My baby girl showing signs of possible Rett Syndrome

[seri4508]

i dont mean to be too foward but does she have retts syndrome my little girl dose the EXACT same thing and were thinking retts too.. she was frist diagnosised with I.S and her neuro told us to take her to gentics

[polkadotpants]

@beazymuzik you know what I'm done explaining nice, she did this out of the chair just as much as in the chair, the chair has fuck all to do with her movements. She was in there for a few minutes for a break after playing and having therapy ALL DAY. She was entitled to a break and so was I. Also take your racist comments elsewhere, me being white has nothing to do with seeing a problem with my kid's developement so sit on it. You should watch my recent videos of her before spouting shite.

[sweetchica2know]

First and foremost I have an oldersister with Rett syndrome and she was normal during her first 2 yrs. But then during her 2nd birthday party thats when everything changed. So if i were you i wouldnt jump to conclusions. She is a beautiful little girl. I have a daughter myself and shes not showing any signs. Just keep praying!

[polkadotpants]

@sweetchica2know I'm really pleased to say it's looking more like autism now, I know it sounds weird and I'd rather her not have any difficulties but I'm sure with you having a sister with Retts you can understand why I'd rather her not have to struggle with that. I heard from lots of families of Retts girls and the age of onset has been very varied, I think the main reason her doctor and I suspected it was her abnormal growth, thankfully we're close to ruling it out as she's catching up now

[queennicki1011]

She is so cute :D!!!!

[babycheeks3000]

she looks bored she is probably trying to entertain her self look at her .....by herself no toys around this is sad you left her by hersleft for 5 minutes anylil baby would be crazy too shame try playtin gaames with her or something wtf

[polkadotpants]

@babycheeks3000 My home is full of toys and at that age she needed help to even hold them let alone play, I'm the one who did that with her all day aswell as look after my other two, plus keep the house clean and you're going to try and make me feel guilty because I had a 5 minute break? Considering I have difficulties of my own I think I do a damn good job and I don't need you or anyone to tell with that. You saw a few minutes of what she was like most of the day, played with or not.

[polkadotpants]

@datzfast That can happen definitely, although from speaking to some parents it can be apparent any time from birth although I'm guessing that's dependant on severity; autism however becomes more obvious around that age but like Retts can also be noticeable earlier.

[michellen2008]

Your daughter is beautiful. Have two beautiful girls myself, one with Autism. Only familiar with Autism. Not sure what Retts is? Haven't did as much research on it, but if you have a concern, I think you should address it to her dr. It doesn't hurt, but thought I'd tell you, your daughter is beautiful and as for those comments what you said- ignore those.

[darkdj08]

homeopathy is =  to crocadial poopy.

I have Autisim and i know its genetic and incurable.

Mothers dont like to be told how to raise there kids.

Keep out of other peoples buisness keviish and stop living in this paranoid society we live in today you will just make yourself more paranoid, and dont blame me for that cause the blame lies with the govermeant for allowing the media and press to mass brain wash the countrys around the world for years. Since the invention of radio.

[polkadotpants]

Exactly, I don't know who to feel more angry at, the bloodsuckers selling it or the idiots being taken in by it and pushing the guarantee of a cure onto others who have the sense to know better.

[velouria6]

I'd like to add that my daughter is 7 going on 8 now and we love her as much as the day she was born. Even though Rett presents a unique set of challenges for our family - we don't let it rule our lives. Down that path lies misery. She is a wonderful, cognizant, fully aware little girl who happens to be locked inside her own body. She is sweet, happy and kind and brings sunshine into the lives of everyone she touches.

[velouria6]

Have you had the gene test done (looking for MECP2 mutation)? Our daughter started regression around 9-12 months. The biggest signpost for us was loss of "purposeful" hand use - i.e. she was holding and eating crackers, then not able to hold them for long, then not at all. She also began repetitive hand movements which is the other big signpost - she is a hand mouther and a hand tapper. My best advice is to a) consult with a developmental pediatrician and b)push for the gene test for Rett.

[dborrero]

how is your baby doing today ?my baby girl is doing  the same thing...

[polkadotpants]

Codey is a bit more severe than she is in this video, this was the beginning of a small regression and by the end of it she lost a few of her previously acquired skills and stuck there, she had some asessments a couple of months back which placed her developmental, mental age and language at the 6-9 month mark. I think it's normal for babies to obsess over their hands when they first 'find' them but this shouldn't last for very long; how old is your daughter and how is her development?

[keviish]

As a mother you know if somthing is wrong with your baby! In my oppinion, this kind of problems in baby´s come from vaccinations. It is possible to reverce with the help of a homeopath or someone with simular education. Dont vaccinate her again!!!

