Monday, November 28, 2011

Best Toys and Gifts for Special Needs Children

Back in 2006, I wrote a blog post titled, "Best Toys and Gifts for Special Needs Children". Since that time, it's been one of my most popular posts. Last year, I updated it and I thought I might reprint it again. I poured over the toy catalogs and websites looking for those toys that I thought were really good. I was amazed to find that there still wasn't a lot to pick from so I decided to do a few things to make it easier. First, I created a link at the top of my blog for "best toys and gifts" and I've added all of the toys I'll talk about today. I have included pictures and links for each toy along with a description of why I like the toy and how I think the child would use the toy or an explanation of how Dear Son used the toy. Disabled children enjoy many of the same toys that normal kids do however when they play with the toy, they play with it whatever way is easiest for them. In Dear Son's case, he had poor trunk control, couldn't sit up, no use of his arms or hands but liked to play with things with his legs, feet and/or mouth. I have also included a link for all of the toys today to the Amazon website. If you can use this link, I'd appreciate it-it doesn't cost you any more for the toy than going to Amazon directly, but Amazon pays a small referral fee and I use this to help with Dear Son.

Some of the best toys can be found in a few places:

1) The 0-24 month aisle typically has the best selection of toys that severely disabled children can actually do. Most of the toys in this aisle require gross hand or foot movements to activate.
The down side of this aisle is that often disabled children's chronological age exceeds their developmental age so sometimes these items might work for the child however the child is too large or tall for the item.

2) Many stores such as Target or Walmart have these cheap toy aisles where you can get toys for $20 and under. In these aisles, you'll find things like musical keyboards, etc. What is great about these aisles is that these toys are kept "simple" which means they are easier to operate for disabled kids. Often times, toys can be too complex for our kids. In this aisle, you'll find a simple keyboard that plays entire songs when you press one key. In the more expensive aisles, you'll find keyboards where the keys light up to show a child where to press, in hopes of helping them learn to play. Or the keyboard will come with a microphone for the kid to hold and sing. Often times, you don't need any of those things. Simple is best.

3) Be sure to check out Walgreens and drugstores for toys. One of the best toys Dear Son ever owned was this train that I got at Walgreens. It went around a 36 inch round track. I set the train and tracks on the family room coffee table and he would lean on the table and use his arm to knock the train off it's track. Then he would laugh. He loved working hard to get his arm over enough to knock the train off. I wished I could have had a tunnel for the train too; he would have enjoyed that. I tried to purchased nicer trains after that but the Lionel ones didn't work as well for Dear Son-the track was too sensitive and the train kept coming off. With the Walgreen's train, Dear Son could be a little rougher and knock into the table and the train would keep moving.

4) Amazon-It's often hard to get out and shop with a disabled child so it's easier just to shop online with Amazon and have it delivered to your door.

Without further delay, here are toys that I recommend. For your convenience, I attached a link to Amazon and have also listed the current price of the toy as of today.

I can't say enough good things about this product. This is a great product for special needs children who have poor arm/hand control or poor trunk control. They can knock the pins over several ways-with their hands, their head, their arms or by bumping the table. My son couldn't roll the ball but loved knocking them down by the ways I described. He loved the music it played and got such a kick out of things crashing. In addition, it was a great way to help him learn to use his hands/arms in occupational therapy by knocking the pins down.

Musical Hands Mat $39.95
My son used a musical mat similar to this when he was a baby and learning to roll over. The physical therapist would lie my son on the mat and then help him roll over. As the child rolls over, the music is their reward thus helping them work on rolling over. This mat allows you to set it up to hear each note or to hear complete songs. When babies can't move at all, you want a maximum reward for a small movement, meaning you want to activate the music with the slightest movement. I don't think they'll use it like the child shows in the photo, meaning placing their hand on it but rather as a tool to help them learn to roll over.

