Epilepsy Foundation

HI all I am trying to find out more about this tumor and anyone who have had to deal with it...I have some questions....My daughter was diagnos with this type of tumor, possible..they still could not confrim for sure , so they are taking the watch and wait for 6 months, then another MRI.
She was frist diagnosed with having an Astrocytoma, but now "the neorosugeron says it looks like DNET, he was not totally sure and did not want to operate due to some factors. I need to speak to parents in the same situation..I am a very positive person and believe in never giving up. However, I find myself losing it a bit today. My daughter does not have seizures, but they told me to look out they may happen, since she has tingling in her hands and feet and funny eye movements at times...
Could anyone tell me what to look for, how to know if she is going to have one or is it just a waiting game...tell me about your experience .....

I have read some of your stories, encouraging to be here...my heart and hugs goes out to all the kids and Parents who continue to fight the fight of a Brain tunor.

Thanks for helping
sonia

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Hi Sonia,

This is a great place for support. Usually a child will have seizures and they will find the DNET due to routine MRI follow up. That is not always the case, but seizures is one of the most commmon side effects from these tumors. They are benign in the fact that they don't spread. Did the dr tell you what factors made him not want to operate?

Seizures manifest in all sorts of ways. The tingling and eye movements might be seizure activity. The only way to tell is to have an EEG that captures the brain activity during one of those episodes and then it is not 100% conclusive. Most of the time you cannot tell when someone is going to have a seizure unless you know the triggers and have seen many of them. I have a mommy sense about when Sid is going to have one. We have been going through this for over 4 years now though.

Where in her brain is the tumor? Sid's is on the right side in the temporal and frontal areas pretty much from midline to edge of the brain. Although, it has shrunk considerably since we had radiation treatment last year. Sidney is the only known patient to have proton beam radiation for a DNET and so far it has responded better than hoped. We did not want to do another surgery because they gauranteed left side paralysis. His tumor is wrapped around the motor cortex. It is still in the motor cortex and the thalmus, but it seems to be moving out of the area that controls coordination and away from thhe brain stem.

I will be happy to answer any questions you have to the best of my ability. There are several arents who have gone through the surgery and have done well with it. I have found great support on this site for any and all questions and just when I need to vent or let something out.

You can go to CaringBridge.org and visit supermansid to see our story. It's too long to write it all here.

Lisa
Hi Lisa,

Thank you so much for your timely response. Your Little Superman is indeed a brave boy, I read his story and saw his pictures with my daughter and we wee smiling just to see him with a lovely smile on his face. Our prays are with you and so many going though the daily fights.
My Daughter is 13 years old and will be 14 soon, she has the tumor in her Right Parietial, Occipital lobe. It measures 4.5 cm x 3.6 cm and there seems to be 3 other tiny ones ( they did not measure those) they told us it was small and not causing too many problems as yet. and that it seems that there is normal brain betweem the tumor and tiny ones.
The Neorosugeorn could not confrim it was DNET but his exact words that it mostly resembles a DNET, so we should wait 6 moths then do another MRI and go from there. (Frustraing)
On March 30th, 2009 following a fall while ice skating, an MRI showed her tumor as a fairly large tumor, a possible Low grade Astrocytoma or Gangligiloma. The report stated that the lession was usual and complex and had multiple septations and had little mass effect. Howeve, on visiting the Nerosurgery Clinic, we were told the above....he was concerned about her having seizures, because of the tingling, and said he wants her to do a EEG. I am still worried if this is really a DNET since they could not conclusively tell me it was. She has had no seizures.
She had had really bad headaches for a long time now, that she gets in the morning, and after playing sports, she also had a great bit of eye problems ( she now had to wears glasses for reading after getting her eyes checked -2 weeks ago). She gets tingling in her hands and feet all the times. Her personality has changed in that she is irratable at times ( and it's not the teen age stuff-I know that :), she get very tired after school each day and goes to lay down most evenings, they say DNET should not cause all these symptoms. Tell me does your son exhibit any of these symptoms? I know things will be diffrent in many cases, however I am trying to do all the research I can and reach out to others as well to fight this road of Brain tumors. I applaude you and all the other great and fighting Parents who continue to fight for our children. I belive in life there is always a ways and that we should never give up...this diagnosed really rocked our world, my husband does not speak about it a lot, so a lot is on me and I have hit bottom a few times, it is great to come here and express and get support and read about what each are struggling with and overcoming.

