I hope that you get answers soon. We searched for 11 years for dd11 as to why she was having all the issues she has. We finally found a dr. who put together the "puzzle". I will be praying for you and your family.

This past winter ds9 decided to jump off dd11's large dollhouse. He ended up flying into the wall and moving the bones in his nose sideways. He had to have surgery to fix it. Thankfully he had his ENT dr who has done 3 previous surgeries on him so we knew he was in good hands. It takes 12 weeks for a broken nose to completely heal we found out and ds9 is a daredevil. Our dd11 needed stitches twice in her forehead. The second time she did in her sleep. She somehow hit her head on the end of her bed while sleeping. She woke up crying. This was around 3 years old. DD12 hit above her eye on the edge of the floorboard in our hallway. She was chasing her sister. I think she was around 6 when she did that.

Yep. Our 11 year old was diagnosed with presumed Mito last year. A friend of mine reads their blog and after I told her my dd's symptoms she asked if we had ever gotten dd looked at for Mito. So we had her seen by a metabolic dr and had some testing done. Noah and their blog helped our family find answers after looking for 10 years. I will be forever grateful to them for that. We would still be trying to put together the "puzzle" of symptoms she has.

When we had Aetna I got a card from Health trans. It's free and it has saved us a lot on our prescriptions. I picked up a card at our local urgent care but it looks like you can print off the card from their site. They even pay a lot on our dd11's Zofran. Here is the website: http://www.prescriptiondiscount123.com/ Hope this helps.

We just got new health insurance through BCBS. We had Aetna through my husband's work and it was awful. We were paying 400.00 a month for them to deny pretty much any claims we had. So we did some research and got a plan for 655.00 a month for the 5 of us. Our dd11 has a pre-existing condition and I am overweight but they gave dh a healthy lifestyle discount. It ended up the amount we wanted to pay. Our deductible is higher than some but it's cheaper than us having to pay for everything that Aetna denied. Also, the hospital where our dd11's metabolic dr is, will not take Aetna. Some of the Urgent Care's here will not take Aetna either. That influenced our decision to seek out our own insurance. I hope you find something that works for you. I understand about insurance issues as we've dealt with them for the past few years and it's not fun at all.

Lisa, I am praying for you and your dd. I hope that you can get in sooner. I understand the waiting for answers. We are right in the middle of it with our dd11. She got a presumed diagnosis last year but no help on what to do for it. So we're heading to Atlanta in June to see a specialist for her disease to hopefully help us. Every day she asks me when we're going to see her new dr. She is having new symptoms pop up quite a bit in the past 6 weeks and she's just so tired of them. You can read her story on my blog if you're interested. Please know that I'm praying for you and that you get the help your dd needs.

My kids loved Oswald when they were little. It's a sweet show. Another great show, that we still love, is Kipper. It's so relaxing and sweet. Dh and I love watching it with the kids right before bedtime and giggling with them.

Mayo for me, MW for dh. MW is disgusting to me. The kids and I prefer Trader Joe's organic mayo. We don't use a lot but when we do, that's our favorite. This has been a long-standing argument since we dated. :)

I am praying for you and your dd. I am so sorry you all are going through this. Our dd11 is showing symptoms of Dysautonomia also and that's the first thing I thought of when you mentioned your dd's symptoms. My dd is always hot or cold but never regulated. Her blood pressure is lower than normal also. She also develops a rash/hives every time her body is under stress due to illness, season allergies, etc. which her Ped. thinks is an autonomic reaction. Please keep us updated. I will continue praying for you and your dd.

Our son is Owen Christopher. It was going to be his middle name but we decided we loved it as a first name. It fits him perfectly. I don't hear it used too much. It does have family significance for us so it's special to us in that way.

I am so sorry this happened. My son broke his a few weeks ago. He jumped off his sister's dollhouse roof and hit the wall with his nose. We went to the ER and they said there was a crack and sent us to his ENT. The ENT had to surgically repair his nose due to the bone lying on top of the other bone. He did say it takes about 12 weeks for it to completely heal after.