Fisher-Price Precious Planet Kick and Play PianoFrom Fisher-Price $29.99

This toy would be great for a child who had good foot/leg control but limited hand control. It would encourage them to move their feet. Also, if placed in their crib, or even on the floor, it would be easy to activate with the slightest movement.

Vtech Little Smart First Words Plus Toy From vtech

Five stars for this toy! I used this toy when my son was very small and I wasn't sure if he even knew what was going on. I would hit the Mama button and after a while, he was able to find that button and hit it. He was able to learn where the Mama button was and also some of the other buttons. This was great because he couldn't speak. I did work with him on this toy every day so it wasn't like he learned it by himself. When he pushed on the buttons, he did it with his mouth/chin, not his hands (Dear Son didn't have any use of his hands/fingers.)

Here are two examples of these bounce back dolls. The base is filled with sand and the toy is made of vinyl.

Rocket USA Bozo Bop Bag $16.99From Rocket USA

This product is great for a child who can't sit up but can use his legs. They can lay on the floor and use their legs to kick the Bozo down and it bounces back up. It's important to remember that special needs kids need ways to release energy just like regular kids do. My Dear Son didn't have use of his hands or arms but his legs and feet worked well. He loved this. The other reason this is good is because as they are kicking and moving their legs, they are strengthening their core which is great for kids with low trunk control or for kids who can't walk. Any time you can help them increase their core muscles, it will help them for walking.

Rocket USA 46 Inch Bam Bam Bop Bag Obama $34.98From Rocket USA

See Bozo review for comments.

Easy-Twist Play Tent House: Premium JUMBO Size Six Sided Hexagon $38.60From eWonderWorld

This toy is great if your child can't sit up. My son had no trunk control but good use of his legs. He loved to lie down in the ball pit and take his legs and press down on the sides of the tent to try to knock it over. Often times, he'd play and then get tired and liked to fall asleep in there with balls on him of course! This ball pit is similar to the one he had and he was able to lie on his back in there and not choke on anything. I would not recommend lying a child who can't roll over face down in there. I never did! That being said, I believe it to be safe or I wouldn't recommend it. This was one of my son's favorite toys. **You need to order balls to go in here! 200 Plastic Pit Balls for Play Tents: 4 Colors - Red, Yellow, Green, Blue $42.60From eWonderWorld

These are the balls to go in the ball pit.

Alex Ready, Set, Go! Red Trike $49.99 on sale (Regular Price $199.99) From Alex Toys

Love this trike! Oh, how I wish they had something like this when Dear Son was young! I like the fact that it has a tall back, has seatbelts and straps, has a umbrella to protect against the sun and has a handle to push them. I think this would be a five star toy! Great for a child with poor trunk control but legs/feet that move.

Playskool Chuck My Talking Truck $31.58 From Playskool

Dear Son loved Chuck the Talking Truck, especially when he crashed into the wall or something. It's been upgraded since then and Chuck "comes" when you call him, meaning it's voice activated. Regardless, I think this would encourage vocalizations of some kind with the kids. Even if your child couldn't vocalize, you could call the truck.

Photo of Dear Son listening to, "Twas the Night Before Christmas Story" by Mr. Christmas.

Mr. Christmas Winter Wonderland Village Christmas $55.60

This is the item that I ordered for Dear Son this Christmas. It's a train that goes around the village which is comprised of a church, townhouse and Christmas tree. It plays 15 Christmas carols and 15 year round classics. This also comes with an A/C adapter. This items typically retails for $80 or more however I found the best price at Amazon. The A/C adapter can drive up the price a bit on these products however it's really great. Dear Son listens to these so much that I'd have to replace the batteries constantly so the A/C adapter is appreciated. This item is fairly small, only 10.75 inches wide which will be perfect for his nightstand since he has to lie down a lot since he can't sit very long. Also, he loves trains so this product will be perfect for him. He'll love to watch that train go round and round and the music will be very soothing. One thing I personally like about Mr. Christmas products is that the music is really nice and doesn't get on your nerves after hours of non-stop use. As with all Mr. Christmas products, they come with a volume control.

