Muscle Tone

[CorpsmanWife]

My DS went to see an Ocuppational Therapist last week. She said he has a mix of high and low muscle tone. He is 5 months and has a problem holding his head up and doesn't use his arms to support himself. She also told me he may never walk. They never said he can't so I believe my son will walk, it may not be when babies typically walk. Does anyone have experience with this? Any success stories? I have to get everything worked out so he can start PT very soon.

[GA1977]

My twin sister had twins....her little girl was born with hypertonia (no muscle tone) "ragdoll syndrom"....very limp and not moving or responding, etc. She was the first to walk (before her twin brother), she is a wee bit bigger then he is too. She is the toughest and fiestiest (is that a word) little thing there is (they are 3.5 years old now) !! Get a secondn opinion!

[Gwenn]

I know it all depends how it was said, but I am disturbed that the OT said that to you. I have worked with kids up to 14 years who don't talk at all, and even when asked point blank by parents I talk about what steps we need to take to help the child communicate more effectively, rather than just tell them their child may not ever talk. Outside of looking at what do you need to work on to help the child, this comes off a bit like a scare tactic.

[runningmomofmany]

I think at 5m old your little man is full of potential! At 5m no one has a guarantee that they will walk, so many different things can happen. But he should be treated as though he will and given every opportunity to thrive. I would be very wary of going back to some one who said that about my child, unless they had a crystal ball, they can't say it, IMO.

along the same lines as what Gwen said, I have a friend with a son with cerebral palsy and a seizure disorder. Of course at 5m they had no idea how he was effected by the CP, but his parents believed he would walk and diligently worked with him, had regular PT and OT, massage, even bought a hyperbolic chamber for home treatments. He is 14 now and still not walking independently, but they still haven't given up on the idea. He is still in PT, OT they still work with him at home. THey remodeled their house to put in an elevator and a gym so that he can get his therapy at home, and so he can get around the house independently. Everyone at the local costco knows them because this is where he goes to practice walking (she is quite a show, 5 boys, one in a walker, 2 toddler girls with down syndrome and a service dog). I'm sure things would have been "easier" on some level to have just said at the beginning that he couldn't walk and not put in all this effort. But I do think this little guy has a quality of life he never would have if they had assumed at the beginning he couldn't accomplish anything.

[Babidol]

One of my good friends has a daughter that also had a mild form of CP and very low muscle tone. She went through lots of therapy and still has to work on her muscle tone but she's now in the 5th grade and is normal in almost every aspect of the word. She has had some surgeries to correct her ankles and such but otherwise is fine. I think it's wrong that they told you that

[CorpsmanWife]

Thank you, ladies, for all the kind and positive words. I completely agree with you all. The more it has set in the more I'm disturbed that she even said that. My DS has a seizure disorder and we are working on figuring out why. His developement is a little behind and my neurologist actually told me there was a possibility that he may have intellectual disabilities. You all can imagine the amount of stress I have been through in the past 2 weeks. Everyone wants to tell me worse case senario for some reason. I am trying to get a referral to see another neurologist. She is very dramatic!!

I don't understand how someone can say a 5 month old may never walk or have intellectual disabilities. Ugh!!

[Suja]

I don't understand how someone can say a 5 month old may never walk or have intellectual disabilities. Ugh!!

They probably do have to tell you what the worst case scenario is, in order to ensure that you are fully informed. A LOT depends on how the information is conveyed to you.

[Gwenn]

They probably do have to tell you what the worst case scenario is, in order to ensure that you are fully informed. A LOT depends on how the information is conveyed to you.

They can know if a child is at risk for intellectual disabilities, or at risk for a condition where walking might be difficult, and as a professional they should convey that to you. But with a few exceptions, it is NOT okay to say "never." No one has a crystal ball. And even "intellectual disabilities" can run such a wide range that the doctor couldn't tell you what that is going to look like in terms of learning.

