Tuesday, December 29, 2009

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...

Sunday, December 6, 2009

Starting ACTH

It's been a while since I've updated this blog and alot has happened.

The meds that Yusef was on for the infantile spasms just simply aren't working. His last two EEG's continued to show frequent seizure activity. Developmentally we are at a total standstill which is the most frustrating thing that has gone on. I'd say my 10 month old is still at a 3 month level, even regressing since this all began 6 months ago.

So two and a half weeks ago, we started the ACTH treatments. ACTH or adrenocorticotropic hormone is a treatment which is sometimes effectivce with IS for reasons not understood by medical science. The cost of the six week treatment is well over 100,000 dollars. No that is not a typo. It's craaazy. Apparently, Questor is the only drug company that manufactures it, and since it used to treat a rare condition, they can charge whatever they want! Well yay, for them, and thank God, thank God, we have decent prescription coverage.

These two vials costs $93,000, and there's more to come

It's quite stressfull to even have these vials in my house. I'm deathly afraid there's going to be a fire or something. Of course, even more stressfull is jabbing my sweet boy in the leg with a needle every morning.

The treatment is a six week course. We started at the highest dose 3 weeks ago, and are tapering down each week. The first week Yusef did great. He immediately became more alert and began cooing and gooing like never before. He had a light in his eye. He looked us in the face and truly studied us for what seemed like the first time. Then last week the insidious seizures started again, and he again became like a zombie, spaced out, seemingly oblivious to the world. Since then, the seizures have come and gone. One day, I'll see seizures, and the next he'll be back again, alert. He still hasn't smiled for what has seems like months. He's still never laughed.

ACTH is still considered the gold standard in treating IS, but there are still some treatment options that I'm quite interested in, namely the ketogenic diet which has shown to be as effective in some studies. There is also a drug called vigabatrin. I'm also seriously thinking about taking him to Children's Mercy in KC to get a second opinion as I fell like this Dr. has been dragging his feet with this. This has gone on now for 5 months! Why did we drag our feet so long before starting the ACTH and why did he never mention this ketogenic diet? I'm still learning about this, but I know that it will be the next step if this treatment doesn't work. I feel in my heart, it's not going to. And now I feel trapped since we're right in the middle of the ACTH and I feel guilty because I should have taken him for another opinion sooner when we weren't seeing results earlier in this journey. Then again, this could all be the angry rantings of a desperate mother.

This has been a heartwrenching experience and it isn't over yet. In some ways it feels like getting the diagnosis all over again, the same fears and grief, and in between glimmers of hope.

Saturday, November 7, 2009

Make a Little Boy's Last Christmas Special

This message came from a fellow blogger Salma whose blog can be found here.
Please take the time to make a little boy's day!

I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.

Please let's make this little warrior's wish come true.

Send cards to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, Mi 48178

Lets see how many cards
we can get together for this brave little boy.

Thank You and God Bless.

Please also consider posting this very urgent message to your blogs.

Wednesday, October 28, 2009

I just wanted to share this site A Little Extra by Connie Wenk. She takes the most extraordinary pictures of children with DS. It's such a gift to have these children in our lives and she says it so beautifully in her pictures.

Here's one:

We've Got Ourselves a Big Eater

I started feeding Yusef solid's a couple monthes back. I wanted to get him into it slowly due to his seizures and just generally being in a fog all the time. I have to admit part of it was sheer laziness on my part as feeding babies has got to be one of the most monotomous tasks I can think of. I'm always so glad when they can start feeding themselves.

But a couple weeks back I realized that this is the one thing I can control and that we can work on. To my delight, it didn't take any work at all as it seems he's just a natural eater. In fact he loves to eat anything and everything. Three meals a day, he sits down with us and indulges in rice cereal and prunes or oatmeal and peaches. So here we are, officially in the club of big boy eaters!

Thursday, October 15, 2009

Yusef's First Camping Trip

My Dad's been in town all week, and as is our usual fall tradition, we went camping out on the lake. Before I had children, we would rough it in a tent and sleeping bag, etc, but nowadays we rent a cabin. It's complete with all the modern ammenities and creature comforts which makes camping with young children much more enjoyable and certainly easier.

The drive out is a beautiful one. I've often heard people say that Kansas is so boring and flat, but I find it beautiful. Sure, it doesn't have the majesty of the Rocky's or the wonders of Yosemite, but it does have a very real and subtle beauty. My favorite part of my state is the flint hills--a unique place that is the home to the nations largest remaining tract of tallgrass prairie. I'm a prairie girl alright. I just love it. These pics don't do it justice by any means.

