Introduction and a few questions.....

[Laura in NC]

Hi everyone,

I am a long time lurker and I used to post on the old boards when they used to be flipped.

 

I am the mom of 3 wonderful blessings who all have some special needs. My oldest, dd11, has Cyclic Vomiting Syndrome and head migraines, my middle child, dd10, was just diagnosed with Mitochondrial Disease, and my youngest, ds8, has Hypotonia and was just diagnosed with Dyspraxia. Life in our house can be a bit wild at times between therapies and dr's appointments, as I'm sure you all understand. My middle child receives OT and my youngest is in PT and tutoring.

 

My main question is I'm a bit lost on what to do use for math with ds8. We have tried Saxon and Singapore but he was just lost and confused with both of those. Do you all know of any good curricula for math for Dyspraxia kids? His tutor is working with him on writing his numbers, as he writes a lot of them in mirror image and upside down. We are using the HWOT program and his tutor is also. For reading, he is using Read, Write, and Type and a few other things his tutor has started him on.

 

I'm so excited to finally join in here. Now I just need to figure out how to do my signature.

 

Thanks

 

Laura in NC

[Dobela]

I like MUS and Rod and Staff at that age because they have so much practice built in for mastery. I also like that their pages are simple and don't have lots of distractions (like unnecessary illustrations and such).

[Misty]

I remember those old boards!

 

For math, I like RightStart Math for that age http://www.alabacus.com

 

Have you tried adjusting your dd11's diet for her migraines/vomiting? My 10yr old daughter's migraines went away after we removed gluten. She had a few vomiting episodes from her headaches and ended up in the ER once having an MRI when she woke up with a migraine one morning and vomited.. But since removing gluten almost two years ago, she has not had a single headache.

[Laura in NC]

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.

[Ottakee]

Welcome. What mito issue do you have? My 15dd has POLG 1, LHON and TK2. My 14dd has POLG 1 and LHON.

 

For math, esp. 2nd grade level and up I really liked the Christian Light Education math. The 10 workbooks a year just seemed a lot less stressful for them and there was enough review but they REALLY learned the topics as well.

[Laura in NC]

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.

[Ottakee]

Have you checked into Children's Special Health Care services? It is like Medicaid to pay for stuff for special needs kids that your insurance doesn't cover. VERY helpful. Did they do the blood tests for mito? We found some of ours that way.

 

She sounds a lot like 14dd's history. We don't have the vomiting but most of the other things.....including seizures (migraine seizures).

[Laura in NC]

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]

Our CSHCS comes through the local health department. They even pay mileage to doctors, etc.

 

Our doctor has suggested a HIGH fat, lower carb diet for mito. We are going to try it more but right now we are in the process of moving and just can't do it right. The fish oils and coconut oil really help as well. Have they checked the carnitine level? My girls are on Carnitor as well as the CO-Q 10 supplements, a B-100, and a good multi-vitamin.

 

We don't have as much fatigue as we did. Some seizure meds though gave us more fatigue than others as well. Right now Lamictal seems to be best and 15dd is also on Keppra XR with it.

 

We also have ADHD, and psych (mood) issues as well as part of the mito issues.

[Laura in NC]

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.

[gardenmom5]

My oldest, dd11, has Cyclic Vomiting Syndrome and head migraines,

Laura in NC

 

I can so sympathize with that. Do you get on the CVS association website?

 

My oldest son was diagnosed with CVS/abdominal migraine when he was a similar age-it was miserable until we were finally able to control it. I ended up educating many of his Dr's. the thing that made me the nuttiest was medical personal constantly wanting to label it as "just" a "headache". Uh, no. (besides, it wasn't his head that hurt). I know women with migraines requiring IM narcotics who experienced significantly less pain and nausea, and no dehydration.

 

I'm very grateful we were eventually able to link it to a minor spinal fracture that was pinching a main nerve. after ongoing treatment for the pinched nerve, he became asymptomatic. if we stopped treatment, symptoms returned, but no drugs. whoohoo. Now he's stopped growing, we've been able to stop the treatment with no return of symptoms.

[Laura in NC]

I can so sympathize with that. Do you get on the CVS association website?

 

My oldest son was diagnosed with CVS/abdominal migraine when he was a similar age-it was miserable until we were finally able to control it. I ended up educating many of his Dr's. the thing that made me the nuttiest was medical personal constantly wanting to label it as "just" a "headache". Uh, no. (besides, it wasn't his head that hurt). I know women with migraines requiring IM narcotics who experienced significantly less pain and nausea, and no dehydration.

 

I'm very grateful we were eventually able to link it to a minor spinal fracture that was pinching a main nerve. after ongoing treatment for the pinched nerve, he became asymptomatic. if we stopped treatment, symptoms returned, but no drugs. whoohoo. Now he's stopped growing, we've been able to stop the treatment with no return of symptoms.

 

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.