We Have a Plan

We've switched Yusef's meds now. We're weaning off the Zonegram and have switched to valproic acid. The plan is to do another round of ACTH if the valproic acid doesn't reduce his seizures.

I have no problem with doing another round of ACTH. Yes there are side effects which include one cranky baby for six weeks. The ACTH helped Yusef so much the first time but now the seizure have slowly creeped into daily life again. The hope is the second time they will stop them completely. Obliterate them. Buh Bye.

So far the valproic acid has reduced them, but they're still around. Unless there's some miraculous turn of events in the next week and a half (I'm supposed to check in with the PA after this time), we'll see just a reduction of the seizures. They'll still be there. Lurking around in my little guy's brain. I want them gone and plan on being extremely firm about doing the ACTH again when we check back in.

If we do go with the ACTH and that doesn't work the second time, then we'll start the ketogenic diet. I've like the idea of this diet for quite some time, but it does require a 5 day hospital stay in it's start, and is not nutritionally complete which means drawing labs regularly to check electrolytes. It also is usually tried for 2-3 months before it is deemed either a success or a failure. So in other words, if it doesn't work then we'll be looking at that time wasted when we could have been doing the ACTH which has helped in the past.

So I'll stick with what I know will work at this point.

We also have an appointment next week with another neurologist to get a second opinion. If I really like this guy, I might take our care there since I haven't been that happy with the way our care has progressed thus far. I know Dr.'s aren't generally keen on stepping on each other's feet and "stealing" away patients from one another, so we'll see what he says.

I have to do what's best for Yusef.

In other health care news, Zainah had a follow up chest xray for the "spots" on her lung. It looked clear, but to be safe we're doing another CT tomorrow. So throw up a prayer to Allah, God, Jesus, Krishna, or the diety of your choice, or just send some positive thoughts our way that tomorrow goes well.

Calling All You Armchair Acitivists

I'm not exactly what you would call an activist when it comes to the cause of DS. I'm not particularly involved in any of the national groups that advocate for our kids. This little blog is the primary way I like to get the word out on how much my son is loved and adored, and how "normal" our lives are...full of joy and worry and beauty and tears. A Beautiful Life, hence the name I gave to this blog.

However, sometimes one has to step up and do what's right.

The NDSC recently had a photo contest in which many parents posted their sweet child's pictures in an attempt to show how similar individuals with DS are to their typical peers.

Well some sick fuck decided it would be funny to post these images on a forum and use them in demeaning and sometimes pornographic ways. I've rarely seen such cruelty and utter disregard for humanity in action.

Earlier today when it was realized that these photos were being used in an inappropriate manner the content was taken down when the online DS community became abuzz with what was going on and legal avenues were being explored.

Here is Christie's post on the subject. Her sweet boy was one of those posted on this twisted site. She has some links to the mods of this forum. Kindly visit her blog and take a minute to send out some emails and support her as she seeks legal counsel for misappropriation.

The original posters on the NSDC site have also been taken down. I'm not sure how I feel about this. Any images we post on the internet can be used for unsavory and just plain sick purposes. I'm a Muslim woman in a headscarf--a figure that has often been abused by hate sites and pornographic sites alike. I have a child with DS, which apparently makes him a target for cruelty and hate as well. However, that doesn't mean I will back down and hide. EVER. We shouldn't have to hide out of fear.

We're here and we deserve and demand respect. We won't hide. And we're not going to let you bully us into submission.

He's One Now But I Don't Feel Like Celebrating

Yusef turned one this past week. It’s been an extremely emotional time for me and I admit I’ve been depressed to the point of tears at times. I sometimes feel that I only post negative things on this blog, a fact that I hate. I also want to be an advocate for individuals with Down syndrome and I never want anyone visiting this blog to get the wrong idea. I don’t want to propogate the stereotype of children with DS suffering or their families being paralyzed with grief and medical issues. At the same time, I can’t just write out a lie.

This year has been difficult. However, much of the difficulties have had nothing to do with Ds, but rather his debilitating form of epilepsy called infantile spasms that have wreaked havoc on my every waking hour for the last eight months.
Children with Down syndrome no more likely to suffer from seizures than their typical peers. However, for those children that do have a seizure disorder, the likelihood of infantile spams being the type of epilepic disorder is much higher in children with DS than in the general population. Indeed, one of the risk factors for infantile spasms is chromosomal abnormalities.

The information out there on the internet regarding infantile spasms is incredibly scary and depressing. They are very difficult seizures to control and many of the articles will say that the prognosis is poor with this type of epilepsy. This means that most cases are intractable to current medicines and treatments and most children will have permanent developmental and cognitive delays. Of course, then I have to factor in Down syndrome, and well, I just feel bleak about my child's future and level of functioning he will be able to obtain.

While we have seen a reduction in seizure activity after our course of ACTH, and an increase in development, my Yusef has not had anywhere close to a total halt to these seizures. It’s very common to see him have at least a couple “spasms” i.e. seizures every day. Usually with no warning. If he happens to be sitting up in his excersaucer, he’ll have what is called a head drop meaning he loses all control of the muscles in his head and trunk and he’ll literally do a face plant on top of his tray and any toys that might be sitting there. This is, to say the least, traumatic to everyone involved.

My son is extremely delayed at this point. At one year old I see other babies with DS sitting, creeping, some even crawling, starting to talk or sign. Yusef is nowhere near sitting. He still doesn’t seem to socialize and smile as much as I would like to see. He’s only recently started rolling around consistently. I know people will say he’ll reach his milestones in his own time, but this is ridiculous. And so now I’m angry.

I’m angry at the neurologist for not being nearly aggressive enough with this. He just seems to blow everything off and want to continue the current treatment plan that we’re on which is not working! He is taking a wait and see approach and this is my child’s life, his future we’re talking about.

