You are awesome! Thank you and I wish you the best!
You're welcome- I know what she is going through and hope that anything I can do can help her. She's so young that I hope that she can get better and fight this!
I do have memory issues with my EBV but I'm not sure if it's more connected to the thyroid problems or that. It can make it difficult to concentrate for me. In fact, I had to leave my job when it first flared up b/c I couldn't do it anymore. The first time I got it I was working 2 jobs and going to school full time- I had to quit one of the jobs and drop to part time which was frustrating b/c then I could no longer get health insurance w/out paying for COBRA but I was so sick I didn't really have a choice.
I had some wonderful professors in college who were very understanding and allowed me to do part of my studies at home and only had to go to class on occasion which helped a lot. Of course I had a few jerks who told me to get my priorities in check- um okay whatever. You just can't listen to those people. If you have the option I'd say see what you can do about home schooling at least for this year (or short term until she is better) to help her pass so that WHEN she gets better she'll be up to speed with the rest of her classmates. Hopefully that's an option for you.
If you have any questions for me on the diet please don't hesitate to ask. I'd gladly share any info I have with you.
Take care.
Chel
Thank you so much! It's nice to finally have someone who just understands all this. I'm discouraged by the length of time you have had this and OMGosh I hope you get well. Having it as long as you have has got to be maddening. Your advice is great and I will follow up with all of it. I have an appointment with the school principle who is ready to have her repeat the 4th grade. I have a question, when yours flares up, can you concentrate enough to do homework or reading etc.? My daughter says she can't think or concentrate when she is feeling this way but if I can get her to read and write while she is home, there may be some hope on passing this year. I want to say heck with the school, however I'm also afraid of the social and phycological impact it will have on a 10 year old "A" student to flunk 4th grade. ugh ugh.. Again, thanks for responding, it made a world of difference.
I'm sorry to hear about your daughters suffering. I can relate as I've had two cases of chronic mono each lasting for more than 2-3 years at a time (I currently have active mono since summer of 2007). I also started getting thyroid issues shortly after being diagnosed with mono the first time back in 2001. When my mono went away from the first case I was able to get my hypothyroidism under control with meds but when I got mono again my thyroid went all wacky. I knew the two were related but it took many years to finally get a doc to see that too and I know have two wonderful docs who are helping me beat this thing.
I just did a quick search on thyroglassal cysts so I don't know much about them. If it's causing her pain it could be a sign of infection according to what I read. In that case they could give her antibiotics for it but they should probably do further tests to see if it's interfering with her thyroid functions (full thyroid blood work, thyroid scan etc). Have they done this yet?
As far as the school is concerned I say the heck with them. Mono is a serious disease (comes from either the CMV virus or the EBV virus) and if the persons immune system is not strong enough to fight it it will stick around. Even though it's only supposed to last 4-6 weeks for the beginning phase and then about 4-6 months for the recovery phase every person is different so it's not always the case. I know since I'm one of those unlucky people to have it for years.
Unfortunately the only thing that can really get rid of mono is rest, rest, rest. It's the most important thing to getting better. One of the biggest mistakes people make is try to jump back into things too quickly which can cause the mono to relapse. She's so young and I'm sure it's hard to sit back and not do anything but it's the best thing she can do for herself right now. Something that I can recommend that has helped me though is finding out food allergies. I'm seeing a doctor that does things from a holistic approach and he put me on the allergy diet and I have had great results. There have been a lot of studies linking food allergies to chronic illness. Food is a basic necessity to life and so it has a HUGE impact on everything in our body. When people constantly consume foods they are allergic to the body continuously is fighting off the food rather than the illness. Most of us aren't aware enough to the signals so we miss them. My doctor put me on the diet where you get rid of all known food allergy ingredients for 3 weeks (soy, dairy, gluten, eggs, nuts, corn) as well as red meat & pork (since they are harsher on the liver) and then you take a drink supplement to replace the vitamins and nutrients. After the the three weeks you slowly add back one thing at a time and wait a few days to see if you react. I found out I have allergies to almost all the common food allergens other than corn and nuts (still don't eat red meat or pork though b/c having mono for so many years is very hard on your liver and those meats don't process easily). I cannot tell you how much of a difference it made for me. In fact, my doctor has been testing my mono (EBV) antibodies since getting mono back in 2007 and this is the first time my antibodies dropped and the mono is almost back into a dormant stage. It may not work for everyone but it's made a big difference to me and so I cannot recommend it enough to at least try.
I really hope you can get help for you daughter. It's a terrible thing to have to go through especially at such a young age. Keep hope.
Chel