Get your doctor to listen to you!

How to make your child’s doctor listen to you!

1st : VIDEO TAPE (If possible) what your child is doing.

For example, if you suspect any of the following, try your best to capture it on video.

Autistic features, seizure activity, pain, loss of coordination, or anything that is visual.

Bringing only your words to the table when the doctor asks, “What going on?” You might as well be walking into a courtroom without evidence! Keep a recording device on you at all times so it’s ready to go when you notice the change.

This is based on personal experience. When my son began having Infantile Spam’s. I brought him to his pediatrician, I told him what I was seeing. He said “Kids do funny things sometimes”. I knew he was wrong. So very wise advice was given to me by another TSC mom. “Video your son having his spasms” she said, and so I did. Doing this made the world of difference. We drove our son to the city and showed every doctor that came in to see him, the videos. As I thought, Conner was then admitted and diagnosed with Infantile Spasms. TRUST YOUR GUT!

2nd : JOURNAL your heart out. Keeping a log of your child’s activity is important. When the doctor asks you “When did that begin?” “How often?” “How long does it last?” Questions like these can be referred back to your journal which makes it a whole lot easier. Instead of just sitting there and saying “Oh I don’t remember…” It is amazing how much they appreciate your seriousness of your child’s care. They respect your efforts so they know that you will be expecting the same effort from them!

3rd : MEDICAL BINDER’s are very helpful. You can make your own or ask your resource center if there are programs that provide you one for free. Conner’s binder consists of Medication lists, dates of surgery, clinic notes, MRI and CT scan disks, and lots of other important information. I don’t know about you, but I hate being asked the same question a million times. My son’s binder has become my best friend. The first thing I do is hand them his binder. I hand it to his pediatrician, the ER nurses etc…All they have to do is make copies of what information they need to obtain.

4th : RESEARCH. I know the internet can be scary and some of you may disagree with me, but I have found researching my son’s symptoms, extremely helpful. The stories you find of other parents could possibly save your child’s life. When Conner was on ACTH (Steroid for Infantile Spasms) it began making his tumors in his heart grow! Thought the big city hospital never heard of such a thing. I printed out what I found and brought it to their attention. They quickly ordered an ECHO, long and behold, I was right. They immediately stopped his medication. Who knows what would have happened if they didn’t believe me.

I hope you have found this helpful. Please contact me if you are having difficulties communicating with your doctor. Remember that the doctor will only be as polite as you are to them. So only be stern when you feel the need to be. Again…trust your gut, you are usually right. Yes some of us may be looked at as “Paranoid”, but my motto is, ”It’s better to be safe than sorry!”

Here is a link to a video I took of Conner’s weird symptoms. I already knew they were Infantile Spasms, the beginning diagnosis was Multifocal seizures but they transformed into IS a month later.

https://www.facebook.com/video.php?v=457172697667480&set=vb.431526783565405&type=3&theater#

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What’s in my Special bag?

What’s in my Special bag?

Stethoscope ( Conner has heart block and arrhythmia )
Pulse ox ( not accurate enough but check oxygen level )
1 feeding bag ( Conner is G-tube fed )
1 formula box
Thermometer
Emergency meds ( For prolonged seizure )
Extra syringe
Wipes and diapers
Feeding Extender
Eye drops ( Conner get dry eye often )
Glasses
Head phone to block sound ( Sensory over stimulation )
Emergency tube ( Incase Mic-key button comes out )
Diaper sacks ( I am sure everyone loves the smell of their poo )
Otoscope ( I use this all the time because Conner gets ear infections )
2×2 IV sponges for Mickey button ( To soak up tummy boogies, yuck )
Orajel ( For teething, I love when my kids cry non stop, don’t you? )
Drainage protector and catheter plug ( If Mic-key comes out it clogs emergency tube so stomach contents don’t leak out )

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How to set up your kangaroo Joey junior feeding pump

