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Original poster

Waiting for answers - could use some advice

17 replies

MrsM42 · 13/02/2015 17:17

Hi,

I'm sorry about what is going to be a long post but am hoping that someone will be able to reassure me or let me know what to expect in the next few weeks/months. I noticed when my LO was 2 months old (now 3.5 months) that he held his arms a strange way and wasn't able to lift them up past shoulder height at all. They are always straight and locked to his sides or pulled slightly behind him. He is my 4th so I knew that his movements were't normal. I took him to my GP who referred him to a paed with an urgent referral. We got an emergency cancellation with the consultant 2 days later. He did lots of blood and urine tests and a neurological exam. We had to go back 2 days ago for the results and to discuss where we go from here.

He had a number of concerns about my son:

  1. He is developmentally way behind where he should be
  2. He doesn't have a social smile. He will smile when he is being tickled, but not in response to a voice or being smiled at
  3. He doesn't turn his head to the right (at all really) or to noises or my voice. He often has his head turned to the left anyway as if he was looking over his shoulder
  4. He doesn't focus on faces or toys ever. He will focus on and follow a light if its close to his eyes, but he doesn't seem to be aware of a light if its not very close to him
  5. He is hypertonic throughout his body but more in his arms than his legs
  6. Babies shouldn't have a preference for which arm they use, but my LO only uses his left hand
  7. His head lags when he is picked up from lying flat
  8. He has uneven grip in his hands - his right has a much tighter grip than his left and both his hands are fisted at least 50% of the time
  9. When he lies on his tummy, he doesn't move his arms up at all, although this is probably due to limited movement in his shoulders, even when he is asleep his arms don't go above shoulder height. So lying for tummy time, his arms are locked to his sides and he cant get his head up so he is face-planted to the floor.

We have been told that he needs an ultrasound on his brain in the next couple of weeks while his soft spot is still open and within the next 4 weeks we will get appointments for physio assessment for his hypertonia and his shoulders and an examination by opthalmologist to see if there is something wrong with his vision which means he's not focussing on toys or people etc... Then back to consultant to discuss all the results. Consultant said he would probably need an MRI but no idea when or what they think could be wrong with him... If anyone has any advice it would be really appreciated cos I'm trying not to worry but it's really hard.

Oh, and I've noticed that my LO is now cross-eyed a lot of the time and recently he's started making strange faces.. Almost like grimaces or like he's eating something he doesn't like.

Thanks in advance everyone xxx

OP posts:
reader108 · 13/02/2015 17:56

Sounds like a lot going on bless him. Love and support to all of you to.

Only a shot in the dark but cerebral palsy, one side preference slightly different limb movements. Physio will be a huge support asap

Sending big hugs and all the flowers and cake I can XXX xxx

reader108 · 13/02/2015 17:56

Sounds like a lot going on bless him. Love and support to all of you to.

Only a shot in the dark but cerebral palsy, one side preference slightly different limb movements. Physio will be a huge support asap

Sending big hugs and all the flowers and cake I can XXX xxx

reader108 · 13/02/2015 17:56

Sounds like a lot going on bless him. Love and support to all of you to.

Only a shot in the dark but cerebral palsy, one side preference slightly different limb movements. Physio will be a huge support asap

Sending big hugs and all the flowers and cake I can XXX xxx

reader108 · 13/02/2015 17:56

Sounds like a lot going on bless him. Love and support to all of you to.

Only a shot in the dark but cerebral palsy, one side preference slightly different limb movements. Physio will be a huge support asap

Sending big hugs and all the flowers and cake I can XXX xxx

reader108 · 13/02/2015 17:56

Sounds like a lot going on bless him. Love and support to all of you to.

Only a shot in the dark but cerebral palsy, one side preference slightly different limb movements. Physio will be a huge support asap

Sending big hugs and all the flowers and cake I can XXX xxx

Ineedmorepatience · 13/02/2015 18:12

Hi mrs, it is brilliant that you have spotted your ds's difficulties so early! Early intervention can improve outcomes for lots of children.

Remember what ever happens he is still your lovely little boy. And while you are waiting all the time you spend talking to him and playing with him will be valuable to him Smile

Good luck Flowers

senvet · 13/02/2015 18:16

Wow. That is a lot to take on board.

