Hypotonia

V., My name is S.. I've been a pediatric occupational therapist for 24 years. I have worked with probably about 500 or more children with hypotonia. It is very common. The term hypotonia is more of a medical description of a person's muscle tone that is low or "floppy" or the muscles may feel a little mushy to the touch. Low muscle tone can make a person tire easily or seem low in energy and can cause a lot of developmental delays. Hypotonia can be caused by numerous things, i.e. low oxygen at birth, heredity or other neuromuscular disorders or syndromes. Most often it's just heredity. It's extremely common and usually there is no other medical diagnosis with it. Ask your doctor about possibly getting your baby evaluated by a physical or occupational therapist (OT). I've worked with babies in neonatal units all the way up to 5th grade children. Depending on how developmentall delayed your baby is (i.e. head control, creeping, pulling to stand,taking weight on the legs or arms, etc.)will determin the frequency of therapy.
I typicaly saw children about 2 times per week at the hospital or clinic for 50 minute sessions. If your child works well with the OT and you can watch the therapies, you'll learn so much on how to work with your child at home. Following home programs from your OT is VERY important and can be fun. Get the whole family involved in doing home program "games". Sometimes it takes about 6 months of therapy. Just think how it would be if you wanted more muscle tone (to improve looks, energy, strength,...). If you joined a gym and started exercising, it would take about 6 months to start seeing results. It takes time and commitment, but it is so worth it. I worked with many children who did not get early intervention and it really effected them in school, especially for writing, reading (eye tracking) and sports.
Begin by making your baby crawl or creep to get to what she wants (place the toy at a reasonalbe distance so she can experience success before getting tired and frustrated) then increase the distance to the toy gradually every day. Instead of picking her up, make her crawl to you and make her use her own leg and arm strenth to pull up to you. Don't carry her too much. Fast swinging, fast bouncing, spinning or any other rapid movement helps to stimulate muscle tone. Get her moving! Good luck. S.

Dear V.,
I agree with the previous responses that "hypotonia" is a symptom and not a disease in itself.
You and your pediatrician or regional pediatric clinic need to be very, very aggressive in identifying the cause. The sooner that you know the cause, the sooner you will have tools with which to fight the cause. You could be dealing with a more minor form of cerebral palsy which is not progressive or you could be dealing with a muscular distrophy which is progressive and deadly.
Having said that, I think that the next most important thing for you to do is to locate your local health department/town's Early Intervention Center (hopefully you have something like that) and/or a local UCP (Easter Seals) preschool. Learn physical therapy exercises (lower body/large muscle groups), occupational therapy exercises (upper body/smaller muscle groups), and speech therapy (mouth, neck, speech, feeding, upper body) exercises to do with your baby. Do them several times a day offering lots of praise and positive reinforcement to the baby. Make it fun!
If your pediatrician/insurance company/spouse are not supportive of your demands for more information and insisting on therapy, you need to push them harder. You are the strongest advocate your baby will ever have.
The more stimulation that the baby's brain receives, the more the brain is likely to develop.
Find infant stimulation toys (push a button to get music and light responses) and teach the use of these to the baby. Ideally, s/he will then be able to reinforce these exercises himself.
Avoid TV. The American Academy of Pediatrics doesn't recommend TV for any child under 2 anyway. Even shows like Little Einstein decrease muscle tone because the child is just sitting there.
I, personally, would divulge as much information as I could to as many people as possible in order to obtain as much information as possible. It might be that there is a little-known genetic disorder in your families that no one ever discusses or remembers. It might be that there is another pediatrician in town who is more aggressive in pursuing diagnoses. If you don't share your situation, you'll never know about others' situations.
By explaining your baby's hypotonia, you'll be able to explain why you are trying to avoid TV and increase your baby's activities (therapies) when you are with your peers.
If the baby's muscles are hypotonic, it does not automatically mean that the baby is intellectually developmentally delayed also.
Good luck and have fun playing with the baby A LOT!!!

V.,My son was diagnosed with hypotonia around 15 months. However, he had other symptoms going on...not talking, not walking yet, strabismus (eyes crossing) etc... We started therapy services right away in our early intervention program. However, our son continued to regress. For us, after several tests it turned out to be an extremely rare genetic disorder. A progressive neurologial disease. I'm not telling you this to scare you but rather for you not to take this lightly. You didn't mention if you had started therapy services for your child. Also, you didn't mention if he/she had met her milestones on time...Is he/she crawling, babbling etc? It sounds like if you are having to research hypotonia that your doctor hasn't given you much information. Perhaps it is very slight hypotonia and she is doing well otherwise and that is why. Sometimes children are a little hypotonic and they develop completely normally, however other times it can be an indication of something else going on neurological. Whatever the case, as far as feeling you have to explain to other moms your child's condition...I think you should not feel obligated nor feel ashamed if you want to share. I was in a similar situation with my son. I was in a music play group and it was apparent that my son was losing muscle control and having trouble sitting up etc...I told everyone my concerns and it actually made me feel better because then I didn't feel like people may be commenting behind my back. Also, it gave me support and many people started praying for my son for healing. My son is a special child. He's a fighter and my hero. He's blessed me and others in ways I can't even explain.

