Toddler Walks ONLY on Tip Toes... Very clumsy.

[mamawaabangi]

My daughter is 2.5 years old and started walking at about age 1. She only ever walks on her tip toes. When standing still she will sometimes go down onto her flat feet, but when in motion it is always on her toes. She has very poor balance and falls often. She looks like she is a little drunken sailor weaving all over. She falls and skins herself up exceptionally more than other kids.

 

She also came home via adoption and had a traumatic birth in a 3rd world country in which she was eventually (after a very long labor) born via c-section. Her mother was a young teen. 

She didn't sit up until we got her at about 9 months of age (she was just starting to be able to hold her trunk up) because the orphanage she was in just strapped her down in a seat most of the time, but then progressed very quickly in skills and was crawling, cruising and walking with in a short amount of time (over about 4 months).

 

Our pediatrician says not to be concerned... but really... I am. 

Her coordination has not improved at all since she has started walking nearly a year and a half ago... she looks like she "just" started walking.

 

She is "normal" in most other ways. 

 

I have tried making her walk flat footed, but that works for literally 20 seconds.

I have tried both letting her go bare foot and also in stiffer shoes that keep her from walking on her tip toes.

 

I wonder if she has mild CP or short calf muscles/tendons???

What would you do if your dr. refused to do anything? 

I don't know what to do...

[Janie Grace]

My ds did this (toe-walking). The tendons on the back of his heels were tight. I did gentle stretches with him every day and it helped a lot. You just put your hand on the bottom on the foot and gently press to flex it upwards.

[Pamela H in Texas]

I've been fighting my kids' pediatrician for 3 months (how long I've had them).  She won't give in.  So I asked their speech therapist to make a PT eval referral.  THEN I had the baby's PT look at the boys and SHE made the referral.  Mess with me.  My boys are getting SMOs (after a full eval, the one may get an AFO).  

 

Anyway, so if you have other therapists in the house, you might be able to go through a back door.  

 

You could also try making the referral yourself.  The doctor will still have to sign off on the eval; but sometimes they are more likely to do that than they are to write the order themselves.

[MomtoCandJ]

See if your state has early intervention, they will do an evaluation and if there is a problem they will provide services.

[Jan in SC]

I would absolutely go around the pediatrician and get this evaluated. You could start with an orthopedist and then a prescription for OT and PT from him. It is much, much easier to deal with this at a young age. My ds was casted for a couple of years and I wish I'd ignored the ped and had him checked at the preschool age!!!!

[catz]

I know a boy with this issue who had to have surgery as a preschooler for this EXACT thing. I don't know exactly what the issue was. He was in 2 casts for a while but the surgery worked perfectly for him. That said, I would absolutely fight to get an eval from someone qualified.

[zoobie]

Are you in the US? Call Early Intervention and get an evaluation. It's easier to get one before the kid turns 3 because then you have to go through school system. If you don't like the EI eval, you can get an OT eval done through your health insurance. Most pediatricians will write a referral if you request one even if they tell you not to worry.

[lamolina]

Some states will allow a PT to do an evaluation without a Dr's orders. They do then have to to get orders for continued treatment. You can check to see if your state allows this. I am a PT and I would recommend getting your child evaluated. Sometimes they just outgrow the toe walking, other times it does indicate a more significant issue. The fact that she can stand flat footed at all sounds encouraging, because often a kid can be so tight that they are not even able to put their heel on the ground.

[Ellie]

I would get an evaluation from a different doctor altogether, ASAP.

[GoVanGogh]

My DS has mild CP. He doesn't toe walk, though his orthopedic specialist doesn't know how/why he doesn't.

 

In my own personal experience/opinion - I wouldn't trust a pediatrician. In fact, just a few weeks ago our new pediatrician told me they are not even trained how to spot CP or what the symptoms are, unless there is obvious hypertonia in the hands.

 

Likewise, I don't trust ECI (Early Childhood Intervention) - again, just my personal experience. They might be a great place to start. But - if the child doesn't qualify, it does NOT mean that there isn't anything wrong - only that the child is not far enough behind to qualify for services.

 

I would get a PT eval and have them look at possible tightened tendons, retained infant reflexes (common with traumatic c-sections) and ankle clonus.

 

To me, the quick progression from delayed to walking is an indication that something more is going on. She really needs more time in the crawling stage to activate her vestibular system, which is key to later balance and coordination.