Thanks Lisa and all who reads and respond :)
(((((((Sonia))))))))

I have no experience with DNET, but I did want to welcome you to the forums and let you know I was here for support!

Keep us updated when you can how things are going and know we are here for you!

Hugs,
Donna
*heart/rose*
Sonia,

The headaches could be related to the tumor or could be seizures themselves. There are several here whose kids have seizure migraines. I'm probably not calling the right thing, but that is basically what they are. Your daughter may be having what they call subclinical seizures. The seizures don't present with physical symptoms you see, but abnormal activity is still going on in the brain. This could account for the increase in tiredness. I am not a doctor so take everything I write with a grain of salt. I would get her an extended EEG if at all possible, at least a 24 hour one. They really can't tell anything from a 30min to 1 hour EEG.

I would take her for a 2nd opinion if you are not satisfied with what the drs are telling you. We had Sid's info sent to St. Jude's for a second look and they confirmed the diagnosis and plan forward at the time. Le Bonnheur(sp?) in Memphis is another great hospital. Cleveland Clinic and Massachusettes General usually get good reviews here. I don't know where you are, but her files and scans can be sent anywhere for a second look and they shouldn't get upset about it.

If it really is a DNET there is not a whole lot of info out there on them. They usually cut them out and you go on with life. We are at a crossroads of what to do. The radiation is killing the tumor, but he still is having seizures. The drs want to go ahead and cut it out. We want to see how much it will shrink first. It is never an easy choice when considering meds and side effects vs brain surgery. Both have pros and cons.

It is hard to say with Sid what is from the tumor, residual effects of radiation or med side effects. He doesn't remember life with out taking meds multiple times every day or going to drs and hospitals every couple months. He will probably be a whole other kid if we ever get to take him off all the meds.

Keep asking your questions. I hope some of the other DNET moms will chime in wiht their experiences.

Lisa
I just wanted to welcome you to the forum. I am sorry about what your daughter is going through. We were told at one point that my daughter had a DNET. We were told nothing could be done and were sent packing. I found a good ped. neuro and he thinks instead of a DNET she has mesial temporal sclerosis. We are now on our way to another state to have further testing done to see if surgery is a possibility. I guess the moral of my story is, if you don't want to wait 6months or are uncomfortable with the diagnosis, get a 2nd opinion. I know that many hospitals will give you an evaluation and their opinion if you just send in her charts.

My daughter gets very tired easily. Physical activity causes breakthrough seizures. She also has migraines and seizures my husband and I do not see. We only know she has had them b/c her left foot drags. My husband is the same way as yours. When I first found out about her seizures, he was in Iraq and did not talk about or ask about them for a few weeks. Once he came around, he did extensive research. This last week when i found out about the mts, he again shut down. Just have patience, your husband will come around and in the mean time, feel free to vent/ask all the questions you need.
Welcome to the forum. I am so sorry that I have been so slow to chime in. Our lives this week have been crazy. We spent most of Monday in the E.R. as our daughter had a seizure at school, hit her head, and exhibited concussions symptoms, was cleared of that, and then had 6 decent sized seizures in 25 minutes which almost sent us back to the E.R. a second time. UGH!

My six year old daughter, Grace, has a DNET. She was diagnosed about 2 1/2 years ago. We have had second, third, and fourth opinions. Her tumor is in a very difficult location as it is large, diffused, and wrapped around her basal ganglia. Surgery is a last resort for us, as we have been told it is a probability that she will be paralyzed on her left side. We are still trying, pretty much unsuccessfully, to try and control her seizures through medications.

