arrogance in 4 years after treatment for neuroblastoma at high risck child
 

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07-16-09 09:26 AM
micysogna
arrogance in 4 years after treatment for neuroblastoma at high risck child
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Good day everyone. My baby Samuel takes four years in October. In August 2007 the was diagnosed with a stage 4 neuroblastoma  high risk and concluded its plan of care in October 2008. So far everything is fine thanks to God!

I wanted to know whether any parent is in my situation..sam has difficulties in the report with other children. If there are many children begin to shake it and runs and moving their hands against them..also to the ' asylum fails to focus on things and is iperattivo..They told me that it can be the anger that has itself for this two years in hospital, but I so afraid of wrong and I do not know how to react to this attitude..assumption that the 2 years of treatment was bravissimo and take not I never had it up, while now sometimes fail to make me obeying...
Thank you for anyone who wants answer

p.s: sorry my English but I write from the ' Italy

Michela

07-17-09 08:13 PM
Drvasilios
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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Hi Michela, I am in Chicago, USA, but I am Greek so I can relate to you being in Italy.  My son, Yano, is 3 yrs. old and was just diagnosed 2 months ago with Stage 4 NB.  So far he has finished his second chemotherapy treatment and just had his stem cells harvested in preparation for his stem cell transplants.  He is doing ok for now, but we are always worried about long term effects.  He is still too early into treatment to tell, so I cannot answer you, but I hope others on this forum might let you know of possible long term effects.  Best of luck!

 Vasilios

07-21-09 03:19 PM
Denise Goyack
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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Hello Michela,

We have not had a chance to meet yet. Our son is @ u of c. He is getting next round of chemo, I am not up there all the time, I had to go back to work. But if you are still there look for us rm 641.

Denise

07-22-09 02:45 PM
dawnie
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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HI Michela! I am so happy to hear that your son is doing well, it's nice to see some good news! I will keep your Samuel in my prayers for his continued good health!

If I understand you correctly, you notice anger, defiance, and a problem dealing with other children in your son now? If this is a correct interpretation of what you expressed, here is my take....

Did your son take retinoic acid? Ours took 8 cycles before relapse and I have to say it caused a lot of problems.  He experienced a lot of behavioral issues, much like what I think you described.  He also struggled with depression like symptoms at times.  I also know that some issues are common after some chemos, especially high dose and transplant.  Our hospital does a psychiatric exam before transplant. The difficulty in dealing with other children may in part be due to his inexperience with them.  After a long time of isolation during treatment, it may be hard for them to be "normal" kids again.  And of course, there is the fact that we parents (me big time!) tend to go easier on them when they are so miserable, but now that they are ok, we expect more.  Much of this I think just requires some time--for everyone--to adjust to the new normal in your lives.

 And also, if I may, to some extent this is also normal boy behavior....I am mom to three boys... I see a little bit of that.... :-)

 

07-24-09 05:40 PM
Richard
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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Michela,

 I saw the same behavior in my son immediately following stem cell transplant and retnoic acid treatments, we called it "mean boy".  He would have outbursts of frustration over simple tasks and he had trouble playing with other children.  He attended preschool several months after transplant, which helped him develop his social skills and control the outbursts.  Sharing seemed to be his biggest issue.  I think this was due to all the special attention he had received for the year and half prior while he was receiving intense chemo treatments.  What Chase wanted...Chase got.  When you see your child suffering through what these kids endure, and think about their mortality, we as parents can't help but to wait on them hand and foot. 

As medical procedures have become more infrequent Chase's behavior has improved as well.  I noticed an improvement in his behavior once we were done with retnoic acid - not surprising.  He then started immunotherapy (3F8) and his behavior seemed to get more agitated once we started 3F8.  He was given monthly 3F8 treatments for 8 months.  5 months ago they changed his 3F8 treatment to every other month.  The last 5 months he has had the best behavior and attitude since he was diagnosed with Stage 4 NB in Oct 2007.  

I have to believe the combination of less medical treatment/stress and being treated like any other child i.e. no "special treatment" is a big reason his behavior has improved.  Not to mention he was 3 when he was diagnosed and he is now 5.5 years old, which brings some maturity as well.