Hey there care givers! I just happened to come across one of my old videos and I received over 12,000 views! Unfortunately I do not remember how to log in to that account, but I am going to post the link below and I hope you all find it helpful! Please comment if you have any questions or would like to add something I left out. http://youtu.be/qFsoYoSyNv8

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Conner’s Journey part 2

“Karissa…….Karissa….Wake up….” I slowly opened my blurry eyes. Focusing on the blonde woman in my face, I tried to make sense of where I was. “ Your son is doing well. He didn’t need any help. “ Then she disappeared. I felt like she was lying to me or I was dreaming. In walks my husband with our camera. I see for myself, a video of my son lying on a table, kicking his legs out and crying. He looked like a healthy normal baby. How could this be? Was it possible he didn’t need any help? I cried but still felt numb.

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I was in complete shock. I made myself a video blog when my medication wore off a little. I spoke about how I was feeling and how Conner survived! I just kept thinking how much I wanted to hold my son. Because Conner was in the NICU and I was recovering from my emergency c section, which by far is more painful than a regular c section, we had to be apart. I was loaded with medication for the severe pain so everything is pretty foggy.

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The next day my husband called my moms phone as she sat beside my bed. She let me know that I had a surprise coming. I had a feeling I knew what it was. I put on makeup incase there would be pictures. My husband walked around the curtain of my bed holding…what I thought was impossible…my son. The one who continued to kick every now and then reminding me “ Hi mommy, I’m still hanging on!”. He was so tiny, I had never been so scared to break something as I was then. I held him gently in my arms. Still numb to it all, I cried. I rocked him side to side regardless of the pain. He looked just like his big sister.

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The nurses had made exceptions for Conner to leave the NICU since he was a miracle baby! That was the best surprise ever…I didn’t want them to take him away. He could only stay for a little bit. It had been sixteen hours since he was born. I hadn’t soaked him in enough…I needed more of my Conner. His sister Lacie got to meet him while he was in my arms. She didn’t know what to think. We didn’t prepare her for having a baby brother. We didn’t talk about him in front of her. I could tell she was a little put off.

We were asking to meet with the doctors in the NICU to discuss Conners MRI and genetic testing. They explained to us that Conner had numerous tumor’s through out his brain. They told us he had Tuberous Sclerosis Complex type 2. It didn’t come from either of us. He developed it totally on his own. Apparently it was just a freak thing. The doctor also mentioned that Conner would likely would have learning disabilities and seizures later in life.

As I held him in my arms, I starred down at his little head and couldn’t wrap my head around the fact that there were these awful little tumors inside of his brain! But for now, he was perfect in every way, and I decided I was going to enjoy every moment without the fear of his future.

Only four days later, we were ready to go home. I never imagined this moment would come. Hence, why I was totally unprepared. I didn’t bring a car seat, or anything. The hospital donated one to us! We were so grateful. Boy, did I have some shopping to do! We strapped Conners little body into that huge car seat. Joel was so scared to drive with Conner in the car. It was actually really cute.

Walking into our home with our son was surreal. I wanted to stay up forever and enjoy it all, but I was so tired, so we went straight to bed and Conner slept with me. The next day my mom brought a bassinet, clothes, diapers, and everything else we needed. I had a few things hidden away like a breast pump, a few outfits, and a bouncer. I placed the crib and swing out in the garage before his birth. I didn’t want to see anything that would make me sad when we came home without Conner.

I was so in love with my son, I felt on the clouds for weeks! Our friends from our Kingdom Hall came every night to drop off dinner, and friends would come clean my house and get groceries for us. We felt so loved and taken care of. My mom put together a last minute baby shower, which didn’t at all seem like a last minute thing. It was beautiful! We had about 80 people come. It was overwhelming how many came. We received everything we needed of course. Conner was 1 month old at the time. People came up to him and cried while he wrapped his little hand around their fingers. It was a very special day.

