Princess' pediatrician called yesterday.
For the past two weeks, Princess has had a cough, a runny nose and on occasion, been waking in the middle of the night. She was also up at the hospital and around MC before we knew that he had contracted the respiratory flu.
Princess' pediatrician told me she has Type III ParaInfluenza.
It didn't change anything. I wasn't anymore worried after our conversation than I was before. There was nothing I could do any different to help her.
Type III ParaInfluenza.
It's just a name for what I already knew.
MC's neurologist stopped by yesterday.
Since birth, MC has had spastic, jerky movements. In India, I continually inquired about whether the doctors felt he had a neurological condition, and point blank asked if they thought he was seizing. Often, his arms flap, his eyes move different directions, and he engages in a repetitive sucking motion... despite the fact that he doesn't know how to suck. He stares off into space, his limbs become stiff and he sometimes appears to be riding a bike.
Yesterday, after a particularly scary episode, MC's neurologist added Keppra, a second anti-convulsion medicine, to his regime. She mentioned, however, that given the frequency of his seizures, it's likely that medicine may not be able to fully control his Epilepsy.
Epilepsy.
If it's just a name for what I already knew, then why did it sound so scary?
For the past two weeks, Princess has had a cough, a runny nose and on occasion, been waking in the middle of the night. She was also up at the hospital and around MC before we knew that he had contracted the respiratory flu.
Princess' pediatrician told me she has Type III ParaInfluenza.
It didn't change anything. I wasn't anymore worried after our conversation than I was before. There was nothing I could do any different to help her.
Type III ParaInfluenza.
It's just a name for what I already knew.
MC's neurologist stopped by yesterday.
Since birth, MC has had spastic, jerky movements. In India, I continually inquired about whether the doctors felt he had a neurological condition, and point blank asked if they thought he was seizing. Often, his arms flap, his eyes move different directions, and he engages in a repetitive sucking motion... despite the fact that he doesn't know how to suck. He stares off into space, his limbs become stiff and he sometimes appears to be riding a bike.
Yesterday, after a particularly scary episode, MC's neurologist added Keppra, a second anti-convulsion medicine, to his regime. She mentioned, however, that given the frequency of his seizures, it's likely that medicine may not be able to fully control his Epilepsy.
Epilepsy.
If it's just a name for what I already knew, then why did it sound so scary?
((((Hugs)))) My heart goes out to you, and aches for you.
ReplyDeleteIt sounds scary I guess with MC because you are probably on high-alert with him, waiting for something else to go wrong because that's what you've been conditioned now to feel. It's good to have a name for his condition as it means the specialists can take better care of him which in turn surely means that you're another step closer to getting used to your new family life.What you're feeling is perfectly normal and you are still doing so well. I hope you feel the love and courage being sent to you from your surrogacy family around the world.
ReplyDeleteKeep going B, love Anna xx
It does sound scary. It sounds scary to all of us. I'm sure there will be some googling today by many of us. Hopefully it is treatable by medication, and everything will fall into place once they have him on the proper doses. Sorry to hear about Miss Scarlett, babies with upper respiratory things are such little troopers, but so little we can do to help them. Are you getting ANY sleep?
ReplyDeleteHope princess gets better soon and lots of love to master cheeks!!!
ReplyDeleteBecause labels are scary and make it all the more real.
ReplyDeleteThis from someone who's been dealing with a probable epilepsy diagnosis myself for the last 2 years. Of course, for me it wasn't something I had any clue about until I was 28. And while my Doctors think I have it, and I think I have it, they don't have enough evidence to actually make it concrete - which leaves me in no man's land. Which I think is probably the only thing worse than having a proper label, heh.
I came across your blog a couple of weeks ago, and have been following ever since. I really admire the way you've handled everything. Sending best wishes to you and yours.
Melanie
Names help. They are also scary because names remind us of OLD traditions about what diseases used to be like and how people with them were shunned. The help they provide is in KNOWING which gives understanding of what is and is not happening. Names also give a source for finding out more and finding out about medical advances and the newest research.
