Floppy baby syndrome

[Katstribe]

Ok I am just wondering if there is anybody else in bb that has a bub with floppy baby syndrome?
My little man (6mths) has mild floppy baby syndrome and it would be great to talk to other mums who are dealing with this also.
We go to physio every 2 to 3 weeks for an hour plus try and do his exercises every day at home.
He is getting stronger all the time but it freaked me out when his physio said that he may not even crawl until he is around 12months!!!
All my previous bubs have been crawling by 6 mths and walking unaided by 11mths. I know this is sometimes considered early but you can probably understand my shock at being told there could be such a big difference.
Anyway it would be great to hear from other parents out there

[Pandora]

I dont know what it is, sorry. I might google it though, you have me interested now..
Just wanted to mention that DS didn't crawl til 10-11 months, and walked unaided at 13 months.

[Katstribe]

Hi rayray
i didntknow what it was either. I just noticed with bub 6 that he wasn't reaching for anything and wouldnt raise his head on his tummy or even put his hand up to my boob when feeding. Spoke to health nurse when he was 2 months old and she could see what i was saying as he would just lay there wiht his hands up beside his head. He would get excited but didnt or couldn't move his arms. So we started to go to physio and they said they thought it could be fbs which is they have very little or no tone in their muscles. He has some and they are getting stronger all the time and he has his own special achievements which is great. Its just hard some days knowing how much hard work goes into those achievements compared to a bub who just up and does it. I know that he will eventually get there and i also know that it is something that will be with him all his life ( or at lest this is what i am being told) I have done some research but intend to do alot more myself.
I know each bub is different in their milestones (although all my others were pretty much the same) its jsut hard knowing that he has to butin the extra yards to get there.
Anyway sorry for rambling and thanks for popping in.

[Captain]

Hi. I haven't heard of this condition before, but I understand how you feel about bubs not reaching milestones. DD has a condition where she has limited movement in her right arm. We've been doing physio since she was born. She never crawled and started walking a 15 months.
It can be hard watching then try so hard to do things other kids do easily, but it's such a great feeling and so speacial when they acheive their goals. And if rambling about it helps you get through it then ramble away!

[Nadine216]

You got me interested. I have not idea what floppy baby is - please give us more details. I got a prem and they told me that she would also be behind in development and that they to are "pap" floppy - like little frogs. But that it's normal. She needs to be checked the end of the month and then we will know if she needs physio or something like that

[Katstribe]

Hi Captain
It can be very consuming can't it, and yeah it does make it hard when they struggle but it is def rewarding when they do acheive! How is your DD going? Any ideas on why her right arm has limited movement?

Hi Nadine216
I have heard that prem bubs can take a bit to catch up so i hope this is all it is for your precious girl.
We have had Mitchie to the paed to get everything checked out and he checked him for just about everything, including cerebral palsy and downs syndrome. Thankfully he doesn't have either of those. When he did a reflex test on bub his were underdeveloped which he says will be from the low tone factor. The one up he has is that his fine motor skills with his hands are advanced for his age. So there is a bit of good for him. He will always need to have physio and checks with paed to keep an eye on things. But he also still has to have blood tests done to rule out thyroid probs and a few other things, mainly just double checking to make sure there are no other underlying probs.

Anyway best be going i think he is coming down with a wog or something. Catch up soon

[Katstribe]

These are the things that have happened with our DS
At first we noticed it with his arms as i said earlier, he wouldn't reach for anything not to bat at a toy or to grab onto glasses on your face or to grab your hair and would not put his hand up to my boob when feeding, which is one of the most natural and basic instints for them. WE also noticed he had very little head control to the point one of his aunties nicknamed him floppy head. After feeds he was worse and was not able to support himself and was very floppy in the head and body ( we have found out since that they as in bubs with fbs get tired very quickly so even just feeding would exhaust him and he therefore couldnt support his own head when we sat him up). When you are holding him in your arms we will support himself and then after a little while he will all of a sudden stop and he goes flying backwards or forwards which ever way his body is leaning as his muscles just get too tired. A short time ago he couldnt bear weight on his legs, where as most bubs will push up off their feet he would just crumble and couldnt bear any weight what so ever. When you sit him up he will flop forward until he is bent completely in half a his back muscles can' support him. We are starting to strengthen his muscles with physio everyday, he can actually support himself for a short time when sitting but after a couple of mins max he flops forward. it was the same at first just having him on his tummy. we would put him on a wedge cusion and he could literally only hold his head up for a few seconds and couldnt weight bare on his arms at all.

My gosh rehashing all this has jsut made me realise he has really made some progress
Its so easy to forget where he started as it has been a very long 4 months to get where we are today.
Anyway hope this is helpful to anyone who wants to know a bit more.

[Nadine216]

Thanks this really is interesting. I hope he keeps progressing! Sure sound like a little fighter. Could they have predicted this before birth, or is it something that just happen?

