My daughter was diagnosed with hypotonia at a year old. She is now 15 months old. We have had an MRI and genetic testing which both came back normal. We are currently using Early learning institute for OT, PT and Speech therapy once a week plus we incorporate therapy exercises into our daily routine. We absolutely love our therapist! Aurora was born with craniosyntosis and pierre robin complex (without cleft, basically she has a small lower jaw). Went through helmet therapy for 7 months. Neither of these issues were found to be the cause of her low muscle tone. Our neurologist said we may not find out the root cause until she is 5 years old bc that is when the gap between kids increases. My question is has anyone actually gotten a diagnosis for their hypotonia?
Please check out your water and foods, if your daughter has been exposed to fluoride, this can cause just such maladies. Please don't use nursery water, as the fluoride is very toxic.
Best wishes and blessings!
I have two kids for whom part of thier developmental delay included hypotonia. They were both very flexable, I could bend their legs way over their heads when I diapered them. As they grew, they tired easily and had some typical issues like leaning on objects instead of holding up thier own weight, and odd gate.
You may have a completly different diagnosis than they have, and I am sure that there are kids who don't have delays that fit a specific diagnosis and still are hypotonic. Just be very vigilant at watching for milestones, and it sounds like you are already. If you get state sponsored therapy, also get private therapy, or vice verca. You can't get too much!
One thing we found after years of going though these kinds of issues is that ultamimately, the therapy you get for any issue like hypotonia will not likely change if you have a diagnosis, and most therapy is given based on the need or symptom of the child. I know that does not cure your need to know, but you can rest assured that if you are addressing all the issues you see and you are actvely looking for anything else that needs attention, you will not be failing to do anything that your daughter needs, just because you do not know the root cause.
M.
Sorry to here this! My daughter was diagnosed with BENIGN CONGENITAL HYPOTONIA at the 1 yr mark. My child also has had a LTE and has seizures. Though she is currently 7 yrs old and has made mark improvements, she is experiencing issues with certain skills when it comes to school work ( Dr's can't find anything else wrong nor give me answers to it's link with HYPOTONIA). However, they can link it to seizure activity even though she has has been episode free for 2 yrs. As of now, my child has failed in areas of PE, ball skills and such. The DR continues to ignore this factor and insists that the school has to take her history into consideration. They don't know the outcome but feel confident that most children that are diagnosed with HYPOTONIA will indeed be able to live a quality life, just deal with the ups and downs (so to speak) as the occur.
As a mother, our natural reaction is to freak out, question the outcomes, push for a diagnosis when nothing else can be found/done and at some point feel totally helpless. We tend to think that if we push we can make things better when we are infact just tourchering ourselves and taking that valuable time away from our child/children. I have learned to be very observant, I make a diary mostly daily of events, and let my child enjoy life as she should! As time goes on, you will realize that your own situation is unique as no two persons or diagonsis are similar. I am just lending you my experience, we are not alone and have to be thankful for any opinions that are put forth our way! Wishing you and your child the best in life!!!!!!
My daughter has Down's and she has low muscle tone. She also has a small lower jaw. Some of the other features she has is depressed nasal bridge, the flatness of the skull in the back of her head (brachycephaly), the simian (sp?) crease in one of her hands is one straight line across. I am glad to know it's Down's on the front of we know what disorders are common and what needs to be addressed and looked at.
However, the downfall to knowing a diagnosis is the label and trying to live to the label. Labels can be more disabling than the diagnosis itself. You are doing great addressing things on an individual basis. You may be better off just going the route you are and not knowing a label because it forces you to focus on your child for who your child is. They will go farther in life by being expected and push for the "norm."
I changed pediatricians when my first one told me what limitations my child would have. To live by limitations sells her and God short. We didn't know she was Down's until she was two months. We had already accepted our "normal" child for who she was, and it was harder to break out of that mold. She is high functioning now and I attribute a lot of it to us staying in that normal realm not imposing limitations on her. Keep up with what you are doing. Even if you had an official diagnosis, you wouldn't want to live your life any differently. Sometimes it gives peace. Sometimes it gives limitations.
An interesting concept I am researching more is the Neurodevelopmental Approach to Learning by Linda Kane. I highly recommend it.
God bless you. You are a great parent.
My 5-y-o son has low tone, too, all of his OTs have said (and worked on), but no one has ever given him a diagnosis. He gets services based on his developmental delays, so it has never been an issue. I agree with the poster who said you can never get enough OT -- it's wonderful for kids! Sometimes it seems like a long haul, but my son has (very very gradually) made amazing progress. Best of luck!
My daughter was diagnosed with hypotonia at birth. She is now 14 months old, still does not have a diagnosis. We use TELI for OT and PT as well. Are you aware of any support groups/resources for hypotonia in the pittsburgh area?