My girls both suffer from Cyclic Vomiting Syndrome. My dd10, who has Mitochondrial disease, was just recently diagnosed with it. They both take Zofran when an episode hits. They have both been treated in the ER and hospitalized for it. My girls dehydrate quicker than kids without it so we have to be extra careful during viruses. I've heard that's the case with a lot of people with Cyclic Vomiting. My oldest, dd12, now gets it in her head more than her stomach. DD12 was diagnosed with it at age 5 and we discovered that excitement sets her off or something that makes her nervous. She used to be on Periactin as a daily med because she could not function without throwing up. That helped a lot. We haven't figured out what sets dd10's off but it could be related to her Mito. She seems to be going through a cycle about every 2 weeks. Her neurology dr. that treats her seizures is also a Cyclic Vomiting Syndrome specialist. So you may want to try and find a neurology dr. to treat it. I'm so sorry you all are going through this.

This week I got two books read. I read Finger Lickin' Fifteen and Sizzlin' Sixteen by Janet Evanovich. They were light and funny, something I needed after a week of sickness last week. I began The Passage by Justin Cronin for this week. I cannot put it down and am loving it. My 2012 list: 1. Hunger Games by Suzanne Collins-hope to read the other two soon 2. Winter Garden by Kristin Hannah-this became one of my favorite books 3. Little Earthquakes by Jennifer Weiner 4. Finger Lickin' Fifteen by Janet Evanovich 5. Sizzlin' Sixteen by Janet Evanovich

I hope you don't mind me joining you 3 weeks late. This week I'm working on Finger Lickin' Fifteen by Janet Evanovich and Fly Away Home by Jennifer Weiner. My 2012 list: 1. Hunger Games by Suzanne Collins-hope to read the other two soon 2. Winter Garden by Kristin Hannah-this became one of my favorite books 3. Little Earthquakes by Jennifer Weiner I'm excited about reading 52 books this year.

I am. I just started eating gluten free and I am already seeing a difference.

I had a pain in my side/ribs like this for months. They did the gallbladder tests and everything kept coming back normal. After that, my dr. decided to send me to a GI dr. The GI dr. did an endoscopy. The first thing he asked me when I woke up was if I had reflux. I had reflux for a long time not even connecting it to the pain in my right side/ribs. It turned out to be a Hiatal Hernia and Gastriritis. He put me on Prevacid and as long as I take that, the pain is gone. I hope that you get answers soon. I'm sorry you are having to go through this.

I love hearing stories of how couples meet. My dh and I grew up together in church. We became good friends in the youth group and had lots of mutual friends. When I was a junior in high school and dh was a freshman in college, a mutual friend of ours found out I had a crush on dh. Our mutual friend had a crush on one of my good friends. So our mutual friend suggested we all go out for 4th of July to see fireworks and the rest is history. Our mutual friend and my friend dated a little while but decided to just be friends. I thought dh was super sweet when he thought to bring an extra Coke for me that night. Our parents have also been friends for as long as I can remember. We dated for 2 years, then became engaged, and married a few months after that. Laura in NC

My parents come every Monday to hep with therapy and dr's appointments for our kids. It's a pleasurable visit usually and we go out to eat with them that night. My mom and I sometimes take the girls shopping and my dad will spend some time with ds8 working in the yard or playing. They love to go swimming at our neighborhood pool in the summer when they visit also. We see my in-laws maybe once a month, usually birthdays and holidays. Both sets of parents live in the same town, which is 1 hour away. Laura in NC

Hi Mariann, I have the CC Essentials guide, the fold-out charts for Essentials, the Foundations guide, the IEW book, tin whistles, the VP Timeline Cards, and the CD(but you can get those off the community if you join that online). In the back of your Essentials guide, there is a list of the Spelling Plus words and what level they can be used for. HTH, Laura in NC

The CVS site is wonderful. I downloaded the papers to keep track of her cycles of vomiting when she was doing it every few days so we could find a pattern. Hers are now mainly in her head as the dr. said would happen when she began puberty. It was our wonderful(who was a homeschooling mom) pediatrician who diagnosed dd11. We kept being told be the other dr's in that practice that she was getting stomach bugs. When she saw this wonderful dr she immediately knew what it was. We were so glad to finally get a diagnosis. She was on Periactin for about a year and that helped a lot but caused weight gain. So now we're using Zofran for stomach and trying to not let it get bad once they start. I'm so glad you found out what was causing your son's. It is just awful to watch them go through it and not be able to do much for them.

