devastating consultation with GOSH yesterday

[tashm]

Hi all mums netters

A few weeks ago I posted a message about my 4 month old dd maybe having cp and the fact she could not see. We had taken her to Great Ormond Street in October and her eyes and occiptal lobe of her brain were ok so they said it maybe delayed visual maturation ie sight should kick in. Yesterday we took dd to the neurologist there for the first time and showed her footage of dd- with her tongue thrusting and funny movements. DD also has poor neck conrol and is hypotonic. They said both her limb and arm movements were abnormal and were concerned about her tongue thrusting and alluded to the fact she had cp. They also gave the impression dd will never be able to process the info to see and that she will never process info to communicate etc. She also also would not commit to dd ever gaining neck control.
We are in such a dark place at the moment and yesterdays news was such a shock. Wea re just devastated she will never see and ahd not thought she would never be able to communicate as she smiles on haering silly voices, touch etc. She also grabs things, holds onto them and lifts them in the air. The physio she saw last week said that her limbs were normal and that though her trunk and neck was floppy as she could lift to prone she will gain neck control eventually but I suppose dd wasn't doing her movements then. My hubby and I would really welcome your thoughts. Does it maen that as she is showing all these symptoms so early that her cp is severe? She has had two MRI scans and both were normal but I know this does not mean anything. I am now worried about starting to wean her-does the tongue thrusting amke this difficult-though she does not do this all the time and she feeds fairly well at the moment-she is 19 pounds and 72.5 cm! Do the movements and tongue thrusting get worse as dd will get older? So many questions...! Thanks for reading and please do comment-good or bad xx

Hi
I have no advice or comment as this is not my DS's special need but just wanted to bump and add my thoughts for you and DH. Any diagnosis is always such a shock.
I am sure you will get support and advice here.

Can Ia sk what input you're geting- specifically any actually helpful therapies? just, both BIBIC and brainwave seem to be palces I would suggest for your daughter as they seem to focus on the areas that she ahs difficulties with. Both are online, and can send you info packs (not sure about brainwave funding but BIBIC can help with that- we got ds3's first assessment via children in need organsied by them).

Have you come across NMC on here? She si very knowledgeable about severe CP and worth a chat- also, haev you joined TTR (ofsf mumsnet support group)- there shoudl be a thread in SN, or email me on [email protected] and I will get you an invite.

lots of hugs- any diagnosis is ahrd, but never say never, eh?

What a shock for you I can say that often medics can be very negative. Sometimes they're right, but I know of many cases where they have been utterly wrong. They do seem to feel as if they have to give the worst case scenario though.

I agree that something like BIBIC or Brainwave might be useful at this stage. They'll give you something to do and offer hope. She's 4 months and it is worth remembering no-one has a crystal ball. It is good that her problems have been picked up early, give yourself time, and when you feel less overwhelmed look into something like BIBIC.

{{hugs}}

No advice just want to wish you well, and say GOSH is the best place for help.

Oh Tashm, I am so sorry.

I know where you are at the moment. We were there ourselves at the end of September with some very negative drs. We walked out of the consultation determined that DS2 would prove them wrong.

We are trying to surround ourselves with positive, helpful people. Unfortunately, I can count on one finger the number of NHS people who fit that bill...

We found a very good physio, and looked into a program run through the American Institute for the Achievements of Human Potential. It is very intensive, and they are in Philadelphia, but it was through them that I came across BIBIC (British Institute for Brain-Injured Children).

They are just outside of Bridgwater, which is near Bristol, but they were very helpful and had a positive attitude. They gave us a 20 minute program to do twice a day, and the physio yesterday thought DS2 had made some progress.

You are in my thoughts, this has honestly been the worst thing that has happened to me (yes I know I have been lucky...), and it is a really dark place...

Hugs,

I would echo the suggestion to try bibic or brainwave. They will be really positive and as yurt1 says give you something positive to do. That can be really beneficial. Focus on what you can do to help your dd not on what she can't or may never do. Because you never never know.

My dd1 (now age 5) has pretty severe brain abnormalities - bits missing, bits malformed. The outlook we were given when she was 4 months old was pretty bleak. But she has some basic language, signs, understands loads and last week started walking independently. Yes, she is disabled and at times it is hard, but she has achieved things I only dreamt of back then.

This is a really really tough time. Post here as often as you like. I know there are a few other posters going through similar things. Try and find support in RL too if you can. Talking about this to people who understand is so so important in coming to terms with it.

