Stunned--referred to ped. neurologist--Update in first post

[Violet2]

UPDATE:

So...ever take your car, which was stalling constantly, to the mechanic and they drove it for a couple days and couldn't find anything wrong? That was us today.

DD had her best day on the stairs with her left leg yet--she actually did one step normally. She did 'tripod' once (put down an arm to help support her body weight) and then fell on the right leg coming down the steps.

So?? I guess that's all within the normal range? That surprised me--I would have thought the gold standard would have strength and ability be more even on the rt vs. lt. sides.

The neurological exam was normal normal normal. Which is great, I'm just nervous kwim? This seems too easy, but they see sick all the time and can spot it better than me, so I guess we're good.

I'm kind of confused by the whole thing. I guess, for the moment, we're officially chalking it up to her being very tall for her age and growing even taller.

We did some blood work to check for muscle issues. No MRI ordered. Follow up in 6 weeks.

If you have any thoughts, let me know.

Thanks

V

I am a sad, scared momma today. DD is having some motor issues and the ped, instead of telling me I was over functioning and neurotic, referred us to a neurologist.

Our appt is next week.

I have no idea how to prepare or where to start.

DD has weakness in her left side--most notably she can't use her left leg to go up stairs and she falls a lot.

Any advice????

TIA
V

[BetsyNY]

Take a deeeeep breath.

If your daughter is having weakness on her left side, the doc is concerned about a bleed or some other abnormality in her brain. Was her birth traumatic, was there anything unusual about it?

How old is your daughter? Do you know how to contact the Early Intervention people in your area? Because regardless of what her brain looks like, the treatment will (most likely) be the same--physical therapy--and you can start that before getting the results of an MRI or CT scan.

[BetsyNY]

OH--I see by your sig that she's two. Call EI, tell them what's up--they'll send someone to evaluate your daughter.

[sbgrace]

There are lots of reasons things like this happen. Try, try, try not to wonder about the what it might be until you get the neuro's opinion.

I agree that you should contact early intervention for an assessment.

[MindfulBirth]

Originally Posted by Violet2

I have no idea how to prepare or where to start.

As someone else already said.. take a deep breath. Neuros can actually be lovely, helpful people. (if yours ends up being a jerk, come back here and let us help you find a better one).

Bring past medical records with you that note any observations or diagnosis. Try to remember all her developmental milestone dates and when you first noticed the weakness and falling.

They will most likely want to have an MRI done. Given your child's age, this may be done under general anesthesia. Children's hospitals are set up to make this as easy as possible for the kids and parents. They use scents in the mask to make it more fun. They may use dolls to talk to the kids about what will happen.

The neuro may also want to have an EEG done. This involves glueing wires onto your child's head for about 45 minutes to check for seizures. It may tickle to have the glue put on and she will need to hold still during that time. They will then flash lights in her face, have her blow on a pinwheel, and then lay still. If the results are inconclusive or show a concern, they may have her undergo a 24-hour Video EEG in the hospital (my daughter has these done every 4 months and thinks they are a mini-vacation because she gets to play with all the toys in the Child Life Room and she often is given presents by the nurses).

Blood labs may be ordered.

She may be referred for Physical Therapy and Occupational Therapy. Try to find a pediatric PT center that is geared towards kids.

(((HUGS))) I know it is scary to be referred to a neuro. Going forward, keep a large binder of all her medical stuff (including bills).

Wishing you all the best.

[Violet2]

Thank you. This info is SO helpful.

She's been fine up until now. Clumsy with poor spatial abilities, but umm, hello she has my genetics. Otherwise, most milestones have been super early.

She is a head banger when she gets mad although her last big 'bang' was weeks ago. The headbanging is full throttle so maybe she hurt herself that way? I always tried to stop it/cushion her head, but now it's so infrequent she gets it in before I can respond.

She has always fallen a lot but I thought it was getting better. I never noticed any weakness until recently and that was sheer chance- I read a developmental milestone and went huh, she doesn't use her left side. From there I learned she can't.

Birth was rough--she had significant head molding (according to her birth records) about 3/4" of her height was from the molding alone--a true conehead. They will have access to all her birth and NICU (due to infection) records.

Other than that, I have nothing. She's had colds and stuff but really nothing exciting. She might have asthma.

V

[BetsyNY]

Head banging can be developmentally appropriate for 2-year-olds, and she couldn't have caused what's going on with her gross motor function by banging her head, so don't worry about that.