Mr. Christmas Symphony Surprise
My son loved this item. Mr. Christmas makes high quality musical items that my son would watch for hours. What's great about Mr. Christmas musical items, versus other musical products, is that they have a volume control and the sound quality of the music is good. Cheaper musical items have poor sound quality or the volume control is really loud and scares the kids or is annoying. Mr. Christmas items have been a favorite of my son's for years. While this one is currently unavailable on Amazon, I have purchased Mr. Christmas musical toys at Target, American Sales or home improvement stores. Each year, Mr. Christmas develops new musical items. You can check the Mr. Christmas website and then locate a retailer from there. If I recall, that’s how I located the Mr. Christmas Symphony Surprise; we got it at Menards for $79.99.

Child's Rocking Chair - Espresso Brown Finish $55.99From Table & Chairs

Child's 2-Slat Rocking Chair – Red $47.78 From Kid Kraft

Angel Line Country Adult Rocker $137.49From Angel Line

My son had poor trunk control and no use of his arms and hands, was wheelchair bound but had good use of his legs and feet. He loved using a rocking chair. The rocking chair gave him the freedom to move around the room and offered support. He would sit in the chair and scoot the chair by moving his feet. The rocking chair helped him practice his balance by constantly working his torso. What is important is that you need the back of the chair to be tall enough to support their back and their head. The top of the child's head should be even with the top piece on the back of the chair since they need head support. You can not leave a child unattended in this chair nor use it near stairs obviously. My son loved to sit in it and scoot over to the window, lean his head on the window and look out. There are many wooden rocking chairs to pick from on Amazon so be sure to check them out and get the right height.

Radio Flyer Pathfinder Wagon Red From Radio Flyer $59.54

My son had poor trunk control and was wheelchair bound. He loved the red flyer wagon and this one is great because it has a taller back which would provide support for kids with poor trunk control. It also comes with a seatbelt. I walked my son every night in his wagon and he enjoyed it more than walks in his wheelchair. You want to make sure that their head is supported by the backrest. I've read some comments on turning and I don't know about that. When my son was small we had the Red Flyer with the wooden sides. I would think you should be o.k. I would recommend the umbrella for days when you want to take a special needs child outside. Often times, they can't wear sunglasses or they fall off so an umbrella would make it easier on them especially if they can't move their head to keep their eyes out of the sun.

Radio Flyer Umbrella Accessory $17.82 From Radio Flyer

You may want to consider this accessory to add on to the wagon. If your child is special needs, they may not want to wear sunglasses or may not have enough head control to keep their eyes out of the sun. Also, on really hot days, you want to keep them from getting sunburned so this is a great idea. I have to wonder if you might also be able to clip this umbrella to their wheelchair.

Elmo Farm Fun Video Play-A-Sound $17.95From PIL

I like this book for several reasons. First, Dear Son loved it when I read books that had some sound for the different animals or characters. From a developmental standpoint, I liked it because he soon learned to "anticipate" when the sound was coming in the story, especially for sounds he liked. That helped me understand what information he was processing in his head. This book goes a step beyond that and not only gives the sound of a horse galloping but shows the horse galloping on the LCD screen. Often times it's helpful for children with disabilities to learn new information when they get information from different senses; in this case, they can "hear" the horse and "see" the horse. I'd recommend this book or other books that are "press and play" so to speak, even if they don't have the LCD screen.

Baby Einstein Press and Play Pal Toy, Panda $34.98 From Baby Einstein

This toy is similar to a toy my son loved. By pressing the hands or feet of the toy, different instruments are activated. My son had no use of his hands but I imagine he would press on the toy with his feet or bite on it with his mouth. You would soon learn which sounds are pleasing or interesting to your child. Also, the music calms them. My son had a similar toy that he used at bedtime and he pressed it often as a way to soothe himself to sleep or when he had seizures.

