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CP?

Qwerty99999
Qwerty99999 Community member Posts: 18 Listener
edited February 2022 in Cerebral palsy

Hi, 


I’m hoping some people can offer advice! 


My little one is 5 months and sometimes feels really stiff, and other times not. Her stomach is weak. Like once I had to use full force to lift her arm up. 


I first noticed things where odd when she looked asymmetrical, the left shoulder appears internally rotated and hand is 80% of the time with thumb in. 


She never really moves her arms above her shoulder. Only occasionally have I seen her do it. And it’s really hard to like get her in jackets etc! Her fingers seem curled.


The right side can also be fisted too but I would say more open than the left. 


Her movements can be jerky and her co-ordination for a 5 month old seems to be behind I would say. 


She can hold toys, and grab at toys and bring to midline, and bring to mouth etc. 


She has okay head control! 


She can roll back to front (right to left). On tummy time though she’s not very good at lifting her head. She’ll do it. Then get tired I guess and have to then lift it up again. 


Her legs also concern me. Again. Look asymmetrical. Can kick them, Infact does so quite a lot. My concern her is that the feet tends to turn inward, and she does cross them at the legs, and when kicking the legs will go over and under and hit each other after a few kicks. 


She can get feet to mouth and does play with them. 


She babbles, smiles, laughs, can track with her eyes. Very alert. For sure. 


When she’s eating and falling asleep her hands/arms will move up and down. 

She also arches her back ALOT. And I can’t think why! 


All I can think of is CP. 


I have seen a dr, general paediatrician, 2x nhs physios and they’ve all said she’s doing great developmentally and actually think I’m crazy first time mum. So much so I’ve got referred to a psychiatrist, but all I’m telling them is how much my little one has CP and no one believes me. 


Is there anyway the above could not be CP and something else? 


The only thing I can think of what caused it as I didn’t have a traumatic birth, but when she was 2 days old in the hospital, I was putting her the hospital crib and she sort of dropped into it. I didn’t think anything of it as she stayed asleep. Now I’m wondering what if she was unconscious or something and had lack of oxygen with brain swelling and I’ve not noticed! 


Help 

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Comments

  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Omg. I’ve just realised obviously you are right with the dropping in the cot it weren’t that. 

    I think she was severely de-hydrated. Basically we went to the hospital as we thought she had reflux and constipation, and they said oh probably over feeding her…. So we dropped it down, and now I think she was too hungry and probably didn’t feed her enough for about a week and she got badly constipated! And basically we took her in cause she refused to feed! Now I’m thinking she was too weak to even suck. I can see photos of her looking back doing sheer hunger cues but we thought it was reflux. When we went in because of vomitting and not taking milk it was around 18hours before she was given fluids. She also lost weight. She was three weeks and 7lb 9oz

    Would this have done damage?
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Ah okay! Sorry, I didn’t realise not sure where to turn. Can you read the above to see if my little one has what you think is CP? Healthcare professionals don’t seem to think so. Sorry I should have said 10 days before that she was 7lb 12oz
  • chiarieds
    chiarieds Community member Posts: 15,902 Disability Gamechanger
    Hi @Qwerty99999 - & welcome to the community. I can only suggest that you repeat your concerns to her Health visitor or GP as they are in the best position to advise. It's also very normal for babies to lose their birth weight in the first few weeks of life.
    You know your baby the best, so talk to her Drs, etc.
    Kindly let us know how you get on.
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    Hi there @Qwerty99999,
    The first thing to remember is that all babies develop at different rates, so try not to put too much pressure on yourself to make sure she reaches these milestones at the pace she might be expected to. However, by all accounts, it sounds like she’s doing brilliantly! CP or not, I’m so pleased to hear that her development is being looked at closely by her medical team. Definitely keep attending those appointments, so it can be noted if anything changes & she can get the right support as soon as any symptoms start showing, if that’s the case.

    I’m glad that you’ve got some mental health support in place, too. I can imagine that the psychiatrist referral is quite overwhelming, but I’m hopeful that it’ll be a good place to talk through any anxieties. Being a parent is hard under any circumstances & it’s important to look after yourself. Do you have any friends or family to support you? 