[polkadotpants]

Thank you for acknowledging that I know my baby well enough to know she has a problem, but do me favour and don't tell me to try bloody homeopathy or tell me it's reversible, wether she has autism or Rett syndrome either way it's an incurable genetic condition, homeopathy is medicine so diluted my doctor described it as a tiny drop of an ingredient in the whole Pacific. Don't you dare insult me or my child by telling us to believe that will make her better, or assume she's even had vaccines

[beninay]

your baby is just fine and he just needs to get out of that chair because it's hurting his back.

[polkadotpants]

If you'd paid attention you'd see I mentioned that my baby is a she, not a he. As for the chair hurting her back it is a soft chair and she was only in there as a break after a rigorous playtime and physiotherapy like any other baby would be entitled to; she needed a break and so did I. The chair is made for babies upto the age of 3 and was recommended by her specialist . She makes those movements on the floor, on the couch, in the chair, when she's held, not because she's in a chair.

[polkadotpants]

Codey has been diagnosed as having severe special needs, her mental, developmental and language age have been placed at 6-9 months old - she is 2 and a half. We don't know what it is, as it says in the description it could either be autism as it runs in the family, or Rett Syndrome. Currently we don't even know if her development will pick up again, she may always be a 'baby'. Please don't tell me my baby is fine, I'm fed up of hearing people who know nothing of her personally telling me that.

[brian4480]

ya know what fuck it, just forget everything i say..i don't matter to your life i'm some guy of the internet....who cares if im right..who cares if im wrong. Your gonna do what ever you want to do no matter who types to you, so im sorry for even commenting. I hope both of your babies live happy lives.

[brian4480]

i guess i just dont understand what the problem is....my baby pretty much acts just like yours, is there somthing not in the video that gives you more of a feeling ..cuz to me it looks like she is normal

[polkadotpants]

You looked over my page and comments and judged from that? Have a look at my recent videos of Codey, I won't have to point anything out, you'll pretty much see exactly what I saw only more advanced. I'm used to people assuming I don't know my own kids, you're not the first and you won't be the last, yes I have disorders, but to say I have Munchausens is horrid. Of course I'm trying to get her diagnosed, that's the only way they'll entitle her to a learning aid and therapy, to HELP my baby.

[polkadotpants]

I don't want my kids going through these things, but sticking my head in the sand and ignoring the problem won't help them overcome anything. My videos are here for several reasons, not for sympathy, you can shove that. They're here to show my kids when they're older I'm unashamed of them, to tell other parents if they see these things in their kids see a doctor as early intervention is critical, educate on both positive and negative sides, show parents their kids aren't the only ones.

[brian4480]

i did have a look...she looks like a girl with development issues....issues that could happen if a mom keeps her locked in a box of made up BS...i removed the comment so i wouldn't be rude but now that you have seen it, it stands as is. your a nut who created your daughters issues. Have you seen the other vids of rett...they look nothing like your girl..and if she has it why has she not been diagnosed?....Look its not my kid so who fucking cares what i say but from the outside it looks like ur

[brian4480]

reaching for it ...you have become comfortable with your boys problem and you need to continue the attention grabbing behavior...just try for one year to pretend in your own head that she is normal...treat her normal and take her to some speech and motorskills classes and if she is not better then you can fly over here and shoot me in the face

[polkadotpants]

For some reason youtube didn't give me a new comment notification so I just saw your reply; to be honest as pleasurable as it might be shooting you in the face I'd rather just tell you that she's looking much better than what she was back then, and I'm pleased to say it's looking more like severe autism that Retts at the moment - don't take that wrong, I'm not pleased that she may be severely autistic, but it's a better prognosis than Retts.

[polkadotpants]

As for her not looking like the other kids in Retts videos, those kids are mostly older and at a more advanced stage, she isn't diagnosed yet because the health service is debating wether to pay for a genetics test; I gave up waiting for a walking frame and physio for her months ago so do my own at home with her, the services here are so bad they have only just assigned her a speech therapist, I didn't want to wait so do that myself with her too, Also might be of interest to know she just got

[polkadotpants]

her report back from her last asessment a couple of months ago, they came back saying her developement cut off in every aspect somewhere around 6-9 months(she's 2); they also said she has significant special needs, but, and here's what pisses me off, cause = unknown. Sorry if I'm ranting here but of course it's unknown, they said it's either autism or Retts, they can't diagnose autism without first ruling out Retts but they're making us wait for the test, it's just so damn frustrating

[brian4480]

i dont know why it even came up i deleted it 2 months ago. like i said above who gives a shit what i think. There is no point for me to put my 2 cents in..so it was dumb of me to even try

[polkadotpants]

That's pretty weird, never had that happen before. I don't think it was dumb of you to express your oppinion, to some extent I do give a shit what people think, not so much wether they like or dislike me, but when people have said things like the way I look after her is the reason she's like that, or that I only want attention it upsets me because I do everything I can to help my children have some normailty and gain some quality in their lives, it's relentless, play therapy, working on speech

[polkadotpants]

keeping them stimulated. To work so tirelessly to try to help them, and put it on here warts and all to try to show people that this is what it's like and to spread awareness - then to have people say those things, just knocks you back.

