How do you get through.........?

[lourobert]

How do you ever come to terms with the news that your darling child isnt quite 'perfect'.....?

My partner and I have just been given the devastating news that our son has a very rare and serious form of epilepsy which will impede his development possibly to the extent that he may never walk or talk.
He is the most relaxed,chatty little boy but all these skills he already had may be lost!

I have alot of epxerience with special needs and am a social worker myself so people automatically think that i will cope and take this al in my stride but I feel like my world has just collapsed.

I know I need to be strong for my partner and my son and also my family but when will the tears stop?

[catrin]

You need support just as much as everyone else. Don't fall into the trap of comforting family members about your child - you have to give yourself time to grieve, to cry, to be angry, to be bitter. The tears will stop, but some days may be better than others. There is no right or wrong way to deal with this, so do not feel you are not allowed to be sad. Once you have started working through these things, then you can start to be strong for your son. He is still perfect, just perfectly different.

[r3dh3d]

Hi there Lourobert;

Since my daughter started having Epileptic seizures at 14 months, we have had progressively worse and worse news - currently they believe that she has Hemimegalencephaly, which will mean removing (or disconnecting) the entire right half of her brain. There is now argument as to what is "wrong" with the remaining half so we could be in for still worse news.

The first thing I would say is that whatever you are feeling now is normal and will eventually pass. The initial shock is very like a bereavement - you will have to "bury" a lot of your hopes and expectations for your child and I don't think you should feel guilty for being sad at this time or think this means you do not love your child as he is. You are mourning a lost future, not a lost child - if that makes sense.

I think after this initial stage, we fall roughly into two camps. Many people come to terms with their diagnosis and although they still struggle with the practical impact of the illness or the attitudes of others, they accept their child exactly as they are. Unfortunately, I'm yet to find that sort of serenity, possibly because we keep getting worse and worse diagnoses so I'm never quite finished coming to terms with it. For me there is still a certain amount of regret and sadness - but my unconscious has adapted by simply not allowing me to think about it that often. It is only when circumstances force me to think about it that I'll have a little cry.

Epilepsy is definitely a rough ride for the parents because as well as the diagnosis, you have the day-to-day experience of watching your child have seizures, hospital stays, etc. It is very disruptive of "normal life" and I have found that the thing that is most helpful in coming to terms with it is just living your normal life. Helena is not "normal" in the developmental sense, but she does things that NT kids do and much of our life goes on as usual. There may be some things that you have to abandon (in our case, family trips to restaurants at the weekend were a big part of our life but are now out of the question) and again, finding other things to take their place may be helpful.

[lourobert]

Bethron- that is what my son has been having infantile spasms, there was another syndrome mentioned but i cant remember what it was called as there was so much information flying at me. if you dont mind could you tell me a little more about your son, of course I will understand if you dont wish to..maybe it may help me make some sense of all this.....?

[heartinthecountry]

Hi lourobert - will try and reply properly to this tonight (I am at work now). My dd has infantile spasms as Bethron mentioned.

I echo what she says about not reading stuff on the internet - it absolutely terrified me.



What medication has your ds (mumsnet shorthand for son!) been put on? Are you seeing a good neurologist. I think these are both really key at this stage. Was it West Syndrome that was mentioned?

How old is your ds?

As I say, will post more later. And my heart goes out to you. I've been there.

[dizzy34]

Hi Lourobert,

My son has a very severe form of epilepsy called malignant migrating partial epilepsy of infancy. I am also a social worker so we have a lot in common. Have a look at Harrys website www.harrysjourney.co.uk as it has a section about how we coped and how we felt when he was first born. we have grieved for the child we thought we would have. We have known since he was about 6weeks old that he wouldnt walk, talk, hold his head up or even hold anything in his hands. I spent alot of time on the internet and read alot of positive stories about infantile spasms. Feel free to email me on [email protected]

Take care

Denise

[lourobert]

i am just writing this quickly as Im on a quick break from being with Louis at the hospital. Louis is 5 1/2 months old. Louis also has craniosyntosis but they do not think that this is connected. i cannot remember the name of Louis epilepsy but I will find out tonight and post it tomorrow to see if it is familiar to any of you.

He was started on steriods yesterday and the seizures have already become less severe so that is positive. He is still babbling away and enjoying his music and toys etc. He will be staying in hospital over the weekend just for observation and to ensure that the seizures are under control. I beleve that we will then be outpatients at Southampton General.