I hope this helps. K.

Research as much as you can thru the internet and the library. YOU can also call ST. JUDES Hospital and they will give you information. I ussed to have the 800 # but you can go online and get it. Please let me know if there is anything I can do to help you-my prayers are with you

Hypotonia is low muscle tone. It can show up by itself or can be linked with other developmental problems. If you are not recieving services from your state's Birth to 3 early intervention system, you could arrange for a free developmental screening. Then you can get a handle on exactly how her/his development is proceeding, get some therapies in place to facilitate improvement, and determine if there is an underlying cause for the low muscle tone.

V.,
I agree with what the other suggestions have been thus far.
I also think by saying that your child has 'special needs' is not negative in anyway. It allows the other person to have compassion and hopefully understanding during your playdate time.

After all they are still BABIES and ALL babies develope differently. If you have heard it once, it is the truth.
Some children learn faster than others in certain areas but are weaker or struggle in other areas.

I agree to that you can just simplify things by saying the baby has low muscle tone and you are working on getting OT therapy (Which I am SO surprised that whomever diagnosed your child didn't immediately give you an order or RX to do so)
Maybe they did and you didn't mention it. Nonetheless OT at your child's age will help him eventually catch up with children his age. The first 2-3 yrs the child is going at his or her own pace, that is often the reason some children do things before other children.

V., no matter what, you don't have to "HIDE" nor be ashamed of this circumstances. I am sure you have a beautiful child who is loved with with all of your heart.

Do what is BEST for you and your family.
Don't let anyone make you feel bad about this, things happen and the most important thing is that you have a diagnosis and that is some help out there.

From one V. to another,
Have a GREAT day!

V.~

Hi V.,
I didnt know what hypertonia was so I did a search on yahoo and found this

Hypotonia is a condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, but diagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child's development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy to help the person compensate for the neuromuscular disability.

Hypotonia is a condition that can be helped with early intervention.

You can find lots more helpful info here http://en.wikipedia.org/wiki/Hypotonia
where the above information came from.

I think I would only give out information about his/her condition on a need to know basis. To professional medical people the more information they have the better they will be able to help your child. To other people just what you feel comfortable telling them. Look for a support group in your area for hypertonia. If there isnt one maybe you could start one.

Never feel ashamed of your childs condition. Let the child know that God made them that way for a reason and that God gave them to you because God knew that you were a special kind of mom who loves them very much and always will no matter what.

Good luck. I will keep you both in my thoughts and prayers.

there are many dieseases and or syndromes that involve hypotonia and that basically means poor muscle tone which my 20 year old has.she was prader-willi syndrome.I personally would inform people of the condition for health issues becouse it might effect your child better or worse than mine and nobody wants there child hurt.just to name a few that way you can better understand by diganosises hopefully:allen hernden syndrome,tay-sachs disease,hiv,cytochrome c oxidase disease,prader-willi syndrome,childhood medulloblastoma,down syndrome,megalcornea mental retardation syndrome,coffin sirris syndrome,acardi syndrome,chromosone 5 trisomy 5p,dystrophy myotonia,fg syndrome,nuropathy,central core disease,mucobpidosis iv and many more diseases that have hypotonia there fore its very importen that they have the necessary information becouse each disease is very different.best wishes and hope you get the answers your looking for.regardless of disorder,syndrome or disease you are a gifted mother and have a wonderful child that deserves the best never feal that you are presured to indulge information unless you need to shair or feel it benifets your child.just make sure your child gets the services he /she needs.hypotonia is a symtom and could be a underlieing cause for somthing else thats why I sugest you inform Doctors,Theropists,setters not just any one but those you feal will benifit your child.I do sugest that you see a nureologist,and theropist to help you child be all he/she can.

Hi~
Sounds like you got some really sound advice, but I wanted to 'chime in'. I'm 50 (almost 51), wife for 32 years, 'Mom' for 31 (to 4 grown kids), and daughter #1 has given us 3 little 'grands'.

Anyway, I grew up in a very sheltered life and was never around very many handicapped individuals. I now wish I would've been. They make our world so much of a better place!

My first job was living in and caring for a neighbor family (older couple with a middle-aged daughter paralyzed with MS). We named our oldest daughter after her.

Our first son (second child) is partly named for a sickly gentleman who my husband cared for when he worked at our local hospital early in our marriage. Our second son is partly named for my uncle who was dying with cancer.

I now work with 2 mentally and physically handicapped gentlemen, and it is a joy.

My husband's brother has had a seizure disorder most of his life, so he (hubby) learned empathy early on (worked in Special Ed. for several years and now works at a different medical facility).

I said all that to say this. We who consider ourselves 'normal' have all kinds of emotional dysfunction that renders us 'handicapped' as badly as anyone with a physical or mental condition! Let your son's/daughter's condition bring out your soft-hearted nature. Don't worry about what others think. It simply doesn't matter, except I agree that divulging as much as you feel comfortable telling is therapeutic for you and for whomever you're talking to. It fosters empathy, understanding, genuine thoughtfulness/concern (among the adults AND children), and helps everyone to 'connect' (which is very important to me, personally).

