What is a Hemispherectomy?

A Hemispherectomy is a “surgical procedure in which half of the brain is removed or disconnected”. Because this surgery is severe, it is done often as a last resort – when drugs can’t control seizure disorders coming from one side of the brain, if a lesion is found in one hemisphere of the brain, for severe viral or bacterial infections that have damaged the brain, for tumors and for children with tuberous sclerosis. There are other neurological disorders that can affect one side of the brain and may lead to the need for a hemispherectomy. You can learn about the surgery and the need for it from the Facts page on the Hemispherectomy Foundation website.

When this surgery is done on children up to the age of 14, they have a better chance than older children and adults of gaining back the functions lost from the side of the brain that is removed. There is some paralysis on one side of the body and the risk other health problems. But, many children go on to live long lives and achieve remarkable things.

Support for Families

The Hemispherectomy Foundation provides an online support group and volunteers by phone so families can connect with one another before, during and after surgery. Information about specialists in your area and an up to date newsletter are also provided to members. There is no charge for any of these services. You do have to register since the group communicates about delicate and private matters.

Scholarships

One of the missions of the foundation is to help families financially. What better way to do that then with scholarships? The Winner’s Circle proudly promotes winners of their yearly $1000 scholarship recipients. This gives parents hope for their young children and encourages children who have undergone the surgery as well.

How to Help

Monetary donations are accepted and are tax deductible. Donations of small items, like stuffed animals, coloring books and gift cards are welcomed for care packages and for families in need. You can also volunteer to raise awareness, to help with fundraising or form a local support group.

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Thanks to Dwan, from MommaDJane.com, whose daughter Gabby had a hemispherectomy in  2007. Dwan  lead me to the foundation’s website. Gabby received a care package when she was in the hospital for a related surgery. This post is dedicated to Gabby.

Recently the CDC reported about the prevalence of Autism. Here are some facts:
• One out of 88 children in the U.S. has an autism spectrum disorder. This is a 78 percent increase in 6 years (2002-2008) and a 10-fold (1000 percent) increase in reported prevalence over the last 40 years.
• Boys are still about five times more likely to be diagnosed with autism in the U.S. than girls.
• The largest increases of diagnosis were among Hispanic and black children.
• More children are getting diagnosed at earlier ages, some at age three, but most by four-years-old.
The importance of early diagnosis cannot be impressed enough. Early intervention can help with speech, social and other skills. The CDC put out a Learn the Signs. Act Early campaign to assist parents with identifying the early signs and symptoms of Autism.

Please take the time to learn more about Autism and share about this special day.

Be Sure that the Dentist is a Pediatric Dentist. Some dentists, even those that work primarily with children, are not pediatric dentists. They may have completed a Pediatric Mini Residency instead. According to the American Academy of Pediatric Dentistry:

A pediatric dentist has two to three years specialty training following dental school and limits his/her practice to treating children only. Pediatric dentists are primary and specialty oral care providers for infants and children through adolescence, including those with special health needs.

(You can also use the American Academy of Pediatric Dentistry site to find a pediatric dentists by zip code.)

Get Recommendations. Ask other parents for recommendations for dentists that they have chosen for their special needs children. You can ask friends, look online, and ask support groups.

Check for Complaints: Each state has a Board of Dentistry. You can check online, call or request the information in writing about an individual dentist or practice.

Interview the Dentist: Ask about the dentist’s and staff’s strategies for children who are fearful of the dentist office, procedures, etc. Ask about parental involvement i.e. are parents allowed to be with children during exams and specific procedures? Discuss your child’s specific disability and needs. Learn if restraints (especially papoose boards) are used instead of anesthesia or other means of care.

Visit the Dentist: Take along your child and visit the dentist office. It can be just to see the waiting room and get a feel for the place, or for your child to sit in the chair, meet some of the staff, see some of the tools that are used, etc. The best first dental visit is when your child doesn’t need one – there’s not a cavity, or a toothache, etc.