Grace also has vision issues, wears glasses, and has headaches...sometimes. Headaches really have not been our main problem though. Over the course of the last two years, Gracie's seizures have changed. There are so many types of seizures. It wouldn't surprise me if your daughter was having them and you couldn't tell by outward appearances. BUT--I hope that isn't true!!!

One of the hard things for us has been the "loss" of our daughter as we used to know her. Her personality, behavior, etc. has changed dramatically. I blame it partially on the brain tumor, partially on all of the medications, and partially on all of the stress she has to go through. Right now she is really struggling to get along with her siblings, classmates and others in general. It is impossible to parent this sometimes. So, I definitely understand where you are coming from here.

So glad to have connected with you. Hope some of this info was helpful. Please feel free to ask more questions. Take care!
Nikki
Hi Niki

Nikki Farris said:
Welcome to the forum. I am so sorry that I have been so slow to chime in. Our lives this week have been crazy. We spent most of Monday in the E.R. as our daughter had a seizure at school, hit her head, and exhibited concussions symptoms, was cleared of that, and then had 6 decent sized seizures in 25 minutes which almost sent us back to the E.R. a second time. UGH!

My six year old daughter, Grace, has a DNET. She was diagnosed about 2 1/2 years ago. We have had second, third, and fourth opinions. Her tumor is in a very difficult location as it is large, diffused, and wrapped around her basal ganglia. Surgery is a last resort for us, as we have been told it is a probability that she will be paralyzed on her left side. We are still trying, pretty much unsuccessfully, to try and control her seizures through medications.

Grace also has vision issues, wears glasses, and has headaches...sometimes. Headaches really have not been our main problem though. Over the course of the last two years, Gracie's seizures have changed. There are so many types of seizures. It wouldn't surprise me if your daughter was having them and you couldn't tell by outward appearances. BUT--I hope that isn't true!!!

One of the hard things for us has been the "loss" of our daughter as we used to know her. Her personality, behavior, etc. has changed dramatically. I blame it partially on the brain tumor, partially on all of the medications, and partially on all of the stress she has to go through. Right now she is really struggling to get along with her siblings, classmates and others in general. It is impossible to parent this sometimes. So, I definitely understand where you are coming from here.

So glad to have connected with you. Hope some of this info was helpful. Please feel free to ask more questions. Take care!
Nikki
Hi Niki,

Hi nd how are you. How is grace doing? Thanks you so much for your reply, it really helped. How is the medication working fo Grace these days is it better? I sent hugs and God's blessing.

Sonia Jones said:
Hi Niki

Nikki Farris said:
Welcome to the forum. I am so sorry that I have been so slow to chime in. Our lives this week have been crazy. We spent most of Monday in the E.R. as our daughter had a seizure at school, hit her head, and exhibited concussions symptoms, was cleared of that, and then had 6 decent sized seizures in 25 minutes which almost sent us back to the E.R. a second time. UGH!

My six year old daughter, Grace, has a DNET. She was diagnosed about 2 1/2 years ago. We have had second, third, and fourth opinions. Her tumor is in a very difficult location as it is large, diffused, and wrapped around her basal ganglia. Surgery is a last resort for us, as we have been told it is a probability that she will be paralyzed on her left side. We are still trying, pretty much unsuccessfully, to try and control her seizures through medications.

Grace also has vision issues, wears glasses, and has headaches...sometimes. Headaches really have not been our main problem though. Over the course of the last two years, Gracie's seizures have changed. There are so many types of seizures. It wouldn't surprise me if your daughter was having them and you couldn't tell by outward appearances. BUT--I hope that isn't true!!!

One of the hard things for us has been the "loss" of our daughter as we used to know her. Her personality, behavior, etc. has changed dramatically. I blame it partially on the brain tumor, partially on all of the medications, and partially on all of the stress she has to go through. Right now she is really struggling to get along with her siblings, classmates and others in general. It is impossible to parent this sometimes. So, I definitely understand where you are coming from here.