ReplyDeleteI believe you and Duane will face factual information, stare down false rumors, and move forward with medical help.
Much sympathy for Ms. Princess.... I always hate the flu and suspect she agrees.
Hugs and support to you and Duane. And take some time with JUST you two this weekend!
Old ca Grandmother.
Epilepsy is scary to see but it is totally treatable in most cases. Once they find correct doses and medicines for him, he will be a totaly different baby. Many hugs to you! Many many many hugs
ReplyDeleteMany, many hugs to you...from someone who has been on the receiving end of several scary conditions and labels about my own children.
ReplyDeleteHey Bern and Duane, It sounds like your treating doctors are handling this well and getting to the bottom of Master Cheeks health issues. It does sound scary but at least with a diagnosis of epilepsy a treatment plan can be developed. Epilepsy is much more treatable these days. I am glad you are home and can support each other. Bern, you are Mother of the Decade in my book......take care xxx
ReplyDelete-Sometimes names can be scary.
ReplyDelete-Then you think and research and they still seem scary.
-Then you live through some time, get some experience under your belt and realize all the other things it could have been, and you realize it's not so scary.
Remember: Names means you can start treatment that is designed specifically for that problem.
I'm hoping that they will find medication that works well for him and I'm hoping you will be able to get to the point where it is not so scary soon. Wishing Scarlett a speedy recovery as well.
Hugs.
Bernadette, Simon and I think about you all the time. I hope you have got your medical records from India? Our girls are all doing fine ATM. 6 weeks on Tuesday.
ReplyDeleteBernadette - Simon and I think about you guys all the time. Sorry to hear about your Scarlet and hoping for a speedy recovery. I hope you have your Indian medical records? Our girls are all fine, home safe and sound. They will be 6 weeks on Tuesday.
ReplyDeleteThe silver lining here is that you're getting answers and I agree with everyone's comments above, epilepsy is treatable and with the right meds, MC will be doing better. Positive thoughts and big hugs...
ReplyDeleteI think that some of our community members have hit the nail right on the head. From this place you can move forward.
ReplyDeleteLove and hugs to you and the babies!
Even when you know something deep inside, it is so so difficult sometimes to hear it named out loud. So many of us are thinking of you as you work to find answers and accept MC's condition. Really hoping they can find a way to get his seizure activity under control very soon. I am so glad you are back in the U.S. at a leading center to give him the best options possible.
ReplyDeleteMo
Bernadette, I don't know if you remember me from RESOLVE, but Barb told me about your blog and I've been reading for a couple of months now. My heart goes out to you in a hundred ways for your trials and your courage. As I read this post, I thought of a quotation that I used as a mantra when I was going through infertility. I used to worry so much about how my cycle was going, analyzing every intonation the doctor used, etc. Then I found this quotation by James Baldwin:
ReplyDelete"No one can possibly know what is about to happen. It is happening each time, for the first time, for the only time."
In my interpretation, this means that no one can tell you right now what the possibilities are or aren't for Hayden. He has never existed before, and his future cannot be known. Anything is possible. And, he has you as his champion. That's huge.
Your comments about what is "normal for Hayden" sounded like a similar sentiment ... so I just wanted to offer this to you and your family. I send wishes for strength and peace.
Lee Collins
I found your blog a few weeks ago and have been reading through the archives.
ReplyDeleteMy younger nephew, Reu, started having seizures when he was about 18 months old. Long testing eventually showed that he has an extremely rare genetic mutation that causes his seizures, and it's likely he'll never outgrow his epilepsy. In the last ~2 years he's been on various different trials of medications, but in the last month or so, they've found a combination that means he's down to only 2-3 seizures a week instead of that many or more per day. In between, he's a happy-go-lucky, friendly, outgoing 3.5 year year old, and a real sweetheart.
It's hard, it's rough, but there's always hope. Good luck to you and your son.