Cat-One of the best things Dear Son really enjoys is our cat. A cat makes a great pet for a severely disabled child who can’t walk or move much because the cat is active and can do things that will make the kids laugh. The reason I would choose a cat over a dog is simple. With a child in a wheelchair, it’s often too hard to walk a dog with the child or there are many times when you can’t leave the child in the house to go out and walk the dog.

When choosing a cat, I referred to the book ASPCA-The American Society for Prevention of Cruelty to Animals to help me find a cat that met our needs. I looked for a cat that was: 1) good with kids 2) lap cat 3) liked to play.

To this day, Dear Son loves our cat. The cat meows when he wants Dear Son to pet him. I lift the cat up to Dear Son’s bed and then take Dear Son’s hand to pet the cat. The cat kisses (sniffs) Dear Son. The cat also loves to sit on the armrest of Dear Son’s wheelchair before and after school. The cat also loves Dear Son’s art projects from school. He likes art projects with pipe cleaners (now called “fuzzy sticks”, lol). Dear Son gets a kick out of the cat playing with his projects.
Original Slinky $6.87
by Poof Slinky

Plastic Slinky (Colors May Vary) $6.82
by Slinky

Dear Son's occupational therapist recommended a slinky and he loved it. What's great about a slinky for disabled kids is that it doesn't require much movement from the child to get the slinky moving. If a child has difficulty moving or controlling their arm, this is perfect for them.

Stocking Stuffers

Veggie Tales Silly Songs Brush-a-long Musical Toothbrush $3.99 From Veggie Tales

This musical toothbrush runs for 2 minutes-the recommended brushing time. What is great about these toothbrushes is that the handle is wider which would make it easier for a child with special needs who has poor hand control to grip. While you may still need to add padding to make it easier, it's a great start. I used these for lab blood draws to, to distract my son while the tech was drawing blood. I liked musical toothbrushes versus other toys because they were slim and easily portable versus larger toys that were musical.

Spider Man Musical Toothbrush $6.95

Great for a stocking stuffer. Music plays for two minutes. Comes in red or blue. Not only is 2 minutes the recommended amount of time to brush your teeth but I took a musical toothbrush along to a blood draw. I held the toothbrush in front of my child and pushed the button; he was distracted by the music and the lab tech was able to draw his blood without any crying!

Sesame Street Finger Paint Bubble Bath $6.95From Sesame Street

Nice stocking stuffer. This is something to make bathtime fun. The way I would use it for my disabled son was to use the paints to write "I Love You" or something on him at bathtime. It's hard when your child can't play with something but you still can do things to make bathtime fun for them.

Hohner Kids Single 5" High Cage Bell, Assorted Colors $4.80From Hohner Kids

Nice stocking stuffer. This price is for one bell. Dear Son liked this type of bell-he would pick it up between his toes and shake it.

These are my absolute best toy/gift ideas for special needs children. I hope this list will help you find some gifts or give you some ideas for your special needs child. In the future, you can click on the store link at the top of my blog and it will link you to any and all gift ideas.

Note: Dear Son is twenty two years old and suffers from seizures, dystonia and is severely delayed as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.

Tuesday, November 22, 2011

Thanksgiving Prep and New Recipes

This year, I am tweeking my Thanksgiving menu a bit. Since it's easier to stay at home and cook versus trying to get out somewhere with Dear Son, I'll be cooking at home for four people. While I am still serving the same favorites that I do every year, I have decided to try two new recipes and change up the turkey. Whatttttttttttt???? You heard that right...the theme this year is an easy, breezy, lip smackin' Thanksgiving meal.

Let's revisit my Thanksgiving menu and talk about the normal preparation. My typical menu goes something like this:

  • Whole Turkey cooked in my Showtime Rotisserie

  • Sweet Potatoes

  • Broccoli

  • Grandma's Homemade Stuffing Recipe

  • Rachael Ray's Apple Crisp with Vanilla Ice Cream
This year, I am doing a few enchancements:

  • Switching to all organic food when possible.