[websmile2003]

Hi

my baby is almost 6 months and she is always looking at her hand as if counting.She is also arching her back like this but only to look at me and smile or laugh as if she is calling me to play with her.Please tell me why do you think this is an Autism signs.I really got woried after seeing this video.She doesnt arch her back all the time,only when i am in her back so she would smile at me.Please tell me

[1alberteinstein]

i think you are sick ! thats a baby who need to be loved and is bored not having any disorder

[polkadotpants]

I think you're pathetic so I guess the feeling is mutual. Do me a favour, either watch Hanging Out With Codey or stop wasting valuable oxygen - either way I don't have time to argue with some idiot that knows jack shit about me and my kids - and just so you know, she just had an asessment which puts her mental and developmental age at 6-9 months - she's almost 2 and a half, if you still think she doesn't have a disorder then that's upto you.

[cardinal12803]

Those who dont walk in our shoes dont get it ~ Ignore the ignorant jerk ~ not worth your time. ((hugs)) People see my hunter who think all those with autism are "rain man" when in fact it is a spectrum and there are mild cases, like my son. The times when he struggles are heartbreaking!! It has nothing to do with bad parenting ~

[bagmantastic]

heya, just wnated to let you know to keep it up in there :)

growing up with autism is hard,b ut having parents with youre aparnt mindset does help alot! :)

i hope youre son will grow up to be the best man he can be.

but then im sure he will, judging from the similar background him and me seem to have

[MarkCrilley13]

Just ignore the losers, you have a beautiful baby, and I'll be praying for her.

[bagmantastic]

go jump off a cliff will you?

i happen to know this kid is loved to bits and taken care off nearly 24/7

how well do you take care of youre kids?

do you even have someone to make them with?

i doubt it!

if the man whose name you took was alive today hed be ashamed of you!

[80LaDonna]

What is rett syndrum?

[gringazo79]

I think my original comment didn't make it on. I saw this video in my graduate class studying Autism Sprectrum Disorders. My professor (a specialist and researcher in ASDs) felt like it was a good example of the early warning signs of Retts.

She showed us the video, and then talked about the importance of doing more research on ASDs that will allow for earlier diagnoses.

I just wanted to say thankyou for your video!

[mrmrlee]

As far as I know there is no genetics test for autism, mild or severe, so I am not sure what you have in mind, a thorough evaluation by professionals is the only way to detect autism and it is generally done at a more advanced age.  What exactly led you to suspect severe autism?

[gringazo79]

The MECP2 gene has been different in 100 % of the cases in which it has been tested for Retts, as far as I know. So genetics tests would be for Rett Syndrome.

[murryification]

i cant believe the closed minded comments from some un-educated ppl on here. Maybe they should stop and think why a mum would put a video on here. Obv cos she is sick with worry and wants people's advice on what to do, not jumped-up twats that have nothing better to do than sit on the computer all day, spouting out a load of "Child abusive" crap. They obv don't have kids themselves cos if they did they would see just how concerned this mum is and is desperately seeking advice and help. Grow up!

[polkadotpants]

Thankyou so very much for your kind words, sometimes there's just no way to show people what you see from your perspective - alot of narrow minded people out there I think; no mind though, luckily for me I'm developing a thick skin and have always been stubborn in my oppinions hehe x

[Aarensmom]

what a pretty girl! Its so cute when she grabbed her feeties. Wish I was still that flexible.

[polkadotpants]

Thank you hehe, yes she is very supple, up until the last year I could put my legs behind my head - although I wouldn't try it now, knowing my luck I would get cramp and have to be rescued! xD x

[SuperDuckyWho]

Hey! Thanks for your vid! My sister did a lot of the same things when she was a baby, like the hand staring and the feet things.

In fact, my sister's been doing a lot of twitch in her leg recently, and though she's in her 20s nw, a response you made to one of those "OMFG HOW COULD YOU HURT THAT BABY!" people made us wonder if she doesn't have muscle spasms as well even at her age.

[polkadotpants]

Glad to have helped, I hope you find some answers soon, muscle spasms and mild dystonia are more common than people think, I get them too which helped me recognise them so early in Codey, they can occur on their own or as a symptom - does she have any other symptoms of anything? Best wishes to you and your family, let me know how you get on x

[mihazone]

Polkadotpants, please, I need your advice. My daughter (1.4 year old) has Rett Syndrome too. I'm from Romania, excuse my english. I wanna know what treatment your little girl is taking now. I understand you very well, only parents with our problems can. Be strong!