So glad to have connected with you. Hope some of this info was helpful. Please feel free to ask more questions. Take care!
Nikki
Hello Lisa, Niki, Donna, veronica,and other moms, I am dropping in to wish all a better day than yesterday!


I think my daughter started to have seizures,she is going back to the Hospital on the 26th, for an EEG. Britney will be graduating on June 24th. My love to all the little ones.

My Computer keyboard is having issues, so I can't write much, but I think about all of you and the lovely kids daily. My prays are always abundant.

Sonia
Hi Sonia and to all here with posts in regard to DNET's. My son is now 9 years old and had his first surgery to remove a DNET at the age of 6. We had a second surgery in 2008 - epilepsy surgery and pathology showed more DNET was removed when they had reported gross total resection after the first surgery. We had a period of time after each surgery without any seizures and now we are back to having seizures again. We are afraid the tumor has come back - but we thought and were told that this type of tumor should not come back??? Any body here on their second or third round? We treat at Mayo in Minnesota but live in South Dakota. I sent our son's records to the Pediatric Brain Tumor Program to be reviewed for second opinion and confirm the pathology of the tumor. This could be a good resource for anyone.
H i Kristin,

It saddens me to hear your son having seizures again, but hang in there and keep posituive and believe in the power of positive healing. I know sometimes its hard...yesterday was a very bad day for me with my daughter, she was very fatigue and had bad headaches and keep having blank periods. I went to her room to check on her and I ask how she was doing, she looked at me, keep sratching her chin repeatedly and did not answer. When she awoke I asked her about it and she did not remember. I tell you this because I have nocticed times like this before and I think they are seizures. She did an EEG in June, too wish they have not given us the results as yet. Each and every day she has headaches and very strange periods of extreme fatigue or sleepiness, have you witnessed any of this with your son? She get the headaches after physical activity, if she coughs etc. Last week for 4 days straight her eyes throbbed uncontrollable. Oh her graudation day , 4 toes on her left feet went in a diffrent direction and stayed that way for a long time. Last week, she also could not get up from the bed for 20 mins with a strange pain on her entire left side and she complains about being tempoary not able to see when she just gets up from the bed in the morning... Does any of this seem familar to you?

Now in regards to the Tumor coming back I have doene some extensive research on that and found so far that there was only 1-3 cases where the DNET came back and 4 cases were it actually, changes to something more serious. However, research showed me that, DNET removal can still result in the seisures returning after some time and the seizures are usually hard to control with just one medication. However if done early, this can be reduced. I sincerely hope that the tumor has not returned. Do you have the regular MRI's and when does he have one again? What does the doctors think? Have they changed his Medication? Hand in there to you and the little one ..it's so hard to seee our kids go though this...but we will make it. Keep holding on to the rope on the side of the mountain and keep climbing. Remember to NEVER give up! What type of seizures is your son having.

Take care dear,

Sonia
Hey Kristin here is some info I found for you....
read this.. i will also palce the link...http://www.springerlink.com/content/b5662385856602u6/

Abstract Dysembryoplastic neuroepithelial tumors (DNETs) have traditionally been viewed as benign “quasihamartomatous” tumors widely considered curable with surgery alone. More recently, case reports have described malignant gliomas arising after irradiation and recurrences following subtotal or even gross total resection. Herein, we describe five cases of DNET with recurrences 2–7 years after resection. Although the radiology was often alarming (e.g., new ring enhancing mass), the pathology remained benign in most cases. Nonetheless, a probably radiation induced anaplastic astrocytoma was encountered in one case 7 years after therapy. These findings suggest that these patients may need closer follow-up than initially suggested, lending further support to the notion that this tumor behaves more like a benign neoplasm, rather than a dysplastic or hamartomatous lesion.
Keywords Dysembryoplastic neuroepithelial tumor - Recurrence - Malignant transformation

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