[sbgrace]

She does not have the force at two to injure her brain head banging (I had a head banger and our ped. reassured me and I did a lot of reading on this). That didn't cause what you're seeing.

So has she never used her left leg or this is new or you don't know?
When she walks she puts weight on the left or no? It's normal for kids to do stairs using only one dominant foot at her age. I'm assuming, though, she's not weight bearing or similar? Is her hand/arm affected on that side?

[Violet2]

It's new.

She can't do the stairs on her left--she falls when she tries. We're not expecting alternating stair climbing, it's the lack of strength that is a concern. Oddly enough she used to alternate around 18-20 months, but it changed I'm not sure when.

She falls spontaneously in general (which has been an ongoing thing we chalked up to general learning-to-walk clumsiness). Yesterday her left leg collapsed under her twice...with DH and then me. She seems to be increasingly unstable, although her left leg is swollen now so I worry she's actually hurt herself on top of everything else.

The hand, I am not sure. She complained about her left arm a week or so ago, but nothing came of it. She is definitely right dominant across the board at the moment.

I am glad to hear she can't hurt herself head banging--she's given herself some bruises. It's a scary thing to watch for me as a parent.

V

[ainh]

I do think that peds are quick to give referrals these days. And many kids have a strong, strong preference for one leg over the other. My guy will be four in a couple of days and he still can't alternate steps unless holding my hand. It could be that she just had an injury and she's nervous to put the weight on it...it can be very psychological if they have a bad experience with an action. I find that the "sidedness" snowballs with my son. He's right dominant and so he does every thing with his right and so it just keeps getting unproportionally stronger, you know? Hopefully the neuro can help and it comes to nothing serious!!

[BookGoddess]

I hope things go well at tne neuro appointment.

Don't Google anything. I've made that mistake when I had health scares. The information you sometimes find on Google is incomplete, worst case scenario, and inaccurate. You can end up creating a lot of needless stress for yourself if you go to Google.

[Violet2]

Thank you mommas.

Tonight, her right leg was giving her trouble. But after she'd been running around kicking a soccer ball. Only one fall though all day.

So we'll see what they make of that.

I'm hoping it's just growing pains. She's almost 40" at 2 and is going to be tall--they say by 3 they are about 50% of their adult height, so if DD keeps growing, she'll, in theory, be way above 6' as an adult. Which is amazing, plus a lot of growing to do.

Of course, being that tall could be a sign of a problem as well, but she comes from tall genes.

We'll see what happens.

ETA: I already googled. On the one hand, I'm glad to have gotten the info from this thread, on the other Google has only scary things to say.

V

[madskye]

This thread is long, but might be interesting to you--you might want to pm NiteNicole, the OP? She went through something similar.

http://www.mothering.com/discussions....php?t=1147722

Hang in there.

[Violet2]

That thread was full of info, thank you. It will be helpful but yesterday it mostly made me

V

[Violet2]

bump

[MindfulBirth]

UGH! Been there many times ...in fact, was just at the dentist this morning after hearing my dd complain that her teeth hurt for a week.. .nope - nothing wrong!

Here are some options:

1. Be happy that the neuro says nothing is wrong. Chalk it up to growth/height/unintentional laziness ?? Wait it out. Either ignore it or point it out to her (is she aware that she favors the one leg going up stairs?)

2. Get a second opinion from a different neuro. Maybe follow your DD around with a video camera for a few days and see what you can capture.

3. Find a Physical Therapist that will take your insurance. Ask them to evaluate her. Maybe there is nothing wrong neurologically, but she could stil use a little help with core body strength or something. Make sure it is a pediatric PT with child-size equipment. Check with insurance as to if you will need the pedi to write a referral or not.

4. Check her shoes. Do they fit correctly? Both feet? When I was in Jr. High, I grew very fast in the feet. My mom kept getting mad at me for breaking my sneakers and I ended up with painful feet and knees. No one could figure out why I was having problems walking until one day we went to a shoe store that had a foot measuring thingy.. come to find out I'd been stuffing my size 12 feet into size 10 shoes. By then my knees required a few thousand dollars worth of therapy and I have nerve issues in my toes to this day.

5. If you haven't already.. talk to your pedi again. Ask why they gave a neuro referral and if they agree with the findings. Ask if there is any other test they think would be in order at this time.

Keep us updated!