    We’ll always help if we can! Definitely keep us updated :)
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    edited February 2022
    Hello @Qwerty99999

    Wishing you a very warm welcome to the community, you are amongst friends here so I hope you enjoy taking part. This is a very supportive and welcoming place which I hope you have already found, so if you ever have any questions then please feel free to ask and somebody will help as best they can.

    Sorry to hear of the concerns you have about your daughter, and that you haven't been able to access support just yet. If you do feel as though there is something not quite right, then the best thing to do is to consult a GP again and hope for a better outcome. If you aren't happy with the treatment from the GP you did see, you could always go to a new one.

    I can imagine that as a parent, you just want some answers and to get the best outcome for your child, which I'm sure that other parents on here will be able to empathise with. 

    We have a children, parents and families category on the community, so you might find it useful to have a browse through there to find some related discussions.
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  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @Qwerty99999

    Welcome to the community. 

    Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so. I think the important point here is that you have concerns and you sound as if you need those concerns addressed by an appropriate person. It would not be appropriate for me to speculate if your daughter has cp but I would suggest that you express them to your daughter’s GP. 

    By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters. 

    Receiving a diagnosis can bring up a mix of emotions and it is very important for you to remember that there is no set way that you should feel.  
    Your daughter should be under the care of a paediatrician and should be given access to regular physiotherapy this will help with her mobility and coordination. We have lots of information about Cerebral Palsy and services such as Navigate and Parents Connect for families that have received a recent diagnosis.  
    I live with CP too and I'd be more than happy to talk to you over email about your thoughts and concerns. Please remember that you are not alone in your journey

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • forgoodnesssake
    forgoodnesssake Community member Posts: 498 Pioneering
    I would echo what Richard has said.  And as a parent myself of someone with CP (now a young adult) I would say that if you have concerns (and much of what you are describing does in some ways sound a bit like my son was, but he had obvious issues right from birth) it is very likely that there is something going on, but exactly what, needs more investigation by relevant professionals.
    Do you have any other children?  If you don't then of course it's possible that you are just very very anxious as a new parent; but if you do (as i did) then you will just know that there is something different with this baby.
    Please do not blame yourself for any of this and certainly not for a little "drop" into a crib.  That will not have caused anything like you describe. 
    Similarly being unable to feed/being potentially dehydrated will not have caused the things you are observing, but the difficulty feeding MAY be a result of some sort of problem, if it turns out that there is one.
    There is not always any indication at birth that a baby will go on to be diagnosed with CP; some are indeed full term, good weight etc etc.  I am not saying this to scare you..but rather just to be honest...it is not always helpful if well meaning people assure you that your baby will be just fine because the birth was normal, the baby was a good weight etc, when you know/feel in yourself that something is not right. (my son was term plus 10 days, 8lb or so weight!)
    It is very hard when no-one seems to take your concerns seriously; in our situation we were lucky in a way that because there was an incident (no fault) during birth, he was closely examined and monitored, and eventually diagnosed (by us at 5 months...by the Dr at 7 months!)  But even then we had a physio telling us that he wasn't very severely affected because he had good movement in all his limbs and very little stiffness...that;s because he has athetoid CP and not spastic CP but that physio, aged over 50, had seen athetoid so rarely that she didn't recognise it.  And in fact it affects all of him quite significantly!
    Anyway, hope you get some constructive support and help.  Best wishes, jenny
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Yes! Thank you. I deffo believe it to be athetoid, rather than spastic. 

    So many signs, even when she’s on her tummy I can she’s using her neck to extend her head up, she’s not using the shoulders/elbows for strength. 

    My little ones posture is odd, like her hips seem tight, resulting in the legs turning in and the feet curl in too! And the arching of back, and it seems when she goes to grab a toy (that’s not in midline) she’ll come at it such a weird angle and her wrists almost come at it backwards. 

    It’s my first baby, but I’m so observant, like even at baby classes in terms of posturing (she is so different). It’s not like every one of them is different. It’s like my little one differs so much to them all, and they all appear the same with in a range. 