Oral health care is important for the overall health of all children, but some children with special needs may fear going to the dentist, need modifications during dental visits, and may require more frequent and intensive visits. Finding the right pediatric dentist for your special needs child will lessen anxiety and worry for both you and your child and prevent serious dental problems.

What have you done to find the perfect dentist for your child?

My Surgery and Recovery

Just two weeks ago I had the third Cystoscopy since early December. Nothing fun, mind you, but necessary because of kidney stones, an overactive bladder and then an obstructed kidney. I realized early afterward, that I wouldn’t be back online for a while. There was just too much happening to prevent it.

This recent Cystoscopy showed scarring of the urethra or Stricture of the Urethra to be more technical. The doctor can’t really say why that happened, it could be from the kidney stones, from the 2 other surgeries or from the stents that were inserted after the surgery. Oh, yes, those lovely Ureteric Stents! What buggers.

Recovery from a Cystoscopy is quick, but trying to cope with a stent in is uncomfortable, painful and irritating. And I have to be a difficult patient too. Because I have Myasthenia Gravis, I can’t take the medications that normally help with bladder pain. So these past two weeks have been spent in bed, with me hurting, taking pain pills which didn’t do much. Sitting hurt, leaning a laptop on my stomach hurt, I just hurt.

Sadness

Photo Credit - http://www.sxc.hu/photo/257960

A few days after the surgery, my mood swings began. I snapped at my daughter for no reason, cried when I had to ask for a blanket, and wanted someone to sit with me until I fell asleep. I was a mess. Then I lost my appetite. Then I didn’t want to tweet from my phone or check Facebook or email. That scared me. I called my psychiatrist and therapist, thinking I was going into a major depression, but was told that it was “situational depression”. Pretty normal since I’ve been dealing with the same stuff since Thanksgiving.

How I Coped

I slept a lot and ate what I wanted. Since I wasn’t eating much, it didn’t matter. My husband or other family member reminded me to take a pain pill when I was really hurting. And I watched TV – anything that made me laugh. I watched Golden Girls, Living Single, Adam Sandler movies, Comedy Central, Chelsea Lately, and my regular prime time TV shows. No news, no dramas, nothing that might bring me down. And I laughed, even through the pain.

What I’ve Learned

My blog is back, thank goodness. I may not be posting every day for a while, but I’ll get there. I hope to get back to Twitter and Facebook soon too. But, I’ve learned some lessons that I’m going to incorporate into my life. My health comes first. No more late nights online, or pushing myself to the limit. Family is next. I’d rather spend my time with them instead of in front of my laptop. Plus, I’ll have more to share because I’ll be living life! I’m not going to be afraid to ask for help in advance. I should have had guest posts lined up just in case. I thought I could handle wiring my own posts in advance, but I’ve been too sick for too long.

Thank You

I read through some of my emails, tweets and Facebook updates. Thanks to those of you who reached out to me while I was gone. I’ll get with you as soon as I can. To know that people care is the best gift and one big reason I won’t give up being back online. If anyone has any questions about the surgery I’ve been through, let me know. You can get with me on my contact page.

Back around Thanksgiving, I was diagnosed with kidney stones. I passed one, but still didn’t feel well. Off I went to see a urologist, who recommended a Cystoscopy to see if any damage had been done when I passed the stone. I ended up with a stent and no real explanation of what to expect during the time I had the stent. To put it lightly, it hurt…a lot. About a week later, the stent was removed and still no relief. This health update is going to mention pain a lot, so be prepared.

December 16th

I ended up at the ER, where I was made to feel as if I was a complainer who couldn’t deal with pain and a drug seeking patient. This happened even with my urologist being called it to assist the ER doctor. Long story short, the urologist did notice that my stomach was distended (something I was telling him for 2 weeks) so I had some uncomfortable tests done, which showed nothing. Then I was sent home with the diagnosis of a UTI and a prescription for a new antibiotic.

