Hypotonia in children - Page 5

[momoftworedheads]

Originally Posted by coreybreeze

I'm coming out of lurkdom to respond to this interesting thread.

My DD (17 months) is a bit of a mystery baby- suffered a full on regression of all motor skills at 6 months and has sloooowly gained, but remains severely delayed (can't sit up, crawl, fed by g-tube, etc. ) We have done an absolute poopload of diagnostic testing, the most recently being a muscle biopsy, but so far everything's coming back normal.

She's been labeled with central hypotonia and developmental delay. Its never even occured to me that hypotonia could be a diagnosis in and of itself. Very interesting!

Anyone out there with an older hypotonic kiddo who eventually learned to walk after super-delayed sitting? I keep reading that kids who don't sit by two generally don't learn to walk. I hope she's sitting by then, but that birthday's just kind of hanging out there like a dark cloud.

My youngest son is 4.5 years old. He did not sit up unassisted until he was 27 months, he walks, runs, etc. We did a lot of trunk strengthening exercises, bought him a Rifton chair and and propped him up with pillows to help him until he could sit up unassisted.

Take care,

Jen-

[marcelle]

Dear mates,

I am glad I have found this forum and to be honest I am really suprised that so many children suffer :(. Till now I felt myself that there is just my child with this strange condition far away around I even have never heard before about hypotonia till the time we starded experienced problems with significant development delay at one year of age. And I have already learnt a lot from all the posts in this group. Now I have finally better idea what we should expect in the near future because I was always having no idea what it is going to be as doctors are saying “nothing” and after some time I think I know more about this “diagnosis” then they do. They significantly has no other experience with the child with hypotonia before and I see their wonder and interest in my son progression. It is because I am from small town and the neurological threatment here is as well very terrible. Therapist do more nothing then something :( Unfortunatelly any specialist is too far from us as well as any suitable therapy so we do hard work at home mainly on our own.

I am really wonder if anybody has an experience with SCENAR therapy? Or has heard about someone has tried it? I have heard a lot about this therapy and it’s rumoured possitive curing effects. Like excellent progresses while threating cerebral palsy (and other neurological, skin, ... and many many other diagnosis). It looks like it can help to get progress within any diagnosis. You can find some doctor’s recommendations onto this therapy on internet but I cannot find any evidence of someone’s real experience or someone’s apparent positive achievements while threating their diagnosis with scenar.

I would be very grateful for sharing your or somebody you know experience whatever it is…

My son has decreased muscle tone and still cannot walk independently in his 24 months because of this hypotonia. So I think we might try this therapy…

I really appreciate your comments… :)

[Wild Lupine]

My son also has hypotonia. He has hit all his gross motor milestones late and has been in PT and OT since he was 13 months old. 

He does have an underlying diagnosis: developmental dyspraxia, which is a neurological disorder. He has poor motor planning in some areas, particularly feeding and swallowing, and also dressing, but oddly enough, his fine motor skills seem to be at or above age level. A pediatric neurologist diagnosed him. I encourage pushing to see every specialist possible to see if there's an underlying cause.. Having a diagnosis really makes finding appropriate treatment much easier. 

[Sara Rothery]

I am so happy to find other people with children like my daughter. Like you all I was worried and knew there was something wrong but all the doctors didn't listern and although I was informing them to look at her feet (she has very flat feet and walks on the inside of her feet where her little toe doesn't reach the floor) they were all saying I was being silly and she will be alright and it took to moving counties to a new doctor (number 5) to cooly say argh yes I will put you in contact with a specialist. 
Again, like others here, she was a late sitter and a late walker but is very good at talking and the sitting activities although suddenly (she is 31 months) she has started to 'do running' which is more like fast walking with her arms out like a zombie and jumping where she can in fact jump off the floor about an inch. She has physical therapy once a week for 45 minutes and we go swimming every sunday, although it takes her a good day to get over the swimming. Some days she is happy just to sit around the house and do drawing etc. I have a placement for her in September at nursery just 3 half days a week I do hope she will be alright.  I have been informed that there is an operation at about the age of 7 where she could have her instep supported by pinning it up but it can only stay in for 3 years and then it has to be removed. Has anyone else heard of this or had it done?

