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Hypotonia, Low tone baby. Anyone else?
Our daughter has Hypotonia but so far all of her genetic tests have come back clear. She's currently on a feeding tube and has a swallow study in November.
Anyone else dealing with this?
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Re: Hypotonia, Low tone baby. Anyone else?
Hi I just wanted to let you know that I was in your shoes at one point - we thought we had unexplained hypotonia for the longest time! There are some babies that do have congenital benign hypotonia - just without explanation - the severity varies greatly. For the rest of us we find a diagnosis months later because hypotonia goes with a lot of different genetic conditions. (I know on this board PMQ's son has unexplained hypotonia)
My son had numerous genetic tests in the NICU including a FISH test for PWS. Months later we had a methylation test for PWS and found out that is in fact what he has. He got a feeding tube and we were allowed to take him home after about a month in the NICU. Did your daughter have a muscle biopsy? I know that they used that to test for many different conditions as well. Ours was inconclusive because a simple blood test showed PWS.
I am sure you are stressed and worried right now - it is so hard searching for a diagnosis/answer! I don't want you to read this and go google PWS and then freak out like your kid has that specifically - I just wanted to let you know that my experience was similar. I wish you the best. Just know that physical therapy helps sooooooo much!!! My son is doing wonderfully now!!! You'd never know he was once this floppy little sweet baby in the NICU!
She had a lot of genetic tests sent out, and only about half of them have come back so far. No muscle biopsy yet. I'm not sure why they decided to wait on the biopsy.
We're still waiting on the PWS results to come back.
I'm so glad to hear PT has helped you son. We're meeting with a PT next week for an evaluation.
Hi! My son Tucker had hypotonia and so we had PT for about a year, starting around when he was 6 months. It was hard but he totally outgrew it and now, at 2 1/2, you'd never know it. We started going to My Gym every weekend as well, which my son loves and it gives him some extra physical attention and exercise. We also swim, which is also a great "workout" for him.
He also had swallowing issues, due to a TE Fistula. We still have to be careful with how we cut his food and making sure that he's not inhaling his food but we've been doing great for a while now.
Hang in there, it does get easier.
I am so sorry that you are dealing with this so soon after having your gorgeous little girl. It is very scary facing the unknown and all of the moms on this board have been down that road in one way or another.
Owen has a disease called Spinal Muscular Atrophy. He did not appear to have low tone until closer to 4- 6 months old...at least we didn't notice it until then. Has she had genetic testing for SMA?? Many of the Type 1 babies are born with low tone. Please don't get freaked out I am just trying to offer you some ideas to run by the doctor. We saw a first doctor who gave Owen a clean bill of health...I wish we knew then what we know now.
Owen also has a feeding tube which he has had since he was about a year old. He is now strictly tube fed due to weakened swallowing muscles and failing his swallow study. It has been a major help for him. Please know that it is helping your daughter to gain weight and stay healthy! It stinks seeing your little one with a tube- but it helps so much!
Best of luck and please keep us posted with news!
Thank you! I can't tell you how hard it has been not having anyone to talk to that can relate. It's difficult when the only people that understand are the doctors that are trying to diagnose every little move (or non movement) she makes.
Sometimes I just want to say - isn't any of this typical newborn behavior? I hate when they compare her to a "normal baby." Like she isn't normal. She may have some challenges ahead, but she's still human.
We did get the SMA results back which were clear. Friday we have a trip to the pediatrician and she will tell us if any other genetic tests have come back.
Right now Lillian has a tube in her nose, but if she fails the swallow study in November we may be looking into using a G tube. We're giving her a pacifier to help her with her sucking, but what can we do to help her build the muscles for swallowing? Do you know if a speech therapist can help with that? And at what age does that start?
You and your daughter look beautiful in your profile pic!!
Have they done an MRI? Just to see if there is anything neurological going on?
My DD is hyptonic in the trunk and neck and hypertonic in her extremities. We went through genetic testing and found nothing. Then some other things pointed to CMV and testing of her blood spot taken at birth it was confirmed.
There are a lot of causes for kids with tone issues....I hope you find yours!
i just wanted to add that i can also relate. my son went through a slew of tests in the NICU, all of which were clear. his MRI did show some underdevelopment of the brain. he is behind with his head control and low tone in his trunk (unless he gets really pissed, he has great control then
lol). as the pp, he does have some hypertonia in his arms. however, he is progressing, slowly, but progressing.
i agree that the medical community love names...i honestly think that sometimes there is no answer. i'm sure some people hate hearing this but i am a believer of "it is what it is". for me, i don't need at label right now, i'm focusing on him and taking one day at a time.
the important thing is that regardless, you are going to do everything you can for your daughter and love her to pieces.
Her MRI came back clear too.
My son also has low-tone but was diagnosed with PWS at 6 weeks. His FISH test also came back negative and it was the methylation test that came back positive.
He had a NG tube for about 5 weeks. He never really liked the pacifier. We were allowed to feed him though. We use the NUK nipples (the wide basde ones). Those were the only oned he could latch on to. I would definately suggest seeing a feeding/speech therapist now. And I hope you're involved with Early Intervention.
P.S. She's beautiful!
Thank you for the information. I really hope we'll be able to feed her soon with a bottle. We're meeting with the folks from Early Intervention next week for an evaluation and hopefully they will recommend a feeding/speech therapist.
I'm not sure what a methylation test is, or if she's had it. I do know they took a lot of labs that we're still waiting to hear from.
One of my nieces on my husband's side (BIL's daughter), and my nephew on my side (my sister's son) were born low-tone. Niece will be 2 years old in March. Nephew just turned 5. These children are not at all related genetically.
After extensive tests, in the end, both were diagnosed with cerebral palsy. CP is such a catch-all diagnosis that seems to be offered when all other known things (especially genetic) are ruled out. They both needed oxygen at birth, and the doctors for both suggest that oxygen deprivation in utero or during labor is the cause. No one really knows, though. It feels like such an "empty" answer, you know?
In the end, the diagnosis doesn't change the course of treatment, though--so both sets of parents have let go of trying to figure out the "why".
Both children have had developmental delay and received early intervention (PT, OT, and speech therapy). Both were late in rolling over and sitting up. Both had poor trunk control. Both were late to move around. Both were fitted for special braces for their lower legs to help them learn to stand and walk.
Niece, at 2, is not yet walking or speaking words, but she has made tremendous progress. She is a twin (being a twin an independent risk factor or CP). Also, because she is a twin, her milestone lag is very very noticeable.Her sister is walking and talking.
Nephew, at 5, is doing fantastic! He needed a lot of speech therapy (and still goes), but now, he has pretty much caught up with all of his milestones. He still is hyper-flexible and has "soft muscles". He will never be a talented athlete, and if you know what to look for, he is a smidge more "floppy" when he runs around with his friends, but truly--you really can't tell. He is doing great in school. You would never know that he had it rough as an infant (the low tone also led to other things like acid reflux--poor thing).
We are hopeful for niece, as well. Many of her challenges seem to mirror Nephew's--and so even though it seems she has a tough road ahead, her parents are very optimistic. She is the sweetest little girl. Everyone who meets her can't help but fall in love with her. She is learning things in her own time. Her parents work with her a lot. It looks like it is paying off.