We actually were going to Disney World to celebrate Sammi’s 13th birthday, which the urologist said would be fine. I was feeling good because of some IV pain meds that I was given in the ER and I didn’t want to miss out on a trip to Disney, so off we went. I lasted until midway through breakfast, when the pain hit again. Thank goodness we ate at our hotel, so I could rush back up to our room.

Not to be gross, but I peed 20 something times in 30 minutes. Scared about this, I called the urologist. He never called back (this was common). I stayed in the room, peeing and hurting all of Saturday while Shawn and Sammi visited the parks and celebrated her birthday. On Sunday, they went to Downtown Disney, while I rested and peed some more.

December 20th

A few days later, still suffering, my husband made an emergency appointment for me with our family doctor. She took one look at me and knew things were bad. I had another CT scan done and was admitted to the hospital the next day. Another Cystocopy was done and I was sent home on December 24th. The only thing that was found was that my kidney was enlarged. Of course I had another stent put in, so I was hurting all through Christmas Day and days after. I had the stent removed almost a week later and all of my pain and symptoms were blamed on the stent. Huh? Right after that doctor visit, I made an appointment with another urologist for a second opinion.

January 9th

Ultrasound showing Hydrohephrosis

The new doctor actually examined me and looked through all of my medical notes. I had an ultrasound of my kidneys, which showed fluid in the right kidney, called hydronephrosis. So a kidney scan was scheduled. That showed a sluggish kidney with some obstruction. I should hear from the new doctor on Tuesday with more information.

The new urologist explained that because of the other medical conditions I have, that I would feel worse than someone who is healthy. Also, I’m on immunosuppressant medication which could cause me to reject the stent and/or have an underlying infection. I’m pretty much in bed most of the time because of the pain, weakness and exhaustion, but I see light at the end of the tunnel with this new doctor.

I’d appreciate if you’d pray for me and send me some healing vibes. I really need them.

Image: http://en.wikipedia.org/wiki/File:Phydronephrosisfromstone.png by James Heilman, MD.

Because of that (most likely), I ended up with kidney stones. I felt kinda sick on Thanksgiving, but I figured it was because I ate too much. My stomach hurt a little on and off and by bed time, I felt sick to my stomach. I didn’t sleep very well, but got up early the next day because my daughter had a doctor’s appointment. My husband then wanted to go to the AAFES store to do some shopping and all I could think of was going back to bed. I knew something was wrong then. Me, not want to shop? I didn’t feel like eating either and had just a bit of left overs that night for dinner.

Kidney Stone Pain - http://en.wikipedia.org/wiki/Kidney_stone

By that night, I was in a lot of pain. My whole stomach hurt and the nausea was much worse. Every movement felt like stabbing, but I kept having to get up to go pee. I felt a lot of pressure and the pain just kept getting worse. Around 6 AM, I swore it was my appendix. The pain felt as bad as labor. My husband called 911 because we thought my appendix had burst. I was shivering and sweating, nauseous and even a tiny movement had me yelling out from this darn kidney stone pain.

Long story short, I learned I had 2 kidney stones. I ended up passing one on Saturday night, which was even more painful than Friday’s torture. But, it was over. The other kidney stone was in my kidney and there were multiple small ones that I didn’t need to worry about. I had an appointment with a urologist to check on me coming up.

Well, my appointment was Monday and by then the pain was similar to Thanksgiving day, but with added back pain and pressure. Because of my underlying medical problems and the possibility that I may have done some damage when I passed the kidney stone, the doctor suggested a Cystoscopy. I’ll be having that done this Thursday and staying overnight. I’m not happy about having surgery and being in the hospital, but if it gets rid of this pain, I’ll deal with it.

It feels empowering to know that I went through the kind of pain that the Heavy Weight Boxer, Wladimir Klitschko called, “hell” and survived!

• Medicaid – funds health care coverage for one in three children in the U.S. and half of all kids who find themselves in children’s hospitals
• Children’s Hospital Graduate Medical Education (CHGME) – funds pediatric residency training. A shortage of pediatric specialists can have major consequences on the timeliness and availability of health care children receive.

