Could this be SPD related?
Rachel Sonnier
member
I have been lurking on this board for a little while, but have never posted. I am kind of new to all of this, and I have a question, so I hope its ok to ask.
My son often wakes crying and complaining of foot and leg pain. This goes on for an hour or so, and lately I have been keeping track of it. I found that it is usually on days when he is over tired, misses a nap, or out of his regular routine. Could this be related to his SPD? I never thought of asking the OT and since it is a holiday we won't be going back till next week. Just curious if anyone else has dealt with this before. He is 3 and a half, rarely sleeps through the night, and has had night terrors often in the past. At first I thought it was just more NTs, but he keeps consistently saying that his feet are bothering him.
Re: Could this be SPD related?
I am probably going to be the weirdo all the way in left field here but from what we have been told at this age a child shouldn't have "growing pains" or anything of the sort. P has a lot of leg/foot pain because of her tethered cord. Does he have any other medical problems? Any midline abnormalities (near his butt cheeks..like crooked crack or a dimple sometimes the dimples are low and you have to open their cheeks to see).
Again, I'm only telling you this because we were misdiagnosed and P now has permanent bladder damage and it could be nothing or it could be something.
I have heard the same about growing pains. He does has GI issues, food allergies, he has had surgery for bilateral hydroceles, some fine motor issues, and I'm going to have to check his bottom when he wakes up, but I remember when he was first born the ped saying something about a deep crevice or something where his little crack is, and just to make sure it stays really clean. I'm not really sure what I am supposed to be looking for though. And this might sound really dumb, but how would that affect his feet?
Ok, I just looked that up online and he is sleeping pretty hard on his tummy, so I went and checked him, and he does have that! It is like a little hole. Nobody ever told me that was a problem. What does that mean?
it could mean nothing..or it could mean something (shocking i know lol). Basically it could be anything from the nothing to a tethered cord or an occult form of spina bifida. GI problems are pretty normal for kids with tethered cords too because the bowel and bladder are affected. The bowel/bladder/lower limbss are affected because the cord pulls as they grow and it causes damage to the nerves, etc.
our pediatricians never really said much about Peyton having a sacral dimple, her original symptoms were a couple of UTI's, severe constipation, lots of tippy toe walking, tons of falling..something else i can't remember but this was early. We were sent for an MRI which didn't show much except a fatty filum/fibrolipoma. We were given a handout on tethered cord which is funny bc she had 4 of the 5 main symptoms. Felt like I was crazy for a few months and got a 2nd opinion. They did another MRI where she was flipped (this is called a prone MRI and i am a HUGE advocate) I have personally had a couple of moms ask for it and it has been what has showed that their little ones had tethered cords as well when the regular didn't.
Reason being is that the cord can still end at the normal position looking 'normal' on the MRI if you flip a child and take images from back and belly the cord should fall forward when they are flipped to belly. The spinal cord freely moves inside of us. So P's did not fall forward, it was in the same spot because it was tethered down to something that they couldn't really see on MRI.
I really really really do not want to freak you out, I just take this very personally and like to help parents advocate for their children because I regret not being pushier and finding answers out about P earlier than I did.
I would 1. call the pediatrician tell them you are considered that you noticed this on the butt crack, hell tell them you have a friend whose kid has similar symptoms and ended up having a tethered cord. Do what you have to do. Find a good pediatric neurosurgeon while you're at it, even if your pedi dismisses you go to the neurosurgeon.
2. get the mri ask about the prone position. Our neurosurgeon says that new protocol is that any child with a midline abnormality plus a symptom should have an MRI done because you can never be too sure.
3. things like this can cause irreversible neurological damage, yes its a simple simple surgery but not having it done or finding out about it until later has serious consequences. (not for every child but for some) Their are some adults who go their whole lives wondering what their back pain is and find out in their 50's etc.
If you have any other questions feel free to PM me (just le me know you did)
Seriously didn't want to freak you out I just want to provide you with proper information to make your own decisions.
He is very clumsy and falls often, in addition to the fine motor issues, but we all are in our family...both sides unfortunately.
I saw you mention something about bladder issues. He has never had a UTI, but we have been struggling with potty training for over a year now. Nothing is working. Could this also be related?
Again, thank you so much for this info. I had never even heard of tethered cord. My mom does have a mild form of spina bifida though. Does that put him at a higher risk for this?
Their isn't supposed to be a familial link for tethered cords (even though it's a neural tube defect) but what from what i've read/been told about the milder forms of spina bifida they are seen in families. And yes, struggling to potty train is a sign as well. Some children will go on to potty train after a surgery, etc. P just turned 3 but realistically I have maybe 15% hope that she will ever be able to potty train normally urine wise. She has been doing very well with #2 as she only has neurogenic bladder now bowel just slow motility issues for which she takes miralax.
Some children will potty train but then start to regress as well, it's one of those things where everyone is different. If this starts to become a reality since you mentioned he isn't potty trained make sure you link up with a urologist. P had most of her bladder testing done post surgery but we are good friends with a family whose little boy had surgery when he was 4 and no one checked his bladder/kidney's ever and now he's in kidney failure. An extreme result but one that could have been prevented none the less.
How often does he pee?
Blahh I feel awful that I gave you all this info when you are stuck and can't call the dr. Because i'm one of those people who hates waiting. I really really hope your pedi takes this seriously and they really should especially when you say you have a family history of neural tube defects.
Keep me updated!