It is SO wonderful having my little man back. He giggles, smiles, squeals, and interacts, and every part is AMAZING!
Unfortunately it’s hard to not fear the wean of his ACTH. I keep reading posts from other moms and some babies regress again once off the medicine. That must be unbearable. I pray with all my heart that Z’s results are permanent! But lately moms of older IS children have been posting about their healthy, spasm free, normal kids, so that gives me hope!!!
Because we got our BABY BACK!
LOL. Yes, that’s silly, but we’re giddy.
We had a repeat EEG on Friday to see how it looks with his new meds, the ACTH. Couldn’t believe it when the doctor came in and told us the EEG was normal. NORMAL. N O R M A L. Even now, writing it, I just can’t believe it.
Sitting in the doctor’s office, finally getting a bit of good news, was incredibly emotional. I mean, we’re not out of the woods yet, since he has a couple more weeks on the max dose and then several more weeks weaning him, and some babies do relapse. But still, this is the first bit of good news we’ve had. After months of trying to figure out what he had and how to best fight it, it’s a whole new set of emotion to find out we know what it is and have something that’s working and there’s no more fighting necessary. So of all the stinkin times to tear up, I chose that moment. But they were true tears of JOY!
He got over the inconsolable crying and replaced it with smiles… SMILES! We haven’t seen a smile in months, so it’s amazing and wonderful. He’s gaining back milestones at warp speed. (He had lost a LOT… at 7 months, he was really more like a 2 month old.). So you can imagine our joy and excitement… complete elation! 🙂
I’ve been scared to write, as if putting words on paper (well, not exactly paper, but you know what I mean), was going to jinx it or somehow make it not true. But I know that’s silly and I know there are friends and family who follow his progress, people who have been there for us and who have had Z in their thoughts and prayers. We appreciate you being with us through all of the bad and are excited to finally share something good!
Please continue to keep him in your prayers as we get through the next few months. We know he might eventually have other seizures or it’s possible he might have some learning difficulties. But at least with the spasms gone, he’s got a shot at a good life, and that’s what we’ve been fighting so hard for. 😉
We have an EEG tomorrow, bright and early.
Then off to the clinic appointment to discuss the results with the neurologist. I’m crossing my fingers that the hypsarrythmia is gone. GONE as in sayonara, adios, goodbye! (That’s the FIRST step. Then, if that’s the case we still have to get through another week on the full dose, and then the wean, and KEEP the hyps GONE with no relapse. So, no end in sight, but looking for a positive sign!) If the hyps isn’t gone, my heart will be broken. I don’t know where we go from here. Will hopefully discuss {finally} results of the MEG and see if surgery is or isn’t an option. I guess I hope it is an option, but one we will never, ever have to use.
Then off to the ophthalmologist to check his eyes (since he’s still on Sabril).
Then, when we get home, my hubby should be home from his 2 week trip to China!
When I read from other moms that ACTH would be hard, I expected hard. I knew he might be upset, irritable, inconsolable.
But then when it happened I realized I had NO idea. It has been hard. HARD. REALLY REALLY FREAKING HARD.
For the last couple of days, he has been crying like I’ve never heard him cry before. It sounded like he was in pain. Nonstop pain. Moving his head back and forth, over and over, not sleeping, not napping. He probably slept maybe 2 hours TOTAL in 15 -30 minute segments in a 24 hour period. He was absolutely MISERABLE, and docs said there was nothing we can do (not that they don’t want to help, but it’s a known side effect). Other moms said just get through it and that their babies were helped after they were weaned. But it’s freaking hard. We are all on edge, all exhausted. I snapped at Abby about something that didn’t even matter and then beat myself up for it (and, of course apologized and tried to explain Z’s condition).
Then, last night he finally crashed. Slept all night. I kept waking up to make sure he was breathing and ok. Then this morning, so far he’s been ok. Not himself, but not inconsolable. Crossing fingers the worst is over, on so many levels.
I keep thinking how hard it must have been years ago, to not only get a diagnosis, but to cope and get support. Technology has been our friend in these respects. Yet, it’s not that simple. It’s a double-edged sword. When you connect with other parents, you don’t only get the good stories with the happy endings. You hear all of their trials and tribulations as well. So for every story about how a certain treatment or medicine worked, there are many others when it didn’t. As a parent, you learn to wait and see, but you learn quickly that so much of that is waiting to see when the next shoe is going to drop.
