Hi my name is Machelle. I am here looking for advice etc. My 12 year old daughter was diagnosed with leukemia (ALL) when she was 3 years old. She was on chemo every day for 2 1/2 years. She will be 7 years off chemo June 1st. She has so many late effects from the chemo. She has fibromyalgia, migraines and neurophy. I have been homeschooling her for 3 years now. She is really wanting to go back to school this year. I want her to try but I really don't see how she can handle it. My main concern right now is for her health. She was put on neurontin a month or so ago. It has really helped her neurophy. It has not completely taken it away. My daughter knows when it is time to take the neurontin again because her legs and feet will start tingling and burning again.
My concern is for a while now she starts to get dizzy, fast heart rate, hot or cold sweats, light headed, shakiness, nausea headache and shortened breath. She has had to get out of the shower before because she would get so dizzy. For the past couple of days she will start to see purple or everything goes to black. I think she is probably about to black out or pass out. I have messaged our neuro-oncologist (haven't gotten an answer yet) and she has an appointment Monday with the pediatrician. Is this common with neurontin? The neurontin has helped her so much she doesn't want to quit taking it. They did just increase her dose a couple of weeks ago to 2100 mg a day.

Any information or advice is appreciated,
Machelle

Hello Machelle and WELCOME to Neurotalk!

How frightening it must be for you and your daughter.

Here are a couple of links where you might be able to find your answers....(though you may have to ask again)

Medications & Treatments
http://neurotalk.psychcentral.com/forum72.html

Fibromyalgia and Chronic Fatigue
http://neurotalk.psychcentral.com/forum12.html

Please feel free to roam around and join in anywhere.
I hope to see you around the board.

Abbie

Hello, and welcome to NT! This is such a great place with many friendly, caring, and helpful people.

We're so glad you found us!

Machelle,

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Seems you have been through some ruff times. Please keep us up to date. Give Her a great big for me.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi Machelle:

Love your name by the way, never heard of it before. It sings off the tongue. Machelle!!!! So pretty.

Listen hon. I can't imagine what you have been through all these years. All the emotional pain and you just want your daughter to be okay. I understand. Just know you are in my prayers and so is your daughter.

Children are surprisingly resilient. I hope she continues to heal and that her future is bright.

Take care

Melody