We Are Quite Desperate; We Don’t Know What To Think Or Feel

FergussonFamily · March 2010

My wife and I had quite some difficulty conceiving, and eventually went down the IVF route. When we found out we were to have twins, we were ecstatic.

Unfortunately, about 5 months into the pregnancy it became clear that my wife was going to have difficulty carrying the babies to term. They were born at 29 weeks at 1.05kg and 1.7kg. Neither had any particular problems in the NICU . . . where they stayed until they would have been full-term.

The smaller of the two at birth is now romping around and hitting all his milestones. His larger brother has been a bit slower. At 1 year adjusted age, he can roll, sit unassisted and get from sitting into all-fours. He can't quite crawl yet, but he can take a few paces and lunge and has gotten onto all-fours by himself (did once yesterday). He plays with toys quite happily and moves them from one hand to another with little difficulty. He can clap, smile, chortle, and seems engaged with the world around.

We have take both boys to regular check-ups and until the day before yesterday, we had been told that his delays (couple of / few months) and other symptom (ankle tremors) were just something he would grow out of.

The day before yesterday however, our sons' pediatrician and subsequently the neurologist he referred us to seemed to change their tune.

They told us our dear little boy has Spastic Diplegia as a result of Periventricular Leukomalacia. They said it was likely mild, but could not rule out further neurological problems.

This has hit my wife and I like a ton of bricks, and we are taking turns in holding it together and then completely falling apart.

We don't know what to expect, and are terrified of asking. We are also very wary of the Doctors who seem to have a fresh piece of bad news at every new turn. The only one who is offering any solace is the Physio, who says "he has good potential" . . . we don't know what this means or where to get the answers, and seem to be told by everyone that we will not know the full extent of the problem until our boy is 5 years old.

I know it sounds self-pitying, but it feels like torture. We go from feeling guilty, powerless, angry, despairing, and depressed every fifteen minutes. Life now seems to split between everything that happened prior to his diagnosis, and now . . .

Four more years feels like an eternity . . . can anyone help with what we might expect?

mumto1 · April 2010

First of all give yourselves some time - time to come to terms with the news you have been given and some more time to process that - almost a grieving process, well, it was for me anyway.

And even at five years old nothing is set in stone - and that is a very hard thing for a parent to deal with, believe me, I know, but it will help you to know that.

As for what to expect and whether to ask - well, I think you will come round to asking, but possibly by then you will know that you are the expert on your son and will listen to whatever you are told, but will be able to put your own slant on it and whilst listening - even to what you already know - is always hard, you will come through it.

Keep talking to people that have been through it or are going through it - I know that I found that the most helpful thing at the start - and I still do! Either online or face to face.

I really feel for you and hope that you will start to feel less out of control very soon.

Best wishes,

CA

Elibarebum · April 2010

like coffee addict said, you will need time to come to terms with what you have heard. it is hard at first, but it DOES get better with time.

from the sounds of things he seems to be doing quite well, to be nearly crawling at 1 is brilliant. but it is a hard slog with the amount of physio that needs doing daily. this is what gives the children the best chance of a 'normal' life.

no one will be able to tell you what will happen in the future, just ake one day at a time.

take care EBB

renacahill · April 2010

Hello

My DGS was not premature but had a traumatic birth and needed resuscitating. He is 19 months and has CP. He was diagnosed early on and had intervention from the word go which has been enormously beneficial. He does a wobbly sit, can roll onto tummy and push up and attemps crawling but gets carpet burns on his chin! I think he has a different type of CP than your LO and is more 'balance and co ordination'. The physio is very pleased with his progress and sees improvements everytime she sees him.

His parents and I identify with you absolutely, the first months following diagnosis were dreadful, and even today we have our wobbly days, but honestly, they do get better and your outlook becomes more positive. Agree with the grieving, its so difficult to let go of the cosy image you build of your new family life when it all changes so dramatically. Here is what helped us:

Dont fret too much about the doctors and what they say - they always are doom mongers and we just dont listen to them, the physio is much more upbeat (but wont commit for fear of being sued, I'm sure!). Therapists are also much more realistic. I read you must be realistic but optomistic - hard at first but absolutely right.

Dont look further than the next few weeks, it will drive you crazy, you dont have a crystal ball and neither do the experts so its pointless. Get a scrapbook and everytime he achieves something eg reciprocal crawling, pulls up onto furniture, etc, take a pic and put it proudly in his scrapbook. If you see his achievements mapped out you can get through the days when his development seems stalled. Your LO sounds brilliant already and I would be so proud of him.

Make sure you get all the therapists you can - physio, OT, SALT, Portage, Hydrotherapy (DGS loves it) Sensory room - he has no sensory issues but it encourages his movements - work out a daily program with him to incorporate his physio into play - the progress you see will be amazing.

Get this book from Amazon http://www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_1?ie=UTF8&s=books&qid=1272307619&sr=1-1 It has been our bible and even our physio has bought one for the department! It also has a scale for measuring achievement in CP 1-5. 1 being most mild - and charts the levels at different ages. I think your LO would be level one, you then look at level one at the next stage (older) to see what they should be achieving and so on. It gives a rough idea of achievement, the aim being with therapy to work towards a better level of achievement.

Remember development in a journey, not a race, and comparing to toddlers of the same age (difficult for you with twins!) is like a pain in your heart, but something that gets easier over time.

Be very very careful on the internet, it can make you want to slit your wrists! Whenever they give explanations they alway give worst cases and it is so depressing and frightening. However there is also lots of good stuff out there http://www.therapystreetforkids.com/index.html this is excellent. Perhaps get a grandparent to do your research so they can filter out the scaremongering for you and give positive advice.

Get organised with physio, exercises, stretches, money, appointments, emotional support etc. When you start to feel in control of the situation lots of the fear factor will go..

Hope this is helpful. Good luck and stay positive

Kate

xx

TJ100 · April 2010

Hi,

I remember like it was yesterday the day that we were told that our son Scott had CP. It was probably the worst day our lives, no it was the worst day! Our son was a day old when we were told all about his condition and we were bombarded with so much information we just couldn't take it all in but there is one thing I remember very clearly. It was the consultant that sat in front of us and told us that our child has brain damage and the fact that they could not tell us his prognosis, we were told he may not walk, talk or do anything a normal child can do. This was like a slap in the face and quite frankly at the time we were shocked at how we were told. I guess doctors really cannot tell how each child will be affected and the worst case scenario is the best way forward.
To cut a long story short our son is now 7 and is doing really well, he is walking, talking and will pretty much try anything that most 7 year old boys do. He does have to have regular Botox injections in his left leg and wears a splint. We have to give Scott physio everyday to stretch his muscles otherwise they will tighten, he doesn

We Are Quite Desperate; We Don’t Know What To Think Or Feel

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