Question about speech delay and trunk weakness..

[mommy22pumpkins]

Hello. I have a 7 year old son who went to disbabled preschool for a speech delay and still receives occupational therapy for some muscle weakness and also to help him write and draw. He is in regular 1ST Grade now and doing really well.

But I feel very guilty now I did not advocate for him enough or educate myself enough aobut his condition. I don't know why he has the trunk weakness. I took him to a neurologist once to see if he needed any follow up or if there was anything to be concerned about and he gave us a clean bill of health. But I am wondering if I should be worried or should have pushed for physical therapy for him when he was younger. As he can't run as fast as other kids but can do everything other kids his age can- run jump ride a bike etc. He is in swim class and I just enrolled him in soccer at the YMCA and he is doing really well.

Can anyone offer any advice or tell me where to start? I am just feeling very worried all the sudden that there is an underlying cause and I have not done everything I can to help him.

thanks very much,

Danielle (Mom to Owen 7 and Sara 4)

 

[mechurchlady]

You know your kid has something wrong so fight and if one doctor says nothing is wrong then get another. It would help with his therapy to know what is wrong with him. It could be something serious like muscular distrophy or just a birth defect but you need to know what it is.

I wish I had known about my mother when I was a kid but now that she and I are old I regret some of the things that happened because her sensory issues were not addressed but that is in the past. Your lack of advocacy is in the past and now we burn the past and move on. Eventually others will be around to give you a lot of advice but it is bed time for most.

Big hugs and chocolates to a great mom.
from Laurie

 

[LauraVV]

But I feel very guilty now I did not advocate for him enough or educate myself enough aobut his condition. I don't know why he has the trunk weakness. I took him to a neurologist once to see if he needed any follow up or if there was anything to be concerned about and he gave us a clean bill of health. But I am wondering if I should be worried or should have pushed for physical therapy for him when he was younger. As he can't run as fast as other kids but can do everything other kids his age can- run jump ride a bike etc. He is in swim class and I just enrolled him in soccer at the YMCA and he is doing really well.

Can anyone offer any advice or tell me where to start? I am just feeling very worried all the sudden that there is an underlying cause and I have not done everything I can to help him.

My advice: STOP IT! Quit beating yourself up. It doesn't make things better. It doesn't fix anything. Ask yourself a couple of questions. Do you love your child? Did you try to hurt your child? Have you done the best by your child with the info you had? OK, I'm guessing the answers were #1 Yes, #2 No, #3 Yes.

I have a child who was very, very premature. When she was a baby they offered us PT. When I asked what it'd do to help her they said, "Uhh, don't know, probably nothing." We gave up the PT. She's had short term PT and OT over the years. You could have an evaluation now. I will say that we've had much more improvement with fun things like horse riding than with with therapy.

As to what's wrong....my daughter's tone issues have always been blamed on her prematurity and mild CP. But...I've developed the same tone issues. My ankles are tight and my trunk is weak. So, I don't see how we can blame her prematurity for these issues.

Does your child have any other health issues? Anyone else in the family? Any depression in the family?
www.umdf.org
www.our-kids.org

 

[Schmeck]

You have to decide if the trunk issue is a major concern or not - is it affecting his socialization, his learning, his basic health? You say he can ride a bike, swim, play soccer, etc. so it seems that physically he really doesn't have a big problem. Is it important to you that he can run fast? Is it important to him? Does he express frustration for not being able to run as fast as the other kids? Will this condition degenerate if not given therapy?

I'd consult your pediatrician, and ask for a referral to a specialist if necessary. If it were my child, and he was participating in sports, wasn't frustrated about it, and didn't seem to be worsening, I'd let him be. We all have our strengths and weaknesses - it's great to work on our weaknesses, and it sounds like he's getting help doing that already.

 

[AlternateEgo]

My youngest daughter has "low muscle tone". She is 3 years old now and goes to a special needs preschool. I have had her in physical, occupational, speech, and developmental therapies. It really worked wonders for her.

I started noticing something was "wrong" when she was 15 months and just started crawling. This was also when I found out she had an intollerance for milk. Her doctor, at the time, insisted she was fine, but the health department was able to give me a referral to get a screening.

So to make a long story short, never accept what your dr has to say if you still feel sick about it. Just get a second opinion, it will never hurt.

 

[dyna]

You might check into hippo therapy (horse back riding) if the weak trunk muscles is really an big issue.

MY 20 month old gson has a very very mild case of PVL very simular to CP an it's been recommended we get him on a horse to build trunk muscles. I can't say DD can do that right now but prolly when he's older we will.

 

[h518may]

You might check into hippo therapy (horse back riding) if the weak trunk muscles is really an big issue.

MY 20 month old gson has a very very mild case of PVL very simular to CP an it's been recommended we get him on a horse to build trunk muscles. I can't say DD can do that right now but prolly when he's older we will.

My DD(3) has low tone and we do Hippotherapy. Actually DD is seeing an OT that uses Hippotherapy. DD rides a horse for half the session and works on more OT specific concerns for half the session. I love that even though she is not getting PT right now the therapy is helping with balance, stability and tone.

 

[SueM in MN]

since this is not about WDW travel, I am going to move it to the disABILITIES Community Board. I will be more on topic there.

 

[bonybroad]

Hypotonia?
You can google that. You'll get lots of answers.
Hope you find the answer you need

 

[lvanleer]

I just saw this thread and had to post my story.....when I was born I was diagnosed with something similar to cerebral palsy.....my speech was affected and my abdominal and leg muscles are not as strong as they should be however I had speech therapy from the time I was approximately 3 till early elementary school which helped with my reading also so much so that I was an advanced reader by the end of first grade....in addition I couldn't run as fast as the other kids....took me till high school to be able to ride a bike(you'd be surprised how quickly you learn to balance when your boyfriend teaches you).....still have a hard time doing sit-ups because of my muscle tone and my feet still turn inward when walking unless I really think about it....I guess my point is that if he's developing normally in other ways like being able to ride a bike, swim and play soccer I'm not sure that I would be as concerned with him not being able to run as fast....he just may be talented in other ways....surprisingly in my case I had great hand/eye coordination which led me to be good at playing the piano, throwing a softball, and although I have problems driving a golf ball I can putt without any problem....just find physical activities that he would enjoy.