hurts to pee and the pee is coming out in spurts. He has had a follow-up u/s of his kidneys, which thankfully was normal. The urologist diagnosed "dysfunctional elimination syndrome", in which he is having difficulty relaxing the pelvic floor muscle and in order to pee he must push past it. It could take a long, long, long time for him to get over this completely, since at the moment he's too young for physical therapy for it. Part of me is still concerned about the other possible abnormalities he could have, but diagnosing those is very invasive, so for the moment we'll stick with dysfunctional elimination syndrome (the PA at the urologist is SURE this is his problem). Along with this problem, he has had a problem with constipation that we have been battling (full colon was pushing on the bladder), but I think we're finally on a good track with that, thanks to the urologist (he's now on miralax; it didn't work well in the past, but then we did several months of mineral oil and milk of magnesia before going back to it; plus, dosing is very tricky with ds).

    One thing you can do is take her to the bathroom every two hours, religiously, to pee. The more she feels what it's like for her bladder to be empty, the easier it will be for her to feel full. It's rather difficult to put this into practice, especially with preschool in the mix, but you can ask them to make sure she goes at an appointed hour (say, 10:00). It's also hard, as a practical matter, to do it at home, but if you have a timer that can be set for two hours, that might help. Making sure she goes to the bathroom every two hours would be one of the first things the urologist would ask you to do.

    Did your ped rule out a UTI already?

    Surely SPD plays a role with dysfunctional voiding - it probably exacerbates the problem. But also remember that dysfunctional voiding is incredibly common among non-SPD kids as well.

    If she pees every two hours religiously for at least two weeks and you see no improvement, I'd want to consult with a pediatric urologist (or, since there are so few of those and they book up so far in advance, try a regular urologist who also handles a lot of ped cases - ask your ped for a recommendation - we couldn't get back into the ped urologist at children's, even to see their nurse practicioner, for 4 months, even though ds was already a patient in the past -- so instead we're seeing a urologist in a very large group practice who also does peds, and the PA said they see a child with dysfunctional elimination syndrome literally EVERY day). Now that I think about it, it usually takes a few weeks to get in to see a urologist anyway, so I'd consider making an appt, and meanwhile trying the every-2-hr plan to see if it helps (you can always cancel the appt).

    The SPD is a separate though related issue - I doubt that OT by itself can fix the pee accident problem, though it certainly may help and is much more important for her overall well-being if she has SPD. The earlier you fix SPD, the better - first, the better chance it has of being fixed thru OT in the first place, due to neuro-plasticity, and second, you can hopefully ward off, or help fix, some of the learning disability types of issues that tend to go along with it, that might not really show themselves until she starts school. Not that there's any data to support any of that Just anecdotal experience, including my own. Just don't do OT unless you're sure that the OT knows what they're doing regarding SPD; some only think they do. And I'm sure you don't want to spend money on something that's not going to show results, especially with your DH's outlook. I'd try http://www.kidfoundation.org/ , though I really have no idea how reliable their list of OTs is; at least it's a place to start. Also, for general SPD info, I'd see http://www.starcenter.us/aboutspd.html , and two books - The Out of Sync Child, and Sensational Kids. I now see on the star center's updated website that they discourage once-weekly treatment because they believe it's less effective than a more intensive program - I'm not sure what to think about that because I thought the majority of OT in most settings was once weekly.

    I hope what I wrote made some sense. I strongly encourage you to try to get her to the bathroom every 2 hours (this is important whether or not she has SPD), and keep her hydrated as well.
    -beth

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    Oh yes! She was very, very emotional about everything. Discipline was very rough going. I used to think it was the way I was doing it. Then I realized it was HER, not me. She's so much better since we've done OT.

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    amelia1 is offline INCIIDer - A Community Creator
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    Thanks for all the info. I have read the Out of Sync Child and that is what tipped me off to her SPD signs. As far as the peeing thing, the pedi ruled out a UTI. She gave me the # for the Bladder Dysfunction Clinic at our local Children's Hospital. She wanted me to try the bladder training techniques(frequent trips to the bathroom, having her sing a song after she pees but before she gets up from the toilet, etc.) for 6 months before calling for the appt. at Children's. So do you think I pursue the bladder dysfunction first or go for OT eval first? I researched OT's in our area and there is a group not far from me that specialized in SPD and Autism spectrum. Sounds like I should have her evaluated regardless. Thanks again.

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    amelia1 is offline INCIIDer - A Community Creator
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    Thanks so much. I will update when I can.

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    Amelia - I think you should do both, since there are two separate, though potentially related, problems.

    I don't think I'd wait as long as 6 months to call the bladder place, if you really do succeed in getting her to the bathroom very frequently. A month ought to do it. The nurse in the urology dept at children's here had told me two weeks, but then my ds has the kidney history.

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    trek is offline INCIIDer - A Community Creator
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    Let us know what you decide. My older ds still has pee accidents at 8 years old. So far we are holdign off on medication.

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