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One month later EVERYTHING changed. Joel and Lacie went to meeting ( or as you would call it, a church service) Click here to find out what “Meeting” is http://www.jw.org/en/video-kingdom-hall/ I was home by myself with Conner. We were laying on my bed and all of a sudden a face changed and looked scared. His arms went up and his eyes began to roll. His whole body shivered. It lasted 15 seconds. I sat there crying trying to call Joel, he didn’t answer so my mom rushed over.

I knew he would have seizures but not so young! From that point on he had grand mal seizures every hour and the longest lasted almost 3 minutes. I was terrified. The doctor started him on a seizure medication called Keppra. It helped but it took a few weeks to figure out how much he would need to control them. Finally he only had 5 a day which was reasonable considering how many he was having before.

Conner began having infantile spasms at 7 months old. I was extremely depressed because Conner had forgotten how to laugh, smile, and babble. He even forgot how to eat. He would have over 200 individual infantile spasms a day and if he wasn’t seizing he was sleeping. He was never awake to eat, and he eventually became so weak to eat and forgot how, that he had to have G-tube surgery so he could eat. Infantile spasms have been his hardest challenge. Here is the link to his news video of that time. http://m.krcrtv.com/With-a-Total-of-19-Tumors-Everyday-is-a-Battle-for-Baby-Connor/18147000

From age 0-5 is when children develop the most. Conner has had so many seizures that obviously effected his milestones. He gained back smiling, and laughing after trying a bunch of different medications. Only some of them showed a slight improvement. He went 3 months without any seizures and he began to babble again! The seizure break happened completely on his own.

I thought this is it, he’s better! Then while shopping in Target one day, he was laying in the cart and had a cluster of 20 spasms. I called my mom and cried on the phone. Since then I knew things would never be stable. He would have small breaks and then begin having them again and again.

Conner is globally delayed. He is 2 ½ now and crawls a little, babbles, and laughs. He still has close to 100 spasms a day. Conner gets medicine 3 times a day. He recently had a pace maker put in because he developed 3rd degree heart block. He has healed up good, and it’s amazing to hear his heart so regular. He continued to have ECHO’s and halter monitors done after birth. He always had a crazy arrhythmia.

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Our life has been so different since Conner came into our lives. I have flown with Conner too many times to count. The town we live in offers nothing to Conner. Anytime he is having problems he is airlifted to the city. Conner has made us a closer family. Of course we come across hard ships, but we always make it through. California offers so many great things to kids who have disabilities. Conner sees 5 different therapists! It really had made a huge difference.

I love my son exactly the way he is. I wish he didn’t have to suffer the way he does, but he is the bravest kid I have ever known. I know he will be my baby for life, but I’m okay with that! I’m glad I get to have my baby forever rather than not at all. He has humbled all of us including his sister. Lacie loves to take care of her brother. Of course, we have a hard time juggling attention between the two but we make it work. She is good at communicating and letting us know she needs us.

If you others are going through this or think you might be, I know this sounds cliché’, but you really are not alone. You have a huge group of parents to help you through. Including myself, please contact me if you have questions or need help. I will do my best… Things won’t be this way forever.

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Conner’s Journey Part 1

I sat there on my bed waiting…I walked over to my bathroom and starred down and the two blue lines in front of me.

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This was my second time around finding a positive pregnancy test!image imageWe became pregnant with our second child. We were thrilled! The weeks went by slowly of course. We were so anxious to see if we were going to have another girl, or if we would be having a little boy!

I laid on the table while the technician moved around my belly with their Ultrasound. I sat there thinking “ I wonder why they are taking so long this time. It wasn’t this long with Lacie”. “ I’m going go get some assistance.” I instantly knew something was wrong. Both technicians begin moving around the wand and looking close at the screen. They kept looking at his heart for some odd reason. “Well you’re having a boy!” We were so excited! Of course we called everyone right away to tell them the news.

My mom and I had a cleaning business together at the time. I sat there at their bar listening to a voice mail on my phone. “ We found a large mass inside of your sons heart. We need to send you to a better hospital for more testing”. Sheer panic of course overcame me. Obviously my husbands response was “I’m sure they are just wanting to be extra cautious.” I knew they weren’t. How could you see a huge tumor? It would be more likely to see something missing, not an extra part! Of course I’m no brainiac.