Why Speak Now For Kids is Personal

As someone who uses a children’s hospital for medical care for my daughter, I want to Speak Now! We already have to travel over an hour to get proper pediatric care. And I know of other parents who have to travel farther or can’t afford the specialized medical treatment that children need. Children are not small adults. Doctors who are trained in pediatrics need to be the ones who treat them.

You can Speak Now

• Send a direct message to your member of Congress (they’re on Twitter)
• Use this simple form to contact your representatives quickly and easily
• Involve you child. They can color a flyer and send it to Congress
• Share this information on Twitter and Facebook by using the buttons below this post
• Share this video -
  

Remember These Dates

• Nov. 23^rd: Super Committee deadline for deficit reduction recommendation
• Dec. 15^th: Deadline to turn colored flier in to Member of Congress

Let’s do our part for all children in the US. Give them a voice and Speak Now for Kids.

Information for this post was provided by Global Influence. It was my pleasure to share it with you as being an advocate for children’s issues is something I strongly believe in.

Unfortunately, I know too much about Type II Diabetes, since it runs in my family. My mother is one of six siblings and 4 of them have/had Type II Diabetes. Two of them are insulin dependent. I’ve seen the devastating health effects that Diabetes causes and I don’t want this for my family. Since one of the factors is family history, I am concerned about knowing the symptoms and want to prevent Diabetes for myself and my children.

Prevention of Type II Diabetes

A healthy diet and becoming and staying active are two ways to help prevent Type II Diabetes. You can learn more about prevention tips during the #betterneggs Twitter party including Oprah’s personal trainer and health and wellness expert Bob Greene. The party will be held on on 11/16 from
8-10pm EST. Please be sure to RSVP and learn more about what will be discussed and the amazing prizes!

I’ve been working on a healthy diet for my general health. Sure, I give in to my cravings once in a while, but eating healthy and low calorie foods is important to me. Crystal Farms Better’n Eggs  and AllWhites is a good addition to eating better.

Facts about Better’n Eggs Products

• they are fat-free, cholesterol-free, and low-calorie alternatives to shell eggs
• they are made from real eggs
• Better’n Eggs is 98% liquid egg whites, plus 2% vitamins and minerals
• AllWhites is 100% liquid egg whites with nothing added
• they are pasteurized fresh egg whites, therefore they can be eaten raw, for example in smoothies

Recipes Using Better’n Eggs Products

Smoothie Starter

Preparation: 5 minutes
Serves: 1- 7 ounce serving
Ingredients:

• 1/3 cup AllWhites®
• 3/4 cup  (6 ounces) orange, pineapple, apple or cranberry juice

Instructions:
Pour AllWhites and juice in a glass and shake well or place in a food blender to mix well.

Tip: For a thicker shake, include strawberries, bananas, plain yogurt and/or a couple of ice cubes.

Scrambled Egg Margariti Pizza

Time-To-Table: 15 minutes
Serves: 4
Ingredients:

• 2 cups (16 ounces) Better’n Eggs®:
• 1 package (10 ounces) 100% whole wheat thin crust prepared Italian pizza crust
• 2 Roma tomatoes, chopped
• 2 tablespoons finely chopped fresh basil
• 1 cup (4 ounces)  Crystal Farms® Reduced Fat Shredded Mozzarella Cheese

Instructions:

1. Heat oven to 450° F. Spray 10-inch nonstick skillet with nonstick cooking spray. Cook Better’n Eggs in 10-inch nonstick skillet over medium heat. As egg starts to set use spatula to lift edge of cooked eggs letting uncooked egg flow to bottom of skillet. Cook until eggs are set but still moist.
2.  Place pizza crust on large cookie sheet. Top crust with cooked Better’n Eggs, chopped tomatoes, basil and cheese.
3.  Bake 8 to 10 minutes or until cheese is melted.

What Are You Doing to Prevent Type II Diabetes?

