"mild hypotonia" any stories of progress? Andy advice?

[vitar82]

My daugher is 7months old and was just evaluated by PT for failing to meet her gross motor milestones (can't roll over/push up yet) They also mentioned that she has some delay in fine motor skills as well. My ped called her hypotonia "mild." She is by far not a floppy baby, has normal tone at birth and now can somewhat sit unsupported for a minute or so prior to falling over. Overall her diagnosis is hypotonia and torticolis presumably causing these delays. I have a hard time coming to grips with what all this means in the long run. I had an uncomplicated full term pregnancy but she was born 5lb 4oz for some unknown reason. She is gaining weight nicely and seems normal with her social development and can bable in 2 sylable combos. Hubby and I were tested for many gentic conditions pre-conception so I know she cannot have any Ashkenazi related metabolic problems or CF. I want to know if any other moms out there have babies with "mild hypotonia" and any of these other problems and how their babies are doing, or what they have done to help their babies catch up.

[sbgrace]

My son entered early intervention at seven months too when he missed his rolling over milestone. He was/is mildly hypotonic. He was late to hold his head up too though so rolling wasn't his first missed milestone. He qualified for OT too for fine motor stuff. He got rolling soon after and didn't miss anymore until we got to jumping! So he walked on time (late edge of normal on time) and etc. He wasn't able to jump off the ground until he was much older than typical. I want to say after age four. I *think* jumping is something often quite delayed in low toned kids. He was late to do coordination type stuff too like pedaling (I think it was a combo of the hypotonia and the coordination).

My son got his mild hypotonia from me but I never realized I was hypotonic until he was diagnosed. I had no issues growing up whatsoever except, like many of those with hypotonia, I'm relatively uncoordinated. Nothing that caused any major issues.

My son was diagnosed at 3.5 with a metabolic condition that is behind his hyptonia. The way it manifests in kids is such a wide range and I likely have the same condition. If you start to see other things going on let me know and I'll get you information about metabolic stuff. FWIW, my son was sick. He slept a lot, had severe reflux (throwing up blood), was failure to thrive, and on. I guess I'm saying his path isn't yours!

[UptownZoo]

The course of your child's motor development will, of course, depend on the underlying cause of the hypotonia (which is not a disorder in itself, but a symptom), but there is certainly cause for plenty of hope! My youngest son, Carter, is 7 years old. He was a very floppy baby with delayed motor skills (fine and gross) and mild/moderate hypotonia was dx'd at about 9 months. He's also weaker on his right side than his left and was dx'd with dyspraxia (motor planning dysfunction) when he was 2.

TBH, he never got as much OT and PT as he needed and we never focused a whole lot on his motor issues since his emotional issues have always been front and center. However, as he grew, his gross motor milestones arrived closer and closer to on time. So he held his head up and rolled very late, crawled moderately late, and walked a little bit late.

These days, although his delays are very obvious to knowledgeable professionals, most people can't see anything different except that he's very cautious and he gets tired faster than other kids. He'll never be an athlete in the traditional sense, but he can run, ride a bike, and I'm sure he could climb if he wasn't so scared of falling.

Stick around; I get the best information here of anywhere I've ever been! For now, are you in the process of getting her some OT and/or PT? A good OT is the person who can teach you all the specific things that you can do at home with your DD to help her development. Did your ped refer you to a neurologist? Order blood work?

[Purple Cat]

I have to keep this short, so I'll focus more on things that helped, rather than my son's history.

First, I'm very glad I kept my son on the floor as much as possible and got rid of the exersaucer, jumper, etc.. We didn't go for stroller rides even because I wanted him to be doing things that worked his muscles. I sat with them (twins) on the floor, and play with them. The floor forces/enables them to develop their muscles more.

Second, swimming/aquatherapy. Children can work harder and longer on strengthening their muscles in the swimming pool. Swimming is also a sport that children with hypotonia can excel.

Third, hippotherapy (horseback riding) and other core strengthening exercises, such as sitting on exercise balls.

Core and shoulder strength are pivotal for writing and fine motor skills.

[earthmama4]

My now 11 year old was dx with low muscle tone at 11 months. Wasn't getting into a sitting position from the floor or crawling or pulling up to stand. He had PT for a few months in our house and by 15 months he was RUNNING.

He has struggled with fine motor and gross motor skills and coordination throughout childhood. Couldn't write his name or tie his shoes by kindergarten. Runs fine, but can't catch a ball well, falls and trips easily, took him a long time to ride a bike, his handwriting is terrible. Academically he is brilliant, gifted really. He has a fantastic memory and vocabulary. He meets the criteria for Aspergers but is not an official diagnosis at this point. His 13 year old brother has Aspergers and did not have hypotonia as an infant, in fact he met his gross and fine motor milestones early.