We arrived to our appointment in the big city and nervously waited to be called by a genetic specialist. We gave them all of our family health history. Next was an ECHO which is an ultrasound of the baby’s heart to check blood flow and growth of the mass (tumor/tuber). The tech sat there quietly but answered my question. “Is there really a tumor in there?” “Yes, there definitely is a mass there.” As Dina pointed to the tumor which looked like a heart beating. Nope! The tumor was so big it looked like the heart.

After the ECHO, we sat in a cold room with little space. Now that a tumor was confirmed, I became numb. I didn’t know how to feel. The doctor came in and explained that the tumor was called a Rhabdomyoma Tumor. Our son would likely have Tuberous Sclerosis. The tumor would continue to grow until birth. Little did I know how fast it would grow. Tuberous sclerosis became my last thought of the day. Our daily horror was “I wonder how big the tumor has gotten today”. We had to travel 3 hours every 2 weeks for regular ECHO’s.

At 27 weeks, I noticed Conner started moving less and less. I came to my appointment and was told his tumor was so big that his heart would soon stop beating. And then he would die. I sat at the end of the patient table. Starring at the floor, while the doctor explained everything to my husband and mom. I don’t remember much of what he said. He said “Keep track of the baby’s kicks”. That is all I remember. I couldn’t open my mouth. My teeth were clenched together. I avoided eye contact with my family.

We pulled into a gas station. I sat there watching my mom walking in to pay. I just completely melted into a puddle of tears. I was so numb. I felt like I was living a nightmare. I knew I would be waking up soon. Most of my pregnancy was in my bed. I didn’t want to be with my friends. The sadness overwhelmed me. I forgot who I really was. How could I ever be happy again? His movement became rare.

At 30 weeks, I noticed no movement at all. I called the on call nurse. She advised me to quickly head to the ER. My OB met me there. She told me his heart rate was so slow that it was at the point of brain damage. She contacted the flight team, and they came to fly me to the city. I was put on a stretcher and strapped to a fixed wing plane. My husband sat in the front with the pilot.

I laid on my side for 45 minutes while the flight nurses checked Conners rate every 5 minutes. We finally arrived safely and was immediately admitted. A million people came into my room and ran tests. They told me they would most likely take him out that night. We were terrified. His chance of survival was so slim already being premature but having an enlarged heart with hardly any blood flow. We prayed and prayed…

The doctor finally came and decided that Conners chance at survival was the same if they took him out or left him in. It was decided they would leave him in. They scheduled an induce date at 39 weeks but told me that he would pass away in the next couple of days. I was given info on funeral arrangements. I wrote out my plan. I forced myself to a few gatherings to distract myself but suffered silently.

 

Somehow he survived until 39 weeks. We came in, and everyone was surprised. They began inducing me. I was somewhat anxious to meet my son, even if it would be only a few moments. I smiled for pictures. I kept quiet most of the time. I didn’t know how to feel.

They rushed and called on their emergency pager for an emergency c-section. His heart was dropping too low. They rushed me out before I could say bye to my family. They ran me down the hall, and pushed my bed through double doors. They laid me on a table with a huge light above me. I shook so much I could hear metal hitting metal. I was scared out of my mind. They put me to sleep and that was it…everything went black.

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Confessions of a special needs parent

Confessions of a special needs parent

Health issues of my own. Severe stress and lack of self-love can bring on a whole lot of health issues! I happen to be one of them! I was diagnosed with Conversion Disorder January 2014. It took two years to find a diagnosis. The bottom line is, we all forget to take care of ourselves when we are so busy with our special kiddos. In order to take care of them, you have to remember, YOU NEED TO BE PRESENT. There were numerous times were my body just shut down and it killed me inside not being able to take care of my son. So take those vitamins, eat healthy, and have quiet time to yourself…I better practice what I preach!

