Moving blog..

I am moving L's blog to Caringbridge. Here is the site...

http://www.caringbridge.org/visit/lillya

Thanks. Hope to see you there. 

Got orders and new meds...

I have to say again, I love L's Mito dr. We have had all orders and prescriptions in hand. We are going to try Elavil for her abdominal migraines. Poor kid has had 3 in the past week.We also have a special compounded cream for her leg pain. We got lab orders so we need to get those done soon. I'm sure L will be real excited about that. Once we get her labs back, we will start on a Mito cocktail. I think that is all for now.

Update....

We got home from Atlanta on Tuesday. It was an awesome appointment with our new favorite doctor. We found out a LOT of info and ways to help L. First of all, I have to say, her new Mito dr. is wonderful!! She has the most caring, compassionate, and loving spirit of any dr. we have ever met with. She has a true heart and soul for helping people. She spent 2 hours with us helping us help L. I have been telling everyone what an answer to prayer she is. She answers my emails within a couple of hours also. We walked away from our appointment with such peace having someone on our side to help L. It has been a huge relief to know she is walking along with us through this journey. She is the best!!!

Here is what we learned at the appointment:
L has an official clinical diagnosis of Mitochondrial Disease. She is no longer mild but is now in the middle of the spectrum with symptoms and progression.  Our job is to keep her as stable and well as possible. This does include quite a bit of supplements and medicines. The dr.explained it so well to us. Everyone is at a baseline of mitochondrial function. During times of sickness and physical stress, most people's body can tolerate that stress fine. People with Mito cannot jump to the next line of stress without a lot of support for their systems. Her systems would begin to shut down without this extra support. We have seen her gut do this when she is sick or her body is under any kind of stress. She will now be on daily medicine for her abdominal migraines to cut down on the stress of those on her body. Another thing we will be doing is giving her corn starch mixed with water at night to keep her blood sugar up at night. We have been checking it and it is very low in the mornings so this should help keep it stable. The dr. is also going to be doing some testing. We hope to find out what complexes she has from these Buccal swabs. She is also going to be running blood tests every 6 months to see where L is in progression. The dr. also gave us protocols for school next year, the ER, and for surgical procedures if we need them. We will Skype with her in 6 months and return to Atlanta in a year. If she begins progressing fast, we will return to Atlanta before a year. She is going to work with our Pediatrician here when L is sick or in the hospital. She also wants L to see a Cardiologist to check her heart since a lot of Mito patients have heart issues. We may also go see a GI dr. for L's motility issues. We are going to Duke for her Dermatologist appointment on the 22nd. The dr. said her rash/hives could be autoimmune so she said it's a good idea to go ahead and get it checked out. We asked about her red dye reaction also and she said what could be going on is that the red dye is causing an inflammatory response in her brain.  She also said we need to keep her electrolytes up because she's having Autonomic symptoms such as purple skin and heat intolerance. The fluids and electrolytes should help with that. We also have a plan for pain management for her pain. We covered quite a bit in those two hours. 

It was a great trip. She has had a few abdominal migraines and fatigue the past few days. Right now we're using Zofran until we get her daily medication. We're trying to get her the rest she needs but she's still really tired. She's also really thirsty lately so we're trying to keep up with her fluids. I"m thinking it's the heat but we're keeping an eye on her. If she starts looking worse, I'll probably take her in to her ped.

I think that's it. I'll try and update again soon. 

More issues, more meds...

L developed a sinus infection last week. We had a feeling that was coming. She got on antibiotics for that one. The day after that diagnosis, on Saturday, she broke out in her hives/rash thing that she gets whenever her body is under any kind of stress. She also had nausea so she had to go back on Zofran. It got worse so on Monday I took her in to the pediatrician. She started on Prednisone and some topical cream. We also talked about her incontinence issues again. They said give it a few weeks.

On Tuesday, I was talking to L about her incontinence issues. Apparently, they have been going on for a few months but she kept forgetting to tell me. They were not clearing up by Thursday of this week, so I took her back in, since it's been going on for so long. She's on some new meds for her bladder. She asks me every day when we're going to Atlanta to see her new Mitchondrial doctor. She has had really bad fatigue so she's taking lots of naps lately. She's had some muscle pains and requiring more fluids through all of this also.

Our other two, C and O, are suffering from allergies right now. Allergy medicine is going quickly in this house due to itchy eyes, yucky throats, and stuffy noses. 

I hope to get some pictures up of all the kids soon. We don't have much planned this weekend except for rest and relaxation. 

Trip to the dr. update

I took L into the ped. today because she was coughing all night long. She's now on prescription cough medicine and Pulmicort to help her cough and chest. She'll have to get antibiotics if it continues for another week.  She's pretty miserable but she's hanging in there. Hopefully it will clear up soon.

I also spoke to her ped. about her motility issues. She is increasing her Miralax to twice a day. We're hoping that helps move things along and get her stomach feeling better.

Hoping for some sleep for L because her body needs it so badly. Please pray she gets some relief from the coughing.

Update from the past few months....

Wow!! It's been so long since I've updated. These past few months have been times of health and then health crashes.

L has her good days and her bad days. Her Cyclic Vomiting Syndrome was confirmed again by her Neurologist. He has her on the Zofran when it hits, which is about once every 2-4 weeks. It's always at night. Usually, she will not eat for about 3 days after so she will drink Gatorade and Ensure. After about 3 days, she will slowly get back to eating regular food.  If it gets worse, she will have to go on daily medication.

A new symptom that has come up is hives/rash every time her body is under stress. It itches and is painful. It's splotchy and little bumps. Usually Benedryl or Hydroxyzine will clear it up.. Right now she's on Predisone because nothing was giving her relief. Sometimes we have to use the steroids but her pediatrician is trying not to put her on them too much. We aren't sure if they are hives or an autonomic rash. We have an appointment at Duke with a Ped. Dermatologist but we may be heading to Atlanta to see a Mitochondrial specialist there. We are still trying to get things set up and make decisions. Here is a picture of the rash...

L is has also been experiencing slow motility these past few months. We are trying a few things like Miralax but we aren't getting great results. The slow motility is causing a distended stomach and lots of other issues. I am going to talk with her pediatrician next time I take her in.  That may be tomorrow because she has developed an awful cough that is not getting better.

I will try to get better at updating. Life has gotten so busy but hopefully the summer will calm it down a bit.