[vitar82]

Thank you ladies. I am already schduled to have PT/OT for her, just got the name/number of my PT today. No lab tests yet, my ped feels that she is just barely behind normal and is not at concerned as I am at this point. I wonder how many kids have no underlying cause and are just weak. I do wonder if I am hypotonic myself now that this issue has come up. I am very uncoordinated, never learned to ride a bike sat in W pose most of my childhood b/c other positions were not confortable and have a few hypermobile joints. I am totally ok with her not being a prima ballerina!!

[AquariusHome]

My DD was like yours at that age - late to roll, crawl, hold her head up, and sit. She also had mild torticollis but we didn't realize it and start PT until she was 14 months or so. Like the pp, her delays were less and less delayed as time went on - as a newborn they were very obvious (feeding issues primarily). But she walked at 12 1/2 months but then she always was an archer even as a little baby (reflux arching) so her ability to extend her body was strong. She had more trouble with the flexed posture activities. Now, at 26 months she doesn't look delayed at all. The only thing she has trouble with that other kids her age are doing is ball play - catching and throwing are not easy for her but she's learning.

But like others have said, the question is why is she low tone. My dd has a chromosomal abnormality and that is often associated with tone issues. Not that you should spend a lot of time finding an answer at this point. If things improve there's really no reason. The torticollis could be the reason actually - I know that played a big role in my Dd's issues. Its really hard to sort out all of that - did the tort come on because of the low tone or is her tone off because of the tort? Hard to say. Anyhow, my main point is low tone in the first year doesn't necessarily mean long term issues.

Good luck with the therapy.

[loraxc]

My DS was borderline FTT and quite hypotonic as a young baby. He could not even sit supported (in a Bumbo) at 7 months. We went through a whole battery of tests and potential diagnoses, and he was in EI for about 5 months. At around 11 months everything somehow magically started to come together. He crawled at 11 months, walked at 13 months, and was discharged from EI. He now is virtually indistinguishable from his peers, although he is still insanely flexible and STILL has a head lag when pulled to sit (which is something they are supposed to lose as young infants!) His ankles also roll in, but at this point they are not recommending orthotics for him (we will evaluate again in the future).

Mild hypotonia runs in my family and DD is also somewhat hypotonic, although she was never as severe as DS.

[loraxc]

. I am very uncoordinated, never learned to ride a bike sat in W pose most of my childhood b/c other positions were not confortable and have a few hypermobile joints.

This is probably a reassuring sign, I think. I am similar myself. I think sometimes there is just a family tendency here that appears to be benign. My father also has some issues, my brother was always physically behind, and I have hypermobile joints.

[Hey Mama!]

My youngest dd has hypotonia. She didn't sit unsupported til almost 9 months, never crawled, did not pull up to walk until after her 1st birthday, and ended up walking at 15 mo. Like a pp said, her jumping skills were quite delayed, she did not clear the floor until nearly four years old. She has a lot of trouble pedaling now, but I'm going to start having her practice as often as possible when it's warm again. She has always sat in a W and still does I contacted ECI in TX and they did an eval but she only qualified for speech and self help skill services. So, she never received any physical therapy for her issues. I enrolled her in a dance/tumbling combo class and she actually surprised the heck out on me, she has done so well in the class! Now you cannot tell she has a problem unless you are specifically looking for it, and even then it seems so mild.

I believe her hypotonia is genetic-after seeing old home videos of my mom as an infant and toddler. She was incredibly floppy and more behind on her gross motor skills then my dd was. That has turned into being incredibly clumsy as an adult.

[mnparent]

Our second son is 21 months old and has moderate hypotonia. He hit most milestones late, and we started with the early childhood intervention at 14 months. They come out once a week and work on mostly PT. We have just started with pediatric PT as well. his speech is a bit delayed but he says a few words. He crawls, pulls himself up on things, climbs stairs, but he cannot stand or walk on his own yet. The PT said it was moderate hypotonia. We are going to do weekly sessions with early childhood intervention as well as a weekly session with another pediatric PT. He is making small improvements every day. We have appointments with a developmental pediatrician (which takes forever to get in to, they are so booked out) coming next month. We had a normal MRI and EEG according to our neurologist. We really dont have an definate answer on what is causing the hypotonia and it is frustrating. We will just do what we need to do and work with our little guy every day. He does sit in the W, and my wife tells me she always sat that way. My 3 year old sits that way too, but he is very coordinated and athletic and has not had any other signs of hypotonia. He seems almost advanced for his age. I never had heard of hypotonia until recently, and I am always searching for answers and stories of progress from others. Xmas was when we were hoping he would be walking on his own, now we are shooting for his birthday in April. His balance in not there. Please share more stories of progress. thanks.