  • Changing from cooking a whole turkey to cooking turkey breasts.

  • Making my own cornbread using the Neely's Honey Cornbread Muffin recipe for my homemade stuffing recipe. Update: I made the Neely's Honey Cornbread recipe tonight and added 1 cup of organic sweet corn off the cob that I got from the farm this summer. I chopped it in the food processor and added it to the wet ingredients. I baked the cornbread in a 13 x 9 pan for 25 minutes (you could go a few minutes less). I knew something really special was going on when the smell of the fresh sweet corn permeated my kitchen while it was baking. After it was done, I tried a small piece with some organic butter. It was amazing. Delicious. Will never make any other cornbread recipe again. Thanks Gina and Pat Neely!

  • Trying a new five star Apple Crisp recipe by the Neely's. I've never tried Pat and Gina Neely's recipes before so I am anxious to see how I like them.
Let's see what this looks like.

  • Instead of cooking a whole turkey, I'll be cooking turkey breasts. After all, that is the part that I like best and truth be told, I don't care for dark meat, the legs, the skin or anything else. I know, I know, a freak of nature, but that's just the way it is. I love turkey breast! Anyway, in this month's House Beautiful Magazine, Tyler Florence talked about cooking turkey breasts as opposed to cooking a whole turkey. In it, he says, "Roasting a whole turkey to get a perfectly cooked breast is the equivalent of cooking half a cow for a nice filet mignon." I couldn't have said it better, so out with old and in with the new. We are trying it this way for 2011. In the article, he actually has you take a turkey and cut out the backbone, then cook it flat. Actually, if truth be told, one of the reasons I am trying it this way is because it's just so darn simple. I have a Breville Smart Oven, which is a countertop convection/toaster oven and it cooks turkey, chicken and beef amazingly well. I got this oven as a gift from my sister last year and make everything in it. It turns out fantastic and is easy to clean. Who doesn't want easy on Thanksgiving? Last year, I was reading through the reviews on the oven and people stated that the only thing they didn't make in the oven was a turkey so I decided to make turkey breasts in there and they were amazing. Typically, I cook all organic meat and poultry in there and it turns out great every time. The organic chicken not only cooks fast, but it moist on the inside and yet the outside is moist as well and not dry. Fantastic. So this year, I purchased turkey breast to cook in there. Yes, I could have purchased a whole turkey and removed the backbone but then I'd still have a whole turkey, lol. Instead, I decided just to purchase the turkey breast. One tip is that if you like, you can purchase the turkey breast in a bag; Butterball makes them as do a few others. However, instead of cooking the turkey breast in the plastic bag, just thaw it in the refrigerator two days ahead of time then remove the plastic bag and cook the turkey breasts on a grill pan in the convection oven. Due to concerns over BPA, I would never, ever, cook anything in the oven with a plastic bag. Certainly, an organic free range whole turkey would be a lovely choice however when I priced organic whole turkeys last year from various farms, the price was around $150 or so, so it was cost prohibitive. Unlike organic chicken breasts, which is easier to find, organic turkey or organic turkey breasts are a bit tougher to find at local stores.

  • Broccoli-In the past year, I switched to organic foods so this year, I'll be making organic broccoli.

  • Sweet potatoes-I love sweet potatoes and typically prefer organic sweet potatoes over regular golden potatoes however since Dad is coming for dinner, he prefers golden potatoes so I'll make homemade, organic garlic mashed potatoes (made with organic golden potatoes, organic milk, organic garlic and organic butter).

  • Stuffing-I make my Mom's homemade stuffing and the stuffing calls for breadcrumbs and cornbread crumbs. For many years, I purchased herb seasoned bread crumbs and last year, I used my own bread crumbs made from my own bread that I make in my Zojirushi Mini Breadmaker. I have had a breadmaker since 2008 and bake all of my own bread, rolls, pizza dough, cinnamon rolls, hamburger buns, etc. from scratch. There is NO comparison to using homemade bread crumbs versus store bought. None. The taste difference is spectacular!