Therapy. You should never feel guilty for seeking out professional help. If you are embarrassed, then just keep it to yourself. Nobody needs to know. It’s only your business! Talk to a resource center and ask about programs for parents of special needs children.

Medication. Do you know there are over 70% American’s who rely on medication? Just because you need medication to get through this rough life doesn’t mean you’re a quack! Most of the people you know are probably on something themselves. I myself take an anti-depressant. I am not ashamed of it! And you shouldn’t be either! Medication isn’t for everyone, those of you who have gotten along without it, more power to you. I’m just saying, don’t feel ashamed. And again YOUR BUSINESS!

Forgetfulness. If you say you have never forgotten to give your child their medicine, or missed their doctor’s appointments, then I would say you are full of… POO POO! It happens to the best of us, over and over and over again. Hey thanks Adam & Eve for our inherited forgetfulness! (NOT!) Don’t feel guilty. I find that setting an alarm in my cell phone is a great reminder, but don’t do what I do and click the “dismiss alarm” and then forget! Get up and do it the second the alarm rings.

Jealousy. Every parent is different on how they handle their situation with their children. Here is what I felt in the beginning when my son came into the world. Any time I saw a magazine cover that said anything about milestones, or pamphlets given at the doctor’s offices. I began to feel a little monster called “Jealousy” attacking my heart. It used to happen every time. After a while I began to accept that my son is going to do things when he does them. Every child hits their milestones at different times, and yes maybe my son will wear diapers his whole life, but I sure am lucky to have such a wonderful, loving son, and THAT is the most important thing to remember. Jealousy never really goes away. It’s okay to feel jealous, having kids with disabilities, and special needs is apart of our world now more than ever. Kids were not meant to be sick like this. It’s only natural we have strong feelings inside eating us up. That is why belonging to some sort of group to talk about how you are feeling is so important! Thank goodness for Facebook!

Excuses. You may not agree with me, or pretend, not to agree with me, but I have found that having a special needs child can pretty much get you out of every sticky situation. “Hey do you want to come to my Tubberware party?” I’m thinking “I would rather stay home, and mop my kitchen”, but instead you use your child as an excuse! HEY, we have every right! I don’t see it as lying because no matter what… going to social functions is always going to be difficult with a special needs child. Don’t say you have never done it!

Proud. Every parent’s deals with talking about their kids differently. Some parents don’t like to talk about their child’s disability. I, on the other hand, am opposite. I LOVE to share with people about my sons disability, not to receive pity from people, but because I am so stinking proud of my son. He has defied all odds, and did the opposite of what doctors thought he would do. So yes, MY son has over 100 seizures some days. MY son doesn’t get to taste food because he is fed through a tube. MY son is globally delayed because of all of his seizures. MY son crawls, he tries to sign, and he loves…

Siblings. Sibling ALWAYS suffer from a lack of attention from their parents. It is good to recognize this and try your best to give them attention at every opportunity possible. Of course, our patience is stretched so thin, but I always remember that my little girl won’t be my little girl forever. I try to take her shopping with me to the grocery store, and running errands. I don’t do this often enough, but I find that she really enjoys mommy-daughter dates, and daddy-daughter dates. Even if I have plans to be somewhere Friday night, my husband and my daughter stay home. They watch kid’s movies and eat goodies. Usually our son is already asleep. So they have one on one time easier.

Asking for help. If your pride is in the way, GET OVER IT ALREADY! There is no way you will survive being a special needs parents without asking for help. There’s just no way. We are Jehovah’s Witnesses and our friends bend over backwards to help us with whatever we need. Having a great group of friend who are reliable is crucial.

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How to survive your child’s hospital stay

My husband and I spend a lot of time at the hospital with our son. At this very moment, we have been in the hospital for 6 days. Conner will be having a pacemaker put in tomorrow morning. Whether your child is sick or has special needs like our child, at some point you will be forced to temporarily move on in to the chaos.