[polkadotpants]

Hiya, Codey has not been diagnosed yet, we are waitng for a genetics test to be carried out - we do know that it is either sevre autism or Retts; unfortunately there isn't much treatment for children with Retts, and as far as I know most treatment is aimed at making them more comfortable; there is no cure, or treatment that will reverse Rett Syndrome - I would recommend regular exercise by physiotherapy to keep your daughter's body supple - you can do this by lots of foor play, wiggling crawling

[TheCrimsonCrippler]

you do know babies have a tendancy to wiggle around a lot right? doesnt mean theres any thing wrong with them.

[polkadotpants]

Yes I'm more than aware that most babies do, I was mostly emphasising her sudden stiffness, shakes and hand and foot twirling. Watch a more recent video, Hanging out with Codey, the body movements you'll see started out small like in this video, but as she has regressed more (she stopped developing mentally at around the 9 months mark) they got more pronounced. So far she has been confirmed as having special needs though her specialist said she's not sure if it's Retts/severe autism.

[71ali]

You clearly know it all and cannot accept feedback. I am not interested in your lengthy retorts.

[polkadotpants]

I know a great deal more than the people making comments based on assumptions. If that makes me a know it all then so be it. Your first comment accused me of treating my baby unfairly so I simply stated why she was in the chair at that time and that she rarely uses it. You should know that an explaination and retort are two entirely different things. If you feel otherwise perhaps it's best we don't speak again, and I mean that in the kindest way possible, no ill feelings.

[71ali]

I do not retire my 1 year old to his back, restrained and struggling and I do not know anybody else that does this. I am not the first person that has commented on this. I know you feel that you can explain and justify it. It maybe useful for you to consider this feedback that people have felt strongly enough about to leave you. I don't know whether your daughter now requires a wheelchair at the age of 2I suspect though that a pushchair would suffice.

[polkadotpants]

She was not struggling, she has muscle spasms and gets distressed - her body movements make it dangrous to be on the floor the whole of the day, which she had been before the video, doing play threrapy and extensive physio. Considering I hve disabilities myself cannot always hold her sufficiently and I'm not about to risk her safety by playing the marytr to win others' approval; and if they see fit to pass judgement after watching a few minutes of video and making assumptions then more fool

[polkadotpants]

We were told by her doctors that her puschair offers her too little posture support, so she will either have a wheelchair or adapted pushchair with specially moulded seats to ensure she does not slip down, I have searched high and low for a regular pushchair that does not compromise her posture but cannot find one anywhere, I'm not going to sit back and allow her body to suffer for fear of oppinions of people who do not know her needs as I do.

[71ali]

why do you have your one year old child trapped supine in a chair?

[polkadotpants]

For the same reason we retire to a sofa at the end of a busy day, what am I expected to do, leave her on the floor where she could hurt herself? Watch hanging out with Codey, then tell me she doesn't need speciaist equipment to keep her safe while mummy has a quick break - and that chair is designed to accomodate baby to toddler. She is getting a specialist weelchair soon, or will I be judged for that too?

[LoveForBigCats]

O_oI'm 13 and I move my feet repititevely when I'm snuggling with my dog in bed, and I move my hands a lot. O_o I don't have Rett Syndrome do I? :O Nah, I'm probably too old.

P.S. she's cute. ^^

[polkadotpants]

I'm quite sure you don't have it hehe, some people just like to move their hands and feet - Codey has many other problems on top of that so I wouldn't worry lol, and thanks! \^.^/

[foster3211]

same as fikrinasir...it is helpful for students. i hope that we find a cure soon!

[polkadotpants]

Thank you, I hope my videos help others to learn about these conditions - it ma help you to watch a more recent video of Codey, 'Hanging out with Codey', her movements are much more severe now - please note there is a chance she may not have Retts, but severe autism, they are very difficult to tell apart at this age though x

[fikrinasir]

hi, i come across this video after searching for hand wringing. i'm medical student and this video has helped me. thank you so much. and i wish i all the best in future. May God bless u and your family! thank you again.

[polkadotpants]

Hiya, thanks so much for your wishes ^^ Codey has not yet been diagnosed, but we do know it is either autism or Retts x

[ninalucas23]

This is not out of boredom. I have a 3 yr old that I am trying to get diagnosed for either autism or rett's, I wish you luck on your baby girl, its hard knowing you child might have something wrong with him or her. And a mother's instinct is usually right like lucie said. Again I wish you luck, hun. God Bless you and her daughter.

[polkadotpants]

Thank you so very much, it's lovely to meet another parent who shares the same concerns - if ever you need to talk you know where I am :) Best wishes for you and your little family x

[ninalucas23]

You are so very welcome and yes it is, I just found out but we are getting closer and closer to getting him checked for either or, he has an appt. with a genetic doctor in 5 months I'm gonna try getting him in sooner. Thanks for the support and god bless your family and best wishes also. I am also here if you need someone to talk to. thanks again

[fieldsfamily2006]

Honestly, what I see here is a baby who is bored to death and terribly understimulated. Maybe she could spend some time out of the bouncer, maybe even in a playpen or something? She needs a toy. I mean, she is playing with her hands and feet out of sheer boredom. Sorry if I seem blunt. Your children are beautiful.

