ds just diagnosed with cp

[cloghead]

a bit like ladylush my ds was diagnosed with cp yesterday and I'm really strugling. Haven't really slept, and at the moment I can't even look at him without crying. I'm so sad and he is definitely picking up on that.

Ds was 11 weeks early, 53 days in nicu scbu but then home. On discharge they advised us that he's be delayed but would catch up by the time he was 2 ish.

seen the child development clinic 3 times since. First time they had unspecific worries, but said nothing major. Second time seemed really pleased and said they wouldn't need to see as ofen maybe at a year 18 months and 2 then discharge.

then yesterday. DS is nearly 1 actual age, 8and a half months corrected. He can just about sit but wobbly and topples. The paeds and physios don't seem particularly worried about that and say he will sit and walk but late. But they say he has odd muscle tone and his movement is not graceful. His legs are tight and body a bit loose. he occasionally jerks his back and flails abotu a bit.

They say that his speech, cognition and fine motor skills are as expected but that he has diplegic cp and that it's mild to moderate. They say he'll walk but may have a limp, or walk with a gait. He has physio through the NHS monhtly and they give us exercises which we and the nursery do daily.

My head is spinning. We asked them how sure they were and they seem pretty definite. Is it worth getting a second opinion. are professionals wrong about this? If so how do we go about it. Happy to pay if it helps. We are in East Anglia/London would be fine. How do we find an expert in cp? the cdc covers everything.

Even if ds does have cp, does it matter? they seem to say he'll walk eveutally is that any different from the comment he'll catch up eventually. if his cp is mild will phsio allow him ways to work round it and allow his brain to rewire so he can deal with it.

Will more physio help. how do we get that?

are there other suggestions about what we do now, and find out what to expect? I plan to call scope this morning but am keen to hear from people who have been in the same situation.

Have you asked your HV about portage? Or checked out the portage website? I trained in portage many years ago and it was available in your area then. It is really, really useful and would really work for you (IMO).

Hope you are still feeling a bit better x

Also ask your physio about hydro sessions, my ds2 attended sessions at our local Special School pool in Ipswich, our physio referred us to their pre-school outreach people they were also able to support his nursery and provide OT support.

OK so we are moving forward, we will have a follow up meeting with the consultant hopefully this week. Sorting it with her secretary is an issue as she works very part time hours and is the only person with access to the diary.

We also have the formal report, which is slightly less negative, and just talks about the possibility of CP. I wish they were consitent with what they told us, but hey ho. If they were sure when we met why won't they commit to this in writing. I don't want false hope - well not at this stage anyway. However the report also says time will tell and that if there is cp it won't be at the severe end given the fact that DS has particularly age appropriate fine motor skills and there are no concerns with his feeding, vocalisation etc.

We have been referred again to the respitory clinic to see a respitory paed after the bronchiolitus DS had. Can anyone tell me whether there is an association with lung issues and CP or is it just a correlation given the prevalence of prems with CP and prems with lung issues?

We have had another meeting with the physio who went through things with us again. She explained that what we are trying to do is to teach DS how to move in a natural way as he won't get it himself. Well she said he would get it but probably not in the best way possible. She seems to have loads of time for us, which I assume is a good thing, but it does make me wonder if there are bigger concerns than anyone is letting on? She did however say she saw no need to involve the OT at this stage and perhaps never would.

DS is getting stronger but I am still impatient.

Anyway I think my questions for the docs are coming together, but still not sure about the MRI. Can I ask those who have been down this path before whether they found the extra info from an MRI helpful or not. I go from thinking more knowledge is a good thing, to thinking knowledge won't change anything or predict the future so why worry.

Well we found dd's MRI useful in a way because we knew what NOT to worry about iykwim? However I think it might have been more useful if it had been done at a later stage (dd was 2 weeks old). One Paed told us that after 2 yrs you will get a better picture of how the brain is rewiring itself if an insult occurred at birth.

Your physio sounds good and it is great that he is getting stronger

My DGS also had his MRI before 3 weeks old and not had one since. Yes it helped to know what areas of development might be affected and was a relief that there were no other areas to worry about. We do know a mum whose DS has SD and was prem. He never had an MRI as she said it wouldnt affect the treatment/outcome. Just depends on parental temperament I think

dd2 had an mri at 12 days, and one later (about 4yo) - she's now 7. you probably saw my essay(s) on ladylush's thread.

dd2 spent 5 weeks in scbu and was discharged with physio as she had some tremors in her arms (sort of shaking her fist - very juddery). initially her tone was very tight (think boxer pose with hands with thumbs in pals, tucked under chin, not being able to stretch them out or unclench) but now she's one of the more low-toned kids.
she is now dx athetoid cp becuase her tone fluctuates - her initial 'spastic quad' dx ceased to make any sense after the first year or two.

we were told she probably wouldn't walk, and wouldn't talk (she had lots of feeding issues and was ng fed to start with - she was born with no suck/ gag) and would be reliant on alternative communication. she learned makaton (she had a big mac button with pre-recorded greetings for a while) but became verbal around 3. she breathed like darth vader and was constantly on antibiotics for chest infections through aspiration. (that's one possibility for lung issues with kids with cp... another is the muscle tone/ efficacy of coughing etc)

at 7, she walks, talks, runs, argues with her brother and sister, goes to brownies, ballet, skis, and has an iq of 142. she still has cp. but it's a very small part of her. she sat around 12 mos, (she got her first standing frame on her first birthday ) attempted to crawl at about 15 mos, was given her first walking frame at 18mos, and used it until she started yr1. we still have a wheelchair for distance and days out, but (touch wood) she doesn't use it much at the moment.