    What caused your little ones athetoid CP if you don’t mind? 

    My birth was an induction with oxytocin, she came out with good apgar scores. 

    I’m so confused! 
  • forgoodnesssake
    forgoodnesssake Community member Posts: 498 Pioneering
    Don't mind at all.  Normal labour (no induction...was induced with first son, who was eventually hoovered out by ventouse!) then near the end baby heart rate dipped and didn't properly recover, Midwives basically ordered me to push him out quick, which i did.  Heart beating by no breathing for approx 15 minutes so on oxygen immediately, which heart pumped around the body.  Kept in special care for 10 days (2 days in incubator but looked huge compared to the other prem babies!)  Looked pretty miserable pulling faces and hands tightly clenched.
    The Asymettric Tonic neck reflex was very obvious from day one actually as he kept sort of stretching his neck to one side.
    I knew a bit about CP (not sure why) and remember asking the paediatrican on his rounds if he though the baby might have CP and of course he said it was far too early to tell (9 days old)
    Eventually diagnosed with HIE (Hypoxic Ischemic Encepalopathy) at a few weeks, which may or may not develop into CP.  His did.
    The only thing that we wondered about after the event were that neither of my babies descended at all in my pelvis until they were virtually being born.  First one got so far and was then sucked out (!) but he was smaller (6lb 11oz) whereas second one was about 8lb.  So maybe I have some sort of narrowing in the pelvis (internally) or something.  Certainly if I'd been planning to have any more I would have asked for some sort of x-ray or something and then maybe planned for a C-section.
  • forgoodnesssake
    forgoodnesssake Community member Posts: 498 Pioneering
    And actually re-reading what you have said, and bearing in mind that I am NOT a medical professional but a "CP parent" i do immediately recognise some of what you describe.
    My son could not lift his head from lying on his front actually probably for 2 years or so.  And he hated lying on his front so he rarely did.
    He did lots of kicking his legs but in quite a "rythmical" way and found it difficult to grasp (still does).  The thing you say about wrists coming in backwards is very much what he did/does, with hands bent outwards.  This was/is particularly noticeable when he's sitting at the table.
    He did not smile til 19 weeks, but we knew his mouth and face muscles were significantly affected because of feeding issues. 
    He could not sit up unaided til 26 months BUT his legs were very strong and he constantly wanted to be held up to "walk" and grab at things...he was never still and we laughed that he was climbing all over the furniture almost before he could sit up! 
    So, there's lots more i could describe; but that would be about the particular things my son did, or didn't do...and your baby is a different person and will therefore develop differently and so you should not take anything I have said as definite proof that your baby has CP...there are some similarities, but that may be all.  best wishes, jenny
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Omg. Yea, my little one doesn’t sit still. Everyone calls her wriggly worm, but I know it’s more than that! When trying to like read a book or something she’ll never quite be able to touch what she wants. Especially when excited. And will arch backward.

    Her bottom lip sort of just hangs and sometimes she can’t smile. But then other times does loads. So I dunno if she’s just making us work haha. She’s only laughed a few times.  

    She constantly rubs her eyes. 

    Did your little one babble. She struggles I think to make the M sounds etc. 

    See what you mean about the atnr. She will always turn her neck to the side when we hold her etc. 

    I think it’s only HIE that can cause athetoid. So I wonder if when I dropped her she went unconscious and didn’t breathe? I’ve attached photos. Photo 4 is before the drop. Photo 1/2/3/ are after. (They uploaded backward). Does it look like her temple on the right are swollen… and her hand is flat fisted. 

