Coming to terms with baby having probable "special needs"

[Adelaide]

Hi, I've posted recently on another thread that my 19 week old has been diagnosed with a rare neurological problem called polymicrogyria. He started to fit and we went to A&E who admitted us, lumber puncture showed excess white cells and protein so viral encepthalitis suspected - however baby continued to fit and we were transferred to a larger teaching hospital with a specialist paediatric neurologist. After numerous EEGs & MRI he has, as I said, been diagnosed with PMG (as we now so blithly refer to it as). We now know that he will probably have seizures throughout his life which can hopefully be controlled with drugs (not yet tho' - other than that we have no idea, other children with PMG vary between being very severely disabled/retarded to just being a bit "slow". I think that maybe this not knowing is the hardest as I am watching his every move for retardation/advancement. I think I am also still recovering from the 4 weeks in hospital with him, as are my dear dp and two other boys. I am swinging from despair to hope by the minute and wondered if anyone else has been in a similar situation and if so how you came to terms with it.

Many thanks - Adelaide

Adelaide, sorry to hear your news, I bet you feel all over the place right now. My son is aged 21 months, and at 16 months we were told that he had cerebral palsy (by telephone no less). I had known in my heart for a lot longer that this was probably causing his problems, but dh had thought that he was just a laid back baby, that being the youngest of 4 there was always someone to hand so he didn't have to try too hard to achieve anything. It was deeply upsetting to think of the things he might never do, and how he will have to learn to deal with the prejudices that a lot of people still carry with special needs. My husband was particularly devastated , and still today cannot really talk to anyone but myself about it.

Last month we finally got to see a neurologist that we respect greatly ( he treated my firstborn for hydrocephalus), and he told us that my son may not in fact have cp, but a more severe and rare condition that mimics cp, but is progressive, so we now face the wait to see if this is the case, and if our son will be in a wheelchair eventually or not. At the moment he is only able to commando crawl and roll over, he cannot sit unsupported and cannot stand. We have been told cp is the best we can hope for (I have already posted about this under another thread), so now we are hoping that it IS cp instead of a few weeks ago praying that it wasn't.

I am the same, one day I feel like I can cope with anything, other days even the thought of getting out of bed feels to hard. But he needs us, and I have found my own way to look at his condition to help me cope when things feel too much, which is, all children are born with the ability to do some things better than others. Some can't read or write as well as their peers, some can't skip, some can't swim. My son might not ever walk, and we don't know what his future holds, but he will be brilliant at something else, even if it's just making me smile.

Do I wish he didn't have this conditon? Yes of course. But it doesn't stop me loving him with all my heart and soul, and I am and always will be fiercely proud of anything he does.

I think you must realise that it is ok to be feeling the way you describe, and is part of the grieving process. Because in a way it is like losing the child you knew and finding a new one who looks and sounds the same but it doesn't feel the same. Like looking at the same child with new eyes. You will eventually come to terms with this news, and you will feel many emotions along the way. I hope you can come to some sort of peace and acceptance soon.

Hth, very best wishes.

I have a friend who finally got a confirmed diagnosis of chromosone deletions for her little girl, age 1 year. I know that she has found support organisations; probably that's your best bet? My friend is in the same boat as you; not knowing how severe her DD's handicaps are likely to be...

I get the impression that my friend (like a cousin of mine with a Down's child) has big bursts of being her child's biggest advocate, doing her motherly damnedest to make sure that everything that can be done to support her DD's development, is done (medical advice, extra therapy, etc.). I guess that's how I would channel my anxieties, too.

Your situtation just reminds all of us with "normal" children to be grateful that (so far) our kids seem ok. In a way, I guess you have lost the child you hoped you would have. Imagine that's how I'd feel.

Adelaide, I'm so sorry to read your news. There is nothing that can be added to Lou's beautiful post. My dd was recently diagnosed with microcephaly (slow brain growth) and "global" developmental delay, the causes for which we don't yet know (and may never do). She is 18 months old, but can't yet move off from a sitting position.

I completely understand the feeling of veering from hope to dejection at the slightest thing. The not knowing the future is one of the hardest things. As zebra says, I've found putting all my energies into dd's therapies, chasing up medical appointments etc - basically trying to do the best possible for her is a way of feeling you are doing something. Even the smallest of advances makes my day.

It is a grieving process and finding people to talk it all through with is very important. I've found it helpful meeting others in the same situation, plus the support of Mumsnet. Wishing you all the best...

Many thanks lou33 & Caroline your thoughts & support greatly appreciated. Yes, I'm already doing the chasing and finding out and we were wildly excited today when ds giggled for the first time and then later reached up to touch my hair with his right hand (which he had totally lost the use of just 2 weeks ago). It goes without saying that we love him dearly, but as you say there is definitely some grieving to be done. Thanks again.

Although we were warned early on that my dd could have alot of special needs due to gbs meningitis shortly after birth, it still hit us like a ton of bricks when at 4 months old she developed hydrocephalus and at 7 months we were told she had cp, she has overall learning diffaculties and is blind in one eye. I was so devastated i thought i couldnt cope, i figguered(sp?) she would be "retarded" and so differant but she isnt, yes life is harder ,yes we spent alot of time at hosptal and yes it seems like i spend my whole life fighting for various things for her from benefits to schooling, but honestly i wouldnt want her any other way, she is who she is and she along with my other two children are my life, i wouldnt want to change my two sons so why would i want to change my wonderfull dd. Having a child with special needs is sometimes harder but the rewards are even better, when or if they do something new its the most treasuerd feeling your ever likely to have.

beautifully and honestly written Ariel,cannot add to that.

Hi my baby has recently been diagnosed with polymicragyria too. (Due to failiure to thrive and delayed devlopment rather than having seizures)I to have 2 other older children and have felt like curling up and crying. However my lovely baby is a smiley happy boy and thats what matters. You are not alone. From what I can gather the doctors can't really tell you much until they grow and develop at their own pace. I avoided looking at the internet as my husband got so upset about the condition after looking it up. I have now done so though but tried to remain open minded. Dont know if all this waffle really helps but for me it is good to know I'm not alone :-)