Question -- head lag

hmontty

Hi, ladies.

I am looking for some advice/knowledge.

My LO is a little over 4 months old. She still has head lag and also tilts her head to her right side when relaxed. She is able to hold up her head while on her tummy, but she's not even close to a mini-pushup.

Went to the pediatric neurologist at 3.5 months. He said there was nothing "major" wrong and that I probably didn't have anything to worry about. However, I am meeting with a PT next week through Early Intervention.

I was searching past posts on the Bump and saw someone whose son exactly matched my daughter's problems. Apparently, from her posts, after months of PT, the boy's head was still tilted at a year. Last post I could find said she was referred to a neurologist. Nothing after.

Anyone else have something similar with their LO? She is meeting all milestones, verbally, socially, and physically, except for that head and trunk control (brings hands together, tracks, picks up and handles toys, bears weight on legs, etc.). No other apparent symptoms.

Just trying to find similar cases and how they turned out.

Thanks so much.

Florak8

My son had torticollis, which was alleviated after several months of PT. I am glad you are seeing a PT. If you do the stretches and exercises as they tell you, that should help her a lot.

My son also had head lag which was indicative of low tone or hypotonia. Some kids are born with benign congenital hypotonia, which gradually corrects itself. This neuro might feel that your daughter has that, if anything. We saw a neuro who was very freaked out by our son's low tone, then a neuro who said, "he might be a gymnast someday" and brushed off our concerns. Same kid-- very different reactions. So my suggestion to you would probably be to get a second opinion.

It looks like our son's hypotonia and epilepsy are caused by an in utero brain injury called PVL which was found on an MRI a few months ago. It was not seen on an earlier MRI. I am not in any way saying I think your daughter has this issue, but I figured you would want to know since you were asking about how it turned out. Really, it turned out fine, because he is the most awesome kid ever. Not that I am biased.

 

hmontty

Thank you.

It's not torticollis -- that's been ruled out by both my ped and my neuro.

 

ToastieSimons

Did they suggest you get her eyes checked?  Sometimes if children have vision problems they hold their heads tilted.  It's just something else to rule out. 

hmontty

Actually, no. That was suggested by my ped, but never mentioned by the neuro. I guess I supposed the head lag and head tilt were related, but I will make an appt with a pediatric ophthalmologist on Monday. Thanks.

realisticdreams

Does she have reflux?  Morgan started to tilt & they said kids tilt to alleviate the pain associated with reflux, sometimes.  

Peyton's was neurological IMO but Morgan's got a lot better with little re- positioning once we got her on a med that controlled the reflux. 

hmontty

No, she doesn't seem to have any problems with eating/reflux/spitting up.

What is IMO? Did that cause tilting in your other child?

realisticdreams

hmontty:

No, she doesn't seem to have any problems with eating/reflux/spitting up.

What is IMO? Did that cause tilting in your other child?

oh sorry no, it's IMO for In My Opinion.  

I just realized your daughter's name is Morgan!  lol.  

Sorry I can't be of more help, perhaps you should get a 2nd opinion with another neuro, that a long with PT is your best course of action at this point.

Peyton's head tilt was awful & we started PT at 2 months.   

hmontty

realisticdreams:

hmontty:

No, she doesn't seem to have any problems with eating/reflux/spitting up.

What is IMO? Did that cause tilting in your other child?

oh sorry no, it's IMO for In My Opinion.  

I just realized your daughter's name is Morgan!  lol.  

Sorry I can't be of more help, perhaps you should get a 2nd opinion with another neuro, that a long with PT is your best course of action at this point.

Peyton's head tilt was awful & we started PT at 2 months.   

 

I see And the PT helped? I brought up Morgan's tilt at her 2-mo appt, but they said not to worry about it. I brought her back at 3.5 months, and finally they seemed to think it was a problem. However, I wouldn't call it "awful." It is certainly noticeable, but it's not constant -- it goes in waves -- which my ped said means it's probably NOT neurological. 

Well, PT comes next week with Early Intervention, so we will see. I guess it's the tilt combined with the low axial muscle tone that concerns me, but the tilt could very well be a consequence of the low tone rather than something different.