Two weeks ago, I tested out a new cornbread recipe from In my Mom's recipe, she used the Jiffy Cornbread Muffin Mix. I knew there was a better way but I hadn't tried any cornbread recipes. After selecting the Allrecipes cornbread recipe, I made it and found it to be good but it crumbled easily. More searching led me to the Neely's Cornbread recipe, which received a 5 star rating. It's made with honey which I am guessing acts as a binder to hold the cornbread together better and add moisture. So this year, I'll make the Neely's Cornbread recipe, made with organic corn meal. In addition, I have some organic sweet corn that I purchased this summer and have just enough to crush up and mix with the actual cornbread. Imagine that, cornbread made with real corn! There was one other enhancement that I wanted to do but didn't get a change. The Neely recipe is made with honey. I had hoped to get a jar of honey at the Arboretum, and made from bees at the Arboretum, but I didn't get a chance to get there. Next year, I'll purchase the honey in season and have it for Thanksgiving. That will be a real treat. This year though, store bought honey will suffice.

Next, I'll try the Neely's Apple Crisp. They add maple syrup and pecans to their's versus Rachael Ray's Apple Crisp which is simple but delicious. I purchased organic apples for the apple crisp and have real maple syrup from Vermont so it should be delicious. Topped of course, with real vanilla ice cream. Another tip is to prepare the Apple Crisp and then put it in the oven to bake right before you sit down to dinner. That way, by the time you are done eating, it's ready to take out of the oven and it's nice and hot, perfect for serving. In addition, you have that wonderful smell of the apples and cinnamon while you eat.

I try to keep Thanksgiving fairly simple, I mean how much food can you really eat in one day? I do however enjoy the taste of homemade food and because organic food has better flavor, you really get a nice explosion of taste.

Today, I made homemade bread to use for breadcrumbs. Tomorrow, I'll make the cornbread and crush up the breadcrumbs for the stuffing. Other than that, I should be ready to go.

On Thanksgiving morning, I'll use the same cooking schedule that I use every year. It can be a lot trying to get everything cooked on top of taking care of Dear Son but I find by using a schedule, it's much easier. Basically, it's just a list that I typed up that tells me what I need to do at what time so that everything will be ready on time. I find that it helps a lot since I don't have to recreate the time schedule every year. I keep this schedule in my Home Manual under holidays so I can grab and go every year. That's it for this year. Are you doing anything different for Thanksgiving this year? Are there any recipes that your family really enjoys?

Note: If you want to see more of my kitchen recommendations, click here, then scroll down to the bottom of the page and click on, "Great Kitchen Gifts". You can also find it by clicking on the, "Shop-Toys & Gifts for Special Needs Children" then scrolling to the bottom of the page.

All of the tablescape photos are from my former apartment. You can see the rest of my photos, which I refer to as my, "Sugar Maple Tablescape" in it's entirety by clicking here.

Wednesday, November 02, 2011

Drug Shortages

In the past week, we encountered another drug shortage for one of Dear Son's medications. Dear Son wears a Transderm Scopolamine drug patch to dry up secretions in his throat. Dear Son's muscles have deteriorated and he has excess saliva that causes him to cough, choke and is at risk for aspiration. Recently, I was notified by Walgreen's that due to a manufacturing issue, they could not get any Scopolamine since it's been on back order for months. This is the second time this year, that we have been plagued by drug shortages, first with Klonopin and now with Scopolamine.

I was unable to find another pharmacy that had some Scopolamine so we had to switch to an alternative, Robinul. We had tried it several years ago and it didn't work for Dear Son. He has been on it for four days now and it still doesn't work. He chokes more every night and he's awake a lot from choking and I am awake worrying he'll choke to death and getting up to help him stay on his side and to suction him.

Several years ago, we tried botox injections to decrease the saliva however the effect was short lived. It lasted about two weeks and then it no longer worked.

