Time for me to pop in and bug all of you for answers. Did I ask this before? Does anyone else have a child with hypotonia (low muscle tone), and if so, do you know the cause? Could it be the reflux (or could the hypotonia be causing the reflux?)?

Katie's doing so much better, the opthamologist thinks her vision is "fine" now and is SURE they are going to disqualify her from receiving infant stim services. I'm very sad about ths, she loves the therapist. She is still behind on gross motor due to "mild" or "moderate" hypotonia (depending on who you talk to and what kind of mood she's in.) She's receiving PT 2 times per week. It was a battle to get it.

Her doctor said she may "catch up" - but I'd hate to be disappointed. And I'm sick of the reflux. It just complicates everything. Everytime I get her laughing or smiling she up and barfs. Today she projectile vomitted over my shoulder as we were walking out of a party. I felt terrible, what a mess.

I'm really sleepy, time for bed. Hope everyone is well.

No hypotonia here but I do know of some here on the boards who do have this condition. Sam'sMom is one of them for certain. If no one responds in the next day or so I suggest you pm SamsMom or me and I will get people on this, ok?

Zoee was mild hyptonia. We had Ot and PT for her for about 6months from the time she was three months and now she is now. She was okay by the time she was 8 months old.I think that it was from the meds and not feeling good all the time. so I htink that it was GERD b/c that is why she did feel good.

Evan has had low muscle tone since birth. It also affects him orally.

Asher has mild hypotonia and has had it since birth. He has Down Syndrome however and it is very common in Down's babies, children and adults.

Hypotonia can be a cause of GERD.

James has mild hypotonia. It was diagnosed at about nine months old. He couldn't sit up on his own, fell a lot, and was just plain wobbly. He started PT right after the diagnosis in January and was discharged after about two months. He did catch up pretty well in reaching some of his milestones (sitting, crawling, standing, etc.). He will be 13 months in a few days and still isn't walking. His PT told us he might be a late walker because of the hypotonia.

We do see the hypotonia mostly in his face now. He always has the droopy mouth... his mouth never seems to close. We have been told his reflux is more than likely a result of the hypotonia. We are still in speech and OT to help with all his feeding issues and food aversions that are a result of the reflux.

Sam has had hypotinia since birth. He is now 16 months old and can not hold his head up. He has swallowing issues and it is most definatly the cause of his reflux. His hypotonia seems to be related to some neuo or genetic syndrome/disorder that has not been diagnosed yet.

If you child is meeting other milestones I would not worry too much. Hopefully the PT will help.

Do you see a neurologist?????

Reflux really changes your life--hang in there, it does get better.

Hmmm...with a family history of GERD I assumed she'd have it, hypotonic or not. We've been to 2 neurologists, an opthamologist, dev't pediatrician. We've been evaluated by EI and she receives PT 2x per week and infant stim 1x per week. She's developing but is behind for her age - however, she seems to be keeping pace, just more slowly than normal. She tolerates tummy time really well, holds her head up and even will bear weight on her elbows, even one at a time. She is reaching but is slow to do it. She's had an MRI, there's no damage, just some 'thinning of the corpus callosum' which means *nothing* or everything (apparently Albert Einstein was born without a corpus callosum at all!). We started rice cereal this week and (KNOCK ON WOOD) so far no feeding issues.

It's hard to quit worrying. Sometimes I'm fine and other times my brain runs away on me. She's very cute, by the way. Very cuddly (probably because of low tone, lol). I just don't know what to expect for her as she gets older. We're still at that "well, she could be..." stage. I think cognitive development is my biggest concern.

Thanks, Julie

I know it is hard to quit worrying but do know that hypotonia is just a term to describe low muscle tone, it is not necessarily a diagnosis in itself. Many children with hypotonia have no other neurological issues and their cognitive development is uneffected. Even chidlren with cerebral palsy who can have significant issues with with tone either low or spastic or a combination of both, can have normal cognitive functioning.

Sounds like she is doing great. Even kids without any medical issues develop at different rates. Every kid is different. Keep up the good work.

It has taken me a long time to accept the fact that Sam will be "different" from other kids. But my 3 year old sums it up the best----one day he saw me getting flustered and Ben said "he is just Sam Mom".

What a great understanding Ben has! It's amazing how understanding the siblings of a special needs child learn to be.