I can offer my coping strategies for a different scenario in the hope that they help you in yours. Here's what I did:-

  1. I made sure that I had some chunks of time where I was definitely not going to do anything about diagnoses or adaptations etc. The 'to do' list was put away.
  2. I learned to sort my friends into those who were great at talking about the actual problems and how I felt, and those who were better at distraction with funny stories or comments. I tended to use family for the late night moments, and luckily I have family friends in New Zealand!
  3. I learnt to shut down pity. There is a world of difference between people who genuinely want to help, and people who tend to say 'oh isn't it terrible'. The latter I had some off pat phrases. 'Enjoying Life' or 'having a good day today' etc. Didn't matter whether I thought it was true or not, just worked at stopping pity in its tracks.
  4. self pity was harder. A friend put me right when she said 'most of the world would swap places with you just to have a roof, the certainty of clean water and food on the table'. I found that quite helpful in beating my own wallowing.
  5. counselling. There is a place for tears and with a busy family that was it.
  6. The most important thing is that you love your family and they love you. Everything else is a bonus. ds will make you see the world in a new way - rose tinted spectacles may be gone, but it is still a brilliant life

Good Luck

Original poster
MrsM42 · 13/02/2015 18:45

Hi, thanks for your answers... It was a lot to take in, I was a bit overwhelmed after the last appointment. I think the only reason I spotted his arms so early is that ive spent the last 15 years supporting children and adults with physical and learning disabilities and brain injuries so when I noticed how he held his arms my first thought was cerebral palsy... But then I managed to convince myself I was being neurotic and over protective xos he's my last baby and then to hear everything that was a concern to them was awful.. I expected to be told that they would see him again in a few months and monitor his development... You're right though, he is my perfect angel no matter what xxx

OP posts:
itsnothingoriginal · 14/02/2015 20:46

As you say it is early days and there are similarities with my DD's development at this age (she has CP) but I also know other children where there were tone issues as babies or they showed signs of slow social development and things turned out fine. I really hope you get some answers soon...

My DD started physio at 3 months old and it really maximised her development. Assume torticollis was ruled out?

Original poster
MrsM42 · 14/02/2015 21:07

They said they weren't concerned about it as his head doesn't tilt to one side, it's turned that way... He can move his head normally to the left and he does occasionally turn it to the right so he has full range of movement when looking side to side, he just barely looks to his right. Xxx

OP posts:
itsnothingoriginal · 15/02/2015 11:40

Ah ok - I do hope you have a clearer picture soon. Meant to say that I think senvet has some great coping strategies listed above. Nothing can take away from the all consuming worry completely but those things can help xx

bakingtins · 15/02/2015 20:19

Sorry to hijack but wanted to say thanks to senvet for those coping strategies. We are in a similarly uncertain place with DD 8m who had infantile spasms diagnosed a month ago, with a very uncertain the word 'catastrophic' appears a lot in the literature future.
MrsM I hope you get answers v soon.

Original poster
MrsM42 · 15/02/2015 20:48

The coping strategies are brilliant... I haven't used them all yet but the ones I have used have really helped. It's stipid, but it's really reassuring to know that there are ways of getting yourself through it all and the support on here is amazing. I can't thank you all enough xxx

OP posts:
Rasell · 18/02/2015 22:26

Just wanted to send you a hug. I hope your little man will be OK xxx

senvet · 18/02/2015 23:06

MrsM I am glad they help in your situation. They are a menu, not a to-do list - I won't be offended if you don't use them all!
Baking glad they help

You are in choppy waters but sailing to towards the harbour of a new normality where you can have a happy life.

Hang in there everyone

MeirEiaNoAlibie · 19/02/2015 15:28

With funny 'new' things like these grimaces- it's always worth videoing them. Can then email it to the paediatricians secretary, explaining there's something you didn't mention at the appointment.

Don't keep a dog and bark yourself Wink if they're concerned already. It's usually sensible to pass on every bit of relevant background info - gets the right answers out faster.

Original poster
MrsM42 · 19/02/2015 17:04

I've been photographing him making the faces but never thought to video it... I'll do that next time he makes them xxx

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