Hi all. The baby is asleep, and I'll try and update as best I can without making this into a never ending blog. Let's go back to where I left off. I'll time line it so it's less "wordy"
December 26th- baby starts having seizures the night of her 6 month shots. That morning around 9 (after speaking with her pediatrician who advised us if it happened again go to the ER) it happened again. 7 hours in the ER, where they took her temperature 3 times, refused to look at her birth records I brought, and the neuro resident examined her with a pen light they made the determination she wasn't having seizures as she didn't have one there. I started getting really p.o'd and requested to see the ER attending, who to pacify me gave her a dose of phenobarbital and sent us home with some. An hour after we got home she had several more seizures, I called the on call pediatrician who sent us back to the hospital to be directly admitted. We stayed until Sunday afternoon, and they did nothing in the hospital except put an IV port in her head. The neurologist that came in on Sunday didn't look at the video I had, or even examine her. He sat in a chair across the room and talked to me. Then left. No EEG, no MRI. Nothing.
December 29th- went to my regular pediatrician who ordered an EEG. Thank God for him.
January 5th- Saw pedi neuro, he said he thinks it's muscle spasms/ spastic movement, a product of the stroke
January 6th- 1st EEG. It was horrible. The baby cried almost the whole time, they glued the electrodes to her head, and she still has glue on her head from it. We've since found out they have paste that they use, and usually don't glue them on for short term EEG's.
January 7th- Our Pedi neuro calls and tells us she has hyppsarrythmia (otherwise known as Infatile Spasms). This is what I had feared all along, but kept telling myself since the neuro didn't think it was an issue I shouldn't. Infantile spasms is a catastrophic, rare form of epilepsy that is very difficult to treat, and causes developmental delay and regression. 1st line treatment is usually steroids (side effects can be hypertension, problems with glucose/electrolytes, irritablity, weight gain, increased appetite, kidney issues, decrease immune function) or Vigabitrin (not FDA approved, major side effect peripheral vision loss). We were started on Topamax (an anti eleptic drug/migraine drug).
January something or other- baby has a series of seizures and can't tell if she is responsive during it, so we call 911 and take the ambulance to the ER. Her evaluation there was good, she stopped seizing before the paramedics even showed up, and played the whole time in the ER.
January 26th- went to NYU to see neuro specialist who specializes in IS and childhood epilepsy. He increased Topamax to a very high dose in a 3 week step up period. Side effects lethargy, decreased appetite, metabolic acidosis, kidney stones.
January 31st- We are supposed to leave for CHOP on Monday February 2nd for our Feb 3rd appointment. Larry wakes up, starts complaining of a headache. 330 takes ibuprofen. Still complaining of what we think is migraine symptoms. I gave him a Treximet (migraine med..I can't take it because I had a bad reaction. Same as Imitrex, what he usually takes..just has naproxen in it) Starts complaining of "bright spots in his vision" and double vision. Goes to lay down. I check on him a few minutes later and he is complaining of burning in his right hand and fingers. I notice his left pupil is small and fixed. Our room is dark, so it shouldn't be small. I tell him we need to go to the ER, NOW. He says no, it's a migraine. I tell him no, we need to leave. He says no. A few minutes later he says he has pressure and tinigling behind his left eye and in his face. I say that's it, we are going. Get to the ER and I tell them I think he is having a stroke. They immediately take him in. While talking to the ER dr I notice his speech pattern is different. CT's, EKG's are done. When he came back from the CT his speech had improved. Waiting for MRI. ER dr comes in and shuts the door. CT was ok, no masses. CT angio showed he has a clot/blockage of his internal cartoid artery. He was having a stroke. He was admitted, had an angiogram Monday Feb 2nd that showed a cartoid artery dissection. He had a tear in his carotid and the flap from the tear is what was causing the blockage. It is at the base of the brain, too risky to operate and because he has good flow in all his other vessels they don't feel the need for invasive treatment. He came home Feb 4th on blood thinners, Lipitor and needs to be closely monitored right now. They gave us no indication as to why this happened. Because his brain redirected the blood so quickly his stroke symptoms stopped and no other neurological deficits occured. Neuro said to follow up 6-8 weeeks. We saw our primary yesterday who said he needs to be seen before that...can't believe they would make him wait so long. He is home, tired, anxious, and not understanding why this happened.
Feburary 7th- as of last night the baby started refusing solid food (so she is not taking her seizure medicine now because she gets it in her food) She cries when she sees the spoon. As soon as she gets a taste of the sprinkles in her mouth she holds it under her tongue, usually gags, and throws up. Or she cries until eventually it just goes down her throat. I have been able to get maybe 2 full doses in her in 36 hours. Obviously seizure activity has been very bad today. I called the ped in desperation and got tablets to crush hoping that will work so she can take her meds. We were supposed to start her last step up today. We are pretty sure we are going to have to choose either Vigabitrin or ACTH now, because the Topamax isn't providing enough reduction in spasms and now she won't take it anyway. (at her worst she had over 200 spasms in one day).
So, that is what I've been up to lately. Top that off with my usual migraines and overall anxiety and depression (which today has been horrible). I've pretty much cried all day today because the baby won't take her meds, and I feel like a failure. I can't keep her safe and protected from all of this horribleness (is that a word?) that plagues her, and I can't get her meds in her to make her seizures decrease. And my husband is a mess, crying most of the time, depressed because he thinks it's his fault we didn't go to CHOP, scared about what is going on with him, scared about what treatment we will do next with the baby, stressed because I am so stressed. I've tried so hard to keep it together...but today it just all fell apart.
I really appreciate everyone who takes the time to read this, and to leave kind words and thoughts. I have better support from my online friends than I do from my best friends (who literally havent called me..one not at all and one not since we got the IS diagnosis). I thank you all for your continued support, and ask that if you pray just say a little prayer for my husband and my daughter, and if you aren't religous maybe just send a good thought their way. It is much appreciated.
I'll blog more later, I just wanted to let everyone know what was going on, and why I haven't blogged sooner. Hopefully I'll have better news to blog about.
Thank you all again!