[polkadotpants]

Thanks for your oppinion but she had spent the entire day on the floor on her playmat surrounded by toys and being helped to play with them, she was in the bouncer not even 2 minutes when I began recording and was out soon after to play in her play cot while I did sensory therapy with her brother. I really do wish people would not assuume this is how she spends her days - yes she is in the chair when she has had a big play or if she is sleepy or wants to drink a bottle ctn...

[polkadotpants]

...but I don't suppose it's all that different from us retiring to a sofa when we have had a busy day. Also she often chooses to play with her hands and feet instead of toys, nomatter how many we buy for her - the other day I spent £50 on a big floor toy with lights and music - only for her to sit beside it rocking and wringing her hands! Thank you very much for your kind comment x

[sheltiepaws1]

I have an 8 year old son with autism, just be greatful that you have this child and love this child with all your heart, get the child diagnosed first then do everything you can to help your child.

The biggest thing is early intervention, learning how to work with your child, it'll be OK.:)

[blainemom]

Don't post 'til diagnosed. Codey jumped when Dominic started screaming in his meltdown video. She's probably psychotic from that. as always she was in that infant bouncer on floor. I have 6 yr old classic autistic son & have sympathy for u but this video really isn't valid w/o diagnosis. Maybe post on Dominic and wait to post on Codey when you know for sure. Maybe some earplugs for her wouldn't hurt either. I don't see how she can develop normally with him screaming near her like that.

[polkadotpants]

I'm quite sure she isn't psychotic, especially not from her brother's tantrums - though admittedly I do agree it isn't good for her mood. Thankfully though, kids are rather resilient. Also I would like to point out that my take on Codey's videos is very much a case of 'This is what I think she may have, and this is why I think it. I don't ask that anybody share my oppinion, and if you read my previous comments you'll see that I am very open to the possibility that she may not have Rett's.

[lucieann21]

HI, I just CAN NOT BELIEVE some of the rude, disgusting, insensitive comments that morons have posted on here.. on YOUR video of YOUR child.. I really sympathise and am appologising on behalf of our sometimes idiotic human race. Your daughter looks beautiful and dont worry.. I see what you see, follow your instincts .. mothers instincts are usually ALWAYS right. :) @>-->--

[polkadotpants]

Thank you, it's lovely to know there are some very sweet, pleasant people around on here :) I'm very glad to say that Codey's mobility has improved in recent months, she can now stand holding onto furniture - I know she isn't in the clear yet, but wether it's Rett's or autism, it's a step in the right direction :) xxx

[GrungeGirl83]

Lady, with your illnesses and your kids' illnesses I think its time to stop having children

[polkadotpants]

I made that decision a long time ago sweetie x

[inagod]

seems normal to me

[polkadotpants]

Maybe I see it more because I know what to look for, who knows; she's just begun seeing a specialist and OT as her body movements are getting out of control. We know she has special needs but the frustrating bit is telling Rett's from autism, we won't know til she's older.

[Closed8]

hello :) you have a vey cute little girl, very active! However i dont think she has Retts Syndrome. My younger sister has it. She developed as a 'normal' baby until 18mth where, her development slowed, but she was very still and distant. But your little one seems very alert and mobile. If she has started to loose her Gross Motor Skills, may i suggest a play pen. Where she can have some sort of stimulation or room to move/roll around.

[KiKuShKaKiKa]

what is rett syndrome??

[Sayles1955]

How on earth do you expect this poor baby to act???She is 1 yr. old and strapped into a seat made for a newborn.What sick idiot mother would do this???Why isn't this baby on a blanket on the floor with a pile of age appropriate toys???Or better yet,with her mommy playing with her ???She has nothing to do but play with her own hands and feet you sick bitch. You need to be locked up and your kids placed in a NORMAL home.

[polkadotpants]

Hey dipshit, did you bother to read my explaination of what you just mentioned there in other comments? I doubt it or else you wouldn't have made such an idiotic comment. Why wasn't she playing with age appropriate toys? Maybe because she stopped developing mentally at 6-7 months and couldn't control her hands enough to even hold a toy; in other words honey you'd do better to shut it unless you know what you're slighting me for, dumbass.

[SuperDuckyWho]

Wow... what the hell is with these people? @ o Have they never seen a child with a disability before? And what, do they just roam around YouTube looking for "autism" or "Rett" and start accusing the posters of child abuse? "Oh god! How could you cause that child to spasm and obsess with her hands like that?"

[polkadotpants]

I know! People never cease to amaze me with their idiocy sometimes! I think you're definitely right, they have nothing better to do than troll - I just feel sorry for their kids!

