We went to see a Genetic doctor. She wanted to go over all his blood work, Cat scans, MRI's, PET scan, EEG's to see if there was something like an underlying condition that our Finnian might have.
When we saw her again the end of December she was able to tell us that the stroke that Finnian had in-utero was not the cause of all his problems. She ordered some blood work we have gotten some results but one we are still waiting for. Some things were not normal so we have to go for another test. She wants him to have a Lumbar puncture also known as a spinal tap. The problem was to get a lab to do a certain test we nearly had to send his CSF to Europe to have this test done. They will also do the regular CSF testing to see if something will show.
It would be great to have a name for what he has well at least we will be able to go in the right direction for his treatment.
His seizures are funny again so when we saw his Neuro doc on thursday she increased his Keppra again. Keppra has been good but now he seems to be taking mega doses I don't know. We know he may never be seizure free but its the grand mal seizures we could do without.
Will update on the testing when all the results are in.
Saturday, January 31, 2009
Happy Birthday my little man
Our Finnian turned 4 years old on the 27th of January. He will be having a party its just a small family affair. Auntie Dee is making him a cake which he cannot eat because he is on the Keto diet but everyone else will enjoy it.
Wednesday, January 21, 2009
A beautiful song
You can see that I have done a new play list. Well there is a beautiful song on it. It is for parents of special needs children.
Please listen to
The life that has chosen me by Karen Taylor-Good.
Ger
Please listen to
The life that has chosen me by Karen Taylor-Good.
Ger
Well the bubble burst
Dam seizures are back.
We had one on Saturday night well we had been watching out for it but the one last night really pissed me off.
Yeah he had peeing problems again yesterday but he had an Infantile Spasm seizure last night that even with Diastat lasted for over 10 minutes.
Today he is still very jumpy jerky and then to top it all off the laughing seizure started back. We havent seen one of them in almost 2 years. I called the doctor again so they decided to increase his Keppra again. My poor child is on mega doses of meds and the Keto diet. I don't know but at the same time we had 6.5 weeks of no seizures the best we have had ever.
The ortho appointment was today and his hip hasn't gotten worse so we have to wait again for another 6 mths but if the popping noise gets worse we have to call.Finnian's tone has been getting spatic in his limbs so the doctor suggested we talk to the neuro about a med to reduce his tone. I don't know about this he is on so much already but we did find out that his potassium is low maybe its more cramping from the low potassium than spacticty. I will mention it to the neuro next week but I would like the seizures to stop.
We had one on Saturday night well we had been watching out for it but the one last night really pissed me off.
Yeah he had peeing problems again yesterday but he had an Infantile Spasm seizure last night that even with Diastat lasted for over 10 minutes.
Today he is still very jumpy jerky and then to top it all off the laughing seizure started back. We havent seen one of them in almost 2 years. I called the doctor again so they decided to increase his Keppra again. My poor child is on mega doses of meds and the Keto diet. I don't know but at the same time we had 6.5 weeks of no seizures the best we have had ever.
The ortho appointment was today and his hip hasn't gotten worse so we have to wait again for another 6 mths but if the popping noise gets worse we have to call.Finnian's tone has been getting spatic in his limbs so the doctor suggested we talk to the neuro about a med to reduce his tone. I don't know about this he is on so much already but we did find out that his potassium is low maybe its more cramping from the low potassium than spacticty. I will mention it to the neuro next week but I would like the seizures to stop.
Saturday, January 17, 2009
Happy New Year
Well Happy New Year everyone.
So far this month has been kind of good. Very cold in New York only 17 degrees.
Our Finnian has been doing good he had a problem peeing the other day I just kept saying I will give you 5 more mins before I will bring you up to the hospital. Well he finally peed THank God. I feel so bad well everyone know what its like if you have to go but you have to hold it. Our poor lad wanted to go but couldn't.
I have noticed his peeing problem usually goes hand in hand wiht his seizures so we were watching him like a hawk we wereso sure we were in the clear but it happened. Grand mal seizure tonight. Now we have to watch him incase he has a few more. We had been doing so good 6.5 weeks with out one.
This Wednesday we go to the ortho doc and find out if our Finnian is going to have his hip/leg surgery.
Will let you know what happens
So far this month has been kind of good. Very cold in New York only 17 degrees.
Our Finnian has been doing good he had a problem peeing the other day I just kept saying I will give you 5 more mins before I will bring you up to the hospital. Well he finally peed THank God. I feel so bad well everyone know what its like if you have to go but you have to hold it. Our poor lad wanted to go but couldn't.
I have noticed his peeing problem usually goes hand in hand wiht his seizures so we were watching him like a hawk we wereso sure we were in the clear but it happened. Grand mal seizure tonight. Now we have to watch him incase he has a few more. We had been doing so good 6.5 weeks with out one.
This Wednesday we go to the ortho doc and find out if our Finnian is going to have his hip/leg surgery.
Will let you know what happens
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