When I got back from my fabulous week away in NYC (on Sunday) HRH was having trouble walking, Mr LS said it began on Saturday. The best way to describe it is that he is limping on both legs, like he has stones in his shoes. Of course we stripped him off and checked his feet, knees and legs but no visible bruises and no stones in his shoes either. He is walking this way with or without his shoes, leaning onto walls for support and also walking this way while he is focused on something else, like the iPad (Youtube and film credits are very engrossing!)
As it happens we had an Occupational Therapy assessment yesterday, the final part to getting his service statement. What knocked me for six was the OT saying HRH's gross motor skills were extremely bad. Yeah, extremely. He was right though. HRH really struggled with the stairs and wasn't able to jump. He could do both of these before I went on holidays, maybe not gracefully, but he could do them. He has been referred to physiotherapy.
Now, logically I know there could be many reasons for this turn of events:
1. He may have an ear infection causing balance problems. He is not showing signs of it but I will have it checked out.
2. He might have had or be in a growth spurt and taking a while to adjust to his new height.
3. It may be a stim, even though he appears to be doing it unconsciously.
4. He is coming on so much with his social skills and social interaction he may not be able to process everything at the same time.
OR the one that is really worrying me, so you have to promise not to laugh!
*whispers* it may be regression.
Yes, ok, ok, I know I might be panicking just a bit with that one, but that is genuinely my fear. Having seen the initial, and frightening, regression between 14-18 months old it is something that I do not want to experience again. I felt so helpless and confused and I just didn't know what to do to help him. Since then we have seen him 'forget' skills, but we also know he just needs reminding that he knows them and some practice will sort it out.
This is different, this is BIG and very, very obvious. His teachers have noticed it and said he no longer requests to go on the trampoline, his favourite. They are very concerned too. Has anyone experienced this? or have any ideas of what else I could check?
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Ok..This may be and probably is WAY off base. But has he had an XRAY? Here's why I ask. It's not uncommon for kids on the Spectrum to be hypo-sensitive to pain. One of the kids in my daughters class, broke his arm, and no one knew for a while. He wasn't complaining of any pain, and his mood didn't change or anything. He just stopped using that arm. He just wouldn't use it. But, again, no pain complaints, or crying, or anything that would indicate distress.
My son just broke his arm on the trampoline a week or so ago, and you'd never know it really. He cried a little at the time, and stopped using it, but he's not in ANY pain at all now. Which is REALLY weird because yesterday's X-Ray showed it's definitely still broken.
Is it possible your son has had some kind of accident. As double sprain or something?
At any rate, (((hugs))), I know how scary this is. But you are ALL over it, it's going to be ok. I really believe that.
A couple of years ago my son had a rash on his elbows and knees. In a couple of days he could hardly walk, then he was crawling on the floor. Turned out to be scarlet fever. You don't mention any symptoms, so it's probably off base. I hope you figure it out, for both your sakes. Hang in there.
My little guy has trouble walking whenever he gets a fever. But you don't mention that. Has he been sick lately? There's also something called viral arthritis that can occur after a virus passes through the body. It's kind of random and scary, but then it disappears, generally never to return.
Whenever it's muscle related, I wonder about mito disorders - which would need a uric acid test, etc. Not a big deal to run. Regardless, I'd vote for a doc appointment quickly because as I recall, the mito testing needs to be done while the child is showing signs or is sick. BTW, don't let the word mito freak you out - they can be very minor disorders.
Good luck. Post an update, will you? In the meantime, hang in there.
Jen, I was thinking more of what the first comment says. Also, what about his hips? Could they be out of place and need to be popped back in?
Good luck at the doctor appointments and let us know when you find something out!! HUGS!!
Some great suggestions there, thank you so much for commenting, it really does help to read of your experiences because it gives me more avenues to check out. I will get to the bottom of it, but it is always good to have these ideas so that I can ASK the Dr. about the possibilities, if I just ask to have his ears checked he might do that and send us on our way!
Thanks again.
Jen
*hugs* I hope you manage to figure out what's going on with the wee man. xx
Oh honey. I am so sorry you are all going through this. I would definitely check hips, knees, ankles etc. I think bone/muscle issues seem to be the first step. Ears of course too. Love and support coming your way!