[amcooper81]

My son is in the diagnostic process but I also worked with kids withRett Syndrome. Good for you for being so observant

[mlarr]

Diagnostic process for what? 'Coz only girls have Rett Syndrome.

[4misskate]

Boys can unfortunealty have Rett syndrome too. In the beginning it was assumed that they couldnt b/c most boys have a xy Chromosome & since the mutation is on the x chromosome since bboys dont have a "back-up" copy they would dies before or shortly aftyer both. there have been cases pf bpoys being diagnosed with Retts & having a XXY

[MarlieMewy]

Boys can have it too, except it's very very rare.

[kara20]

Boys who have it do not survive.

[lnsypnsy]

Sorry to hear you are so worried about your daughter. My son is autistic and we picked it up very early, despite everyone telling me he was just lazy etc etc. I hope to god things are fine but if they are not you will cope...I promise. I don't know much about Retts syndrome but what I do know is that you must follow your insticts because parents know best. All the best and I hope she's OK...shes gorgeous!!!

[computerjunkee]

I hope your daughter gets diagnosed as a healthy baby girl! Some of these idiots don't know the worry a parent or gaurdian can have for their baby! I'm praying for the best!

[SilentStickFigureThr]

Kudos for noticing this so early. No doubt they'll get all the love, care and support they need.

[Gl4d2B]

She's pretty like her mama:)My mom has worked with a couple of little girls with Rett syndrome, and they were absolute sunshine.

[shona23]

comments enabled)But, to me, she looks bored, she looks like she's arching her back to see whatever/whoever is behind her as she appears to be smiling at something. But hey, it's your kid and you know her best (I hope).

[shona23]

Completely agree with Lorna. I'm not saying she hasn't got Retts, obviously, as I am in no way qualified to make that kind of judgement, but, I don't think you should be putting videos up to "raise awareness" or anything UNTIL your kids have been diagnosed with anything, you never know, they may have nothing wrong with them and your videos could get someone panicing about their child.

Like I said, I'm no proffessional! Just my opinion (bearing in mind it's a video on a public site with...

[lornamc83]

A lot of people would say your looking for sympathy (not myself obviously) actually some may say its like munchausen (im assuming you know what that is)

Again, i ment no harm by comment, YOU have taken it completley out of condex, for what seems to be a bizzare argument over a childs welfare. Spend less time shooting your mouth off, and more time with your children. Works for me.

[polkadotpants]

I can't believe myself how far you're going with this, munchausen are you crazy? As far as the 'argument' is concerned I thought we were simply exchanging oppinions, you didn't understand from my point of view so I explained in depth - if that's made me look like an attention seeker to you or anyone then so be it. My son HAS been diagnosed, and as for panicking somebody, if their child does the same as her they should see a doctor - she isn't doing much here but read the damn description.

[aware4autism]

well, seeing as how Münchhausen is a condition caused by the mother, maybe this Mom should get a nobel peace prize, after all, she figured out how to cause autism!!!!

lorna- karma has a way of repaying people like you.

[lornamc83]

Now i sure as hell pity you if both yourself, son and duaghter all have some condition or another, but if i was you i would stop looking for faults in your children, and enjoy them as babys ....... it doesnt last long.

And again looking at the fact your daughter CAN sit up CAN laugh, smile, babble AND grasp things, i wouldnt worry too much.

[polkadotpants]

It wasn't until I was approached by several parents of girls with Retts that I even considered the possibility - I thought it was autism like with myself and her brother, but looking closely there was just too much that didn't match, then I researched it and found more similarites before it was confirmed a real possibility by our health visitor; sure it's no diagnosis - but when that itself could take years I'm not gonna sit on my arse while other parents are looking for answers.

[polkadotpants]

Treatment? There isn't one, just stimulation and making them happy and comfortable. If parents of girls who have been diagnosed as having Retts tell me that's exactly how their girls are, that's good enough for me to say 'This is what Retts looks like', I'm in no way saying she is for definate, the facts are laid bare. I have comments here public as sometimes people have questions or comments, also others may benefit from seeing them eg: developmental discussion, personal support ctnd

[polkadotpants]

they're not wonderfully moderated but then some people are idiots and say rude things; their comments remain showing because I want those people to know they can't bring me down by mouthing off.

Don't sympathise please, it makes me feel like a charity case and I truly am not, I can't speak for my kids in that sense but we get by, that's enough for me :) Again I don't look for problems in them, just remain aware and address anything that pops up ctnd

[polkadotpants]

believe me it doesn't make me enjoy them any less, I'm all too aware their childhoods will soon be gone - having decided not to have any more kids it only makes me treasure them more.Yes she can now sit, laugh smile and grasp now, though that's not to say she always could, doesn't find it difficult or that she'll retain those abilities - I'm just glad she can for now :)

[aware4autism]

who says symptoms of ASDs are faults, and how do you gather this mom only sees faults in her children? When I state "my daughter's hair is brown" it is a statement, just as "my child has autism, and displays autistic traits".