I just checked her lab report and her Carnitine is on the low end of normal so they did not put her on any supplements for that. She's on Tegretol for the seizures and she seems to be doing well on it. Her neurologist actually doubled her CoQ10 to help with her lactate levels. She has not complained of leg pain since doubling it so we think it's working for muscle pain. I want to find a good multivitamin for her. I will try and get her eating a higher fat diet. We are supplementing with Ensure on days she does not feel like eating. Some days she eats great and some days it's like pulling teeth to get something in her.

We have horrible insurance right now so our Metabolic dr. said we can wait for the blood tests since she thinks there are cheaper ones coming down the line. It wouldn't even cover dd's appointment with the Met. dr. but it was worth it to us to pay for it to get some answers. I will definitely check into the Children's Special Health Care services. We have been looking for something like that. Thank you so much for sharing that. It was when the seizures hit that I realized we need to really start connecting the dots with her. It seems every time we fixed something with her, something else pops up. I do have a couple of questions about homeschooling with Mito if you don't mind....I don't want her to get too far behind but I don't want to push her too hard either. We are going to try and take frequent breaks during the day so she doesn't get worn out. Do you have any other suggestions for me to help her? She gets tired and cranky pretty easily. I want to try and have some sense of smooth days as much as we can.

Ottakee, DD10 has not had a muscle biopsy due to insurance not covering it because she's not sick enough. Her Metabolic dr. said she's on the mild end of Mito. She was diagnosed in April of this year after 10 years of searching. Here is what she's gone through since birth(copied and updated from my blog): She was born with dysphagia(swallowing problems) and severe reflux. She was placed on a feeding tube at 7 weeks old and was on that for about a year. She was also placed on Prilosec. She was diagnosed with Sensory Processing Disorder at this time. She was in PT beginning around 8 months old as she had hypotonia. At around 14 months old, she was put into Feeding Therapy. During this time, she also received 2 sets of tubes in her ears. She learned to walk with PT at 18 months and began to have bladder infections around 4 years old. They performed tests and could only find that one kidney was a lot smaller than the other. At the age of 6, she began to have blood sugar issues. She was diagnosed with Cyclic Vomiting Syndrome at this age also. At age 8, we found out she is allergic to red dye. This cleared up a lot of behavior issues once we removed that from her diet. At age 9, she began to have Complex Partial Seizures. Other symptoms of dd10's are running out of energy very quickly, not keeping up with other children her own age, muscle pain, hard time keeping her temperature normal in hot and cold situations, and not being able to fight infections. She gets sick very easily and often. She is in OT now to help with hypotonia in her trunk and hands. She is very tiny for her age and has a hard time gaining weight and keeping it on her. She's now on COQ10, seizure meds, Prilosec, and Zofran as needed. Her labs showed high in Lactate and low in COQ10 in April. I have a friend who I just sold CLE to but it was for 4th grade. I may have a first grade CLE workbook in the attic from many years ago with my girls. I will try that first and see how it goes. Thank you for the suggestion.

Thank you all so much. I will definitely look into those programs. I like the idea of simple pages so it does not distract him. Misty...DD11's migraines and vomiting are usually brought on by excitement or nervousness. She used to vomit every birthday and we finally figured out why. She's starting CC Challenge A on Thursday and she's had 1 migraine this week and stomach aches all week because of nervousness and excitement. We have switched to the Eat-Clean diet and that seems to have helped her. She has had the CVS since age 2 so there's been a lot of trial and error with foods and such. Thanks so much for the suggestions.

My ds8 was diagnosed with SPD from an OT and with Dyspraxia from a vision therapist and tutor. My dd10 was diagnosed with SPD by our county services at 18 months of age. We were referred there by our Pediatrician. I hope this helps.