New symptoms

[Wyatt Jennifer]

My two year old son wyatt has been experiencing new symptoms the past few weeks, I was hoping someone could give me some insight, since he can not communicate real well.
Hi tumor was removed in Aug 07 and now we are waiting for another M.R.I in June to see if the small piece they were not able to get, has grown again. The Dr. first thought he would need surgery, but the tumor board wanted to wait.
He has been waking a lot again during the night, do symptoms seem to be aggravated by lying down? He cries and points to his hands saying " hurt" seeing how he lost a lot of feeling in his hands, I was at first hopeful maybe he was regaining some of it. But now we notice he has been squinting his eyes when he is trying to see something, he also blinks a lot. It seems like he is struggling to see. With both of these symptoms surfacing, I am afraid it is growing and he will need another surgery.
If anyone can relate to any of these symptoms, I sure would be grateful if you could try to explain them to me. I want to help the little guy so badly. Thanks to you who have responded in e mails.

[Think Positive]

Hi Jennifer. I have not experienced these particular symptoms, however I felt compelled to tell you that my heart goes out to Wyatt and to you. I don't want you to feel alone. I can't imagine having one of my children going through this. I know there is someone "here" that will be responding to you with some insight. In the meantime, I will say a prayer for him. Hopefully these will be short-term symptoms. Hang in there and know that we are all here if you need to talk!

Kim

[msweeney]

Jennifer:

This is a tough one because Wyatt can't explain his symptoms. He is less then a year out from surgery which means that he could be experiencing a change in sensory function. Unfortunately with spinal chord damage we can experience uncomfortable or painful nerve signals and for me those changed over time as healing progressed. I can only speak for myself, but in my case I was able to become used to these sensations over time. So some abnormal or painful sensations occur with normal recovery and could be a cause for Wyatt's new pains/sensations.

Regarding the squinting and blinking, I would ask what level his tumor was on the spinal chord. My tumor was T9-11 so I am less familiar with symptoms at higher levels and would hope that others might respond about if eyes can be effected. Also your doctor would be able to tell you.

So your big concern would be if the tumor was changing and causing these new symptoms, and one way to monitor that process is with an MRI which tracks any changes to the size of the tumor. That is why MRI's are done periodically to measure changes. You are very close to having another MRI in June and that will give you more information.

I will complicate this "wait for the MRI and see" slightly. The doctors do not rely solely on MRI's, but also watch symptoms closely. I said that a change detected by an MRI is one way to asses if further treatment will be necessary. Another determinant is if there is a significant change in symptoms. Sometimes symptoms can come before noticeable changes in the information provided by the MRI. So if you notice significant symptomatic changes you will want to alert the doctors.

So that begs the question what is a significant change. My suggestion here is to have a detailed discussion with Wyatt's doctor. Tell him that you understand that you need be aware of symptoms and ask him to give you as much information as possible about what symptoms or changes you should watch for.

My heart goes out to you. I have two kids and I would much rather have this happen to me then watch them go through this. But just know you are doing the right thing by being a proactive care giver. I always found that information helps quell fear. If you have a discussion about symptoms with Wyatt's doctors and be alert about that and continue to have him monitored with periodic MRI's you are doing all you can.

I can only imagine how hard it would be but once you are doing these two things try to relax and understand that living with a bit of uncertainty is part of this journey. You'll get better at it as you go along. Some days will be better then other days. For me, I do best with nerve pain and symptoms when I get a good night sleep. Try to balance that with getting Wyatt as much activity as he can tolerate. I sleep better when I have had an active day and it aids in recovery.

I believ in the power of prayer and I will keep you and Wyatt in my prayers. God bless and keep you both!

Matt

[tc]

Jennifer,
I have found that I can ask for an MRI to be moved up, if I get concerned about something. There isn't anything that says that MRIs have to be at 3 month or 6 month intervals and no sooner. When I talked to someone at the National Institute of Health (Bethesda, Maryland), she said that insurance companies should/must approve MRIs as often as monthly, if there is any reason to suspect that anything has changed.
I sympathize with Wyatt and his hurting hands. I have not had surgery yet, but my fingertips have nerve pain. The pain feels like I am recovering from a too close encounter with a cheese-grater. It doesn't feel like the intensity of a new cut, but like I cut myself a few days ago. I found that this pain was much worse in the cold winter months. It helped to keep my fingers warm. In the winter even inside, I'd carry around a handwarmer sometimes (little chemical squares that you can take to football games and hunters use them. Find them at sporting good stores. Non-toxic for a child.). I am now using a TENs machine on my back for neck pain, but I am finding incidentily that it helps me tolerate/ignore the stinging from my hands.
Regarding the eye problem. I have had a problem with only one eye and I don't even know if it is related to my cervical tumor. But the timing of the eye problem makes me think it was tumor-related. My eyelid on one side felt very heavy and it made that eye tired. (I also had some occasional periods of annoying twitching of the eyelid or lower lid.) It turns out that I had very dry eye on that one side and was prescribed eye drops that increase the tearing (Restasis). There is a test for dry eye, so it wasn't just my subjective reporting, but a legitimate, measurable problem. That eye is much better now and I am on a maintenance dose of the Restasis drops. If Wyatt's problem is dry eye, there is a test which would reveal that. It's just drops in the eye, then the doctor watches dryness and tearing speed for a few minutes through his microscope. The only bad thing is that the cure, Restasis (Cyclosporin) eye drops, sting some people, so it might be hard to get them in a child's eyes. Once I got past the initial stinging, I'm so glad I got that one problem cleared up.
I have heard of symptoms getting worse when lying down. Phyllis with a cervical tumor (see People Page) had that problem before her diagnosis and surgery.
I will join the others in letting you know that I am praying for you and Wyatt! I'm a mom of 5 and I know you suffer when your child suffers.
Teresa

[8338]

Jennifer,
I, to, also want you to know that you are not alone. Keep us updated on the little guy.
Barb