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… 

 

Delivery food to the hospital?

“My carrots taste like plastic…” Yes, those words have flowed from my mouth. Yuck. There is nothing worse than being stuck in a hospital and even worse when its your child’s admission. Completely speaking from experience (I am in the hospital with my son as I am typing this). You have to take care of yourself in order to take care of others. It’s hard to feel at home in a hospital but there are ways to make you feel more comfortable. I don’t know about you but good food that warms my belly, warms my heart.

I recently discovered an app called EAT24. Available via App Store. This app is amazing! If you don’t believe me go download it right now, and see for yourself. It’s free, and you can type in what you are craving. The customer service is amazing. If my food hasn’t arrived or I have a question, you can quickly ask via chat window and a very friendly person will help you.

I actually pay around the same amount I would if I were buying food in the hospital cafeteria, for food that is gross and repetitive.

Here are the steps ( to make it easier for you, because I care lol)

1. Download EAT24 from App Store

2. Make sure your privacy setting let the app find your location ( or manually type it in)

3. Select which restaurant you want to order from, then select delivery

4. Once you click check out, a window will pop up showing what you are about to order. At the top there is a box you can type in. This is what my message says “Once in lobby, please call 555-555-5555 and I will come down to you.” Usually delivery guys can’t come straight to the room. So it’s best to give them those instruction, just make sure your cell phone volume is up…(I learned the hard way lol)

5. You can choose your method of pay. Debit/Credit, PayPal, or cash.

6. Once you submit your order, you can click “check order status” and it will show a timer so you know how soon your food should be coming.

7. If for some reason things are taking longer than they should, click the button under the timer that says “ message EAT 24” and someone can check on it for you.

Hope I have helped your stay at your “Home away from home” just a tad more comfortable! Enjoy…

  

I hate seizures so much

Such a sad week, Conner’s seizures have become worse. He now is having 3-5, 1-2 minutes grand mals 70-100 infantile spasms a day. He desaturated during his grand mals, and is now foaming at the mouth with these ones. I haven’t needed to give him his emergency med yet but I can tell they are getting worse. It takes him quite a while to breath normal again afterwards. Please keep us in your prayers. We need as much strength as ever right now. Thanks everyone for keeping up with him through his page http://www.facebook.com/HopeforConner  He is so strong..

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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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When is a head ache, not normal?

When is a head ache, not normal?

When is it time to see the doctor or take a trip to the emergency room? Read below to find out what’s not normal…

1. A stiff neck and fever could be a sign of meningitis..
2. Severe nausea or vomiting and any neuro-deficit (such as difficulty speaking or walking), which could be signs of a hemorrhagic stroke
3. If you have a headache after hitting your head or being in a car accident.
4. You have tension headaches, migraine headaches, or cluster headaches and you have to take over-the-counter pain medication frequently or in high doses.
5. Your experiencing muscle weakness or numbness in a limb, changes in speech or vision changes.
6. You are feeling disabled by your pain and are having trouble living a normal life.
7. Your headaches are getting progressively worse.
8. Your headache is associated with seizures.
9. Your headache is extremely severe, and you call it “The worst head ache ever!”

Please seek professional help if you are experiencing these symptoms.

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