It is so reassuring to know that you are not alone. Yesterday my world ended and I didnt see anyway forward but even now,a day on, I feel so more positive and rational about it all. Thankyou so much for taking the time to post- youve made the world of difference to me.

As I say this is hort because of time but I wll find out the name of his epilepsy and post it tomorrow.

thanks again

[lourobert]

Hello,
Just returned from my night at the hospital hwere my partner has taken over- had no sleep cos I was so fixated on the stupid machinwe measuring his oxygen level so plenty of time to sit and contemplate and get myself angery again!

I gueess it will be vicious circles like these for a while- the nurse comentedeon how relaxed we were and that louis will be pick up in that- relaxed????? I dont think so. Anyway a bit of time away and Ill be ready to start again.

I asked the doctor and he told me that Louis had hyper-rythmic epilepsy but Im now not sure whether that is a group title that many epilepsys fall under rather than the specific name so I'll have to check that out.

I think my mind is whizzing more becuase Ive worked all my life with kids and adults with varying disabilities trying o make thier lives better- but I never thougt that it would be my son- its always someone elses son isnt it?!

I cant praise the hposital enough thought they have been fantastic and just the small things are making this a little easier to handle.

How the hell are we going to get through this?

[anniebear]

Hiya

My Daughter developed Infantile Spasms after having Meningitis at 8 months (she had been fine till then)

She was very ill, life support and we got told she would be severly brain damaged


She did suffer brain damage, then went on to also develop Infantile Spasms, which made the already diagnosis even worse

Luckily they were under control very quickly.

She is now 4 and a half, she walks, talks, and is currently in knickers!!!!!! ( we are potty training as I type)!!

She has her problems but is doing so much better than what we were told

Am thinking of you

[lourobert]

Anniebear- its so nice to hear that kids can exceed expectations- i guess they are just so resiliant. Im desperatly hoping but then the 'worse case scenario' is always at the back of my mind!

[lourobert]

I got it wrong- louis is having infantile spasms but the EEG showed his brain activity to be hypasarythmic......?! Im still confused!Ill talk to them more later today.

[anniebear]

I am sure when Ellie had her EEG, it showed to be VERY hypasarythmic, this was how they could tell it was Infantile Spasms

I think that is correct anyway!!

If there is no known reason for having IS, (ie, in our case there was..... Meningitis) then the outcome can often be better

[anniebear]

I didn't have a clue either, I just copied lourobert's!!!!!!!!!!!!!!

[lourobert]

I understand it all much better now. I spoke to a lovely consultant today who was brilliant at explaining it all to me. The first words the other doc said were 'your son has a very severe and rare form of epilepsy' they were the only words that I heard and have stuck with.

On a good note, Louis has had a good day. He had no seizures today (hope im not tempting fate!)Hes eating better than ever and it is the docs thought at the moment that Louis's spasms may be due to a problem in the metabolic system as Louis has always have problems eating etc. Since hes been on the steriods he cannot get enough milk. An MRI scan has been organised which will either prove this theory or not.

I still cant believe its all happening really. Im lucky to have had great support from the hospital (St Marys in Portsmouth) plus talking to felloe mumsnetters is great because you relaise that you arnt alone in any of this, still a long road to go, I know that....but taking it one day at a time!

[lourobert]

i dont think Ive ever slept so well- I stayed at my mums last night whilst my parner was at the hospital. Little Louis has now got d & v which has been going round the ward..on tope of everything else! but hes fine in himself apparantly! Breaks my heart to think of him laying there. Thats the worse thing he looks up at me with his big blue eyes and I feel like im letting him down for not being able to do something,to take this all away, I cant even promise him that everything will be ok.

Thats my morning moan done- its smily heads on as I go and spend the day will Louis!

[lourobert]

Bethron- How was your little ones development up until the seizures started? The doc was asking me yesterday so they can try and determine whether there was a delay prior to the spasms as apparantly this will have some say in how he develops from now on.

i dont think he was really behind. He was babbling and would have little 'conversations'with me, copy noises and facial expressions,reach out and grab. My only concerns were that his head control was possibl not what it should have been and that I thought there was something 'different'about his smile. Im trying not to pull everything apart but its difficult not to!