The more i read about hypertonia the more it would seem i have it, the posture, the 'not getting anywhere' when running the bad PE reports from school, the bending of the limbs etc. I have dyslexia as well and I am wondering if this could be a result of the hypertonia? 

my daughter is doing very well and we have another daughter some 5 months old and the difference at the milestones is great as our first daughter was witting unaided at 9 months our second is nearly there at 5 months. 

I would be interested in hearing from parents of older children to find out what to 'expect'.

[Kuba'sMama]

I just found this thread and didn't have time to read all the responses but my dr just casually diagnosed my daughter with hypotonia without even telling me. When we were asking him for a referral for specialists regarding being on the autism spectrum, he just kind of said "oh yea and there's that hypotonia I diagnosed her with at 18 mos". He's a great ped and gave us lots of referrals with no trouble, however I would have wanted to know he considered her to have hypotonia at 18 mos and possibly have started physical therapy then and there. We thought she was just oddly clumsy in her case I do believe its related to being on the ASD. She didn't get a diagnosis for that yet either. Its hard to wait to know what's wrong with your child. I'm amazed so many kids have this issue

[marcelle]

Hi,

we have some progresion with our son. He has been diagnosed with spastic diplegia (cerebral palsy) that must be developed during a prenatal development it is uncertain background as there are no findings on MRI of his brain at all. However we were said it might be caused by a bad cold I was experienced during first trimester.

After diagnosis was specified we were given botox injections into both of legs at the oge of 2,5 and 2 weeks after our son started to walk independantly for the first time in his life. It is not walking as walking but he is able to walk alone alongside a flat and for a small distances outside. Now we are expecting examination with neurosurgeon to be said if we are eligible for a selective dorzal rhizotomy that my help our son to loose spasticity in his legs forever so we are in great expectation.

We are happy about our threatment at the moment because all the results we got were at the children hospital DFNSP in Bratislava Slovakia where we started to visite app. every 3 months for various threatments. There is really excellent care for children. It is 3 hours travelling for us to get there but it cost everything as they have great experience with all neurological diagnosises.

[GPHPITT]

I just found this thread while doing some research online regarding my grandson's condition.  My grandson has hypotonia.  He is now 11, and is doing "well" relatively speaking.  As an infant, he could not sit up, roll, crawl, stand up or walk until long after others in his age group.   He has progressed well, but is still far behind his contemporaries in physical abilities, and it is becoming clear that he will never catch up.  By my estiamte, he is at 60-70% of muscular function.   That is tough on a young boy, because he cannot participate with his friends in physical activties on anything close ot a competitive basis.  However, he has a lot of support, and there are non-traditional opportunities for him to be involved in physical activies.  He is currently involved in a "sled hockey" program, when he is strapped into a sled with a runner, and has two small hockey sticks to propel the sled and to hit the puck.  That is just one of many opportunities.  He also was blessed with a mighty intellect, and is far ahead of his contemporaries in terms of his intellectual skills and accomplisments. The bottom line is that the condition does improve in most cases, in varying degrees.  Also, there are opportunities for children with this condition to become involved in physical activities and sports.  You just have to look for them.   There have been some developments in the area of treating muscular disorders.  Most of the research is in the area of muscular dystrophy.  A very recent development in that area is a still experimental drug called Eteplirsen.   The drug has been very effective in treating Ducheme's disease, which has many of the same manifestations of hypotonia.  It appears to encourage the growth of the proteins necessary for muscle development.  So far, there appear to be no side effects.   I am trying to determine if this treatment might also be effective for hypotonia, but I am not sure if the root causes are the same.  Good luck.