So my husband and I have talked about taking him to somewhere out of community to get another opinion, perhaps to Kansas City. As it turns out there is a second, brand new, pediatric neurologist in our community now! Our primary care pedi is in the process of setting up an appointment with him now and I should hear from them tomorrow.

There is still some hope. There are a couple different options that are promising. One is a med called Vigabatrin and the other is the ketogenic diet. Neither of which has our neurologist even mentioned. Not once. It took 5 months for him to even be on board with the ACTH which is a first line treatment, the gold standard really. I am done with this guy.

I’m pissed at myself for letting things go on for this long. I just kept thinking it would get better. The Zonegram helped which gave me hope. The ACTH helped quite a bit more which gave me more hope. But neither are enough. I want these seizures gone. Completely. And if I can’t have that, then at least I want the peace of mind in knowing that I did absolutely everything possible and that it is simply out of my hands.

My Thoughts About Today

This morning I made a post on my other blog about the "R" word. As I'm sure most of the bloggers within the Down syndrome community know today is the day the Special Olympics have set aside to raise awareness about that word.

To me the use of the word is more than just semantics or popular culture. It's an attitude our society has about people with cognitive and other disabilities. It's a reality that parents and individuals effected by a loved on with special needs have to face on a daily basis: Our children and loved one's are marginalized and laughed at by the society we live in.

This fact hurts me beyond all else when I look at my son. When I think of his extra chromosome, the one that resides in every cell in his body, the one that gives him his almond shaped wide set eyes and his short little legs propped up with the cutest little feet, society is what hurts me. Not that chromosome. It's the judgement and exclusion from this society that my child was born into.

Frankly, I don't know if we'll ever see attitudes change, at least in my or my son's lifetime. I guess all I can do is strive to change the attitudes of the people around me, the few souls that I collide with in my own little microcosm. I can only strive to give my child the best, expect great things from him, demand respect and inclusion from the people around him, try to change hearts one at a time.

That's the least I can do for you Yusef. I know you will do the same.

Worried

We just got back from a little getaway up to Kansas City. The hubs works so much and runs two of his own businesses so it's extremely rare that he can get away for any meaningful vacation time. Actually, it's a point of contention between us, but I won't get into that here.

Anyway, we all had a great time and the kids thought the motel room which was really just a really crummy, run down Super 8 was the greatest thing ever. Yes, we really need to get them out more.

I also got a new digital camera because I was wondering why my pics always come out so blurry and then I realized the old one literally only has 3 mega pixels so I decided it was high time for an upgrade. I bought one with 10 mega pixels in excellent used condition and got quite a deal. It also has a decent amount of zoom power on it which I really wanted so I can catch the kids in the act without them realizing I have the camera out because then they usually get shy or try to pose for the camera and I want to catch them in their natural cuteness. The only thing is it didn't come with the USB cable and come to find out it is a 2.o cable which is different than the ones I have. I actually had no idea there was differend types of USB's. So now I have to buy that. And then, I promise, promise, promise I will post some pics.

So anyway, the last 3 weeks have been stressful to say the least. First we were all sick. Then Yusef was in the hospital overnight with RSV. He's doing great now but then I got sick and wanted felt like I was going to die and turned out to be strep throat which hubby promptly got. Now see, this is why husband and wives shouldn't be kissing! Anyway, a course of antibiotics and prednisone later, I actually feel human again. Thankfully, the kids somehow managed not to get it.

In the midst of all this, Zainah had also been sick and had this nasty cough that just would not go away. You may or may not know Zainah is a cancer survivor and is in remission so to speak from a tumor that was found on her kidney. She had the entire kidney removed and went through chemo. So anyway, she had one of her routine CT scans and the next day the oncologist called me and said something funny showed up on one of her lungs and the radiologist felt it was either a mass or a pneumonia. I didn't think to ask why the hell couldn't the radiologist tell the difference. This was at the exact time hubby had her at the doctor's office for the cough. So now she's on antibiotics for what we presume is a pneumonia but the seeds of fear and panic have sprouted.

Cancer is the devil. It is like a dark shadow that follows you even to your dreams and never goes away. It's the bogeyman that can pop up at any time. I hate it. Leukemia is one of my worst fears for Yusef. We all know that in life there are no guarantees and horrible things can happen. We put it out of our minds so we can function and stay sane. But when the fear rubs up against you, into your pores, clinging, it's hard. Real hard.

People sometimes tell me I'm so strong, they just don't know how I do it and I always chuckle; Because really, does a Mom have any other choice. I'd do anything for my children. Anything. For now I just hold them tight, soak in their smell, revel in the sounds of their laughter, bask in the warmth of their little bodies...feel. Just feel them. And love them.

Back to ourselves

Just a quick note and update. We've had our follow up EEG and it is still showing some seizure activity, but it looks "a hundred times better". We've not been able to actually see any of the seizures since the ACTH. While things still aren't perfect (whatever that is), I'm thrilled that I've got my little man back. He seems to have awoken from a daze and is interacting with all of us. We're having so much fun!

Back to the neurologist in 2 months for a follow up.

I'll post some more pictures in the near future, I promise. I've been a horribly lazy blogger lately.

Finishing up the ACTH

We're winding down on the ACTH treatments now. I'm giving the injections every other day this week and Thursday is his last shot!

For much of the course, we've seen really no improvement. In fact, for much of the last 6 weeks, Yusef's seizures and symptoms have actually been worse.

However, this week he's suddenly come out of his fog again and is smiling, cooiing and laughing! Yes, for the first time in his life I've heard his laugh! I can't tell you how happy that makes me; How my heart soars with pride, my own face reflecting his joy.

Right now, I'm cautiously optimistic...