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Forgetmenot

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Oct 6, 2014
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DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
This isn't about Fibro, but as I see most of you as friends I'm going to ask this
My 3 year old is being referred to hospital.its all started 6 weeks ago.she had tonsillitis .she was shaking and her lips went blue.
I though of dear she cold and wrapped her up.spin forward two weeks she was over her illness and had her pre school boosters .she really was very unwell ,as she had had a reaction to the shoots.
Dr weren't to worried and looked to make sure she didn't have tonsillitis again all was well.
Once again out of the blue she started shaking and went blue.
So I'm now thinking hold up what wrong.anyway she went to school today I told them about her shaking and she was happy playing when I left.two hours goes by and the school ring me saying she was very shaky and couldn't use her hands properly.then said she seemed to zone out. And seems miles away.when I got there bless them they had her wrapped in a blanket .but she was blue for over and hour.
The dr said she maybe having seizures.and refereed me .
No one told me what to do if she had a bad one. I do no btw.but I felt a bit lost.
My brother had fits as a small child .i never did.
Has anyone mum or dad had anything like this . The dr said her heart was fine .
 

terbaer

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Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
How scary! I haven't been on for a long time, but I saw the question was from you so decided to read it.....

I can't speak to what is going on with your daughter, but I can speak to having a son that developed a seizure disorder at around 8. It was first discovered when I heard a sound in his room after I had gone to bed. I got up and went in to see what was going on and he was in the middle of a seizure. Of course I had no idea at the time and thought he was dying! After much testing, it was determined that he developed an adolescent seizure disorder that hit him just after he was asleep, so it was a nocturnal seizure. As he dozed off, he would have a seizure. We got him on meds for it and they helped. We went along with this for several years when Cody started getting in trouble at school for not paying attention. After much testing it was discovered his seizure disorder had morphed a bit to include absent seizures. They are a period of time where he would basically check out, looking spaced and distant. It was the type of seizure he was having. We had to get a plan at the school so that they had to give him his assignments in writing and provide assistance so that he didn't fall behind.

I will say that after each seizure, he was lethargic and pale in color. He spoke like he was drunk and his eyes were very droopy. He eventually outgrew it, which can happen in most cases, but not all.

I hope this has helped a little. Hang in there.....
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hey Forgetmenot...so sorry your little one is poorly. I can't help with this one but having been on here for a while communicating with you I wanted to say i hope this gets investigated and resolved for you both. Its awful when our children are not ok.

Hugs to you both. x
 

Forgetmenot

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Oct 6, 2014
Messages
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Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Ty both of you for replying. That means a lot.��
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
So scary Willow. That being said I would insist on a MRI ASAP, it may be nothing but I would start ruling out anything brain related. I know you where hoping for more exsperiances answered. This all I've got. First hubby and my BFF both had/have seizures. Kinda sounds like it. But no medical expertise here.
Please let us know what you find out.
Prayers going up.
 

DK_engineer

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Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
I don't have much to add, but I am praying for you and your daughter too.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,529
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Here in the uk unless u can pay private you have to wait for an appointment.could take a month. But if she had a bad turn I'm going to A&E
Even if I sit there all night.
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
Hang in there Forgetmenot. You'll get some answers....Sending positive vibes and prayers your way. Hug your little one for me....
 

Trellum

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Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
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NL
State
NL
Oh no, so they are not very sure of what the problem truly is? That is so stressing and taxing on your peace of mind! Poor of you and your girl, I hope you find the answer soon and finally find out what is wrong with her. There is nothing worse than that uncertainty prior to a diagnosis you don't even know if oyu are going to get or when or if it will be the right one.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
I'm not sure why I wrote willow, I must have had her on the brain!!! I forget your health care is so different, waiting on answered must be the hardest thing when it comes to your child. you and your baby girl are in my prayers.
 
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