I got an email from one of my best friends last night. A family moved to her neighborhood and their 10 month old daughter has IS, and today, she is having brain surgery. http://www.savannalininger.posterous.com/
Reading their story hurts. It physically hurts. I feel like we’ve been there, but also like it’s a map to where we’re going. Their doctors and our doctors didn’t make all the same decisions in the same order, but basically we’ve tried everything they have tried.
Scary stuff.
So… yesterday was a lot better than the day before. The antibiotics kicked in and baby Z’s fever disappeared.
The pedi was still very concerned about his kidneys but agreed not to do any blood work until we repeated the urine test. They wanted to use a catheter but baby Z has been through SO much so I told them just to put the bag on and I would be happy to bring back the sample.
We heard back that the new urine sample was fine… that he is concentrating his urine, which means his kidneys are working! Phew!
Glad I was at least able to save him from more unnecessary pokes (blood & catheter).
He was much more active when awake, though did sleep a lot. He was very vocal when he was awake too.
We moved up the dose from 25cc to 40cc, per neuro team. Will be there for a few days then will move up to the highest dose of 60cc. Basically we were told it will either work or it won’t. Either way, we’ll start to wean him off because at that point the side effects of the drug are worse than what we’re treating. 😦
I hope and pray it works, because after this, we’re out of real options.
Then to start out this morning, he had about 10 spasms. The actual spasms are short, but the whole episode lasted 7 minutes. Plus, he cries after each one now, which is heartbreaking. I don’t know if it’s painful or if it scares him, or if it just feels weird.
Besides having blood pressure on the high side, he really hadn’t had any of the terrible side effects like extreme crying, mood swings, extreme hunger, etc. But he has been much more alert, vocal, and even a little playful at times, though still not my smiley, giggly baby from before. But I’m still hoping and praying the larger doses permanently do the trick. But we’ve only got one more dose and just 8-10 days left before we wean. So I would appreciate you saying a little prayer for him. He doesn’t deserve to be going through any of this. 😦
Baby Z woke up later than usual, and wasn’t crying for his bottle like usual. When I went to feed him, he wasn’t interested. Then I went to stroke his head and realized he was warm. Turned out he had a under-arm temp of 99.7, which isn’t much. But when I talked to the neuro team, they reminded me that under-arm is about 1 degree less than mouth, amd that is 1degree less than rectal, so he “did have a pretty good fever.” They reminded me he has a compromised immune system and told us to go to our pediatrician. When we got there, his temp had gone up. Turns out he had an ear infection. It wasn’t a huge surprise given the fact that he is 7 months old, and is especially susceptible due to his throat. Did a chest x-ray which was clear, which is great news, especially since he does aspirate.
He will take antibiotics for 10 days, and will continue on another preventative antibiotic 2x/ wk until he gets off ACTH.
Unfortunately, he had one episode of clusters today that had more spasms than I have ever seen, about 45. The neurology team told me not to take him to the ER, as there was nothing they could do. 😦
I’m not sure if it was due to the fever or to the antibiotic. But I wasn’t expecting that and it was so hard to see again. 😦
All in all, a rough day, but he’s doing better now. Have to go back to pediatrician tomorrow and back to neurologist on Friday.
Seizure Free. I pray we have a trillion more like it! Baby Z squeeled with delight playing with toys. It was MUSIC to my ears! :).
Unfortunately, we’re not out of the woods yet. Our roller coaster continues.
Baby Z had some spasms around midnight last night. Then more around 9 a.m. this morning. I talked to the neurologist’s nurse, who talked to the neurologist, and they don’t seem overly concerned. I’m just supposed to watch him and if he has any more over the coming days, we’ll up his dose. So, we have a plan. It’s just that it’s hard to see. I want him to get his miracle!
The rest of the day was good though. He got to eat real food (I think I forgot to mention they took him off the ketogenic diet for now). He was a lot more playful, did better at tummy time, rolled over, and was just bright eyed. So, it’s definitely doing something, because he hasn’t been this active and playful for a while now, and that was amazing to see!
Baby Z had a great evening, night and morning, with no additional spasms.
I was the one to actually give the shot today. It was terrible to have to give a shot to your own baby. Yet, it wasn’t nearly as bad as I thought it would be, so that’s somethin. I think I passed their “test”, and they might let us go home today! Yay!!
