Update on Conner: 9/9/15

as some of you know Conner was airlifted to his main hospital four hours from home. On August 11th. His pediatrician found a collection of fluid behind his pace maker (that he had placed back in December 2014). His skin around the incision site had healed but then began looking infected with a red swollen look around it. We were concerned already from the skin irritation but even more so when fluid was found. So he immediately was flown away.

After ultrasounds, X-rays and blood tests, the doctors decided to start Conner on a big treatment plan of a couple of different antibiotics via IV. He later received a PICC line because of so much use of the IV. The plan was to keep him on IV antibiotics for a 6 week course and no chance of going home. The infectious disease team have a very difficult time knowing for sure if that fluid collection is an infection, sadly there isn’t a real way to tell besides the fact that his skin was very red and irritated. Also his CRP levels were high (checks the inflammation in the body, very non specific). 

To add to everything, Conners seizures were completely out of control! He was seizing every 10-15 minutes and given his versed (seizure rescue med via nasal spray) multiple times a day. We decided since he is already in the hospital why not try the keto diet (special seizure diet, LOOK IT UP). It has worked wonders already. After weaning him on to it (over a 3 day course) we already saw improvement. He was 9 days completely seizure free. 

After a few weeks of antibiotics his irritated skin cleared up but left a scar. The repeated ultrasound showed less fluid collection. It went from 3.5mm at beginning of admission to 1mm after 3 1/2 weeks. But weirdly, after everything began looking better, Conners CRP levels (inflammation blood test) came back higher and higher and higher. 

We feel as if we are on an episode of “House”. None of this makes sense. Everything is looking better, but he is obviously inflamed somewhere inside his body. The nurses and doctors always remind me “Conner is more complicated than most kids”. Isn’t that the truth. Tuberous Sclerosis stinks! 

Conner has been on the Keto Diet now for about 2 weeks and it’s going great. He has had a few break through seizures (very small partial seizures). I’m just so grateful for this diet. Conner feels great and he can finally be himself!

Conner is admitted to one of the best hospitals on the west coast. Somehow though we still can’t figure out what is wrong. We are on day 27 of 42 for his antibiotics course but now that this inflammation thing has become a problem, Infectious Disease team won’t want to send him home with his CRP level so high. Looks like we are staying here forever… 

 

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Time to Upgrade yours child’s immune system

Time to Upgrade yours child’s immune system

Sometimes our computers pick up virus’ that can slow down it’s thinking. The best way to keep this from happening is to download a good anti-virus. The same can be likened to your child and self! We can easily pick up nasty germs from grocery carts, door handles etc…Here are a few ways to upgrade your child’s “anti-virus program” Immune system.

  1. Enough Sleep.

There is an old wives tale that says “If you don’t sleep well, you will get sick” This statement is actually true! Our immune system is designed to protect us from colds, flu, and other ailments, but when it is not working properly, it fails to do its job. The results can be awful!

“A lot of studies show our T-cells go down if we are sleep deprived,” Balachandran says. “And inflammatory cytokines go up. … This could potentially lead to the greater risk of developing a cold or flu.” What are T-cells? It is a cell that participates in the immune response.

Not enough sleep can suppress immune system function. So try putting your kids to bed maybe a little earlier? And if you haven’t established a bed time routine, you’re crazy! LOL

  1. Essential Oils.

Thieves’ oil. Thieves is a blend of essential oils including Clove, Lemon, Cinnamon bark, Eucalyptus and Rosemary. I rub 2-3 drops undiluted on the bottoms of our feet daily. You can also diffuse it! Here is the link to go get some delivered to your door! It is called OnGuard through this website. http://www.doterra-aromatics.com/products/blends/onGuard.html

3. Probiotics.

Our bodies are filled with billions of types of bacteria that help fight off infections and maintain healthy organs. Consuming the right kind of bacteria can actually help your immune system. Probiotics are a good bacteria that can benefit you in a lot of way. What foods are filled with probiotics? Organic yogurt, Miso, Kefir, Kampuchea, Fermented Cheeses, and Fermented Vegetables are some of the foods I am aware of.

  1. Fruits & Veggies.

Here are a few great foods to eat with great immune system benefits. Kiwi, Garlic, spinach, carrots, mushrooms, sweet potatoes, and berries.

