Generalised cortical atrophy

[Catylulu89]

Hi guys,

I’ve had ITP for over 20 years. I was diagnosed at 7 years old after a severe cold. I’m now just about to turn 28 and I have recently been told I have Generalised Cortical Atrophy. It has to be noted I’ve not got alcoholism (I don’t drink at all), I’ve never had a stroke and of course I don’t have dementia! I’ve never had any serious head trauma, I have fallen down the stairs a few times in my life but I’ve never presented with a bleed.

It is leading me to wonder if my ITP could be playing a role in this. Does anyone have any experience of these diagnoses?

I don’t get monitored by a heamotologist and I don’t take any medication for my ITP, I just let it run it’s nerry course on it’s own.

Platelets can range from 3-188. Depending on if I have a viral infection or have my period.

Throughout my life I’ve suffered from terrible headaches, almost always in the left side of my head, and it’s always been scanned and said there was nothing there!

Any advice would be appreciated!

Many thanks

Cathrine.

[2sweetkids]

Hiya, I do not have any advice but that must be awful for you.

Do you function well or do you get very tired?

My son(7yr old) has had itp for about 1 and1/2 years now and he is a very active little boy so hard for him. I try to keep his diet as healthy as possible and use immune support supplements although doc says it has nothing to do with diet!!

[Catylulu89 in reply to 2sweetkids]

Hiya,

I know exactly how hard your little one is finding it, I went through exactly the same thing!

At that time when I was diagnosed there wasn’t so much information available about ITP as there is now so I was wrapped up so tightly in cotton wool it was mad.

I’ve heard lots of things about diet and ITP but I’ve never bothered too much except to avoid quinine. Which is an active ingredient in things like Irn Bru ( and being Scottish it’s hard to avoid!)

I get exceptionally tired but having had ITP as a kid I missed out on so much too! If I were to give you advice it would be don’t wrap your little boy up too much, obviously contact sports are a no but inevitably you are going to get bumped and bruised along the way. Involve his friends in his ITP, my headmistress was so good and telling all the kids I had this condition and to be more careful with me and they were, right the way through school.

Keeping him on a good diet won’t do any harm and it will be good for when he does have to miss out on all the sports he can’t do. I was just plonked in a wheelchair and given anything to eat which led to being an overweight child.

You are doing totally the right thing, Doctors don’t always know what’s best, I can’t speak for everyone with ITP but when I was at the conference this year there were loads of people who had conflicting advice from every Dr and every Dr had different ideas and opinions.

Just trust your gut and trust your little one too!

I’m happy to chat if you want to chat about anything or need and advice!

Best of luck!

Cathrine x

[ChrisCal in reply to 2sweetkids]

Don’t stop him doing things!! When I found out I had ITP I was about 3 years old and at the start everyone was very nervous about it! After about 3-4 years of being treated like glass We decided enough was enough, so I started doing everything again. I played Ice hockey, basketball, football and any sport I could get my hands on. If you are nervous about it basketball would be a good start for your boy, he would be able to play all he wants and not have to worry about getting hit much.

I can’t tell you how many times I came home black and blue and applied ice and anything to stop the swelling etc but now I’m 29 and still going strong with ITP last count was 24 but I still do whatever I want.

Tell your little one not to worry and that he will be out doing things before he knows it. If you can find a local basketball club would say that a good idea, swimming as well is good!

[Arditajtsh in reply to 2sweetkids]

I am happy for your son i want to know if he is stable now? Because my 14 year brother is diagnosed with itp. Does this disease go away after treatment?

[2sweetkids in reply to Arditajtsh]

Hi, I think I replied to you on another thread.. no his platelets are low at the moment.. it’s disheartening☹️.. we have had various treatments but because he is so young he doesn’t have any consistent treatment.. we live in Scotland and at the moment he gets monitored and is not allowed to do contact sports.. I hope your brothers turns out to be an acute case.

[2sweetkids]

Thank you for both of your replys.. My son is very active and plays football when his platelets are above 50. This isn't very often though.

He does swimming and loves it though. Although I'm embarrassed when his counts are low low. They have been at 4 with bad bruising so you can imagine what he looks like in swimming trunks!!

Catylulu89 we also live in Scotland. North east near Aberdeen. When do you live?.

To both of you, when you were 7 were you over emotional with this problem? As I find him very emotional and do not know whether it is down to the platlet trouble or if this is just him growing up and becoming more aware. I know he feels frustrated and behind in sports as he isn't getting the practice of the other children.

To Chriscal.. Basketball isn't such a big thing in Scotland I don't think but I will have to look into this..

Thank you so much for your advice and support, wishing you good health

[JJMcLaren]

My daughter was just shy of 3 when she was diagnosed and she is now 10. I can tell you when her counts are low she is over emotional and has some behavior issues. I've heard this can be common with kids that have ITP. I feel there is a big connection between the two.

[2sweetkids in reply to JJMcLaren]

Hiya, thank you for reply. Goodness me your daughter has had itp for over 7 years?? How does she and you cope? Is she an active girl? Do doctors believe she will grow out of it?. Yes my son is over emotional and then hyper and over excited... is this similar to your daughter?.. it is comforting to think that the over emotional side is linked to itp xx