 

st.augbride

My son has low muscle tone in the trunk and torticollis, and presented exactly as you decsribed. He is at actual age so far for social/cognitive skills, and between actual and adjusted for fine motor, but gross motor skills are his weakness and he is at the 4-5 month level (other than rolling belly to back at 4 months old b/c he hated tummy time that much, lol). He finally lost the head lag at around 5 months old and we're still working on mini push-ups. We now work with PT every week and we're seeing progress...slow, but steady. Also, for the torticollis, we've been working on that tilt with stretches since 4 months old (his vision checked out fine). He has full range of motion with his neck and we can totally stretch him out, but some days we wake up and he's just in full blown tilt mode again. It even switched sides on us once! We now work with a fantastic physiatrist and she thinks all of this can be related to how movement is organized in the brain since. He also doesn't bear weight well on both arms or both legs at the same time. As soon as one goes down he wants to pick the other up. They don't think we should have an MRI yet b/c they want to see how he progresses in PT since we just started up with a really good private PT after seeing no really great results from EI. I am thinking that an MRI might show delayed myelination which is common in preemies and can get somewhat better over time, but who knows. All that matters really is the outcome in PT, so that's what we're focused on.

Motoki

interesting- i just posted something about my son's head lag (he's almost 7 months now) and was looking for (i believe) the same community member- i don't know where/how to find her! i'm also curious about your situation now. i'm clueless because my son has always been great w/ great tummy time, and the only reason i decided to do the head lag test was b/c he was letting his head drop to the left when relaxed sometimes. but most of all, i'm frightened of what i may find out (the family doctor whom we have seen so far has never done the test with him, and i'm terrified that we may have lost a lot of time getting at the root of this already). hypotonia (or rather, what it may be a symptom of) is what i am mostly worried about.

Motoki

following up on my previous post at the end of this thread: we just went to see the doctor who is going to give my son a full developmental exam, in addition to running some blood tests. he definitely confirmed that the head tilt and lag are due to hypotonia and that the reason he's so good at tummy time is b/c he overcompensates by using his arms a lot. we are probably also going to start PT and hope that helps. i continue to be scared, but am a bit consoled by what the doctor said- namely that he sees a lot of cases of hypotonic babies, and most turn out just fine. just like in your case, his head tilt comes and goes. you mentioned being worried about the tilt+ low axial muscle tone combo- could you please explain why? did any of your doctors mention anything about that? we're in a similar position, and my son is a couple of months older that your baby- which worries me even more....

Florak8

The OP has not posted since last August. I hope she will see this and respond.

Some kids do seem to overcome their hypotonia and pick up with gross motor development around 18 months. That is generally called Benign Congenital Hypotonia. For other kids like mine, it is due to other causes, such as an insult to the brain, a genetic disorder, or a connective tissue disorder.

One thing I have learned is that each child with hypotonia is unique, even when they have the same underlying diagnosis (Down Syndrome, for example). The best thing you can do is get as much therapy as possible and practice the exercises they teach you in therapy as often as possible. If you use day care, teach them how to do the exercises, too.

9 times out of 10, there is no quick fix for hypotonia. It is just something the child works at every day. 

Hang in there. I understand this is a scary time. 

Motoki

thanks for the encouragement may i ask what the final diagnosis was in your kid's case and how things are now?

Florak8

No final diagnosis yet. One doctor said he had PVL (in utero brain injury) but another said he did not. So we have been through a lot of testing, but no real answers. It's hard to accept but over time it gets much easier.

He is actually making a lot of progress lately. He is 16 months behind in gross  motor skills, just crawling and pulling up to his knees, but he is getting there. He is about 6 months behind in speech and fine motor, and 3 months behind in cognitive, social-emotional, and self-care. To me, the improvement does tend to point toward a brain injury because it just takes time for the brain to recover.

Like I was saying, each case is very unique. It's frustrating because you want to know how it all turns out, and no one, not even world-renown specialists, can tell you. It's a major life lesson in letting go and just doing your very best each day.