Autism is not a fault. This is where the world needs to change their thinking.

My autistic kid is smarter than you will EVER be lorna...

[lornamc83]

Now sorry hun, but your videos are NOT for raising awareness as you have NO diagnosis, therefore you are under no rights to say this is what a child of Retts is like.

I expressed my opinion, you did not like. Why have public comments posted to your profile?

[gringazo79]

hopiu;l

[lornamc83]

If someone said that to me (my daughters been having treatment since 6 months old), i would take it on board, especially if i have had no diagnosis, and or doctors thought there was nothing wrong. Hence no one actually testing your daughter for the condition.

[lornamc83]

Of course i know the symptoms! Our genetics doctor thought retts was a possibility in out daughter, who btw was nothing like your wee girl at that age, she didnt make noises or laugh till around 16 months.

My wee girl is now five!

[polkadotpants]

Then surely by reading the description you'll recognise a few, in which case it begs the question why you assumed I look for illness in my kids. Of course I don't, I noticed my children baving difficulties and looked into it, posting videos to raise awareness, help educate and essentially achieve a diagnosis so they will have the same opportunities in life as any child, I won't be made to feel ashamed of that.

[polkadotpants]

Granted your daughter sounds more severe than mine, but then you know the symptoms of Retts, you'll know she comes and go's and that since Codey is under 18 months she could regress to having the mental age of a newborn, in addition to having the feet and hands of a new baby.ctnd

[polkadotpants]

How would you feel if when your daughter's doctor said to you it could be Rett's, you mentioned to somebody then that person was to turn round and tell you they know better than you, and that you should just play with your baby; you might feel like I do.

[lornamc83]

I agree with you shona, in every video this little girl is sitting in this chair, with no one talking to her let alone playing with her.

Its a shame really, as on top you got your mum claiming ilness!!!!!

[polkadotpants]

Shona and Lorna, 5 minutes is a long time I agree, and wether you believe me or not somebody is always interacting with her. She is in the chair because she could not sit up at that point and wouldn't allow anybody to touch her for a period of just over 2 weeks, also she could not hold a toy, so maybe you would like to ask me a few things first before assuming. As for why I allowed her to get bored, see my reply to Lorna on my other video of her showing various signs.

[polkadotpants]

Also, I haven't 'claimed illness'without any clear indications as you would suggest, in fact if you read my previous comments you'll see that I clearly state that she is undiagnosed and Retts is just a possibility, of course I hope she isn't. Yes I am more than aware that Retts is a serious condition and can assure you I do not use the term lightly, I have researched it thouroughly, right down to genetics research and continue to do so.

[polkadotpants]

I'm not going to pry, but does your daughter have Retts? Do you know the symptoms and compared them to my daughter? Come to think of it, other than the videos and information I have chosen to display, do you know her as I do? 5 minutes of boredom to aid a diagnosis isn't such a hardship when you consider she's usually occupied, but coping with the next few years if we don't find out what's wrong and how to help her is.

[shona23]

At least 5 minutes where spent filming this video of a baby who's wide awake and alert and nobody thought to let her out the chair or play with her? Weather she has Rett syndrome or not, you'd think someone would interact with her. 5 minutes is a long time

[aware4autism]

We can learn so much from youtube. I'm certain from viewing this 5 min clip this mother never holds her child, and is constantly videoing and labeling her children. She probably is a drunk and beats her children, too.

[polkadotpants]

@aware4autism I don't know how I never noticed your comment before but seeing it now and seeing your name I'm pretty disgusted, I hold her an awful lot but didn't in this video because I was holding the camera, I sometimes need to use two hands to hold it. As for being a drunk and beating my children, I hardly ever drink except for a glass of wine on a special occasion like with Christmas dinner

[polkadotpants]

my childhood was far from carefree, I won't indulge you with details but I would never raise my hand to any child.

[gamiezion]

youre a raving lunatic, did you know?

how the hell can you make an assumption, based purely on a 5 min clip that was inteded to show (and only show) the daughter and her sympomts.

if you knew polka, you would know she literally wouldnt hurt a fly, or any other living breathing creature for that mater, even when she had to for her own god damn safety!

oh and like she said, i can personally attest to her not being a drunk either.

[lornamc83]

Watched your videos, do you look for ilness in your kids?

I have three plus 3 nieces 4 nephews and lots of cousins.

Your babys bored, Retts is a serious condition, not one you should throw about lightly, my daughter has a genetic syndrom, epiletic aphasia, and a hell of a lot on top.

Love, try playing with your baby.

[underserf]

Dude...

I watched this one because of Dominics vid you posted.

Umm, you =have= researched Retts yeah? It's a LOT more serious than a bored baby.

