Hypotonia

[sarah54]

My husband and I think our baby girl might have hypotonia. Does anyone have kids who have this condition? If so we would love to hear about your child what their symptoms were, how old they were when you found out, how they are doing now and what types of intervention did they have?

Thank you so much. We really have no idea what to think. We are so scared and worried about our little princess.

 

[sarah54]

Anyone?

 

[Foogirl]

Abby has cerebral palsy and suffers from both hypotonia and hypertonia in various different muscles.

I don't know if this helps at all, but when she was having regular check ups as a baby, and we were aware there were some underlying issues that might lead to CP, her consultant didn't start even looking for hypotonia until she was about 9 months to a year old. And when she did, it seemed to me she was quite floppy but the consultant didn't think so. She always seemed to be quite floppy in her arms and legs, but these are not areas which are affected by her CP.

Have you spoken to a professional about it?

 

[sun]

My son has hypotonia and they couldn't say for sure until later on with him (around 11 months). He was a late preemie too, so that slowed all his diagnosis as they would always wait to see if it was just delay due to prematurity. He was late with all his gross motor skills. He held up his head at around 5 months, could sit on his own without tipping over at around 10-11 months, and crawled/rolled/could get himself into a sitting position at 13 months. He started walking at 16 months and is still working on walking on uneven surfaces, running, climbing stairs, jumping, etc. He was slower than the average baby, but wasn't nearly as affected as some of the other kids at the centre he goes to. Hypotonia has tons of different degrees and some babies require more serious physio/treatment than others. His little girlfriend had more severe hypotonia that was diagnosed shortly after birth and required lots of physio, but she's 2.5 years now, walking (and dancing!) and doing great xxx

 

[mummy3]

My youngest has hypotonia, she's almost 6 months now and her motor skills are all delayed. She cant hold her head, roll, reach or even fully keep her head centered when laying on her back.

Are you in the states? We have a programme called early intervention here where a child developmental expert comes and assesses what your child may need and sets you up with the appropriate specialist. We get physiotherapy at home now Also LO is seeing a neurologist, you can request a referral or your pediatrician may refer you if they suspect its needed. Eilidh, my daughter was referred by her GI doc. Is your LO growing well? Eilidh was a 32 weeker so we correct her back to 4 months, was your daughter early?

I know its a worry, I hope everything works out for you

 

[sarah54]

Thank you everyone for replying.

Hannah was born at 37 weeks by emergency c-section, she was then in the NICU for a week because of breathing complications.

We live in Canada.

We are being seen by a pediatrician and she has been going to physiotherapy since she was about a month old. We are waiting for an MRI to scan her brain for CP and other conditions.

Also we are now having a dietician come to our home, aswell as an occupational therapist and a speech language pathologist.

Hopefully we will have some answers soon!

 

[mummy3]

Sounds like you're getting all your bases covered What was making you think hypotonia? Also you mention dietician, does your LO have trouble gaining weight? Eilidh has FTT and with babies in that situation its hard to determine if the slow weightgain is a cause or a result of a physical delay.

Please keep us updated

 

[sun]

I'm in Ontario too - whereabouts are you? Did they say why you are getting a speech therapist so early? Is it because they are assuming there will be future problems? (oops sorry for the barrage of questions!)

My son also has a speech delay, which they aren't sure is caused by the hypotonia. He had some feeding issues from it but is doing much better with chewing/eating in the last 2 months! He BF pretty well as an infant after the first few weeks, but could only BF for short spurts. x

 

[helenb]

hi my son has benign congenital hypotonia and wasn't diagnosed until he was nine as he also has other problems that confused drs enormously.

initially, the hypotonia caused alex to have global developmental delay and it took him a long time to reach his milestones. he did eventually catch up mentally though and at the age of seven he had the mentality of a 13 plus year old.

alex is still afftected by his hypotonia. he struggles with physical activities and tires very easily. he can not walk far or run but that could also be because of his bone problems. part of his hypptonia is also hyperextensible joints and low weight.

should you have any specific questions, please ask and i will help all i can x

 

[sarah54]

Mummy3 I just saw your reply.
We are thinking Hypotonia because she seems pretty floppy. She has problems holding her back straight and her head straight. She also can't hold her head when you pick her up, it just flops backwards.

Sun, I sent you a private message.

Thank you everyone for replying!

 

[Caezzybe]

My son Logan has hypotonia because of Down Syndrome. It's not in all of his muscles, just in his trunk muscles as far as we and the experts can tell. He has physiotherapy and is on the waiting list for speech therapy, although his speech seems to be developing normally for his age. His main delays have been in gross motor skills, it took him a while to get head control, which I recall he got at around 6 months and he has just started to sit unsupported for short periods of time and commando crawl at 12 months. He has also just started to be able to bear weight for a few seconds on his legs and stood on the floor for about 3 seconds this evening for the first time, resting on the sofa with his arms.

He is doing incredibly well for a child with his condition and children with hypotonia all reach their milestones at different ages, each child is unique. It sounds like you have the right support in place with physio, speech therapy and occupational therapy. All three will help. The main point of the therapies is that they will show the correct techniques for how to push up to sitting, how to encourage crawling etc. It's then down to the parents to practice these techniques regularly with their child to help them. The main hard work is done by the child, most will reach all their milestones in their own time anyway, but the therapy will certainly help things along.

Wishing you all the best in your journey together and hoping that your little girl responds well xxx

 

[BrandiCanucks]

Where in Ontario are you? We are in Brantford. My daughter suffers from the more rare form of hypotonia. There's Congenital, which originates in the nervous system, and there's Peripheral, which originates in the spine. My daughter has peripheral.

Congenital affects most, if not all, muscles, where Peripheral affects the extremeties, the arms and legs.

Which one do you think your child has?