The fellow came in to talk to me, and he asked if I knew so and so. I knew the name but couldn’t place it, and then realized she was the angel (ie. resident) who first saw baby Z’s video and took it to Dr. V, who gave us the I. S. diagnosis. Baby Z’s name is unusual enough, and maybe his case is too, that he sticks in people’s heads. The resident and fellow are friends and the fellow mentioned that they had been commenting via text at how much better baby Z’s EEG was looking.
That was AWESOME news! That means that the hypssarhythmia is maybe not gone, but it’s not as severe, and that is a great sign! I know it’s not a cure, but it still let me breath a sigh of relief!
We ended up coming home and baby Z had a great evening. He lifted his head off the floor during tummy time, and he even reached out to grab his toy… something we haven’t seen in a l-o-n-g time. It’s amazing to see!
Baby Z had his first dose today, after having spasms this morning. This time, the nurse walked me through it, but she actually gave the shot. Poor baby Z… he is so used to getting poked now that he hardly even cries. Breaks my heart that he is used to it. Breaks my heart when he looks into my eyes wanting me, his mom, to help him, but I’m the one who is always there when he gets poked. I sure hope he understands we are desperately trying to help him.
About 30-45 minutes after the first dose, he had another episode of about 10 spasms. But, it was too early for the ACTH to have taken effect. Still… hard to see when you are desperate for a miracle. The fellow came in and was commenting that everyone was curious to watch and see if the EEG showed any changes.
Here we are, back in the hospital, for the 5th admission in 3 months.
After some pretty crappy experiences, I know neither of us was looking forward to it. But, I was excited to final get baby Z on ACTH. It was actually the treatment I wanted first, but after seeing the whole fiasco with getting the stuff, I don’t think the insurance company would have approved it back then, even if we had tried. I’m not very excited about having to give him shots myself, but I am hopeful it will help him.
First off, baby Z had a repeat swallow test. He is still aspirating regular liquid without coughing. So, they want to continue to thicken his bottles to nectar consistency. But, I did confirm with that doc that it is a swallow issue, not a reflux
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It was kind of like being under house arrest, because I couldn’t leave today until the ACTH was delivered. They estimated it would be afternoon, but I wasn’t going to take any chances, so we didn’t go anywhere all day. But it was finally delivered! Phew! All set for the hospital tomorrow.
I was on the phone for a big chunk of the day and I found out that there were a lot of “hiccups”, as one person said.
When we were going to do ACTH a few weeks ago, and then switched to the ketogenic diet, I was told that Z was already approved for ACTH and that all the docs had to do was call and remove the hold. Unfortunately, that wasn’t exactly the case. The insurance company had NOT approved the treatment. Because of the extremely high cost of the treatment, it wasn’t something my case manager or even her boss could just approve. It had to go to the board, and it had to be studied by their doc to see if there were any other treatments that could be done instead. But, we’ve tried everything else, and this is the best drug out there for this condition. So, there was no way for them to tell us to try anything else first. Thankfully, they did approve it, and thankfully we have already met our out of pocket maximum, because it is crazy expensive. Like, more than our first house kind of expensive.
They had also tried to get a hold of the neurologist or someone in the office. But, the only number they had was for the nurse who happens to work part-time right now because she’s studying for her tests. The insurance company didn’t have any other numbers, and for some reason, they wouldn’t call me. (That irritates me, because I had other ways to get in contact with the doc.) But, our case manager wasn’t working on Friday and it had gotten passed on to her boss.
Once the insurance talked to the neurologist, they approved it to go to the pharmacy. But, then the pharmacy needed to contact the neurologist. Basically, there was just a lot of paperwork that needed to get filled out and certain critical people were out of the office and it was just a series of “hiccups”.
But, it did get approved!
Then the pharmacy called to arrange a ship time, and they wanted it to arrive on Thursday. But, our admission got moved to Wednesday. That’s when I had to bring out momma bear. I mean, really, were they trying to save the cost of overnight shipping on a medication that was that expensive? The hospital can’t just necessarily get us in to start treatments like this whenever we want. But, they had an opening on Wednesday, and I didn’t want to wait another day or two… or four or five till the next week, just to save the pharmacy from overnight shipping. Ugh, NO. So, I was getting pretty firm, but remembered the old adage about catching more bees with honey… and I stopped myself and explained how old baby Z is, his condition, and how every day he doesn’t have treatment is another day of regression. Then the pharmacy guy quickly approved overnight shipping so we could have the meds on Tuesday, and still make our Wednesday admission. Phew!
Our Journey with Infantile Spasms 