    That was the cot I dropped her in by the way  
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Also just pulls her dummy out. Not sure if it’s international haha
  • forgoodnesssake
    forgoodnesssake Community member Posts: 498 Pioneering
    Hi, TBH I can't see anything different in the pictures and unless you dropped her into that cot from a very great height, or directly onto her head so that her neck bent very seriously I really do not think it will have done any harm!  Babies are remarkably resilient in a way to everyday stuff (you should have seen what my older one did to his little brother)
    It is clear that you are wracked with guilt about something that is very unlikely to be your fault; and this is being made a lot worse because you feel you cannot get any professionals to properly address your concerns. 
    If it is any help, most of what you describe your little girl as doing is way in advance of anything my son could do at 5 months, and in terms of "babbling" 5 months is actually very young to be doing anything intentional sound wise and so you should not worry about the lack of "m" sound for quite a while yet.
    If she can eat/drink ok now then that also is a good sign.  I don't know much about dummies but from what I've seen, lots of babies pull them out.
    But I'm not trying to make light of your concerns...just maybe to help put them into a little bit of perspective.  I've no idea if mental health support for you will help, but if you are still concerned about your daughter's development and can't get anywhere with your local NHS provision you are entitled to ask for a second opinion, or to be referred to a more specialist centre, or even find private specialist CP provision like The Bobath Centre (near London, or in Cardiff or Glasgow depending on where you live) and ask for an assessment.  Good luck, Jenny


  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Would that be more spinal cord injury if it was the neck. I do think she like snapped the neck or anything. It was as I was lowering her in. She was asleep and I dunno what happened she just dropped of my arm by her head. She didn’t wake or anything. So now I’m like was she unconscious and that’s why?! 

    She’s drinking but like sometimes she coughs or like it feels like she gags. And dribbles stuff out haha. 

    Okay. So I’ve been feeding her now and she’s just been coughing as she was sucking?

    how do you know they aren’t feeding well 
  • forgoodnesssake
    forgoodnesssake Community member Posts: 498 Pioneering
    You clearly feel that some injury was done when she slipped out of your arms and into the cot; but what you describe, to me anyway, doesn't sound as if it could have caused injury severe enough to cause CP, or movements etc that may give the appearance of CP. 
    Babies in their first few days can usually sleep through anything so it is much more likely that she was asleep (as you say she was) and just stayed asleep thought the little bump, rather than being knocked out and rendered unconscious. 
    But the only way to be sure is for her to have some sort of scan to check for any bleeds on the brain or spinal cord injury.  However not all CP will show in such a scan, so even that may not allay your fears.
    Most babies can cough and splutter a bit when they feed so it's hard to know if there's more to it for your baby. 
    My son was breastfed for 3 years and the last feed was as tricky to get him latched on as the first (successful) one!  He had bottled expressed milk for 6 weeks as he just couldn't latch on, and I was just about to give in and move onto power milk when at about 9 weeks he was then, just, able to latch on.  But it was always a spluttery affair!  And because he couldn't use an open cup well at all til he was much much older, and couldn't use a spout cup at all, feeding him myself (only morning and night for the last year or so) helped keep his liquid intake up.
    As for how you know if they aren't feeding well,  their weight gain is one indicator and you should ask your Health Visitor to observe her feeding and see what they think.
    If there are any feeding concerns then a speech and language therapist should be involved; my son started to see on at about 6 months I think.
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    Oh sorry that was meant to say I don’t think I snapped her neck or anything, so I would be surprised if it was like a spinal cord injury 

    That’s what a few people have said to me, like the drop would have to be severe. Like higher than the cot. Plus they said people drop them from the beds in the hospital or from birth. 

    It’s just she was only one day old, so tiny! 

    The only thing that is making me thing she doesn’t have it, is she is so alert! Like tracks so well, and responds to noises etc! But I guess intelligence can be uneffected. 

    And the thing that makes me think she has it is the abnormal posture and the arching of the back! 
  • forgoodnesssake
    forgoodnesssake Community member Posts: 498 Pioneering
    Intelligence is certainly not always affected and my son was always very alert and inquisitive...and is now actually at University.  And one of his nicknames was "archie" as a baby! 
    So I am definitely not saying your little girl has, or has not got CP, only that there are some similarities (and differences...) with my son as a baby.  best wishes, jenny
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    edited February 2022
    There does indeed seem to be so many similarities. How do you cope when they get upset/frustrated at not being able to reach what they want etc. It breaks my heart. 
  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    And does he have a side that is better/worse? 


  • Qwerty99999
    Qwerty99999 Community member Posts: 18 Listener
    One final q, did your little one make noises etc at 5 months?

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