[CorpsmanWife]

They probably do have to tell you what the worst case scenario is, in order to ensure that you are fully informed. A LOT depends on how the information is conveyed to you.

We figured it was probably hospital procedure. I'm just not sure where they get this when my DS is a very happy and healthy 5 month old. He has seizures sometimes and is taking meds that sedate him. I think the meds play a role in his development. He sleeps so much, so he hardly has time to learn.

[CorpsmanWife]

They can know if a child is at risk for intellectual disabilities, or at risk for a condition where walking might be difficult, and as a professional they should convey that to you. But with a few exceptions, it is NOT okay to say "never." No one has a crystal ball. And even "intellectual disabilities" can run such a wide range that the doctor couldn't tell you what that is going to look like in terms of learning.

His neurologist actually used the term mental retardation. We have no evidence that anything is wrong. We are waiting for lab work and MRI was perfect. They want to do another MRI to check for metabolic disorders. I'm just not sure if I want to sedate him and intubate him. He's so young! The last MRI was done at 7 weeks old. I was able to nurse him and he sleep through it all.

[Gwenn]

You said he is having seizures and they aren't sure why, so it is true that he is AT RISK for those things. Of course, that doesn't mean anything will happen for certain but given the combination of mixed muscle tone and seizures, the doctors do have cause for concern. I would take their advice as far as diagnostic tests go, because if there is anything you can do now that would prevent future problems, the benefit of treatment early far outweighs temporary discomfort from an MRI.

[CorpsmanWife]

Do you know what it is about mixed muscle tone that puts him at risk? I've been trying to research it but can't find anything. I want to know how the seizures cause this.

[DucksLikeRain]

Mixed muscle tone can be indicative of what is called Dyskinetic CP. Learning disabilities are associated with the majority of patients presenting, with the degree of disability increasing with their degree of physical impairment. That said, it's the majority, not a given. Also associated with Dyskinetic CP is seizure disorder. Given that your son has a seizure disorder without an otherwise known cause AND the mixed muscle tone, Dyskinetic CP would be what a doctor/medical professional is leaning toward which would lead them to the intellectual disabilities part of things. That said, like Mandy mentioned-saying "never" is absolutely inappropriate. Letting you know of probabilities and highly unlikelies is one thing but absolutes in a 5 month old that hasn't been given a definitive diagnosis? That wouldn't sit well with me. I would make sure and address that, but I would also follow the diagnostics advice because in CP early intervetions are so important. The benefits of those interventions usually will far exceed the risks of sedation/MRI/etc.

[runningmomofmany]

Do you know what it is about mixed muscle tone that puts him at risk? I've been trying to research it but can't find anything. I want to know how the seizures cause this.

In most cases seizures are a symptom, not a cause.

[Gwenn]

Mixed muscle tone can be indicative of what is called Dyskinetic CP. Learning disabilities are associated with the majority of patients presenting, with the degree of disability increasing with their degree of physical impairment. That said, it's the majority, not a given. Also associated with Dyskinetic CP is seizure disorder. Given that your son has a seizure disorder without an otherwise known cause AND the mixed muscle tone, Dyskinetic CP would be what a doctor/medical professional is leaning toward which would lead them to the intellectual disabilities part of things. That said, like Mandy mentioned-saying "never" is absolutely inappropriate. Letting you know of probabilities and highly unlikelies is one thing but absolutes in a 5 month old that hasn't been given a definitive diagnosis? That wouldn't sit well with me. I would make sure and address that, but I would also follow the diagnostics advice because in CP early intervetions are so important. The benefits of those interventions usually will far exceed the risks of sedation/MRI/etc.

All of this, and as another poster stated, the seizures are not causing the mixed muscle tone. They are both the result of underlying changes in his brain, which is why the MRI is indicated. Two things can lead to learning difficulties: changes/differences in the brain, and effects of continued seizure activity. So the doctor wants to do the MRI to determine if those changes are there, and if they are, to what extent. Knowing what that looks like will help predict what type of delays, if any, to expect and work to prevent.