Hope this helps and wish you the best!

Rich 

07-28-09 10:25 AM
micysogna
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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A welcome you all: sorry if I have not replied before but we returned yesterday evening from the sea, Croatia, we visited the control to Sam on 20 July and then we immediately parties with the joy in the heart! Thanks to God is all ok:-):-):-) and I had opportunity to speak with the doctor of his behavioural problems and anger..as we can have an appointment with the psico-oncologist we discuss with youmost likely you are strong stress over this year and a half of therapy and the absolute lack of interaction with other children..I very much hope that before September you can begin a series of meetings, so that my husband and I we can have tools to deal with..Sometimes I feel very lost and I do not know how to react to its provocation verbal and physical..and think that it was a child so sweet! but then the look in the eyes and I thank the Lord..

For Dawn, Richard, Denise: Sam from September 2007 approached 8 cycles of chemotherapy (COJEC) one every ten days, then made the collection of stem cells and December 2007 for the removal of the tumor surgery (befor chemio 10 x 8 x 7 ,after the chemio half) .at January 2008 approached chemotherapy mieloablativa and the autotrapianto surgical, insulated for approximately 30 days..in April 2008 was the round of radiotherapy for 15 days..also sam after treatment with 13 acid for 6 months and fortunately (although it has been extremely heavy treatment) was chosen for the infusion of the GD 214.18 antibody for 5 months one time per month..at the end of October we finished all protocol called NB-AR-01..I do not believe that cis-retinoico acid had behavioural at the time of treatment, consequences unless there are no late side effects that we do not know, as for the rest of the treatment suffered..

For Drvasilios, Denise: there I my wish for your children who have started just care..you have the strength to deal with each step at a time, every single step, one after another without looking too forward but struggling every single day..We are neighbours, and there I would like in my heart..

for all: thank you for your answers are very valuable: in this bad adventure unfortunately cisiamo ritovati to combat it alone, without the support of friends and without understand how shocking a State throughout the treatment period and it is still hard to deal with its consequences (without knowing then consequences due to drugs..) and days of the controls that become a sword of Damocles wallowing on the head..Unfortunately only those who lived or live this bad experience hard to imagine bottom of the stravolgente..Thank you for near there:
with all my heart:-)

p.s: always sorry my English

07-28-09 09:56 PM
Mariah1800
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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Michela:

First, I am so glad that your son seems to be doing well, and I hope for continued healthiness!!


I am not a parent, but a 30-year-old experimental patient survivor.  However, I know what my parents did with me, and I think it worked well.  I did ot have any behavioral issues from any of my treatments, but growing up, my parents always removed that neuroblastoma element from the parenting.  Since I grew up around doctors and adults, they wanted to be sure to make my childhood normal in other respects.  They wanted to make sure that I did not get away with bad behavior because I had been sick!  So, if I did something wrong, I was treated like a "normal" child.  That helped make me the person that I am today!  Also, though, I always felt different different from everyone else growing up because I had been sick.  I always wanted to be "normal" and fit in with the other children, so I think that indirectly being disciplined like the other children helped me feel a bit like everyone else and gave me some sense of normalcy!!

There was another, earlier posting on this website with a parent that had some behavioral issues with their child, so you may want to look at some of the helpful advice from that posting.  The subject line of that posting was: "Post NB Treatment Behavioural Issues? Anyone?"  Some of the responses to that posting might be helpful to you!!  Continued luck - Mariah

07-29-09 01:46 PM
micysogna
Re: arrogance in 4 years after treatment for neuroblastoma at high risck child
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dear Mariah,

We too have tried always to make Samu a life , say, "normal", with all restrictions which unfortunately the toxicity of therapy involved, as the not be able to attend often other children for the great danger of infection....then sam has been for so long, perhaps too, only with adults and doctors, and mainly with me...also why not having relatives coming as grandparents, we found only myself and my husband faced this terrible experience..I believe that the problem is all in the report with other children and learn that he is not the center of the world now, is experiencing but should share all the time, starting games of asylum... to the next control will speak with the psicolog so that you can also sayhow to deal with these his anger crisis..
Thank you for the Council, appreciate me very much and am happy to know a person "survivor" sno

with affection
Michela