are they mistaken? you know - even if they are, it's not going to do your little one any harm at all by pushing for more physio etc - get on the waiting list for portage too. any therapy you can get won't be wasted.

all i wanted for years was a crystal ball (and still do now sometimes but there really isn't any answer other than time. an mri may show damage. or it may not. even if it does, there is no way to predict ability or disability from an mri - only general guesses.

the possibility of a dx is such a shock. be nice to yourself, let yourself have a wail and a wallow, and keep a supply of chocolate within reach. he's still the same little boy. cp sounds huge, but it does get easier. x

have only skimmed most of thread so apologies if repeating. Second portage- it is great if you can get it. Also more physio. Might also be worth asking for a referral to the Wolfson clinic at Gt Ormond Street [[http://www.gosh.nhs.uk/gosh_families/information_sheets/neurodevelopmental_assessment_clinic/neurodevelopmental_assessment_clinic_families.html here]. Multidisciplinary neurodisability clinic. We're being seeing there at the moment (not CP though) they are lovely and very thorough so would really be able to tease out where the difficulties and strenghs lie with your ds

We had the follow up meeting with the consultant and generally speaking feel a lot more positive now. She says mild to moderate would probably be level one on the gross motor skills classification and that there is a chance DS will walk from about 18 months corrected, just on his own accord. There is also a chance it will be later than that and he will need aids to get him walking, but she is predicting no worse than level 2. She also said we just have to wait and see.

Anyway she is really pushing for us to have an mri for DS and says it wouldn't need a general anasthethic but they could just sedate him. She thinks it will possibly show less than we are expecting (which I guess is good) but wouldn't show anything too bad. DH thinks we probably need a good reason not to go ahead.

Anyway my next question for all you knowledgeable people is about how you cope. The consultant suggested I might want to think about counselling for me, the lady from scope also suggested it. I have spent the first year of DS's life being a bit anxious about what the future holds but got on with things. Sometimes I feel a bit sad, sometimes I feel ok and positive. I have counselling before for something completely non-related and am not against it as such. But I guess I am asking whether anyone did have counselling and if it helped. I can't see it will myself because we are where we are, but interested if anyone thinks it really helped, or really didn't?

I had some counselling Cloghead - not sure how much help it was long term, although was good to talk things through. A local group for parents might be helpful if there is one?

Have never heard CP discussed in levels like that - is very interesting. Sounds like an MRI would be useful and hopefully helpful for you. Sedation is very short for the MRI - literally just long enough for them to do the scan.

Hi cloghead - glad to hear you are feeling more positive now
dd will have an MRI - hopefully will respond to the oral sedative medication. Would rather avoid GA if possible. I am keen on the MRI as would like to rule out anything more sinister. Weird to say that....when I was so upset about the possibility of CP.
It's great that your ds is doing well and getting stronger all the time I am also getting the benefit of the reassurance your consultant/physio are giving you , since dd seems to be at the same end of the spectrum.
dd has a new toy ( a sit on bouncy zebra) and has managed to get on and off herself - no mean feat! Also, she walked the length of our lounge with her push along trolley. Ok it wasn't pretty (with one foot almost tripping the other up) but she controlled the pace really well - we all cheered and grinned with sheer delight and wonder We're really pleased with her.
Consultant said dd's age is corrected til the age of 2 for developmental purposes. We hadn't realised that.
Re counselling - no it won't change the situation but it may change your perspective on it iyswim. Have you been able to offload to friends/family? I found it quite helpful to tell people at work as well - I was worried I might snap and get myself into trouble. It has really helped alleviate stress - but I realise that it's not for everyone.

Yes our consultant also said they correct until at least 2 for development, although she also added it not like on the day before corrected 2 they suddenly catch up, its supposed to be more linear than that so in reality they catch up when they catch up.

Have offloaded a fair bit to friends, although finding it difficult with friends with similar aged babies. They try but.... we've never been in the same place since DS decided to make such an early appearance. Family is a bit mixed. MIL would be unable to cope at all (she is herself disabled with severe arthritis, and her partner died 2 days after DS was born - she just can't help practically or emotionally - that is a problem as DH doesn't feel he can say some things to her) my parents are better, concerned but better, but my mum is coming to childmind today as DS now has conjunctivitus picked up from nursery and I have to at least clear the decks at work as they won't have him for 48 hours. I have spoken to almost everyone at work, mainly because I did a disappearing act after the diagnosis for a few hours, they are great very understanding and supportive.

So pleaseed to hear about the sit on bouncy zebra and trolley. We haven't got anything like that for ds but he is still so little so there's still time. Also great your dd was walking with her trolley. I can't wait to see that kind of progress with DS>

Glad to hear your colleagues have been supportive. That's important.

Your ds is so little and seems ahead of where dd was at that age so I'm sure he will be charging around your house with a trolley in the not too distant future Also boys are often quicker to pick up motor skills so he may have this edge too.

Ikwym about finding it hard to talk to friends with babies of similar age - I find that hard too. I haven't been back to the mother and baby group since we found out about dd.........but I need to start taking her again. I think I'm at the stage where I can talk about it without breaking down. dd needs to mix with other kids and get back to her normal routine.