It’s best to remember to stay positive. If you are instantly negative, time will pass much slower! The best way to (somewhat) enjoy your stay, is to devote time to making yourself at home. Here are a few tips to help the time pass for you and your child.

First, you will want to make sure you pack the essentials. If your child is still in diapers, don’t worry about packing too many. Usually hospitals provide, diapers, wipes, shampoo, lotion, and brushes. If your kid has sensory issues like Conner, make sure you pack everything they need to stay comfortable.

Second, it is also a good idea to contact the admissions office ahead of time to let the nurses know what they need; to be prepared for. In Conner’s case, he needs a special bed that is mesh (like a playpen) because of his seizures. If your child is G Tube fed, make sure you bring a couple of boxed formulas with you and your pump. Just incase it takes a while to get his/her supplies together.

Third, there is a program called “Child Life”. For those of you newbies, you will find that child life is a huge help when it comes to you and your childs comfort. Usually when children are admitted to the hospital they are required to receive an IV for quick medicine access or for other reasons. There are a few tricks that can help keep your child to stay calm during this process. Usually child life will already be aware of these tricks, but just in case, I’ll tell you them anyway (just because I’m awesome)!

STAY CALM

1.Numbing cream (LMX) applied 30 minutes prior to the poke. The cream will be taped down.

2.Sensory confusion with vibration. There is a device called “Buzzy” that is made for this specific purpose. Here is the link to learn more about it. http://buzzy4shots.com/ . At our current hospital, they don’t actually own one. Instead, Child life came to the rescue and found a vibrating back massager, which worked just as well! Usually you will want to hold the vibrating device right over the area that will be poked. Hold it there for about 5 minutes before poking. Remove the device just seconds before the needle is placed.

3.Distraction is a huge key. I have an iPad mini, but usually Child life already has one on hand. We play either cartoons or a calming apps. Here are just a few that Conner likes “Soothing” (by fisher price) “magma” (by sensory). Try to keep the staff that’s assisting, quiet and calm so your child doesn’t sense fear.

Sleep is ALWAYS an issue while staying in the hospital. Make sure you pack a sleeping mask (that’s comfortable to sleep with) and ask the nurse for ear plugs. These are MUST haves!!!

When you are bored, and trust me…you WILL be bored. Here are some ideas to keep you busy.

1.Start a new TV series on Netflix either you will need a tablet or laptop for this.

2.Decorate your child’s crib area with bright crafting paper (ask a nurse to help)

3.Get addicted to Pinterest! (Duh!)

4.Read a new book

5.Ask “Child life” or a nurse to show you where the board games are kept. (obviously you can only play a board game if your child is old enough or you have a partner staying with you)

6. Ask for some BUBBLES! These are really fun for adults…..I mean kids….

7.Check out a movie (Ask “Child life” for help)

8.If your child is still small enough. Ask the nurse if they have little push wagons. This is something we do with Conner every hospital stay and we all really enjoy it. Sometimes, if the sun is out, you can even go outside in a designated area! (Oh yeah, I forgot how much I love fresh air!)

9. Craft a huge card for all of your childs nurses to sign and take home.

Having a notebook is a huge life saver while in the hospital. I have found myself dumbfounded when the doctor is done speaking and they ask the famous question “So, do you have any questions for me?” and I sit there staring at the floor trying to remember the 50 questions I had floating around somewhere in my head. I bought a notebook at the gift shop the first time Conner was in the hospital. I organized my questions like this:

Example

(Q) How long after the procedure can he go home?

(A)

Leave a couple of spaces in between so you have enough room to write the answer before you jot down the next question. Doctors are usually impressed by so many questions. It makes them feel like they need to be on the ball more, and it helps them view us more seriously. (or so I have noticed)

I hope I have helped in some way! I hope that none of your children have to stay in the hospital, but obviously you are here for a reason, so I am sending *HUGS* to all you caretakers. STAY POSITIVE for yourself, and your child.

Here are a few pictures of my cutie bug in the hospital. Sometimes he is miserable but about 90% of the time, he is one happy camper!

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