Drug shortages are becoming more frequent and becoming a problem. When you have patients like Dear Son, whose life depends on these drugs, it's scary. Often, I can't find information on the FDAs website but I did locate the reason for the Scopolamine shortage on
this website by the American Society of Health System Pharmacists. They list the reason for the shortage as, "increased demand". No release dates are given as to when it might be back in stock.

Drug shortages are serious problems. In September, there was a public workshop addressing drug shortages. Douglas Throckmorton, Deputy Director of the FDA's Center for Drug Evaluation and Research (CDER) states,

"Despite the efforts of all the partners in the room, and particularly the FDA, our drug shortages are getting worse and not better."

At this meeting, they urged all of the stakeholders to work together towards a solution. This problem has become so large that:

  • The FDA acknowledged that drug shortages for 2011 have already surpassed the 178 new shortages of medically necessary drugs in 2010 per Edward Cox, who is part of the four person team that constitutes CDER's Drug Shortage Program.

  • The FDA also reports that many of these recent shortages involve emergecy medicine drugs, cancer drugs, anesthetics and electrolyes, to name a few.

One proposed solution was suggested by DeWayne Pursley, neonatologist-in-chief at Beth Israel Deaconess Medical Center in Boston,who asked FDA, " to develop a list of critical medications and establish a federal stockpile of them and a fair and equitable method for distributing them. "

It's a bit shocking to even read a statement like that. I mean, I would have thought that a system would have been in place regarding critical medicines. Worse, it's hard to believe that more of these drug shortages are occurring. Dear Son has been on seizure medications since he's been two months old (he'll turn 20 in 10 days) and during that time, there was only one drug shortage. I remember one time there was an issue with Dilantin due to a fire in the warehouse that caused a drug shortage. Other than that, I can't remember any others and yet, in 2011, two of his medications have encountered shortages.

According to this public workshop, drug shortages are occurring for several reasons: Problems with product quality due to manufacturing issues, delay or capacity issues, and contractural obligations of manufacturers to reuse manufacturing lines to make other medications under contract. This problem can result in one manufacturer stopping production on multiple drugs to make drugs under contract.

At a minimum, ASHP's Director of Medication-Use Quality Improvement, Bona Benjamin, urged all involved stakeholders to support the "federal Preserving Access to Life-Saving Medications Act." The purpose of this bill is to require manufacturers to promptly notify the FDA of any manufacturing issues that may result in a shortage and also require them to notify the FDA six months prior to discontinuing any drug. Ironically, while the drugs they may discontinue may be critical or medically necessary, the FDA can't force any manufacturer to continue making a particular drug.

As a result of these shortages, I am shocked to learn that there really aren't any safeguards in place at the present time. Not only are there patients like Dear Son who depend on these drugs, but what about those drugs that would be medically necessary in case of a global disaster?

And finally, if nothing else, you would think that with the focus on saving healthcare costs, that medical safeguards would be put in place to prevent these shortages. After all, when we lack critical or medically necessary drugs, we increase the risk to patients for worse case scenarios which escalate costs. For example, the lack of Scopolamine could cause Dear Son to choke or aspirate, leading to an aspiration pneumonia which would result in a hospitalization. That hospitalization would most likely last a week or so and have billed charges associated of $40-$50k.

If nothing else, the one thing that typically gets people to take action is when the costs outweigh the current process, which is to do nothing. So in this case, what about the dollars that are spent on hospitalizations that occur as a result of a drug shortage? If a person on Medicaid or Medicare sustained a hospitalization that resulted in $40k or more in billed charges, you have to wonder at what point the federal government will step in and say enough is enough and enact a bill to force manufacturers to maintain supplies of critical drugs. Of course, first, they'll have to get a commission together, then do a huge study that will cost millions of dollars only to learn that yes, indeed, drug shortages cost money due to adverse events suffered from the lack of availability of critical medications. In the meantime, I can only hope that this shortage gets resolved so Dear Son and I can get some sleep.

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