Wish I could help. Griffin has never done precisely what you describe but he has exhibited some frightening behavior at times. It usually turns out to be nothing and eventually passes. Hope that's the situation here.
Jen, it sounds like you've gotten some good advice. I'd start with the pediatrician who can check all body systems.
I know with our son, sensory issues can manifest themselves in odd ways. Hang in there...please keep us posted!
Hi Jen, I hope you manage to find something. I can't imagine how worried you must be :( Big hugs to you and hopefully he will be feeling back to his normal self soon. x
Jen, I can't offer any advice but it sounds like you've got some great advice already, I just wanted to say I hope you get to the bottom of it soon x
You say he is doing well in social interaction... so go easy thinking of regression. Sturla walked hunched for a couple of days. Obsessed with being little He could tell me what he was doing otherwise I would have been really worried. Hope you figure this out... worrying is so hard.
Thanks everyone for the good wishes. I am taking notes furiously here and piecing it together to bring a list to the Dr. @Borgerour, yes, his social interaction is great and he is in brilliant form so good point, thank you:) We stripped him down again this evening and made him walk up and down while we watched and there definitely is something up, one of his feet was really awkward looking so it could be a bone there, but no swelling. Poor fella thought we were going to cut his toenails and had a wobbler when we took off his socks!!
Thanks again people:)
Jen
No advice, just hugs and hope you find out what is going on x
Jen you mentioned before that your older guy is hypermobile, well could this guy be too? My eldest gets problems with her hips from it, and last week she actually couldn't walk with the pain (but she is very sensitive to pain) and she just twisted them out of place, they were grand after resting. But she has had limps etc for days due to it.
For peace of mind see could you get an xray or at least an appt with an orthopaedic consultant ...I had perthes as a child and the only symptom I had was I couldn't walk properly ...my brother was the same so definitely get it checked. Any hip problems in your family?
Foot and Mouth was the first thing that came to my mind. I'm sure my daughter had painful soles of her feet for ages before we fathomed out what was going on.
I can't think of anything that hasn't already been mentioned. The R word is scary, but I've not heard of anyone regressing and still walking, but with a limp. It could be that he's had a fall and hurt his ankles or something. Hard to tell until the docs rule everything out.
Hope its one of the easy ones to sort out. It's a worry just the same.
Agreeing with Þorgerður that 'regression' is not the correct term for changes in just the motor area while social/language skills are progressing. Nonetheless, what you describe is worrisome and definitely a reason to seek medical help.
Seems like you have already eliminated no. 3 and we just debunked no. 4. Do measurements validate that he has grown recently? (no. 2)
Your physician will know to check-out neurological sources for sudden wobbly gait, too, but you can use those words in a question if he seems to be brushing you off.
Waiting to read what you learn and that all is well again with HRH.
Barbara
OMG Una comment. No-one told me kids get pain from hypermobile joints. Eldest has that and often complains of hip, joint pain, and I just think he is trying to pull a fast one.
Please let us know when you find out what's going on.
Oh Jen, you poor love! I have nothing to offer in the way of advice, but just wanted to add my own bit of support to you. Huge (((hugs)))) x
@TherExtras, phew, great, thank you. Like I said 'panic' but it is hard not to sometimes. Still, I am so glad I put this up because the suggestions are brilliant and I would never have thought of most of them.
@Una, yes, and seeing as how I think the little one is hypermobile too no reason why HRH wouldn't be but I will ask for a referral about that and get it sorted out asap.
@ScottishMum, wow, I kind of forget that hypermobility can cause pain and tend to ignore my eldest when he complains. He regularly complains about his legs/hips being sore and tired, eep!
@Kellogsville, another one for the list, I never knew about the sore soles of feet! and it does look like he has sore soles, one being worse than the other. Not from looking at his feet, but from the way he is walking.
@Ella, Mammydiaries and A&A, thanks.
No offence to previous commenters taht I am now replying to comments individually. I just didn't have my head about me earlier to do it but I am really feeling much better and organised now. Dr first thing in the morning, with my notes. He is good though and will take my concerns seriously. But, HRH is also his only autistic patient so it is new ground for him.
Thanks again.