It’s obviously difficult to get our kiddos to eat just anything. My favorite way to get my little one to eat them is by only setting their veggies and fruits on the plate first. They must eat all of their veggies and fruits before they receive the rest of their meal. Obviously everyone has different likes and dislikes. I don’t believe in pushing children to like something they just don’t. I have my likes and dislikes. I wouldn’t like anyone telling me I have to eat something I hate, but there is a limit. If your child is straight up rejecting quite a few fruits and veggies just keep offering it. Don’t make a huge deal, and make them feel bad for not eating it. This can result in the opposite of the direction you would like to go.

  1. Toss those chemicals!!

Prolonged and excessive consumption of refined sugars and highly processed foods containing pesticides, chemical additives, and preservatives can weaken the immune system and make you vulnerable to developing chronic conditions.

A study published in the American Journal of Clinical Nutrition found that the ability of white blood cells to kill bacteria is significantly hampered for up to 5 hours after eating 100 gm of sugar (equivalent to three cans of sweetened soft drink).

So go walk to your kitchen and toss that crap stuff away!

  1. Get moving!

When you exercise regularly with your kiddos, there are a number of things that benefit yours and their body. Your heart gets stronger and is able to pump more blood throughout your body when you exercise. Your lungs get better equipped at handling oxygen and dishing it out to the rest of your body. Your muscles also get stronger as you use them more often. Your child’s immune system is no different.

Doctors have found that exercise can boost your immune system by providing a boost to the cells in your body that are assigned to attack bacteria. These cells appear to work more slowly in kids who don’t exercise than in those that do.

  1. Vitamin D

You may find it surprising that vitamin D is so important for your health, especially if you’re still under the impression that it’s mostly a nutrient for your bones. Most people also think that vitamin D is really a vitamin, but in reality, the active form of vitamin D is one of the most potent hormones in your body, and regulates more genes and bodily functions than any other hormone yet discovered. Vitamin D is produced as a pro-hormone in your skin after sunlight exposure, and is then converted to the potent hormone form. Without this hormone, you could die, and indeed, many do die from vitamin D deficiency-related causes.

A Japanese study showed that school children taking vitamin D3 supplements were 58 percent less likely to catch influenza A. That’s a higher effectiveness than any flu vaccine can claim, and doesn’t come with a barrage of potentially devastating side effects! And there are numerous studies like these, showing the superior effectiveness of natural strategies like vitamin D in the prevention of disease.

  1. Get those hands clean.

Keeping hands clean is one of the most important steps we can take to avoid getting sick and spreading germs to others. Many diseases and conditions are spread by not washing hands with soap and clean, running water.

  1. Play in the dirt.

Exposure to dirt and other microbes make our immune systems stronger. It’s okay to let your toddler eat dirt and kiss the dog. A new mouse study suggests early exposure to microbes is essential for normal immune development, supporting the so-called “hygiene hypothesis” which states that lack of such exposure leads to an increased risk of autoimmune diseases. The study found that early-life microbe exposure lowers the number of inflammatory immune cells in the lungs and colon, lowering susceptibility to asthma and inflammatory bowel diseases later in life.

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Mommy needs quiet time

Definition of QUIET TIME: It’s the time when Mommy’s blood is turned down to simmer.

I am a mother of a 4-year-old and a 2-year-old special needs child. I also suffer from CD, so quiet time, for me, is a must. Every home/family is different, but reading this will show you how important it is for you and your child to have quiet time, and how you can accomplish it. Use that time to do whatever your heart desires. Get some rest, watch some TV, or read. Whatever, but this is YOUR time. HAPPY QUIET TIME!

First of all, just because you are feeling in desperate need of quiet time, does not mean you are a bad parent. You need to let go of the guilt and realize that having a break is necessary because you can regain your patience. Have you noticed, some days with your kids just make you so impatient that you just automatically start answering “NO!” to everything? It time for a break… Children also need quiet time for them to relax and wind down a bit.

What is my strategy?

CONSISTENCY & ROUTINE…It is best to start training your kiddos as early as possible. I knew from early on, with my first child, that I had to establish a break for myself daily. Stick with your quiet time plan!

