Saturday, February 28, 2009

Finnian has a new friend

Finnian's new friend is Billy Caldwell and he comes from Omagh, Co.Tyrone, Ireland. Billy and his Mammy came to Chicago to get medical help for Billy. You see in 2006 they were told to take Billy home there wasn't anything they could do. Billy has Epilepsy.
Thanks to the internet Billy's mom Charlotte found a Doctor in Chicago and Billy's seizures have been greatly reduced.
You can scroll down to Finnian's friends to the right and get connected to Billy's foundation.
Charlotte Billy's mom has not only helped her own child but through Billy's foundation she has helped other families come to the US to get the proper treatment for their childrens seizures.
So please take a look at Billy's site.

Sunday, February 22, 2009

They are all sick now

Well the bug has almost gone full circle in the house now. Maura started first and had to take her to the ER. Finnian was was throwing up on saturday now he is sneezing and running a low grade temp so I guess its off to the doctors office tomorrow with him and Maura.
Now Eoghan has the bug I am a little worried about him as it is the first real sickness he has had since being diagnosed with EE. Its something I don't really know how it will effect him so I will have to keep an eye on him.
Life is a learning experience but in the last 4 years I have learned so much from my kids. They have put me in a new direction I am doing things I never thought I would ever do. THe saying is true " You never know how strong you are , until being strong is the only choice you have". Never in a million years would I have ever dreamed that I would be changing g-tube buttons, putting an cather when Finnian doesn't pee, checking O2 levels and then with our Eoghan reading every lable on a food package to make sure that there isn't something in there he cannot have.
Then there is our Maura wise beyond her age and she misses her Finny when he is in the hospital.
But in all they are great kids.

ER trip again

Well I was in the ER again last night but with Maura. She started puking at Nanny's house on Friday so we all figured it the bug that is going around. She started puking very bad again last night and then she starts screeming my chest hurts. For all who know Maurs this is not her to complain. So off to the local ER we went. A little advice to all please don't bring your kid there. The service is horrible we were put into a room and were there for over an hour and no one had even taken her vitals, mind you she had a temp when the nurse in triage took it three hours before. I was a little PO and asked a nurse who is Maura's nurse that this was unreasonable that her vitals had not even been taken. Wouldn't you know a doctor comes right in it pays sometimes to open your mouth. By this time Mauras temp is at 102.9. They don't do xrays,blood work or even a urine test on her. He looks in her ears and throat and says they are not red no infection its just her face that is swollen and she probably has an infected gland. So the gve her meds to settle her tummy and then come back with antibotics 900mg of augmentin but yet they insist she is not that sick. Thantfully she keeps everything down and they send us home. If she needed to get an IV they would have to keep her but they didn't have any beds upstairs so she would have to be shipped to the north annex. So if your child is sick please do not bring them to the hospital up the street from us the service is horrible.

Friday, February 20, 2009

We are home

Its great to be home. Our Finnian had some Infantile Sapsms seizures yesterday while Joe was with him and also while I was with him. So course of action is to decreas his Keppra to 1250mg,1250mg and 1375mg and wait and see what happens. If this doesn't work we might do a course of ACTH and see.
To look at our Finnian you wouldn't think anything is wrong with him until you put him next to a child that is the same age, then you can see that his features are like that of a younger child. His roommate at the hospital was a year younger and thought that Finnian was a baby well so did his parents. They were a little surprised to find out that he was a year older than their child.
We were joking that Finnian had found the fountain of youth and that he would be an old man still getting the young girls because of his looks.
Well its just a waiting game now with the seizures we are still going in to the hospital in March for a follow up EEG and the spinal tap. So now we wait.

Thursday, February 19, 2009

He is in the Hospital

Yup our Finnian is in the hospital again. Since they maxed him out at 15oomg x3 daily the Infantile spasms have come back. So yesterday we took him to the ER and got him admitted. We had decreased his afternoon dose to 1375mg yesterday and wouldn't you know he was back to himself in the ER at 10 p.m. last night. So today we met with his doctor and I asked if they could increase him back to the 15oomg for the afternoon dose so they could see what Isaw at home and she agreed. So fingers crossed he should have a seizure tomorrow morning. He also had his peeing issues yesterday so wouldn't it be great if he had one of the apena seizures too. I can only hope.
Ger