[Katstribe]

No i don't think they could have predicted it before birth. It is something that is already there but not sure how thy could check before birth. My health nurse said that most parents don't pick up on it so early either, so that was an advantage for him. Maybe having 5 others first helped in that respect. I believe that if he had of been my first i may not have thought anything of it. But thankfully i did notice something was out of the norm. He is a little trooper. He is a big boy too, he was almost 9kg at his 6mth check and he is still fully BF, so he not going on solids just yet as the more weight he carries the harder it will be for him. Mind you he still sleeps through the night and is very satisfied on boob alone.

[Nadine216]

Good for him that he got you as a mommy, ecpesially after all the babies you've had!! I saw you have six kids, How on earth do you manage!!! Three cheers for your mommyskills.
My girl's 6 month check-up is coming up at 24 July, so eager to know what the paed has to say! Having her weighed tomorrow - thinking it must now be over 5kg

[Captain]

Wow. How will this affect him as he grows up ?(don't feel you have to answer that if you're not ready to talk about it yet). It's good that you were able to spot it early so the pyshio could start so soon.
Have you thought about starting a diary to record his progress. Maybe it could help when you're feeling down to look back and see the improvement being made. Also have you spoken with the physio or Dr about getting in touch with other families with children with FBS. Danielle's physio has but us in touch with other families and I have found this useful.

P.s Danielle's was a birth injury that paralysed her arm. She can probably use about 40% of it now. Not quite the same as what you're going through.

[Mikenzees mum]

floppy baby syndrome is the same another name for hypertonia or low muscle tone i got confussed by it all as well becasue all kenzees drs kept refering to it with differnt name as they do

if you want to reserch it serch hypertonia you will get more info that way

My dd has verry low mucle tone she is like a lacky band she never rolled over until 8 months and now at 15 months she has started walking, her muscles get tirred really easy so she fall over a lot even with crawling and sitting but as that is the way she always has she learns to adapt as will your bub they dont know any differnt, there are adults with hypertonia and some times you wouldnt even know it, we have been told that our DD should avoid contact sports as she is more likely to get broken bones due the fact her muscles dont hold as well

good luck with your bub i hope its not to servere

Pm me if you want to chat or have any questions,

[Katstribe]

Hi Nadine216
Everybody says how do you mange , but honestly I don't even see it as a lot except when it comes time to get them all organised for a function, especially with having four girls who all want their hair pretty and jewellery on! I also came from a family of 7 so it just feels normal to me.
Good luck with her 6mth check coming up. Wow at the 5kg mark she must be so petite! My fella is a chunk!

Hi Captain
Nah its cool i don't mind answering what i can. His paed says that he will never be an extreme athlete ( i can handle that) but he will always need to do some form of exercise or sport (pref non contact) as if he doesn't stay active he will be very likely to become obese. Especially as his fathers side have bigger build anyway. He has certainly improved a lot since we started, i hadn't actually thought bout starting a diary but now i think i shall. Thanks for the idea.
AS for your DD, thanks for sharing and it may not be the same thing but she still has a lot to go through just the same. It can be very taxing on them and you. I think its awesome that she now has 40% usage now. Well done, i can imagine the time and effort put into achieving that!

Hi Mikenzeesmum

I have checked out what you said about the hypertonia, but so far everything that i have read is not like our DS at all. I shall keep investigating it and i shall ask his physio when he goes back to see her in a couple of weeks. It is definately not a word they have used thus far though. This is one thing that i have found - Hypertonia is a condition marked by an abnormal increase in the tightness of muscle tone and a reduced ability of a muscle to stretch (i.e. an increased stiffness). It is generally accompanied by (increased) spasticity of the particular muscles. I am not sure if this is what your DD has but our DS muscles don't have an increased tightness or a reduced ability to stretch.
I am really curious to get more info now though.
Thanks for your info i will certainly be looking into it.

Hope everyone has had a great day. mine was yuk i got no sleep last night at all (Dh was on night shift and mitchie was really sick) then went to docs today and he has the start of croup. Anyway looks like tonight won't be any better.
Cya

[Mikenzees mum]

wow thats really interesting because my dd is the thoe opoiste towhat you just said she is really floppy and flexable not stiff at all hmm im confused now,

[Katstribe]

Hi Mikensees mum
yeah well i thought we were on the same track too but then when i read that info about the hypertonia i thought differently. Sounds like our DS and your DD do have the same but maybe there is two different types of hypertonia???? Not sure but will definately be asking his physio what she thinks and then his paed when he sees him again next month. As from what i have read on hypertonia it is opposite to what we have here.
Anyway i will let you know what i learn.
Cheers

[Mikenzees mum]

i will try find the info that i got on about it, kenzee sounds a lot like your little boy i must say,

medical terms always confuse me lol

[Katstribe]

I totally agree about the medical terms thing!! It can be very confusing.
I would love to know more so thanks heaps.

[loopylulu]

Hi There

My daughter has hypotonia as part of her chromosomal condition. It was very bad at first but she is getting there. She was also 10 weeks prem so we have those issues as well.
PM me if you would like any more information.