[solinox]

Definitely try to find out the underlying cause of the hypotonia, whether genetic or environmental or something else. You don't want to overlook something that might be fixable. My younger DD has mild CP. She is hypotonic in her limbs, with some hypertonia in her trunk. It took me until she was over a year old, even adjusted, to get her a diagnosis, but she was in early intervention therapy from birth anyway from being a micropreemie. Her trip-sibs were in, too, but tested out by a year old. Caitlin did not eat solids well until 9 months (adjusted), did not sit up, crawl, or walk when her trip-sibs did (walked at 18 months adjusted), but she caught up on everything eventually. She is bright and stubborn, and will work at something she wants to do until she gets it; as a baby she would do laps around the house, taking a step, falling down, then getting up for another step, until she finally got it. She potty trained late, almost 6 years old before she was fully trained, but that was likely a combination of the CP and her Asperger's, since my Jarod is also turning out to be a late potty-trainer and has no muscle issues at all.

Now, at age 10, she is very skinny, almost skin and bones, because she has low muscle mass. Her walking gait is normal, and she has only a slight cant to her running gait that only a professional or I can really see. She still has difficulty learning new physical skills, so she is behind her trip-sibs in swimming and learned to ride a bike later. But generally looks and moves within the range of normal, people don't notice that she has any differences unless we tell them.

[Girlprof]

We noticed some missed milestones with our DD around 9 months. We started EI at 12 months and she was diagnosed with "congenital benign hypotonia" at 18 months. We stopped looking for reasons at that point since the develop ped said further testing would be more invasive and wouldn't likely lead to different treatment.

At 12 months, she rolled to get around and couldn't sit alone for very long. Once we started PT, we saw pretty quick progress. She started army crawling and then regular crawling. She pulled up at 16 months and walked at 18 months. This felt like a loooooong wait but she was making good progress most of that time. Then in the last 6 months, she's caught up a lot. We would no longer qualify for EI if we weren't already in the program. Her best friend is 3 months younger than she is and their physical skills are nearly identical. He can sit in squatting longer than she can. We've been really pleased with how much the PT has helped her. When I think back to where she was last Christmas and how *worried* I was....Well, I tear up every single time. What a difference a year has made.

[Roar]

Hypotonia is frustrating because it is so far from understanding the specific problem the child has or what you should do about it. I do think there are reasons to continue to be hopeful and keep plugging along looking for answers. We have seen huge improvements even into the teen years. It seemed like our child would never catch up. He still has to work harder and the hypotonia is still there, but folks who aren't trained to noticed it won't see it.

While the underlying hypotonia remains we have seen very significant improvements over the years. What has worked for us:

1. Physical and occupational therapy.
2. Encouraging lots of activity - get down on the floor, dance, crawl, play games, take walks, have child help with housework, etc. PT and OT are great but if they are once or twice a week that is very little time compared to what you can do at home. Good therapists should give you plenty to work with during the rest of the week.
3. As the child gets older finding activities they enjoy that help build balance and core strength is important. Look at horseback riding, swimming, dance, martial arts, and yoga. For kids more on the "mild" end this can be even more helpful than OT and PT for gaining strength for life.
4. Leading a clean lifestyle overall - keeping the toxic load down by avoiding processed food, preservatives, high fructose corn syrup, etc. Emphasize nutritionally power packed whole foods. Get plenty of sleep.
5. Supplements. This is tricky because what is helpful for one case may be bad for another. We saw significant improvements with essential fatty acids specifically fish oil and with zinc and b complex vitamins. In our case it also helped a great deal to get on prescription carnitine for metabolic problems. If you have have yet looked at metabolic testing I would consider it if you can. We saw very significant improvements in endurance on carnitine.

[lindberg99]

My middle son was hypotonic and pretty floppy when he was born. He was 10 weeks early so I'm not sure if that had something to do with it. He was also very sleepy! The neonatologist was pretty concerned about it when DS was still in the hospital. After he came home, his ped kept following him and referred him to a neurologist when he was 4 months old. The neuro really thought much of it was due to DS's head size, which was big. But DH and I (and really everyone in both our familes) has big heads so he wasn't too concerned about it. He just kept wanting DS to come back every few months until after DS started walking. So it was just a lot of watchful waiting. DS is 9.5 yo now and doing fine.

I know the waiting/watching can be pretty frustrating! I hope things go well with PT/OT for your daughter.

[sbgrace]

Our geneticist told me he thinks "benign hypotonia" is another word for hypotonia from an undiscovered metabolic condition. Not that you can or even should try to find the condition if a child is otherwise healthy. Mine wasn't and so we had to look but the formal testing was invasive. There is a urine screen that isn't a formal metabolic test but that does pick up at least on my son's issues. He responded really well to carnitine (mentioned up thread) and coq10 as well in terms of his tone. In fact it was right after we started those he was finally able to jump. He had tried for so long.