Jen
Jen it sounds like he may have injured himself rather than regression. The fact that he's walking awkwardly and struggling on the stairs would indicate that he's strained something. Munchkin stood on a piece of glass over a year ago and I pulled it out and dressed it. There was a tiny dot that wouldn't heal properly but she was still jumping on the trampoline two weeks later. The doc refered her for an xray and they found a 3/4 inch sliver of glass bedded into her heel! They had to cut her foot open to get it out. How she was still walking around and jumping on the trampoline was incredible. Get him checked out for your own peace of mind. Keep us posted xx
Oh jen ((())) Please don't ..well try not to worry about the dreaded "R" word...*whispers regression* I've noticed that sometimes when one of mine takes leaps in one direction..they kind of forget about all other directions (does that make sense?) they wind up catching up with each other..
I agree with AMR-talk to the doctor. My oldest..when he was six started walking kind of funny..he said his knee hurt..now there wasn't really anything visible..I thought I detected a slight swelling..took him to the doctor and he wound up having Lymes-which was treated with an anti-biotic and he is fine..
Hang in there Jen. :)
You're right to check out all possibilities Jen, none are laughable!
It's interesting that you notice something with his foot. What about his hips? Or Knees? A friend of WiiBoy's has always had a funny way of running..straight legs and hips jut out. Turns out it's something to do with his feet..like flat feet/fallen arches...but the other joints move funny to compensate. Worth an orthopedic check perhaps??
xx Jazzy
Hi Jen, sorry u didn't read all the comments so am probably repeating... This happened to tess only a couple of months ago.. Started limping and couldn't walk from one room to another without falling or holding onto the walls.
Very worrying as we had missed a tiny cut on her foot before that turned septic ( didn't notice until she was puking and spiking insane fever and stripped her down to reveal a cut on the bottom of her toe!) so makes me nervous when she's 'not right'
Anyway brought her to DDoc, got a great doc who understood the hyposensitivity and figured out she had hurt her hip
Told me to give her calpol/neurofen and if it wasn't gone in a week, take her for X-ray
I had no clue it was her hip, no idea how she hurt it, but it did go away after about a week
I would do the X-ray if you're worried
Poor little man x
So sorry that something so worrying is happening. The only experience I've had is with ear problems which were definitely the cause of my boy's balance issues when he was little, so maybe get the doc to check them too xx
we go through this ALL the time. I see something new like this and I freak out!! I come up with a million "what ifs" and I drive myself and my google search box mad. It's always temporary. Always.
Well, I'm not sure but I sure hope it isn't anything serious. Hugs to you and keep me posted!
Just wanted to add my best wishes.
Geez, I've never heard of anything like that. I agree with the others...I've never heard of a physical regression like that unless it's strange manifestation of a new sensory issue. I will be awaiting to hear the verdict....
Nothing to add except that I hope you can figure it out very soon, and to send my best wishes.
@Lynn, agreed, it would be strange, but we did notice when he did the whole regression thing that his walking and balance disimproved along with his eye contact and speech. Physical regression would probably be very unlikely now though.
@Petunia, oh wow, amazing what the little ones can put up with and behave as if nothing is wrong.
@Kathleen, yep, that is what I was thinking that it was all too much for his brain to process at once.
@Tes'sMum, looks now like that could be it for us too.
@Dani, wow, you must be driven scatty, I suppose I better get used to it!!
@Bella & Mamafog & Geekymummy, thanks :)
We are off to the Childrens Hospital to have his hips xrayed, a good place to start. He is much worse this morning, staggering instead of walking but it does seem to be improving as the day goes on.
Will let you know how it goes and thanks again for the advice and support, I am so much more rational now :)
Jen
Hi good luck with the x- ray. My sister who is not on the spectrum went through something similar and it turned out her hip socket didn't form on one side even though she did pass the hip click test as a baby (she shouldn't have). I know they can see that in an x- ray. Our 3 year old has ( not as badly as your sons) balance issues trouble running and gravity insecurity he has one leg that turns in from the hip and physio says he has very loose joints. I've been trying to get him an. X-ray for the past year but everyone says it has to come from peadiatrician and we can't get his secretary to ring us back probably because we are public patients! Re regression I had similar worries about our 5 year old and spoke to manager at their school. She said typically kids on the spectrum if they have already had a severe regression it doesn't happen again. Sometimes routine changes or illness can cause temporary or small regressions but can usually be caught up again in a short period of time. Good luck!