Wednesday, February 11, 2009

FDA and Vigabatrine/Sabril

It looks like that the FDA is going to give Ovation Pharmaceuticals Inc the green light for the sale of Vigabatrine/Sabril in the U.S. This will be great for the children with Infantile Spasms we will no longer have to be getting it from Canada some people even get it from Europe.
What I hate is the drug is produced here in the States and then exported to Canada and then we get it from Canada.
The biggest risk in taking Vigabatrine is it can result in a loss of peripheral vision which may lead to permanent impairment of eyesight. When we were given Finnians IS diagnoses it was a no brainer for us at least try him on the Vigabatrine we had nothing to lose his vision was already damaged from the stroke and I would prefer if his seizures would stop.
Vigabatrine gave us our Finnian back. I had never realized he had stopped doing somethings until he smiled when I asked " Where's my Finny winny?" I remember it was like the first time he had smiled. Our Finny still has IS but also other seizure types.
So hopefully soon I will be able to go the the pharmacy and get Finnian's Vigabatrine and not have to worry if the Border Patrol got their hands on our Sabril.

Monday blues

Well our Finnian was playing hooky from school on Monday. Well his nurse wasn't in so no school for our Finny. All I can say is Thank God he was at home. Joe is off on vacation this week so I was getting a jump on the spring cleaning thing well I was painting the hallway. So Finny and daddy are hanging out on the couch I am on the ladder painting and all of a sudden I hear the sound I hate to hear. Finnian's shout. I just yell at Joe is that what I think it is? All I hear is yeah. So down of the ladder I come charging grab his bag and get set up and watch and wait. Well I didn't have to wait for long to decide his O2 was only 74 and his heart rate was 196 and his lips were turning blue. I yell at Joe to get the diastat while I got the O2 going.
Well all is ok he came out of it but he wasn't back to himself until later in the evening. When his nurse came in the next day I told her about Finnian she was happy he was at home when it happened to him and not at school becasue if she saw his O2 that low she would be in a panic.
He was at school Tuesday and today, he was a little jumpy on Tuesday but had a good day today. Hopefully we won't have any more of these at least not untill he goes in to the hospital in March then he can have as many as he likes when he is in there.

Sunday, February 8, 2009

A funny story

The one thing I always remember being told when I was young by my mother " Don't stare it's not nice". Its something I always tell my kids but kids being kids don't always listen or do they?
We were out in Micky D's yesterday Eoghan, Maura, Finnian and myself. It was kind of busy so I sat the kids at a table, parked Finnian and went up on line. I had put them in a place that I could see them. Got the order and went back to where the kids were. As I was almost at them I heard Maura say "Why are you staring at my brother?""Don't you know its not nice to stare". The first thing out of my mouth "Maura stop that" I looked at the man and he said "I'm sorry but is the little boy alright?" I just looked at Finnian and said "yes he's fine he's a special little boy". The man said " Oh as long as he is ok" I replied "yes he is".
The thing is Finnian is different but he does this thing with his eyes and it freeks everyone. Sometimes he will roll his eye all the way up so you don't see his eye balls all you see is the white part of the eyes and he will have his eyes opened. When he does this it doesn't mean he is having a seizure he just doesn't have controll of his eye muscles.
I tried to explain to Maura that people will look at Finnian and sometimes stare because he is different. Her reply " I guess their mammy never told them it's not nice to stare".
And so the saga continues.

Saturday, February 7, 2009

Update

Well Finnian's lumbar puncture/spinal tap has been scheduled for March 10th. He will be going into the hospital for at least 24 hours. At the same time they will do another VEEG on him to see how the seizures are going. It's sad to say but it would be great if he had one of his bad seizures while he is hooked up. Sometimes its like they don't believe me even though I tape the episodes. The camera is always ready and when I hear that shout the first thing I do is grab his bag and then the camera. Eoghan is great now he yells " Mam I'll get the camera and start taping you hook him up in his beeper thing." What he means by the beeper thing is his pulse ox machine. Once he is hooked up to the pulse ox then everything else comes out of the bag, the O2 canister, the Diastat,the suctioning machine and the stethoscope. Then we wait and see which course of action we have to take. It s usually O2 and Diastat.
Our Eoghan ate some cake on Monday morning and on Monday night he was sick. Its hard when you have food allergies and you can not eat the things you like anymore. It was the left over cake from Finnian's birthday party on Sunday. For the next party I must make a special cake that he can eat. Well the next party will be Eoghans 9th birthday and his cousins Aidan's. So I better get looking for a safe cake to bake.