Apparently deer really like the prairie as well because we hit one on the way in! Thank God my dad was driving and didn't panic and no one got hurt. Well, no humans got hurt, the dear deer didn't fair as well. The front left hand side of the van sustained considerable damage, but amazingly after filing a police report for insurance purposes, we managed to drive out of there and onto the lake!
The van

Actual deer hair in the rim of the tire. I cannot believe it didn't blow.

It was a cold and dreary day, but as soon as we got to camp we made a campfire of course!

Our cabin and the view off the front porch

We went to the playground and let the kids run off some energy.

Here's Yusef with Mommy all bundled up and cuddling in his sling.

Later, it was time for some serious hot dog roasting

And after dark, s'more makin' of course. I like my marshmallows nice and dark, like they literally have to catch on fire to be considered done!

The kids having a blast with their glow sticks

I would have loved to have been able to stay more than just one night, but we had to get back to reality, school, and life. So that's it. Our annual family camping trip, and Yusef's first, with many more to come, inshallah.

Friday, October 9, 2009

First the Good News

The Good News:
Somaya is doing much better. We spent 6 hours in the ER Friday night getting IV antibiotics. They also gave her some morphine because she was in so much pain and Tylenol for the fever. The doctor said she could be admitted to give her another dose of antibiotics in 24 hours or we could go home with our current oral antibiotics and some Lortab. I didn't want to spend any more time in the hospital so I opted for going home and thankfully she's doing fine now--back to her old feisty self.

The Bad News:
Yusef's EEG still shows frequent seizure activity. We saw the neurologist on Monday and he thinks it's definitely a good sign that we're not seeing clinical seizures so he wants to give it 6 more weeks and redo the EEG. If at this time, Yusef is still showing seizure activity, we'll go ahead with the ACTH treatments. This also explains why we're not seeing any progression in his milestones and the limited interaction.

ACTH (adrenocorticotropic hormone) is generally a very effective treatment for infantile spasms. However, it comes with a whole host of scary side effects. Everything from irritability, to gastrointestinal bleeding, to sepsis.

The Dr. said these would be given weekly, and that I could do these at home. He knows I'm a nurse and I have worked with him before in the professional setting. I'm assuming Yusef will need a PICC line, which again, I've cared for many, many times.

Kudos to all you Mom's out there who've had to care for your little ones at home with NO medical training. I remember when Zainah had her Hickman and later a PICC line, how stressful it was caring for them, even with lots and lots of experience. I can't even imagine how intimidating it would be for someone learning everything for the first time.

Part of me just wants to get this over with and go ahead with the treatments. I want to see my my boy advancing and working on all his milestones again. Sigh. Patience is a virtue I guess. . .

Oh yeah, and now Zainah is sick with stomach cramps, vomiting, and fevers. Blah. I mean, can we catch a break with these kids. Sometimes, you just gotta laugh so you don't cry.

Friday, October 2, 2009

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...

Wednesday, September 23, 2009

First Eid

This past Sunday we celebrated the Eid al Fitr. Muslims have two main holidays, the Eid al Fitr and the Eid al Adha. The Eid al Fitr follows the holy month of Ramadan, and the Eid al Aldha follows the haj, or t he pilgramage to Mecca. On these holidays, the entire community gets together in the morning for a prayer which is followed by lots of feasting, gathering, and gift giving. It's an especially fun day for children, not unlike Christmas for my Christian brothers and sisters.

This was Yusef's first Eid! He didn't seem to have an opinion of it one way or another, and spent a great deal of the day sleeping. Oh, well someday, he'll look forward to it with glee and excitement like my other kids.

Yusef on Eid morning, getting ready to leave for the prayer

Yusef and Mama

Family picture

Eid Mubarek everyone!

Friday, September 11, 2009

We're Doin Our First Buddy Walk!

I finally got our team registered today! If anyone is interested in donating here is our team page. I'm so excited!

For Those With a Prenatal Diagnosis of Down Sydrome

I have more than once noticed that people have made their way to my blogs while googling termination and Down syndrome. If you have found your way to my blog and find yourself with a new and scary diagnosis, I want you to know that there are thousands of women that have been in the same place you find yourself in now.

All of us in one way or another found out our child has Down syndrome, rather it be a prenatal diagnosis or after birth. We all understand the feelings of grief, the fear; And on the other side, we all share the intense feelings of love we have for our children.

Please give your chld a chance at life.

You will love this child with an absolutly pure and overwhelming conviction, one that you might not ever have imagined. This child will teach you more about compassion and humanity than you ever thought possible. If you are a religious person, this child will increase your faith in God and his perfect plan for you.