If you don't mind me asking - how many children have you raised?

[wow, I went over the limit long before I completed the thought]

Long story short, I have 5 kids, helped raise a dozen others, she looks bored more'n anything else.

Hand regarding as pathological? Yikes.

=M0=

[polkadotpants]

Yes I have researched Retts in depth, and yes I am aware that it's much more serious than a bored baby. And although Codey's videos are labelled as her showing signs of Rett syndrome, that's all I have claimed, that she's showing signs - I know there's still some chance that she is either just very poorly developed or even just autistic; the only reason I thought it was more likely Retts is her abnormal growth in keeping with typical Retts, floppy muscles and increasingly obvious retardation.ctn

[Binna76]

I watched this video because of your son Dominic. I found his video because I was looking for som videos of autism.

I have 3 girl with autism.

I just wanted to ask you about Codey.

You say that you thought it was more likely Retts dont you think its retts anymore or ? Isn´t it right that nowadays the syndrome can be diagnosed with genetic testing ?

[polkadotpants]

Hiya, it's kinda hard to explain but yes I do still think she has Retts or something presenting itself as very similar - then there are times when she suprises me like a fortnight ago, she suddenly lunged forwards in her cot, grabbed the rail and stood up - now she can sit and stand - though only stand in her cot - however, her muscles go from very floppy to very stiff when she does this, and now one of her feet (which haven't grown since she was a few months old) turns in, she sometimes. cnt

[polkadotpants]

holds her arm across her chest with her wrist bent over, her head and hands have also been noted to be growing slowly, so at the moment it is quite difficult to be precise on this. Yes I've heard about genetic testing too, although I've been told that they won't do it until she's older and they've exhausted regular methods. Thanks for getting in touch :) Happy holidays!

[underserf]

You have Aspergers? And you're in the UK?

I get it now, sorry, I'm an idiot ;)

[ChrisBenoit4evar]

lol dumb cumbucket stfu and gb2/kitchen. btw dont breed anymoar your genes fail. lol @ retard baby

[tinyfury69]

Dearest Chirsbenoit4evar

My only hope is that you don't reproduce to create more slim balls like yourself.

[ChrisBenoit4evar]

reported for shocking content

[happeh]

Hello. I chanced upon this video, and I do not believe that anything happens by chance... Do you know anything about Yin Yang Theory? I think the movements the baby makes could be natural movements meant to help the growing body. Have you ever tried to get the baby to do any exercises? I think that if you tried to train the baby to do a simple horse stance, or some other kind of Yin building/stabilizing exercise, the babies movements will change as the Yin part of it's body grows or stabilizes.

[happeh]

Can you examine the baby for me? In the video, the left side of the babies body is the most active side. Can you visually examine both sides of the babies body, and perhaps palpate, feel up, both sides of the babies body to see if they are even? I believe you will find a physically observable or feelable difference in the left side of the body. I would expect the left side to be smaller/thinner because of her movements, but there could be any kind of difference.

[polkadotpants]

Hi, no I've never heard of that theory before, but those things interest me so I'll morethan likely read up on it. Train her to do a horse stance? she's just learnt to sit up and still cannot put her feet down on the floor, let alone bear weight on them, though we try each day with her. I don't see any difference in the sides of her body - and while I appreciate your oppinion, I'm sure these movements are not simply natural movements to help her body grow. I wouldn't put a name to it otherwise x

[shandoluffssimon]

What is this ?? Please reply somebody x

[nams0001]

Hi, thanks for posting this vid, i'm a psychiatric technician student in california, we are currently studying different types of disablities, such as rett's syndrome. Thanks again, God bless you & your whole family.

[foryoutulips]

I'm so sorry you're daughter's going thru this. I wish her well and many blessings.

[knightcardio]

The baby must have normal development until between the ages of 6 and 18 months and have normal head circumference at birth followed by a slowing of the rate of head growth with age (between 3 months and 4 years). Check on MECP2 mutation on the child's X chromosome; which is sometimes negative with some atypical variants of the disease. Hope the best as an outcome to this cute girl.

[kazza224]

when she arches her back it looks 2 me as if shes just trying to look at u,,does she do this even if ur in front of her,just wondered

[polkadotpants]

Hi, yes she does no matter where I am - her eyes sometimes roll back a little. Thanks for watching.

[laineyful]

Hello-She is very cute! So has your daughter tested positive to Rett Syndrome? My daughter also has Rett Syndrome.

[polkadotpants]

Hiya, I saw your video a couple of weeks ago and thought it was really beautiful, they're both gorgeous! At the moment we're still waiting for a first appointment with a specialist, so right now everything is unnoficial - though everything seems to fit. I hope you don't mind me asking, but being more experienced than me could I ask your oppinion? I know the videos aren't great quality but is there anything you recognise as a clear sign? Thanks for getting in touch, it's great to meet you :)