I dont know alot about hypontonia. i know it means they dont have alot of strength.. and kind of floppy. i have a really great support group that i visit. there are a ton of kids on there that have it. the moms are wonderful at asking questions. its called special child exchange. there is a link to it on my blog http://joyboytinkertoy.blogspot.com its the one that says sce..its also called parent2parent. theres also a group on yahoo.sce.. hope this helps. do you live in tennesse? im getting ready to move there just wondering

Check out these sites

http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm

http://en.wikipedia.org/wiki/Hypotonia

http://www.mamashealth.com/muscle/hypo.asp

Book from Barnes and Nobles:
Neuromuscular Disorders of Infancy, Childhood, and Adolescence : A Clinician's Approach
by H. Royden Jones, Darryl C. De Vivo

I only read a few sentences from each site, but it sounds like physical therapy is the best thing for your child. Physical therapy will help build up the muscles to make them stronger and work better. This will be something he/she will have to do their whole life. You can also do these exersices at home, just make sure the physical therapist shows you how. I also saw a few sites made for parents as a support group; you should try that. Your child might lag behind in muscle strenth, but she/he still has a mind; and they have will power, determination, and knowledge, which is the greatest strenth of all.

Hello, I completely sympathize with what you are going through and will say a prayer for you and your child. I have a child that has hypotonia. She was diagnosed at about 8 months old. She is my fourth child in age out of six. The doctors are pretty sure it was a result of Jaundice at birth. We saw neurologists from Childrens hospital in Philadelphia who told us that she would always be clumsy and awkward, never being the "star athlete" but with extensive therapy, would do well. Needless to say, we qualified for a wonderful prgram from Kencrest in our Philadelphia area. She had therapy 3-4 times a week (speech therapy-even though at this young age doesn't really make sense, but she had a difficult time drooling, breast feeding and holding her chin droopily) She also had occupational and physical therapy. She was released from therapy right before her fourth birthday. It was a lot of work however, her prognosis is unbelievable. She just turned 12 years old and needless to say is in no way awkward or clumsy and a matter of fact is the "star athlete" they said she would never be. She is a pitcher on 3 softball teams and considered the MVP, she is also a field hockey and basketball player. She plays the flute and violin beautifully and you would never know that she had been diagnosed with this. There are, however a few minor issues that still remind us. One being the way she holds her pen. She does lack some minor fine motor skills, but don't we all..lol... Another issue we are dealing with that could be a direct factor from this (or maybe not) she has been having some social skills issues which we are seeking treatment for athough it is very minor. This could just be a result of being the 4th of 6 children and where she falls in the family order, so to speak. Anyway, I felt compelled to tell you that hypotonia can be corrected and please keep positive! My daughter, as every child is a gift from God and everything will turn out for you and your family. If you ever need any support from a Mom who cares, please feel free to email me. I wish all of you the best and remember, your children are a gift. Everyone has different crosses to bear, so to speak and with the right attitude and help from both physicians, family, friends etc. all will turn out perfectly!!

PS. I have also read that Michael Jordan has a form of hypotonia.

V.,
If you havn't yet, I would definately get an MD order from your pediatrician for Occupational Therapy and Physical Therapy Evaluations. The therpists can work with your child and also work with you to teach you activities you can do with your child to improve thier muscle tone, coordination, whatever their needs may be. I don't know where you live but in Ky there is a first steps program for children birth to 3 where the therapists will come to your home. The sooner you get your child involved with therapy the better. Good luck.

My youngest daughter was originally described as "floppy" and was eventually diagnosed with a neuromuscular disorder. Have you seen a neurologist? Even if you have, you might want to see another so you can find the source. I could be wrong, but I don't think hypotonia is a complete diagnosis.

I think you should tell other people whatever you feel like divulging. You don't have to tell them anything.

V.,

From what I've read on WebMD.com, hypotonia seems to be a symptom for another disorder/disease.

I hope someone else can help shed more light on your question.

hi my son is 5..is diagnosed with hypotonia...he walked at a very late age...but my son also has other issues..i just know that they woill have to work their muscles more...and they will tire easier..

http://www.groups.yahoo.com/TiptonCountyMoms

We haven't found a root of our hypotonia. My daughter was diagnosed at a year old and is now 15 months. We had a MRI and genetic testing which came back normal. We may never know. My advice for you is to get an evaluation by an OT, PT and Speech therapist. In PA they have a service called Early Learning Institute. It is free and they come into your home to teach you exercises and monitor progress. It has helped us out tremendously. We try to incorporate therapy in everything we do with her. She has made great strides and her core muscles are strengthening. She couldn't sit up before this. Now she can sit up as long as she wants, feed herself, hold her sippy cup and much more. Good luck!!

http://www.encyclopedia.com/doc/1O87-hypotonia.html

It sounds like you have many challenges ahead. I will pray for many blessings as well.

I noticed that there are some yahoo groups that are designed to support parents of kids with hypotonia. Just go to www.yahoo.com and then click on Groups in the left column. Then search for a group with the keyword hypotonia and see if there is one that you would like to join and learn from other parents. Good luck!