Most children refuse to take naps, but I make it inviting. I say something like “Lacie, you don’t need to take a nap, but you have to play quietly. Maybe do some puzzles or color?” Because my child is so used to this being a daily thing, she knows what quiet time means. I bring her into her room with a Sippy cup of water. I tell her to please play quietly so Mommy can rest. She knows the only reason she comes out of her room is to go potty or if something is wrong. Usually I will take this opportunity to take a cat nap. If she does end up needing the bathroom, she will stand at her door and yell “Mom can I go potty?” “NO!” Just kidding LOL.

Because my delayed son is so well-behaved, I can put him in his play pin for an hour with a few toys and he will be so happy!

I know Lacie is safe in her bedroom because it is childproofed. Plugs covered, windows locked etc…I know she is safe. Of course you wouldn’t want to do something stupid like stick ear plugs in to sleep, you need to be able to hear if anything happens while you are napping or relaxing. I am a very light sleeper but I also have a baby monitor hooked up to hear if she opens her door.

I hope you find this strategy helpful, please comment below if you have found other ways helpful! Thanks for reading! Please follow & share… 

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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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Put your baby to bed, the right way…

Baby sleep solutions:

“Babe, can you please get up this time?” I am sure these are famous words by many of you parents out there, enduring through sleepless nights.

Enough is enough…time to put your baby to bed, the Right way…? There really is no RIGHT way…but here are a few ways to help the process.

Are they hungry?
After a baby turns 1, they normally don’t need to be fed during the night. If they are used to you giving them a snack during the night, they will most likely continue waking up expecting their snack. Try to feed them enough before bed. If they don’t have much of an appetite, try giving them a bottle of formula/milk before bed. If they wake up, give them a bottle of water. They will usually get upset. That is okay. They need to learn they will only get water during the night. They will no longer wake up hungry after a few nights of this routine. This is a personal tip. I did this with my daughter. She began sleeping through the night, 2 nights later. (of course this does not apply to children who are under weight, or sick)

Did the Pacifier fall out again?!
Don’t get me wrong, that first year with Paci is wonderful. They start fussing and “Boink!” In goes Paci and out goes fussy! There comes a time when saying bye bye to Paci is brilliant. When they start regularly waking up because they miss their Binkie, this would be a perfect reason to let go. Try the broken routine. Throw the Binkie in the trash. Show them, and say it’s broken. My mom actually did this with me, and it worked great so I did it with my daughter it worked like a charm. This seems to work about 80% of the time. What can you do if it’s broken? Hopefully they don’t question it…

White noise
I have used white noise with both my kids. It works perfect! Studies have found that white noise turned up too loud or too close could impact your child’s hearing. As long as the machine is placed across the room, and set to a moderate volume, I think you should be fine. Use your own judgment on this one. I have found it very helpful for my kids to sleep, and myself!

Have a simple routine
Remember that no mom is perfect. Your child doesn’t have to be bathed EVERY night. Unless you are a clean freak (I know a few!) Call me lazy all you want, but when your life is as chaotic as mine, priorities seem to be different lol. A warm bath can get them pretty tired but if you’re like me and just want to get them to bed here is my advice… Try to set a goal to have at least one regular routine that says it about time for bed. This could be reading a book, singing a soft lullaby, rubbing your kiddo down with lavender lotion, giving them some Benadryl (JUST KIDDING!) Just a signal that pushes them in the right direction.

Separation Anxiety
Every parent is different. If you want your children to sleep with you forever, fine! I, however, have never been able to sleep with my kids in my bed. For me to be a good mom, I need my sleep. If your child is learning to sleep in their crib/bed alone, obviously make sure you invest in a dim night light. Here is how to break this anxiety.

1st night: Put your baby in their crib while they are sleepy but still awake, and then sit in a chair next to them. If they get upset, softly pat her back and give verbal reassurance. Stair at the floor, read your own book, get on Pinterest (lower the brightness). Do not make eye contact. They will try to get your attention which will make the process longer. Do not leave until they are asleep.

2nd night: Move the chair to the middle of the room, again do not
make eye contact. Wait to leave until they are asleep.

3rd night: Move the chair to the door. Remember, no eye contact. Leave once they are asleep.

4th night: Keep the chair at the door but this time leave just before they are falling asleep.

THIS ADVICE IS NOT FROM A PROFESSIONAL, IT IS MERELY BASED ON MY OWN OPINIONS AND ADVICE FROM MY OWN EXPERIENCES. PLEASE ASK YOUR DOCTOR ABOUT ANY OF THESE TIPS YOU MAY WANT TO TRY. THANK YOU

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