[GoVanGogh]

I wanted to add re: CP

 

I have read that something like 80% of parents had to flat-out ask the neurologist if the child has CP. We fall into that statistic. We had tried for years to get a diagnosis on our son, pediatricians never concerned, sailed through an early ECI eval (he leap-frogged over the stuff they were looking for at his age), sent to wrong specialists. It has been a nightmare. Last fall, we were finally given a preliminary diagnosis of "a brain injury from traumatic birth that led to a neuromuscular disorder." Our therapists kept asking, "But is this CP? You are probably going to need to ask." I could not even believe that we would have to ask! Wouldn't they just diagnosis? But on our third neurology appointment, we asked and were told, "Well, yeah. He has CP." So - be forceful. I really hope and pray that it isn't CP. But I do think moms have that gut feeling... Whatever path this leads you down, fight for your child and don't let the doctor's brush your concerns under the rug. If you feel something is wrong or off, something probably is.

[gingersmom]

Ignore the doctor and get a PT/OT evaluations immediately. 

 

The sooner she gets into therapy the better the results. Plus it can take months to get an evaluation and until therapy actually begins. 

[melmichigan]

I would recommend a developmental pediatrician. I have a DD with CP who toe walked, and a DS without CP who toe walks. Regardless of the reason it needs treatment.

[jenncslp]

You definitely need to get it checked.  As a Speech Path that was one sign that I always looked for to refer for PT testing.  With her history that would be a big red flag.   If your pediatrician doesn't refer or you can't go without it, I'd say get a new pediatrician.

[Caclcoca]

Toe walking can also be a "sign" of a language and/or social delay. My ds12 walks on his toes, and he has an Aspergers diagnosis.

[justkeepswimming]

I know a boy with this issue who had to have surgery as a preschooler for this EXACT thing. I don't know exactly what the issue was. He was in 2 casts for a while but the surgery worked perfectly for him. That said, I would absolutely fight to get an eval from someone qualified.

 

:iagree:  ditto this.  We knew a very sweet little girl who had surgery to correct this when she was around kindergarten-age.

[Alenee]

I didn't read all the way through but here's what happened with us. Dd walked tip-toed from the start (9.5 mo) and never went flat. I asked the ped at 5 yo and he sent her to a physical therapist. Nothing worked. We just figured that's how she would be. Then someone like you posted here and I said the exact same thing I just wrote. Someone else then said that it could actually be Tethered Cord Syndrome. Without surgery, it would not be fixable. So I went back to her ped guns blazing and got an eval with pediatric rehab, followed by an MRI (the only way to tell for sure). Sure enough she had TCS and had surgery to correct it within a few months. This was followed by casts on her legs for 5 weeks, changed out once each week to increase the angle, and subsequent physical therapy. Dd now at age 14 walks on flat feet. There are other complications that TCS can cause so please do make sure to get your dd checked out by MRI. It really is the only way to tell for sure.

[gardenmom5]

I would have her assessed by a pediatric OT.  if you need a referral, demand your ped give you one.

[torikei]

This sounds exactly like my older daughter. I really struggled to get a diagnosis. To make a long story short--She saw a physical therapist who decided that I was an overly protective neurotic mother and told me that. As time passed, Dd didn't get better. She tiptoed everwhere and fell 50-60 times a day. I had a gut feeling that she had CP and I talked to her pediatrician. My pediatrician sent her elsewhere and demanded that she receive physically therapy. They referred her to a specialist who diagnosed her with CP. He said it was a textbook case. Should never have been missed. :-(

 

Early intervention is very important so please keep trying.

[Paige]

She needs to be evaluated by an orthopedist. If she only toe walks, that is a real red flag. Is it both feet? If your pediatrician won't refer, I'd ask for a 2nd opinion. My daughter has mild CP and her only symptom when she was little was she almost always toe walked on one foot. She was not delayed physically in any other way and met all her milestones on time. CP can be very mild and easy to miss. Your daughter is so young, that if she is mild, she may be able to have a procedure that will prevent future complications and help her stay off her toes and learn to walk normally. If she keeps it up and her heel cords get too tight, then she will be looking at more surgeries and some irreversible muscular changes. I don't mean to overly concern you, but we did not seek aggressive treatment for our daughter when she was young because she was so mild and we really regret it. The therapists discouraged it and said she was fine. I guess they see more serious cases and think that a little toe walking is no big deal. As she got older, however, she got a lot worse, and when she was 7 we were told that, actually, she'd probably be in a wheelchair as an adult! If we had trusted our instincts when she was 3, she would be a lot better off.