Julie,
Larissa also has mild hypotonia, and thinning of the corpus collosum. The neurologist would not say their was a direct relationship (as she also has an enlarged ventricle, and hypoplastic vermis), but thought it was likely. She is 26 months now and walking, and we can still do party tricks with her fingers and toes bending them back, but it is getting more firm. As she moves about on her own, she is building up the muscle tone.

Pamela

Janette---Ben is great with Sam, he is amazing--no if I can just get him to poop on the potty!

Julie,
My son has "moderate" hypotonia and they think that has had an impact on his reflux. I've often wonder which came first, the reflux or the low tone. He just turned 2 and has been evaluated as having normal cognition. I know what it feels like to worry about this. I have been worrying for two years because some doctors told me that hypotonia is due to neurological differences. His tone is improving with time. I'm sure the same will happen with your daughter.

But my 3 year old sums it up the best----one day he saw me getting flustered and Ben said "he is just Sam Mom".

That's very cute. :-D

I'm still hoping Katie won't be too different (where does that invisible line exist when "different" becomes too "different" - they're all a bit different to varying degrees).

Sometimes I think I should just turn the darned computer off and go with the flow. But then I start to worry and feel guilty that I'm "missing something."

On a happier note, she started rice cereal the other week and tonight she had applesauce! She seems to be tolerating solids really well. Now, If I can just get her to sit up...

Julie,

My daughter is 18 months old and she has hypotonia all over her body. She is getting better she started to bear weight just about 3 months ago and she holds my fingers because she wants to walk. She is still very flexible and we joke about her being a gymnist or a ballerina. She just scoots all over the place.

Hang in there. I know your frustration.

Ada

Sam has moderate hypotonia. I am not sure if that should be past tense or not or whatever. Anyway. He didn't sit by himself until around 11 months old. He crawled at 12 months old and just started to walk at 15 months old. We were seeing a neurologist and she now thinks he is just fine.

It all started to see if there was a neurological problem causing the reflux as the lower esophageal sphincter is told to squeeze and release from nerves (correct me if I am wrong) so our ped wanted to get everything checked out and make sure he was "normal". The MRI came back normal, but we continued to see neurology to keep track of his hypotonia. From the initial visit we were scheduled to see PT, OT and ST 1 x a week each. We are now down to ST 1x a month and PT once a quarter. We are done with OT.

Sam still has a lot of trouble with eating, swallowing, and talking thus the ST more often. It is thought that it is part of the hypotonia. I continue to work with him as far as gross motor skills, but his fine motor skills are great.

This is my opnion - Sam was a puker and FTT when he was first born. He wouldn't gain weight thus he couldn't grow stonger. His length and head circumference kept growing, but he wouldn't gain any weight. I think that he wasn't getting enough nourishment and he couldn't do normal baby things like hold his head up. Since he didn't get enough nourishment, he didn't grow muscles like he should thus he became hypotonic. Being hypotonic made him more sedintary and he didn't learn to crawl or hit other milestones appropriately. With the help of PT and OT he has caught up really fast. He also has gained a lot more weight and has quit puking as much as he used to.

Keep you chin up. I really think if you can get Katie to eat and keep her food down and get her to gain weight things will go better. Good luck.

Keep you chin up. I really think if you can get Katie to eat and keep her food down and get her to gain weight things will go better. Good luck.

She's a little pudge monster! We've never really had feeding issues, just reflux ones (thank goodness). It took a little messing around with her meds, but she seems to be doing well, especially with solids [knock on wood]. She was a silent reluxer, lots of regurgitating and reswallowing, and had sinus issues (aspirating through her nose, stuffy all the time, etc.). Now she's more like her sister was, a big puker. But she's gained loads of weight adn seems to enjoy eating quite a bit.

She's making progress with the pt person. She had her 6 month well check and her ped seems to think she's made lots of progress but only put her at about a 4 to 4.5 month level. She said not to worry too much about it now as most of the milestones are muscle strenth based so I shouldn't expect her to meet them. She said she seems to be on track cognitively, although there is some question about her hearing. I'm feeling guilty like I should be doing more to help her but I'm not sure what that would be.

Seven months ago I never DREAMED I would even be having this kind of conversation. It's amazing how life can change on a dime.