Parents, carers and disabled parents
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Unknown diagnosis

stephgreenstephgreen Member Posts: 28
Hi there my name is steph and i have a 8 month old called jack. Basically had jak a couple weeks early after a bad bleed during pregnancy. Jack was born on the 9th of jan and he seemed fine, sucked well just had mild jaundice. We went home after 5 days. Jack seemed to be progressing and then all of a sudden jack stopped feeding and screamed everytime a botltle went near him. Ended up getting a uti and the docs thought he had refux and was put on lots of meds for that. To cut a long story short they are now investigating quad cp, along with genetic things etc. They dont wanna diagnose Jack yet as he is so young, all we know he is stiff in all 4 limbs. Just wondering if anyone has been or going through this. Also on the posptive side jack smiles, giggles, babbles has excellent head control and eats solids, my concern is he doesnt play with toys. Does anyone know anything about this and if its common for babies with cp not to reach out yet and is there hope. Some days i can cope and live for the now other days i worry myself sick about Jacks future. I am so happy to have him but just so worried too. I hope to hear from someone soon
Steph xx

Replies

  • NatNevNatNev Member Posts: 1
    My son has quad cp, effecting his left side more than right, he was not diagnosed until he was 18 months, he is now 3 and a half, he did not really play with toys until he was about 1, he has never had any problems holding his head up. He is a very happy child always smiling. Try not to worry about your son, I know its hard but you need to think positivly and then deal with the reality when you have the diagnosis. You might feel alone but so many peaple have been and are going through the same thing. Don't keep things bottled up, there are always people on here that understand.

    Hope you this helps, Nat xx
  • caitlin10caitlin10 Member Posts: 6
    HI Steph
    Let me see if i can get this right, my little girl has Hemiplegia which is her left side is'nt working properly. Im not very up on CP yet as we only found out around two mnths ago her condition so im going off all the positive feed back ive had and hopefully you will feel slightly more relaxed like i do now.
    She is 10 mnts old and i knew from two mnts old that something wasnt right.
    We had a traumatic birth, i was induced at 10 days over with no problems but her head was twisted and there was no one around to realise until it was to late! She wouldnt suck for two days and at two mnts old i noticed she was very right sided i thought this was either something to do with the fact she'd been high risk Downs or that she just was very right sided! but it was neither and eventually had an MRI it turns out half her brain on her right sides not developed properly. Oh my God i felt sick looking at the scans and feel upset and very protective of her head now as it will always be flat on the one side due to theres not as much to fill it!!
    She never really reached out for things until she was 9 mnts old, she never ate solids till then and had little interest of putting anything in her mouth till then so please dont worry. Babies grow and do things at different stages so dont put it all down just to the fact that it must be CP else you'll drive yourself mad!
    Have you got someone doing physio with him? Caitlin now has a TAC Team (Team Around the Child) and she wouldnt be rolling over now, if it wasnt for them. I dont no if she'll need help walking or if she'll have epilepsy etc but im not going to let her see me upset and shes damn well gonna try anything she wants to! Shes my little miracle, i couldnt have children and then at 39 there i was pregnant!! So were not going to let this hold her back! :-)
    If hes not playing with toys i would say, going from physio done on my little girl to keep going and keep putting toys, musical and movement of any kind around him and like cate he might just suddenly grasp the idea one day. As you say he seems very good in other areas maybe, like someone once said to me, hes been using his energy to focus on other activities ie talking, moving his head, eating and now hes mastered them he can try another one!
    Everyone worries about there childs future its only natural I find it hard sleeping even now because i have to check shes still breathing!! lol
    Basically after all my babbling if youre worried do what i did and talk to your Doctor or Health visitor and they should put you on the right track.
    Good Luck and i hope it all goes well for you the picture of your little boy is gorgeous xx

  • stephgreenstephgreen Member Posts: 28
    hey guys thaks. I know its hard for children with cp to do lots of tasks, so i guess cos jack is babbling holding his head up etc hopefully the reaching out will come. if i put a toy in his hand he does put it in his mouth which is posotive. i have got lots of toys which light up, vibrate make a sound books and he does show lots of interest so 1/4 of the way there and i feel he is bright and wants to do stuff. Also starting nansa with him soon we have physio and portage. We also take him to scotson technique and visting brain wave. I know its alot but wanna give our guy the best start. xx
Sign in or join us to comment.