Migraine

Hi everyone,

Haven't been able to post much lately, but do read as much as possible.

I would like to give you an update on Chuckie's hemiplegic migraines. After a year with a wonderful doctor, we have had to find a new one. Dr. Phan has gone back to school and is not sure if she will be going back to her practice. She recommended a new pediatric neurologist in our town. We had been traveling for 2 hrs to see Dr. Phan.

We met with the new doc, Limbo, last week. Chuckie liked her and she seemed very knowlegeable about hemis. She has increased his nighttime dose of Verapamil. If he tolerates it okay, we will increase his other two doses too.

He is only getting a migraine every 4 - 8 weeks but, they are still terrible when he gets one. The last one only lasted two days, but the one before that was six days with vomiting, eye/head pain, numbness in face and limbs and muscle weakness on the right side.

I'm hoping that the increase in Verapamil is working since the migraine he just finished was so much better than the one before.

I've already got his 504 plan in place for the middle school next year. He is nervous but excited about MS. He is considering taking band and wants to play the saxaphone. I just hope that a room full of kids learning to play instruments won't be a trigger.

He is enjoying his summer break. He swims in our pool daily and has friends over all the time. We've taken a couple of long weekends as a family. We've been to Chattanooga, a water park, a cabin on a lake and kayaking. It's been really nice and only one small migraine to slow us down.

Well, best wishes to all. Migraine free days and the love of family and friends.

Take care,

Yvonne-MigraineMom

Yvonne
How great your son is doing so well. I know you would love to have the migraines gone, especially hemiplegic ones that are so debilitating, but their control sounds so very much better. Chuckie sounds like he is able to enjoy so much like a normal kid, as he should.

How great your doctor had someone to refer you to that your son has liked and seems equally as good. That must have been a huge weight off your shoulders.

Take care and keep us posted. Sucess is a wonderful thing to hear about.

Cindy

Thanks for the update, I was wondering about all the "kids" here!

I hope your summer continues to go well. Enjoy!

Hi Yvonne

Sounds like things are really looking up for Chuckie. I'm so glad to hear it.

I hope the medication increase will continue to improve the severity of his migraines. He sounds like a "normal" kid. Isn't that what we all want for the kids?

Hope you have a great summer.
Jean Ann

Hi Yvonne,

It's terrific to hear that Chuckie is doing well! I'm glad the transition to the new doctor went smoothly..it's always tough to see someone new!

that the Verapimil increase will continue to help!!

Check back again soon! It's always good to read an update from one of our kids!

jenny

Everyone,

Thanks for the replies. Yes, in between the migraines, Chuckie, is able to be a normal kid. Luckily, we have found the right medicine regimen to keep them somewhat under control.

I know stress is not a trigger but, a compounding factor. But, I swear if he has something coming up that he is looking forward to, he will stress himself out that he is going to get one and miss the event and that is exactly what happens. (Not all the time but a lot).

Well, off to work. I would really like to hear updates on all the kids. I think about them daily and include them in my prayers.

Enjoy 4th of July everyone.

Yvonne-MigraineMom

I'm glad he's doing so well and that you've been able to enjoy summer so far.

Hi there. I have read your posts about chuckie with great interest as he sounds very similar to my son who is six and diagnosed with hemilplegic migraine a year ago. He too gets the leg cramps you talked about and a whole range of other symptoms just too long to list. His last migraine was a shocker with 6 days of vomiting and although the motor weakness has completely disappeared he has been very slow to completely recover his speech.

We have a referral to a paediactric neuro and hopefully will get an appointment soon to find out what is going on here. It has been a tough journey but reading about other children with the same thing has been a great help.

Hope you are going well and best wishes for you and your son from us here in Australia

Daisy,

I'm sorry to hear about your son. I thought it was terrible when Chuckie's problems started at age 7. I can only imagine what you have gone through with your son's hemis starting at 4 yrs old.

I hope the pediatric neuro that you are trying to get into will be helpful. If not, keep trying. On October 13th, we are taking Chuckie to Cincinniti, OH for our 7th specialist. Hopefully, this one will be the one. He runs a pediatric headache clinic and talked with our new family doctor for thirty minutes about Chuckie.

We fired our old family doctor because she just didn't have the time that Chuckie requires. We really liked her and had been using her for nine years. But, over the last three years she had made me feel like we were a big inconvience.

If the doctor in OH doesn't work out, we will try the one in Savanahh, GA that is listed on this website but is over 8 hours from us. All the other doctors are about 14 hours from us. We wouldn't mind the expense or the time it would take to travel that far if we knew for sure that they would truly care, take time with us and make a difference in his life.

Again, I'm sorry you have the need for this website but, I'm so glad it is here for you. It has answered so many of my questions and gave me the knowledge I need to deal with doctors, school officials, medications, etc.

If you ever need someone to lean on or vent to, I'm available. Take care and best wishes from Alabama.

Yvonne-MigraineMOm

Yvonne and Chuckie,

Middle School IS a big step. I understand, as 1) all 3 of my daughters made it through (Youngest is now a HS Senior!), and 2) I teach Middle School.

Take advantage of any and all chances to tour the new school and meet your new teachers, Chuckie. Do you prefer to be called Chuck? Let me know! Let your teachers know, too.

Sax is a great instrument to play. My middle daughter started in clarinet, then switched to oboe. She was switched to sousaphone as a HS sophomore, then to baritone as a HS junior.

Youngest started on oboe, then quit band in 7th grade.

Yvonne and Chuckie, this is going to be the best year yet. The meds are working better, it's a new school, there will be new friends - lots of good things happening.

Rebecca, The Island Mama