If you find yourself here in your darkest hours, please take some time to link to the blogs on my sidebars. There you will find families and children living normal lives, doing normal things. You will also find extraordinary people doing extraordinary things.

You might find some little ones with health problems. There you will find an unwavering and loyal support group. You will more often find kids perfectly healthy doing all the things that children do.

You will find children with Down syndrome lighting up the world around them.

So if you find yourself here, and you think that you cannot bear it, you can. Be strong, come to us who are on the other side. We'll support you when you need it.

Give your child a chance.

This child is a miracle. With time you will be able to see through your tears and be honored to witness the miracle that I know.

Friday, August 28, 2009

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.

Monday, August 17, 2009

A Day in the Life

From my other blog...

Today was Nathan's first day of second grade! He goes to a magnet school whose focus is on environmental education. They get to do all kinds of cool outdoor projects and even have camping trips.
Here's him in the car as we were leaving:

I forgot to take the camera in with us as we got him settled in his classroom. Oh well, it would have just embarrass him anyway.

We had a nice downpour as I was driving back

Back to the house and the other little ones were up and ready for breakfast

Yusef had his as well. He's getting pretty good at holding his bottle!

Next is bath time

All cleaned up and ready to run our errand to Wally World for some supplies

This is how we roll

Back to the house for Dhuhr

I do a little decorating with some cheap stuff I bought at Walmart

Pleased with the results

Lunch and now time for a little cleaning

Gotta have my coffee and Mp3 player for this. I download free audiobooks from my local library's website. I'm currently listening to a garden variety serial killer suspense type thriller. It makes the chores so much more fun!

Picking Nathan up at the bus stop

Cookin' up some dinner for the family. I made BBQ chicken tostadas ala Weight Watchers from this recipe. It was really good and something different

Here's my plate. Yummy and not too calorically disastrous

This is the point in the evening where all hell breaks loose as usual. Cleaning up the dinner mess, squabbling cranky children, getting them ready for bed. The usual. Poor little Yusef had another seizure at this time as well. It's so stressful seeing this happen to your child.

Time for

I finally got them off to bed by 8:30 when a thunderstorm moves in and they all end up congregating in my bed. I love Kansas thunderstorms, but they don't go well with little ones. So I made myself some green tea with lemon and ginseng and enjoyed the storm

Finally got them off to bed and I'm curling up with my hero, Frederick Douglass.

Nighty Night all...

Alhumdu lillahi rabbi al Aalameen for blessing me with another day. Ameen.

Sunday, August 16, 2009

Neurologists appointment and increasing meds

We had our first visit with the neurologist Thursday. He seemed extremely knowledgable albeit a little quirky. I've actually worked with him before at the hospital, so I was prepared for his eccentricities. Little Yusef gave him a big ol grin when he was examining him, so looks like Yusef doesn't mind his personalilty one bit.

Unfortunately, Yusef is still having seizures, although fewer. We've gone up on the meds twice now, and he's still having about two episodes a day. We went up to 2 ml's yesterday, which is double his original dose. Yesterday he had two seizures, so far today, none. We'll see how today goes and if he has any seizures, I'm to call the doc tomorrow. If need be we will add another med to the regiment, and if that doesn't work we will start ACTH treatments. ACTH is a hormone and Yusef would have to be admitted to the hospital for these. It is a hormone naturally produced by the body and has alot of side effects. I'm praying that these other meds will do the trick and we won't have to go that route.

The good news is that Yusef will outgrow these types of seizures (infantile spasms). The Dr. thinks that we're looking at 6-12 months of treatments. In the meantime, it is imperative that we get control over them because they can be damaging to the brain.

I've also noticed that Yusef is so much more fussy since this has all began. After he has a seizure he literally screams bloody murder. It's absolutely heart wrenching and I feel so out of control and powerless.

Monday, August 10, 2009

EEG Results and Starting on Meds

Thank to everyone for your kind comments and prayers! It really means alot to me.

And yes, to no surprise, the EEG showed seizure activity. To tell you truth, I'm mildly relieved, because I know sometimes EEG's will come up negative if the patient doesn't have a seizure at that time, even if they really do have an underlying seizure disorder. I was able to get the EEG done late Friday afternoon and the neurologists office called later that evening to call in a script. It was also nice to know the doc (we haven't actually met him yet, our actual consultation is Thursday) is on the ball and didn't blow us off until Monday.

So we're starting off with Kepra. I'm keeping my fingers crossed it does the trick and we're not having to constantly play with the meds to stop the seizures. I know this is a possibility though.

After I filled the script as I was driving home, I felt some tears come to my eyes. I just love my baby so so much and naturally I'm feeling quite a bit of apprehension.

