baby seizures

[fairywings]

Just an upate : Ryan was finally diagnosed. He had an EEG the Tuesday before last and it IS the Migrating Partial Epilepsy of Infancy - there are only around 100 cases world wide and Ryan is the 6th diagnosed in the U.K. Up until now all the traits never showed on the EEG, just some which is why they could not diagnose it.

The average life expentancy based on all reported cases so far is 2, but the oldes was 8, so who knows how long Ryan has left. They can develop other things like scoliosis and Gastrostatus (where they can no longer eat, drink or tolerate meds.) They are prone to chest infections and pnuemonia (sp?), too, and rarely develop much in the way of milestones. He is 6 months old now.

But we can bring him home soon, and have weekend leave now too. So we are going to make the most of him while he is here. xx

 

[louise1302]

awww hun, so sorry youre going through this. Ryan sounds like such a fighter massive to you and your family x

 

[AmyBumble]

oh my goodness, My thoughts are with you and your family sweetheart.

I really dont know what to say to you except that my heart goes out to you and well done for coping with this so far. I am sure that there are very hard times ahead but you come across as a strong and brave woman so I know you will get through them.

If you ever feel the need to chat, Im not the wisest woman you'll ever meet lol (far from it!) But I want you to know Im here if you want to vent or anything at all. I know you dont know me but I just think it helps everyone to have support, no matter where from.

I will be thinking of you and your family. Bless you all xxxxx

 

[lady3]

Thank you for updating us. I'm keeping him and your family in my thoughts through this whole journey.

 

[wantababybump]

Your family is in my thoughts xx

 

[nkbapbt]

Im so sorry hun. I have been quietly following this thread. I didnt want to say anything till now because I had no input. But now I just want to say how terribly sorry I am.

 

[fairywings]

Thanks for all the kind words everyone. Means a lot to me. xxx

 

[Emmea12uk]

I am so sorry. My heart goes out to him and you and your family. I am so pleased you can bring him home and be a family, if only for a short while.

I really wish you all the best. God bless you all xx

 

[premmiemum123]

Hello, have just read your story. I am so sorry to read about Ryan, I hope you enjoy your family time together...x

 

[fairywings]

Update:

Started a group for Ryan on Facebook if anyone wants to join. It is just to bring more awareness to the condition. I know it is rare now but it may not be one day and the more people know about it the better.

Thanks.

https://www.facebook.com/home.php#/group.php?gid=179731660837&ref=mf

 

[helen1234]

shit honey i dont know what to say, are you on the epilepsy action website are you getting alot of support.
anything i can do

 

[helen1234]

just seen you are on epilepsy action

 

[fairywings]

just seen you are on epilepsy action

I go on Epilepsy Action but am not in contact with anyone, or anything.

Thanks.

 

[fairywings]

Hi everyone been a while since I was on here.

Update on Ry Ry: He was brought home in December 2009 and we tried very hard to control his seizures. we finally found the right mix of Lacosamide, Clonazepam for seizures and Domperidone, Omeprazole, Ondansetron for his severe gastric reflux. He was also put on morphine to stop the pain of his gatric-status (where the stomach shuts down). He had a few episodes of being back in hospital with blocked gastrostomy, one infection, couple of status episodes, but a good first year back at home.
In early April 2011 ryan got pnemonia which meant he had to be on constant oxygen for a month. He picked up for a week and we got him off the oxygen, only for him to fall ill again in May. His meds were all upped as his seizures increased and he had a good week before he aspirated badly and caught pnemonia again in the same right lung as last time. His seizures were also back with a vengeance. He was in hospital for the night and moved to the hospice where during his first night there he was put on sub-cut phenobarb. took 4 or 5 days to get the level in the syringe right that his seizures settled and he slept. But soon after he caught an infection in his left lung which collapsed and he spent a few days fighting on with his pnemonia filled lung.
Amazingly he fought the infection in his left lung and it reinflated- none of the nurses had known of that happening. But his stomach was failing and by this point was not absorbing his meds, food or water. He was also on sub cut Nozinan(for secretions and sickness), morphine for pain and midazolam for pain.

Sadly on the 16th June 2011 after 10 days fighting he was too tired and passed away in my arms with his Daddy and grandparents with him.

Night night Angel. I love you. He was 2 years, 1 month and 14 days old. xxxx

 

[Emmea12uk]

I am so sorry to hear this. You all went through so much. I can't find the right words.

Rest in peace with the angels Ry Ry.

 

[Nic1107]

I am so sorry I can't begin to find the 'right' words. You and your family will be in my thoughts and prayers. Rest in peace, little man.

 

[Ilovehim89]

So sorry you are going through this! Seizures are scary, that is for sure! My son only has febrile seizures but they are really extremely scary!!! You are strong, mama!

 

[fairywings]

Thanks we are not going through it anymore. he is at peace now. Sorry your child has febrile seizures. They are not nice to look at. Your child will most likely outgrow them with no damage done. Wish it had been like that for Ry Ry. xx

 

[louise1302]

oh hun i have no words, i remember reading Ryans story as my little one is of a similar age

fly high little man xxxxxxx

 

[Marleysgirl]

Thank you fairywings for coming back on to tell us about Ryan's passing. It's sad news and all our thoughts are with you and your family.