I'm late to all this, and just want to wish you well at the hospital. It really does sound medical, so hopefully they'll find what is bothering him. Hugs.
Just to Glenda your GP can give you an xray referral, my eldest has that turned in leg and loose joints (the turned in leg apparently is quite common).
Sending positive vibes.
Hi Jen; sorry to hear you're having a worrying time. Funnily enougth, my daughter is also having problems with her feet - we think it is because of how she walks (pitches herself forward) and is often on tiptoes - the doctor has mentioned a hospital referral too. Hope things improve for you.
Give an update soon please. I agree with Lynn,I think (hope) it could be sensory. We go through phases, like Big Daddy and Dani said. Some things are a scary or I fear regression, but then they do fade. However, we haven't had anything this serious. But when my son likes the way something feels or sounds he may do it a lot because he doesn't get that it is weird, or frightening or bothering Mommy! Hugs!!!
Hips x-rayed and blood tests done to check for a virus, all clear. Hospital think his hip joints are inflamed though so some mild anti-inflammatory medicine to be given and 'further steps' in a week if he has not recovered. *phew* Jen
Oh Jen, you must've felt a weight lift off your shoulders after the x-rays, hope the anti-inflamm's work and it's just simple growing pains or something.
Jo x
yay Jen! so glad for you!! thanks Una, (we've switched gps in last 6 mo, previous one knew nothing about autism and never took anything seriously- thought everything was related to autism so nothing they could ever do... lol... will talk to the new one who is much better autism advocate, phn and physio both wanted x-ray so i'm sure she'll refer him!! thank you).
Golly you have had some amazing replies here, and I can't offer anything new sadly but I do hope (crossing fingers and toes) that the medics will have offered some reassuring advice to you by now. Lots of hugs anyway x
We went through this EXACT same thing with my daughter who is not on the spectrum, one day she woke up limping and losing motor control and things went down hill from there. We searched for answers for months and ultimately they decided, by excluding everything else, that is was an infection that had attacked her nervous system. I have lots of posts in which I begged people for answers and chronicled what we went through if you want to read them at all you can click on the tag "medical mystery" on my blog. SO sorry you are going through this, email me anytime if you want to talk more, it is so frustrating.
No advice, but hugs. xx
Oh, goodness. I am so glad I thought to look through the comments for updates. I hear that anti-inflammatory meds can take a few days to get to peak effectiveness so be patient as long as you see some improvement. Feel Better HRH. You are giving your Momma some gray hairs :)
Oh gosh Jen I would be worried too and I don't blame you for being panicked but I am sure that it will pass with time and effort/therapy. I guess that the good thing of it is that he is not in pain because that would be one of my primary concerns if Griffin was doing something like that.
Hey, Jen, sorry so late coming to this, I read and meant to comment earlier. I hope it is just a "simple" inflammation of the hip joints, but then you wonder - why and how the hell did that happen? Poor guy, the last thing he needs is more troubles. I hope the anti-inflammatories do their job and he is on the mend soon.
Jen, I am late to your post too. I am glad you got everything checked out and I hope you are on the right path now,it is a worry for you all.
I hope he is well soon!
Hope all is well. I go away for a few weeks and you've been in NYC! I came to say I've put the blog gems button on my blog, lovely idea. Hope HRH is okay xx
I would think maybe he fell and hurt himself? You know how our kids have the high pain tolerances...I have never heard of physical regression, either. I would def get it checked out by a regular doc.
Jen,
I hate that you came home to this. I hope the anti-inflammatory meds are helping and he is better. I'm glad the x-rays and blood work were negative. I know someone else mentioned hypermobility. I wonder if it could be a combination of balance issues with hypermobility. Even with my husband and I being in the medical field there have been too many times when our daughter's symptoms have been a mystery, but just as mysteriously improved. I hope things get better soon if they haven't already. Sending you love, prayers and hugs. P.S. I'm glad your holiday was a success!
Aloha,
Sue
Oh goodness Jen, so sorry to hear this. No advice to add I'm afraid, but really hope you get this resolved soon x
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