[Scattymum]

A while ago we made an appointment for my son as he always walks/runs on his tip toes ( he is 3.5) the nurse was a bit concerned about it so we decided to see a specialist.

The appointment was on wednesday and didnt go all that great

First of all Jamie has a bit of an irrational fear of anything to do with been in a drs surgury so he had a major melt down while she poked and prodded him and made him walk, run, sit stand etc.

At one point when she was testing his reflexes with that little hammer he screamed at her *youre FIRED* ( his new favourite phrase LOL)

anyway, after all that she gave us the diagnosis, not really what we were expecting.

He has a muscle problem called hypertonia - the only solution is physio and if that doesnt work then its either an operation or botox injections.

Then she said she wants to refer him to a neurologist for a brain scan as kids that show hypertonia generally have Cerebral Palsy. she was also very interested that Ciara has ADHD, not sure why though

To be honest the diagnosis doesnt bother me in the slightest, now we have one then we can move forward and get him the help he needs, if it is CP then really it is very mild and the hypertonia seems to be the only issue.

what does freak me out is the idea of getting him a scan - i think we will both have to be sedated for that one LOL

anyone dealt with anything like this before?

 

[MOMMYDEAREST]

no i have never dealt with anything like this. but i do want to send you some hugs & prayers. keep us posted!!!

 

[FrugalMomof3]

My oldest son, now 17 used to walk on his tippy toes all the time, never went to see a DR. about it and he stopped doing it all on his own. He was around 3-4 when it started and I would have to constantly tell him to not walk on his tippy toes and tried to explain to him that it didnt look right, I guess he understood because like I said he stopped doing it.

I used to have a friend when I was in middle school that walked on his tippies all the time, he was the nicest boy ever and we became friends even though everyone else thought he was "wierd" but that didnt stop me, he had Cerebral Palsy I think, really dont know I was young and wasnt worried about all that stuff back when I was 11 or 12.

I just want to send you a hug and a few prayers, keep us posted.

 

[JustJoy]

I hve a friend who's child had the 'tippy toe' problem and she was put in casts for a few months.

 

[autumnlynn]

My son had it. He walked on his tip toes on the right side. He had casts and a brace, but it didn't get better. He had surgery to lengthen the heel cord and he has had no more problems with it. The surgery was really worth it in my son's case.

 

[Scattymum]

My son had it. He walked on his tip toes on the right side. He had casts and a brace, but it didn't get better. He had surgery to lengthen the heel cord and he has had no more problems with it. The surgery was really worth it in my son's case.

Autumn, The dr seems to think he will end up with an operation - how old was your son when he had it done? Ive heard it is a very painful op too, what kind of recovery time was it?

 

[i.m.cheap]

I used to walk on tiptoes as a child. In my case, I think it was more of an OCD thing. I was also a compulsive hand-washer. I did outgrow both with no medical intervention.

 

[Mom23boys]

My DS#3 walked on his tiptoes from the time he began walking until he grew out of it around 8-9.

I have a cousin who is 34 and still walks on his tiptoes. He never outgrew his and has no problems. He is otherwise normal and healthy. He does have some very defined calf muscles.

I hope that your son's exam goes well.:hugz:

 

[AmyBoz]

no advice, just :hugz:

 

[IntlMom]

ONe of my boys does this. For him, it's a outcropping of his fetal alcohol syndrome. Part of his "low-tone" muscles. Annoying? yes Big deal? no

 

[Marie78]

When my sister was learning how to walk she used to walk on her tip toes, I am not sure when she outgrew it, but she did.

 

[autumnlynn]

Autumn, The dr seems to think he will end up with an operation - how old was your son when he had it done? Ive heard it is a very painful op too, what kind of recovery time was it?

My son had the surgery when he was three. I was not that painful for him. He was placed in a cast after surgery.
The hypertonia is increased muscle tone. Does he have hyperactive reflexes, too?
The recovery time was about six weeks. They do a z-plasty to lengthen the heel cord.
I am extremely happy that he had the surgery. If you have any other questions, just let me know. We tried casts and the leg brace for a long time before surgery, but it didn't help. My son's doctor is a pediatric orthopedist.

 

[Scattymum]

The hypertonia is increased muscle tone. Does he have hyperactive reflexes, too?
The recovery time was about six weeks. They do a z-plasty to lengthen the heel cord.
I am extremely happy that he had the surgery. If you have any other questions, just let me know. We tried casts and the leg brace for a long time before surgery, but it didn't help. My son's doctor is a pediatric orthopedist.

Thanks for the info Autumn :hugz:

Yes he has hyperactive reflexes
Did they ever mention CP with your son? or mention botox injections as an alternative to an op?


Thanks everyone for your responses and Hugs

It is not something he will grow out of unfortunatly - the longer this goes on without treatment the more his muscles will tighten and walking could be a problem. It appears as if the hypertonia is linked to a neurological *problem*

 

[autumnlynn]

It is a mild form of CP, but that was the only symptom my son had. His learning and speech are fine and he has no other problems. The doctor told me the best news about this is that it is not progressive. He may require a future surgery as his leg grows but that is yet to be seen.

I was not told of Botox as an alternative treatment. The doctor said the heel cord needed to be lengthened.

 

[Scattymum]

It is a mild form of CP, but that was the only symptom my son had. His learning and speech are fine and he has no other problems.

I was not told of Botox as an alternative treatment. The doctor said the heel cord needed to be lengthened.

This sounds like Jamie, speech, learning and all other motor functions are fine, it just seems to be the hypertonia as the only symptom

The Botox I think is fairly new, its injected into the muscle - personally I wouldnt like this as there is no info on the long term effects/side effects.


Thanks for your help Autumn, you have answered alot of the questions i had - its just a waiting game now until the appointments come through

 

[Tracy]

I hope that all goes well for you son.
I walked on my toes until I was 13 years old. And when I finally started walking flat food me tendons never grew to the length the should have been. So I had to go to the doctor and have some special stretch's etc done to help lengthen them. It was painful, but now they are the length they should be although I never learned to run flatfooted so I still run on my toes.

 

[miss_thrifty]

Hugs and prayers going to you . Hopefully it doesnt have to come to surgery but if it does let us know, keep us informed. hhuuggss

 

[pita1213]

what kind of brain scan were they thinking of? a cat scan or mri?
cat scans aren't bad. typically you have an injection and the machine make a whirring noise. if it's an mri, it's a very loud machine. mri's make me jittery afterwards because of the loud banging. i would think they would sedate your son though, or do something to make him feel more at ease since it's hard for kids to understand what's going on.

 

[GMA21]

:hugz: for you & your little one.

 

[YankeeMom]

No info on hypertonia :hugz:

But my daughter had an MRI done, they sedated her for it. I would think for a young child like your ds they would sedate them as they need to be still and I have yet to meet a 3yo who can sit still lol.