Don’t forget that a healthy diet and exercise can help prevent Type II Diabetes and the progression of it. Let me know what you’re doing?

This is a compensated post from Global Influence. Some of the information was provided, but all thoughts are my own.

There are some things I wish I knew before hand and some I’ve learned along the way. This isn’t medical advice, but one mom sharing what it was like for my 12 year old daughter’ tonsillectomy and adenoidectomy.

Tonsillectomy Tips for Parents

• Bring another adult with you to the procedure – Trust me, you’ll be nervous about the procedure. Having another adult with you helps you to be calm for your child. Since most tonsillectomies are done on an outpatient basis, having someone else drive so you can sit with your child will make things much easier and safer.
• Be prepared for vomiting – It can happen because of the anesthesia, or the pain medicine given to your child, but vomiting can occur. Bring a change of clothes and some type of bag with you for the car ride home. At home, leave a container at bedside.
• Expect restless nights – Your child may need pain medicine every four hours for the first few days, or may wake up a few times during the night because of pain, needing to use the restroom, or just needing some comfort.
• Stock up on food and drinks – Depending on your doctor and the time of surgery, your child may be able to drink clear liquids on the day of the tonsillectomy. Soft foods and lots of fluids are needed during recovery. Don’t get too much of the same type of food or drink because you’ll be willing to let him eat or drink almost anything! My daughter and some other children don’t want to eat or drink because it hurts so much. I gave up on yogurt and ice pops and switched to chocolate milk and crushed up/dunked graham crackers. She was on the verge of dehydration, so I was fine with that.
• No drinking from straws – I don’t remember why, but that’s what our wonderful and very helpful nurse told me!
• Pain medicine – Be prepared to give your child her pain medicine every four hours (or the time given by your doctor) for about the first two – three days. This will help prevent the pain from getting overwhelming.
• Get some cold packs – Flexible ice packs or frozen peas in a bag work well for around the neck and on the jaw to relieve pain and reduce swelling within the first few days of the tonsillectomy. Use a towel to wrap up the cold packs before putting them on your child.
• Heating pad may be necessary – Later on, a heating pad can be used for neck and ear pain. We tried this and really helped! My daughter’s muscles were tight around her shoulders so this came in handy. It was placed on her upper back and around the back of her neck a week after the procedure. Keep an eye on your child since they can fall asleep with the heating pad on.
• Avoid citrus and citrus flavored drinks – Citrus can sting the throat.
• No school for at least a week – My daughter was home for a full two weeks. She gained back some of her energy by the second week, but still had some pain and was weak.
• Keep notes – Write down the time and dosage of pain medicine, any other medicine, when your child urinates, your child’s temperature, etc. It is so easy to get confused because of the lack of sleep and if someone else is helping to care for your child. It’s also important to have that information if your doctor’s office needs it.
• Rent some movies – I rented DVD’s, bought some new books, and got out some coloring books and crayons to keep my daughter happy. TV can get boring, even for our kids!
• Buy a whiteboard – Instead of using lots of paper, we used a whiteboard for my daughter to write instead of speak when it hurt too much to do so.

This is something I wish we had: Imak Neck Support – Hot Cold Wrap Around Neck Support

Do you have any other tips to share about preparing for and recovering from a tonsillectomy?

One thing I’ve learned is that although a tonsillectomy is a very quick procedure (hers took about 15 minutes), there can be a long recover period. Recovery depends on how your child tolerates pain, the age of your child and the amount of swelling that occurs after the procedure among other things. Since my daughter is 12, she is closer to a teenager, who can often have a longer and more painful recover period.

Choosing A Doctor

We decided on a doctor who only works with pediatric patients. The ENT (Ear Nose and Throat) office has a number of doctors and nurses on staff and was recommended by two of our daughter’s doctors. We felt comfortable with the doctor from the first visit. He took time to answer all of our questions and those of my daughter’s. Her other medical issues were taken seriously and all notes from other specialists were contacted either via phone or medical notes. We met with the nurse who scheduled the procedure and she took the time to go over the details again. We were able to ask questions by phone up to the day of the procedure and never felt like we were bothering anyone.