I'm sorry they were so negative Tashm. At 4 months they really can't say how she will be or what sort of CP she has. When my dd was 4 months she tongue thrusted. It did make feeding hard at the time. She was also completely blind. The docs said all sorts of stuff about how she'd always be blind, that she was mentally retarded etc etc.
Now she's 3, can see. Not perfectly but every month her vision improves despite a bit of a squint. The tongue thrusting stopped ages ago (unless she's tired) and she eats mashed food just fine. Her intelligence is normal despite her severe CP and seizures and she is learning well.
CP wise she is very severe and has no arm function or hand function. She can't sit or roll but she can hold her head up for whole minutes now and tries very hard. She kicks her legs and with her minimal arm movement can press a switch to make switch adapted toys work plus uses the computer at school.
She cannot talk. But she vocalises lots and recently learnt to make a specific sound for 'yes'. We're working on one for 'no'. She can eye-point for choices.
Those docs don't know what your daughters potential is and it bugs me that they always go for the gloomy scenario.
Your dd is already holding stuff and smiling. Way ahead of my dd at the same age. She's already learning and processing. And smiling at silly voices is normal. My dd laughs at burping and farting.
This is a guess, but tongue thrusting suggests that if she does have CP it might be athetoid CP. Kids with athetoid CP are nearly always bright and range in physical ability from near normal to severe with lots of random movements. Friend of mine has severe athetoid CP but he's a lawyer. He can speak but has an interpreter cos he's not clear.
I wish I could cheer you up and I hope that my dd's story gives you a lift. She might have severe CP but she is bright and alert and has such personality. Sure things are tough sometimes but 3 years on I'm no longer in that awful place. Time does change things and acceptance does come eventually. For me it took over 2 years.
Email me on [email protected] if you want and maybe we could chat on the phone. I know it really helpedme to talk to a mum further down the path than me. One thing she said was doctors aren't always right. Your child is an individual, not a medical statistic and the more you put in, the better she will do. At the time I didn't believe her that I could be happy again or that dd would go beyond all the negative things the doctors said (and they pretty much wrote her off. Her paed has since apologised and says how astonished he is)
We're off the Brainwave in January to see what else we can do.

tashm, sorry to hear you've had such a negative appt.
Sometimes I think consultants paint the bleakest picture & for some reason don't seem to give much thought about the impact their choice of words have on the parents.

Certainly IME the people that gave the most accurate prediction for our ds were the Physio's. At 4mths & beyond he was a very immobile non responsive baby but at 5yrs old although he does have mild CP & autism he is a very active able little boy.

As the others have said the best therapy for us was to concentrate on & work with what he was able to do. Do you have Portage & any other regular support other than physio?

tashm, I'm so sorry you've had such difficult news. I think the doctors fall into two camps; the ones who tell you the worst case scenario so that you can deal with it, but it hit slike a sledgehammer and get all the right help and support, and those that keep from committing themselves to spare your feelings so you're floundering forever. I found myself talking to another mum at the weekend who was really upset about the way she'd been told as they realy hadn't pulled their punches at the time and her DS is doing much much better than she'd been lead to believe. I'm equally cross because of the opposite - we were actually told that DS wouldn't have any problems and things are turning out far more interesting. Both of us think we'd have liked the alternative better.

It really sounds like they're talking about a worst-case situation and they can't really know everything about how your Dd is going to develop at just four months, but they are giving you the opportunity to give her as much extra help as you can as early as you can when it helps most.

tashm please can you email me on
[email protected] so that i can give you an invite for TTR I would love to tell you all about my dd who is 12 and has cp. as I think it would paint a more positive picture. (but I don't like being so open on here)

(sorry I namechanged and cocked up when I changed back)

I don't know much about this area, but am very sorry you had such a depressing time today.

Thanks so much to you all for your fantastic and kind responses. It has meant so much to my husband and I. Yesterday felt like my dd had died but we feel so much better now and want to prove the Doctors wrong. Fortunately dd is under a caring developmental consultant and he returned my call today and will get a copy of GOSH's consultation and bring the appt we had with him forward to discuss things. Again I know we are lucky we are under GOSH and I suppose at least we were not given false hope but it is hard to remain positive and keep going with all the exercises we do to try and stimulate her when you are given nothing to cling onto. Thanks also for the info about BIBIC-I have looked at the site and it looks really good so have sent for an info pack. Thanks for the invite to join the TTR group-will do this tomorrow-and needmore coffee will definitely be in touch- it's kind of you to offer to talk to me. Thanks again to you all-we can't tell you how much you have helped x

Can I just echo the negative diagnosis comments made by other here.
When my DS was diagosed with ASD we were to he would never talk and that if he could not develop the skills to control his aggression our best choice was to start looking at full time rsidential care. This was at three. He is calm and affectionate and doing well and no where near the child they painted for us back then.
I think they are anxious for the seriousness of a childs needs to be accepted by parents but it is so hard to hear and can defeat your spirit if you let it.
I wish you and your family every best wish

I'm sorry you have had such a rough time.