 

I wouldn't trust an evaluation by just a physical therapist or someone similar. We had several therapists insist that DD could not have CP because of how she presented and they also discouraged us from seeking treatment.

 

CP is not the only thing it could be, but with her complicated and premature birth, it should be considered. Occasional toe walking is one thing (I have kids who do that as well), but our neurologist said constant toe walking, especially if she began walking on her toes when she began walking, is almost always neurological.

[LizzyBee]

I have a niece that toe walked, and I kept telling my sister that she had to make her walk flat footed to prevent permanent problems.  Her ped told her it was no big deal, so she listened to the ped instead of me.  Finally, when my niece was 4 or 5 years old and still riding in a stroller because it hurt to walk futher than a short distance, the ped made a referral, and by then my niece's tendons were way short and tight.  She had physical therapy, but she's 17 yo now and still walks funny.  She was unable to participate in sports because her gait made her slow and clumsy. 

 

If your insurance company doesn't require referrals to see a specialist, find an orthopedist or physical therapist who will see you without one.

[Chris in VA]

Mine passed milestones, but cruised on his toes. We were pooh-poohed by the ped. Finally we got a referral and he was evaluated for cp. No cp but we went to pt and and we learned some exercises. Ds did stretches with dh--I couldn't take the crying. His heel chords were tight--in our case, the stretches were not very gentle. After four weeks, he was casted. He actually started walking while wearing his casts. He did not need surgery.

Really wish we had taken him in earlier.

Changed peds after that--the ped didn't treat asthma very well, either.

[Loowit]

My DS started toe walking when he was about 3 years old.  I asked the ped about it but she didn't seem overly concerned.  She sent DS to a specialist to check it out just in case.  The specialist told me that it was idiopathic toe walking, meaning they couldn't find a physical cause for it.  We were told we should encourage him to keep his legs stretched so that his muscles didn't tighten, but I didn't think much of it beyond that.  He did have other things that were concerning and he was sent to be evaluated for autism when he was 5.  We were told we had nothing to worry about.  He was re-evaluated for autism a few years later and they found that he had dyspaxia, loose ligaments, some muscle weakness, and fine & gross motor delays,  He also had sensory integration disorder which they though may be part of the toe walking.  So we did therapy for what we could and moved on with life.  A few years later DS suddenly started having night wetting (he had been dry at night since he was a year old). The doctor said it was nothing to worry about, just don't drink water before bed.  Fast forward to earlier this year.  Night wetting became more common.  He started to have further problems with coordination, and so on.  He was referred to urologist who found he was constipated.  They concluded that the bed wetting was caused by that.  But even with heavy doses mediation the constipation didn't clear up.  Finally he started having stomach pain and we ended up with the on call doctor we had never met before.  She was the first one to put all his symptoms together and figure out that he may have a tethered spinal cord.  She referred him to a neurosurgeon and he was tested and found he did have a tethered cord.  He had surgery in June and his symptoms have slowly been improving.

 

All this to say that if something seems off, it very well may be and getting a second or even third opinion is a good idea.  Toe walking has a number of causes, and it would be best to be investigated while she is still young.  But also looking at all the things that may be going on in the big picture can help narrow down things too.  It took a doctor looking at my DS as a whole to figure out what was going on.  They were treating individual problems, but never linked the things until he was older.  I wish we could have treated him sooner.  We don't know how much nerve damage is reversible at this point, some of it may be permanent.

[Cammie]

I wanted to share our toe walking story.  When my daughter was about 5 and we were weeks away from moving to India her ped noticed the toe walking and immediately referred us to specialists to check for tethered cord syndrome.  Of course we were freaking out because we were supposed to be moving around the world and it was just a crazy time to be dealing with it.  AT THE SAME TIME, but unbeknowst to us, our very good friends' son who was 6 at the time was also being referred to a specialist for tethered cord syndrome.  His symptoms were late bed wetting (I believe) and toe walking.  When life calmed down in both families and we had a chance to catch up we couldn't believe we had all been going through the same thing!  My DD turned out to not have TCS, she did a few sessions of PT and the toe walking eventually went away.  Our friends' DS however, did have TCS, had spinal surgery to unhook the cord and he is now fine.  I think with TCS the longer it goes untreated, the more damaged the cord it and the longer it takes to recover.