Preparing for the Tonsillectomy

We received information from the ENT office for my daughter and for me to read and their website which has special sections for children and parents. Since my daughter would be staying overnight at the hospital, because of her medical problems, we also had use of the hospital website. Of course, I talked to my daughter about what was coming up and let her talk about her fears and concerns.

The Day of the Procedure

Because of my daughter’s age, she was one of the last ones to have her procedure done. Although she couldn’t eat any solids after midnight, she could have clear liquids up to 3 hours before the tonsillectomy. Thank goodness, she slept in that day as we were scheduled to be at the hospital at 1:15 PM. She was nervous, so we had movies, books and video games ready for her. She slept again during the ride to the hospital. Once we arrived, the staff took over and helped to calm her fears. We were able to stay with her all the way up to the Operating Room doors.

The hospital is child friendly and had a television in the pre-op room. All of the staff spoke nicely to my daughter and answered all of her questions. When she began to cry, the nurse was there in a flash to help her. She did not get an IV until after she was sleepy from an anesthetic she breathed in through a mask.

After the Tonsillectomy

The doctor spoke to us right after the tonsillectomy to let us know that everything went well. Then we waited to be called into the recovery room. Once there, we found our daughter talking, which surprised us, until we learned that she had been given morphine. She was in a panic though and was confused. One nurse was with her throughout the recovery period and explained what was happening to us. After about 10 minutes, she calmed down, but was very nauseous. She began to hyperventilate and the oxygen mask was put near her, not over her mouth. Soon, she vomited, which caused her to hurt a lot. More morphine was given.

The worst complaints within the first 4 t0 6 hours after the procedure were pain and nausea. She wasn’t able to explain where the pain was. A different type of pain medication was given and medication to help with the nausea. She was able to eat part of a popsicle. Later that night, she needed help to use the bathroom because she was dizzy and weak. She was also able to drink some milk with very softened graham crackers. She awoke many times during the night due to pain.

The Next Day

Her ability to speak worsened as the swelling in her mouth and throat grew. There was more pain in her throat as well. Because she wasn’t drinking or eating as much as she should, she spent the day at the hospital. She was miserable. Nothing made her happy. Her pain medication was changed again and she finally ate some ice cream and drank water and milk. We were able to get her prescriptions filled at the hospital and we were on our way home.

The Days After the Tonsillectomy

As the days went on, ear pain and neck pain began. Inside her mouth was swollen and she had a fever which ran from about 100 – 101. The doctor’s office was in touch with us and increased the amount of the pain medicine which included a fever reducer. We gave her medicine every four hours to prevent the pain from catching up on her. I used my cell phone alarm to remind me. We didn’t wake her for her medicine, but she did have a few nights that she woke up and needed it. We kept a list of the time and dose of medication, the time that she used the bathroom and any new symptoms she had.

Another surprising thing that has been occurring is that my daughter has been much more emotional, even crying. We were told that this is common for older children and adults. And crying causes more pain. This makes it difficult for me as a mother. I try to comfort her, but there doesn’t seem to be much I can do to help her.

Common Symptoms

• A stuffy nose is another common complaint. Have lots of tissues ready and encourage your child to blow her nose.
• Expect bad breath! It’s awful, and even brushing teeth won’t help. It is necessary to have your child brush their teeth though.
• Ear pain
• Weakness and lack of energy
• Sleepiness – can be due to pain medications
• Neck and shoulder pain
• Fever

What We Hope for the Future

During the tonsillectomy, the doctor also did a sinus culture. We’re waiting on those results to see another reason, besides allergies that she is constantly congested. After she is fully recovered from this procedure, my daughter will undergo another sleep study and perhaps a nap study to determine if the diagnosis of narcolepsy is correct,  if another sleep disorder will be diagnosed or if the removal of the large tonsils will improve her sleeping.

Has your child or have you as an adult had a tonsillectomy? What was your experience?