Myasthenia Gravis Support Group

Is this adult onset myasthenia? My daughter was diagnosed in 08 at 13 yrs and I was told it was unheard of that young- but 7?! I see you live far away from California but my daughter had her thymus gland removed by Dr. Diana Farmer, Chief of the Children's Hospital at UCSF. She did an unbelievable job and was able to use scopes thru my daughter's left side so she has virtually no scars. At the time, April 08, she had already done this procedure about 12 times which made her the most experienced doc we could find. Good luck. Sarah

Hi Daisy :)

My daughter was diagnosed with MG in May of this year. She is 14. She had a thymectomy done at WVU Childrens Hospital in Morgantown, WV. Her surgeon was wonderful !!!! Instead of cuttting straight down her chest like they usually do, he cut under her breasts so the scar would be less noticeable. As of now, her symptoms still have not disappeared. Usually it works, but it just takes time. She was just re-evaluated by her pediatric neurologist and actually the MG symptoms have gotten a little worse. Her left side is much weaker than it was before. But she is dealing with it very well. We still have faith that the thymectomy will work. Her eyes droop VERY bad when she is tired. She has to hold her head back almost touching her neck sometimes to see the TV. She also has double vision sometimes and her equallibrium is off sometimes. When she gets tired, she has trouble chewing food and swallowing. She also talks nasally a lot of the time when she starts to get tired. This could be the throat itching your son is talking about. These symptoms come and go. The bad thing about MG is that you never know what to expect or when to expect it. You just have to go with the flow when the symptoms hit. We will keep you in our prayers and know that there are many of us here for you. We all learn new things all the time.
Hugggggs,
Tammy

I did forget to add that my daughter's symptoms vary greatly week-to-week. Some weeks she can't go to school because she's too fatigued (and dizzy). Every once and a while, she has a day when she can go somewhere with her friends and run around for several hours. I think when she's exposed to common viruses, her MG symptoms get much worse as her body tries to fight off whatever it is. BigMama- sounds like your daughter is having a tough time. So sorry. My daughter too has more weakness all over left side than right. Wonder if this is common with others? Sarah

Thank you Sarah xoxo She still is doing really good though considering everything that she has going on. You know how the symptoms are....here, then gone, then back....you just never know. We have an appointment with her school tomorrow to discuss how they can bestter help her and to let her teachers know just what to expect if she goes into crisis. But so far...she has been to school every day and loves it !!! Of course, she has to have a nap as soon as she gets home. I hope your daughter is doing better too !!!

Thank you BigMama & Sarah100 for replying. I hope this is how I reply to you. We went to the Dr. today. We are seeing a Dr. in Columbus Ohio at Nationwide Children's Hospital. We were finally sent there from Akron Children's when they were unable to dx him. I don't remember her saying adult onset. But you know how you go home and try to go over & over everything they said. It's just too much to take in sometimes. They are scheduling the CT to check the thymus. and They are scheduling him for the ivig treatments. They said the first one will be done at the hospital, then the rest a nurse will come to our home and give them to him. I was shocked! his first treatment will 5 days in a row then once a week for 6 weeks then a recheck with the Dr. Do you know how he may feel after the treatments? She said fatigued I am worried about school do you think he will beable to go? His left side is weaker also, although I just assumed it was because he was right handed. How was the recovery with the surgery? thank you again, for your replies I felt like I should know what to do and expect. Now I know, I can't and won't. My thoughts and prayers are with you both and your daughters!
thank you,
Daisy

Recovery with surgery is dependent on the type of opening they use. He would have an easier time with scopes thru the side but some docs feel they can't "get it all" that way. To be honest, a big consideration for us was that our child was a 14 yr old girl and had the whole dating experience ahead of her. Our surgeon said if she had any difficulty, she would change to open chest. The opening that BigMama's surgeon did seems wise for open chest on a child. Most important thing I can tell you re IVIg is don't let them "push" it. They ran the drip for 5 hrs the first day and because my daughter seemed fine, they "pushed" it to 3 hrs the second day. She got a terrible headache and had to be on painkillers for a few days (so no school then, only sleep) and they had to stop treatment for a day. IVIg should make your son feel better though. BigMama- ironically, we have a 504 for our daughter on Friday because she's missed a lot of school this year and is having some difficulty. She's going to have to drop French III because she's too far behind. Frustrating for her because she used to get straight A's. I know you understand. I often push her to go to school and feel bad about it but know she needs some more education. It's tough. Sarah

Hang in there Mother's!! It is so tough seeing your child go through all that they endure with mg. I pray daily that it will just all go away for my daughter, but so far that has not been God's will. It is great for me to see that I am not the only one that has gone through these things with my daughter. Read, read, read, stay informed and do what you think is best for them. I wish that I was close enough to help with your daughter's education Sarah. I have lots of years of teaching both gifted and talented and special education. Unfortunately, Oklahoma is too far from you. We will all count our blessings that we have found other mother's with which to share our concerns, fears, and triumps.
NanaMar

NanaMar- Ironically, my identical twin also has taught gifted and talented and special ed for years. I actually have a lot of experience with the special ed system as I have a 6th grade boy who has had an IEP since he was 3. My daughter should have no problem qualifying for an IEP under "other health impaired" but I want to see what accommodations the school will offer her before we go down that road. Thanks for the thoughts. Sarah

Hi Mom's!
I can't tell you how much this sight has helped me already. thank you! Just got back from his CT. It BREAKS my heart to keep putting him through all this. He is such a brave little trooper, sometimes I wish he would cry and scream. He is always so good. He uses a wheelchair at school, on field trips etc. It's been a huge help at school. He doesn't need it everyday. Usually the schools have one they keep there for injuries, but maybe your daughters (BigmamaTam & Sarah) could use them when needed. I took him to the zoo today after his CT. There is no way he could have walked it. I keep his wheelchair in my truck at all times. I know teenagers may not want to, but it sure has helped him.
Daisybuttons:)

The teenager thing definitely plays a role. (I think that self-consciousness kicks in at about 12). My daughter won't even use a rolling backpack. She just struggles thru. How long has your son been having symptoms? I also wanted to tell you to make sure you check out all the side effects to the drugs the docs might prescribe in the future (ie., the immunosuppressants and steroids). I think the docs sometimes treat the disease and don't always take the patient into account. The State of California told my insurance that they had to approve IVIg treatment for my daughter without requiring trials of the other drugs due to their potential harmful effects given her age. We now have an authorization number from our insurance that I carry around for IVIg. I did have to go thru the whole appeals process to get it. Thanks. Sarah