I think a lot of the problem is due to consultants needing to have "the answer" whereas of course the brain is a complex thing that we don't understand and even the best consultant is, at this age, just guessing. There are children who do very well indeed on not a lot of brain, and children with nothing particularly wrong you can see on an MRI who are quite profoundly disabled. So consultants will often "take a view" which way it is going to go - and they can be wrong. Medical opinion is just that, after all - opinion.

We're another case where we got the opposite problem. I've had professors at GOSH tell me my child was "neurologically faultless" when it turns out that only about 1/3 of her brain works and it now looks as if she will never get past about 7 months developmentally. The false hope was, for us, equally devastating.

Of course parents are desparate for answers in the early days, but I think the truth is always more helpful in the end - "we don't know; these are the best and worst cases, these are the odds, this is what you can do to help."

I'm glad you've contacted BIBIC for a pack, just a year ago next onth we were told DS3 (ASD probably- no dx) would never talk, he now uses 3 words in a mini sentence sometimes! And as trhe only input he's had is BIBIC, well..! I was fortunate enough to grow up in their shadow somewhat so was lucky enough to get ine arly when my DS1 was diagnosed with HFA. They're wonderful though- very friendly and relaxed. and as Yurt said, positive.

Just wanted to say take care, it's a horible realisation that your child has any problems, let alone when they are so negative. We've found negativity all the way and I remember so many appointments that I just sat and cried. They're not always right though and we've learnt they just cover themselves by giving the worst case all the time, which is such a shame. Best of luck to you and your family.

Following on from my earlier post I also wanted to say don't get too hung up on 'therapies'. When I look back to dd1's early years I just remember at times this awful pressure. Because everyone kept telling me that the more I did with dd1 the more she would be able to do. And of course you want your child to reach their potential. I would feel awful if I had a day when I didn't 'do stuff' with dd1.

By all means go to BIBIC or brainwaive and get some advice and a programme. And push to get as much physio/visual/OT/SALT as you can on the NHS. But sometimes just allow yourself to be your dd's mum. Just play with her. Show her the world like you would with a typical child (and I know she can't see but they can learn so much from touch). Enjoy her. And at times just snuggle her if that's what you feel like doing. She will gain so much from all that too.

Yep agree with HITC- 'therapy' can be snuggling under a blanket together, hugging tight, watching shiny lights (or if there are visual problem something more specific that can be done in a relaxed snuggly way), splashing a bowl of water etc etc.

Bibic is very laid back therapy, and easy to do. AFAIK Brainwave is similar

Yep agree with alst 2 posts- (one of best things about BIBIC is 3 days with ds-whichever it is just the two of us at times LOL)

give yourself mourning time as well, any dx hits the family like a sack of bricks- when the outlook is so (apprently) dim its even ahrder. Our first dx wasn't half as severe yet plunged me into bad gloom- and then we got the second! make sure you have lots of time to just think, and adjust slowly.

Hi Tashm, I'm sorry you had such shocking news, it really does throw you, doesn't it? My DS1 is 2.8 years old and has CP. I have found that it takes constant readjustment to each new stage, amazing joy when they do something that you thought would never happen but also the little pains when you realise how hard they find other things.
I have recently got myself into a bit of a state over trying to do too much therapy, and be teacher, dr and therapist, forgetting about the Mummy bit. It took a consultant to make me realise that a child who can't walk, talk etc but has good self esteem and confidence is much less 'disabled' than one who is physically fine but has low self esteem. I suppose what I'm trying to say is that I echo the last few posts!
Also, my son did have some tongue thrusting although not a lot and it has gone now, he eats completely normal food, albeit messily!

My DD2 was starved of oxygen at birth and we were told she would have severe CP was unlikely to be able to move, see, hear etc. At 4 months she was doing ok and they said it might not be as bad as they thought.
She tongue thrusted and weaning and bottle feeding was difficult but she got there.
she is now 15 months and is walking and developing fine. The doctors now accept that they got it wrong. They will still give no guarantees about learning issues but I don't care. I spent the first year of her life crying and worrying and now feel terrible for wasting that time.
My advice is, don't always listen to the doctors they sometimes just don't know and tell you the worst case. Enjoy your dd and don't panic if something takes longer for her to do than expected. Good luck.