 

Moral of the story - could be nothing, could be something.  Go ahead and PUSH for some follow up!

[Donna]

I am a pediatric PT. Some children are idiopathic toe walkers and will come down off their toes around 5yo but the child should be properly evaluated to determine if there is a reason for the toe walking...high muscle tone or sensory issues are common reasons. Toe walking can cause shortened calf muscles and there are a lot of strategies available for helping a child with poor balance who toe walks...early help is best. (I am not in the wait and see camp.)

 

I would suggest having her evaluated by a PT who will determine if there is a reason for the toe walking. A PT can develop a plan for addressing the issue and refer you to the proper specialist if needed. If you are in the US, your state should have an Early Intervention program where you can find a pediatric PT to do the evaluation.

[Ravin]

Another ditto for Early Intervention.

[Alice]

I would definitely recommend evaluation for a kid who only or  primarily toe-walks. Depending on where you live and who is available/good, you could start with orthopedics, developmental peds or Early Intervention/PT. 

 

If you like your pediatrician otherwise, I’d go back or call and say “I would like a referral for this, I am worried.†If they refuse to refer you and you must have a referral with your insurance, I’d switch docs. Regardless, you shouldn’t need a referral for early intervention. 

[mamawaabangi]

Ok so about early intervention... in our area (we are very rural) if they are under age three they will come to you... which is great for now. But, once she turns 3 I HAVE to sign her up for a program called Boces and she HAS to do preschool in their "school" program to receive services. 

Not going to happen.

We dealt with this with our son who was 5 with speech therapy. :-( 

 

BUT, maybe just getting help for a few months will benefit us some and get us headed in the right direction.

[Loowit]

My youngest DS qualified for services when he was little and I sort of got them until they wanted to move him to the school's preschool program.  I was not impressed with the services offered.  I think that we got put with someone that wasn't a good fit though.  We would make appointments for her to come over and she would call try to reschedule at the last minute all the time.  I finally gave up on her about the time we had his meeting with the school to see what they would offer.  I was not willing to put my 3 year old on a bus several times a week to go to a preschool across town with people I barely knew.

 

I think getting the testing done and seeing what your child qualifies with early intervention for can be useful.  However, I would still seek seeing a specialist (doctor) to get a medical exam done.  Then after you know if their is an underlying medical condition or not you can go from there.  My middle son was able to get private physical therapy for some of his motor skill issues, and it was covered by our health insurance at the time.  He only needed to see her for a few months until we learned the skills to use at home ourselves.  So even if you try a few months of in home while you can it may very well me useful in giving you the tools you need to work with her on your own after a little while.

[Paige]

Early intervention is fine for low cost or free therapy once you have identified the problem, but their providers are not doctors and cannot diagnose anything.

[Momof3littles]

I worked in EI as a pediatric physical therapist. I would most definitely call EI directly and ask for an eval.

 

With the child's history, I would definitely start with the eval. Depending on the concerns raised there you may need referrals to other specialists (dev. ped, neurologist, orthopedist, etc. depending on what the therapists observe).

 

When I worked in eval, if we recommended further consultation with a specialist, etc. I usually wrote up a report, which may be helpful to the MD since they will only see the child for a fairly brief visit. The therapists may be willing to put together evaluation reports for you to take to any specialists, and that info may be helpful.

 

But yes, she needs to be seen. The sooner the better in case you are dealing with more extensive concerns than are obvious at this time, and as PPs have mentioned, at age 3 they move into the school system which is quite different in many ways than EI (0-3 yo).

[radiobrain]

My cousin always walked on her tip-toes and she still does at 30. I hear that it is a neurological issue/symptom, and if she doesn't have asberger's she definitely has some sort of neuro. condition. 

 

Take everyone's advice and find another doc!

 

[Donna]

Ok so about early intervention... in our area (we are very rural) if they are under age three they will come to you... which is great for now. But, once she turns 3 I HAVE to sign her up for a program called Boces and she HAS to do preschool in their "school" program to receive services. 

Not going to happen.

We dealt with this with our son who was 5 with speech therapy. :-( 

 

BUT, maybe just getting help for a few months will benefit us some and get us headed in the right direction.

I am not sure what state you live in and how different certain states are but parents have certain rights and though depending on the school district they may have to fight more than others. I know parents who have gotten home based therapies provided by the school and others who take their child in only for therapy without attending the school program. Please find out what your rights are if your child needs services. It may also be possible to get private PT if you have health insurance that covers it.