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.

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.

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.

Update on Yusef's Infantile Spasms

It occured to me that I never really gave an update on Yusef's progress on his meds. I'm happy to say that the second med we started seems to have done the trick and he's been seizure free for the last several weeks. He's on Kepra 3 times a day and Zonegram twice a day.

I have noticed that he seems to be a tad more sleepy since this all started and he hasn't progressed at all developmentally. From what I've learned from other mom's this is to be expected and often happens with the IS. In fact, I think it's safe to say, he's even regressed on a lot of his gross motor milestones. He won't roll over like he was before, and rarely ever smiles. He seems to avoid social contact and sometimes refuses to even look at us and interacts rarely. Our therapist seems to think it's a sensory thing caused from the seizures and meds. However, just the other night I was thrilled when I got several sweet smiles out of him!

We've got an appointment Monday with the neurologist and a follow-up EEG--I'll definitely bounce it off of him and see what he says.

Hopefully we'll be actually be able to make it to the appointment since big sis Somaya is fairly ill and might have to be admitted into the hospital for IV anitbiotics. She's suffering from a UTI that doesn't seem to be responding to the meds. Her pedi thinks there is a good possibility it's turned into a kidney infection in which case she'll have to be admitted. We do have vesicoureteral reflux in the females in our family. It's essentially what happens when the urine backs back up from the bladder up the ureter and into the kidney. It can cause chronic infections. Zainah and I both had it. Somaya has never been screened for it since she's never had a UTI before. Right now we're just waiting to see if her fever returns tonight and if it does we're to take her to the ER. Her last dose of ibuprofen was at 2:00 and it's now 6:30 so we'll see what happens here in the next few hours.

Oh yeah, our buddy walk is tomorrow and unless Somaya makes some type of miraculous recovery, I doubt we'll be able to go. I'm really bummed about this. I was so excited. It seems as if every time our local DS chapter has some big event, one of the kids is sick or there's something else going on. Sigh. I dunno, maybe Somaya will be okay. That's what I'm praying for right now--and my sanity--it's been a rough couple of days...

Well the Meds Aren't Exactly Working

Well we're now on the maximum dose of Keppra and Yusef is still having 0-2 seizures a day. I've been in constant communication with the Dr.'s office and he wants us to come in sooner than was originally planned. So Tuesday we'll go in and discuss what he wants us to do.

I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.

I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.

I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.

Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.