He's been on the Kepra for 3 days now. It seems to be working! He had two seizures the first day we started it, but none since then. A couple of moms on the DS board at BabyCenter.com mentioned that the meds may make Yusef drowsy or not as active as usual and thereby slowing his development. I can say I've seen some very minute changes. He doesn't seem to smile and engage with me quite as much, although i can still manage to lure out a smile here and there. Apparently this is a common side effect of the meds and not much can be done about it. It's better than the flip side which is continued seizures which would inevitably lead to brain damage.

We're meeting with the neurologist on Thursday so I should know more about the plan and where we go from here. I'm assuming and have been told that he'll most likely want to do an MRI as well to see if there's been any scarring or any other anatomical issues going on.

I'll post more after our appointment on Thursday God willing.

Thursday, August 6, 2009

Infantile Spasms and EI update

First, the good news:

It looks like we'll continue to get our EI services. The organization that provides it now is filing Chapter 11, but will continue all homebased services, all praises to God.

Now, the bad news:

Last night I noticed my little one would tense up and throw his arms up very similar to a startle reflex. This happened in a very repetitive manner for a time lasting approx. 4 minutes. I knew right away this had to be some type of seizure activity. It happened again later in the night and I actually had the presence of mind to videotape part of the episode.

In the mean time I got out my handy dandy "Babies with DS" book and looked up the chapter on epilepsy. It said the most common type of seizure in babies with DS is called an infanile spasm. My husband and I felt our hearts sink as we looked at some videos out there on the internet of kids having infantile spasms and it looked exactly like those our baby had.

Obviously this morning I called my pedi first thing and after seeing the video and examaning him she also felt that was probably what is going on. We'll be getting an EEG, possibly an MRI and an appointment with a neurologist either tomorrow or Monday (prob. Monday).

He's had 3 more episodes over the course of the day (my pedi also knows about those). I feel like I'm on pens and needles waiting for another one to happen. He gets really grumpy and fussy afterwards also. Apparently this type of epilepsy can be quite damaging and sometimes hard to control. Fortunately, at least from what I've read, our kids tend to respond well to the treatments.

From what I was told the treatment for thses types of seizures are ACTH. I don't know much about this. I also think I read that they have to be admitted to the hospital for these treatments but I'm not sure.

Please keep us in your thoughts and prayers.

Saturday, August 1, 2009

First Hair Cut and EI Madness

At the tender age of 5 months I gave Yusef his first hair cut. I didn't get any before shots but as you can see from the previous post it was really quite shaggy. I wish I would have gotten a shot of the back. It was down past his shoulders!

Here's the aftermath. That's alot of hair!

And my new hansome little man.

In other news, it looks like there is a good possibility we are going to lose our EI services. The major organization that provides them here is going bankrupt. They serve about 2600 kids in this area. This just months after they opened a brand new multimillion dollar facility. I'm so upset and dissapointed with them right now.

They've realeased a couple of statements saying that they'll be restructuring and will do everything possible to coninue to help kids. Then just a couple of days later, they said they were going to close a couple of facilities, lay off 70 employees and focus on services for 3-5 year olds.

Needless to say, I'm not putting any faith in the hope that Yusef can continue his therapy with these guys. There are other organizations here but I don't know anything about them. I have the feeling they are all going to see a huge influx of people seeking services. I'm getting on the phone first thing Monday morning to try and figure out where we can get his therapies. Also, I'm going to contact our insurance to see if they'll cover anything if we have to go private. I'm stressin...

Friday, July 24, 2009

Yusef With His New Bumbo Seat

I started sitting Yusef in our old walker that we have. As you can tell he likes it quite a bit...


(someone else had to sneak in the pic)


Reaching out for a toy:


The only problem is I have to stuff a bunch of blankets in around him to support him and put some pillows under his feet. I was mentioning this to his OT and she suggested we get a bumbo seat.
Well it just so happens we have one that my SIL gave us. I really didn't know what it was for at first; I thought it was just some kind of weird looking booster chair or something. I thought he still might be a little small for it, but it's shaped in a way that's really supportive.


Isn't that just the cutest thing. He get's to sit up among the other kids just like a big little man. Eventually, he sometimes kind of leans to the side and then I have to reposition him.


It really good excercise for him. I think it's good to further develop trunk and neck strength. He doesn't seem to tolerate it for more than 30 minutes or so. It's alot of work you know!
And on to other cuteness. Yusef played with his new baby friend Norah today.


Obviously, she wasn't too happy about having her pic taken, and he's wondering what all the commotion is about.


Ahh, all is copacetic again. Aren't they just too adorable? And can you believe how long Yusef's hair is? There's definitely a trip to the barber's in his near future!