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May 21st, 2017

My Son’s Brain Tumor

By suzam

Last year in March 2016, I received a call from the school nurse. Saying "C" is alright but I want to call because today in class he said he black out, didn't know what was going on. The Nurse said he could possibly had a seizure, please take him in to see his doctor. I (mom) was bit freak out, know my son high functioning autistic, I have heard of boy hormone change & possible seizure's during teenage time. I (mom), went to pick "C" up from school & to talk to teachers to hear for myself what actually happen. That evening my son & I went for a walk to talk about his behavior, school, what happen today at school. I (MOM) was trying to explain to my son about school, why is leaving his school materials behind, & his behavior had changed with aggression. I just felt with all the progress we had made w/ "C" we are now going backwards. So, our walk all of sudden "C" grabs his forward and says MOM there it is again, this pain. Here I am giving "C" lecture of his behavior, grades, school, I am thinking at first are you getting out of what I am saying. So, we walk little more around the park, then I remembered what the school nurse said "seizures" I told "C" I think we should go to ER. We got home told his dad what was going on, his first responds is really, your gonna be for a long time. I gotta do take him, something doesn't feel right. Off we went to ER my son & I, first I felt funny saying oh my son may have black out at school he's complaining of his head hurting. Sure, enough after the CT Scan.. doctor come back and says, WE FOUND A MASS IN YOUR SON BRAIN. We will be having him admitted to children hospital of Long Beach. Shocked we couldn't believe it. Ok here we go 4 days in the hospital CT Scan, MRI, EEG. My son was having seizures, you couldn't even see it. We had every doctor in seeing him infectious disease, oncology, neurologist, neurologist surgeon. We were told possible tapeworm, to they explain what was tapeworm, and have we left the country (NO my answer) has your child ate raw pork (NO my answer)

My though, autistic children are picky eaters & most of them smell there food first like my boy, No way did he get a hold of raw pork. So, I had listen to what the doctors were saying, I tried to keep open mind, so as released to go home. We are taking seizure meds., which alter his moods more. Made all the appt. to see all these doctors. scheduled the next MRI. During this time my son is put on Medical Home School cause he can't concentrate, having headache's, mood swings. My June we had our next MRI done, saw the Neurosurgeon, we got the same story again possible parasite (tapeworm) due to location we can not do biopsy nor operate on him, you need to take him to treat him as it is a parasite see the infectious disease doctor. This doctor had the worst bedside manner, said right in front of my son, I wont operate on him I could kill him. I as mother never said I wanted operation right now. I want answers of what is this in his brain. Well do the location is very dangerous was said. Ok I understand that, but can you help him. This is taking over my son life, he missing school, can not play sports. I could not understand this ... they were just gonna watch this thing in his brain. Upset I said, we can send a man to the moon, but you can help my son. Off we left that doctor. Yes, we saw the infectious disease, I said ok we will treat it as if was a parasite, but I am telling you I know its not. So my son get 2 weeks supply of antibiotic & prednisone, knowing prednisone is another medicine that alter my son mood. Results back from the 2 week treatment no change... the mass is still there slightly growing. Also we were told if was brain cancer by know the tumor would have grown rapid.

Now I am searching for 2nd opinion so we off to Choc hospital, waiting to see a doctor at UCLA neurologist.

We still kept seeing neurologist w/ in long beach he hand the seizure meds. At Choc hospital found a new Neurosurgeon, who had much better bedside manner, but again more MRI'S needed to be watch, due to high risk - tumor location is down deep in folds. This doctor explain it much better to us, of course he didn't want to damage our son. I had to trust it, but my son still is not feeling good. He is not himself, seizure meds make moody, withdrawn. Our new Neurosurgeon referred us to see Neurologist at Choc. well, we basically out of there feeling unheard. We got see us back in 3 months, we think your son fainted not seizure's & now the tumor is only "almond size" Oh man! I had it! So, we left again in tears... by the time 8th grade started up Sept. 2016, we still have no name for this mass in my son brain, still on seizure meds. I did not want him medically home schooled, the school that my son is in, was very supportive during this time. I/We as parents wanted my boy at school it's 8th grade. Prior to all this knowledge I was in tears crying to my husband, our son moods & aggression is out of control. Do send him to a military camp. So, now knowing that there is something in his brain we meds pretty much leveled out, but my boy would keep saying mom i feel funny, I don't feel good. I sent him to school by noon I was pretty much picking up daily. He had another outburst of his behavior in Nov. 2016, In tears I am again. Our son has turn 13 now in beginning of Nov. We had birthday party for him, my son's boy scout leader was asking me how's it going ... so I had explain to him got him caught he listen even talk to my husband too. Within couple days he text us w/ a friend information said, the person might beable to help you guys out. Ok... so my husband had me did you get that text... oh yea! Wow! That was very nice of him. So, I was saying the last big outburst, meltdown of my sons. I was a lost ... I couldn't image or excepting that my boy was going to have to live like this and be on meds for the rest of his life, Or just wait til he was an adult to be operated on. As I sat home crying, lost, my husband reminds me did you ever make that call from the text. I said, No I haven't, I said I probably just get the run around again. I sat thought about it... I called it. Sure enough, this person due a doctor, she was on it. Making phones & reaching out to Dr. A. Fallah. We did end up seeing a neurologist at UCLA but no one ever mention Dr. Fallah.

Within the following week we met with Dr. Fallah, he explain what he could do Laser Surgery & Biopsy. We were so excited with tears, I knew it this was it. I was so excited I wanted to sign the papers right then. But we have to wait back up there is a whole process... ok I say to myself & my son had look of relief, he wanted his life back. Let just say by December 23, 2016, laser surgery is scheduled to happen! What a Christmas gift. On that morning after admitting to hospital walking way from my son for surgery I cried for 2 hours. With my husband & grandparents with me. We waited 4 more hours for the surgery to be took 1/2 day. Yes, it was success! Laser in my terms fried that tumor to kill off cells. It is a process it doesn't die off over night. I believed this is goin to work. We met with Dr. Fallah after 2 weeks we got the results of the tumor "Olifoendroglioma Low Grade 2" WE FINALLY HAVE A NAME! YES, We found the right doctor who had a new style of technology that is working. This March of 2017, this tumor has shrunk down to 1/2 the size. My son has been off all Seizure meds. since Feb. 2017. Has not anymore seizures. Next MRI is in June 2017.

My son high functioning autistic diagnosed before 2 years old, adopted as newborn, without any prenatal care, has had to fight throughout his life yet so far. Learning how to speak, behaviorist coming to our door to work with him. By 6th grade my son was fully included in general ed, doing so well by mid 7th grade the changes we saw... there was no way as a mother was I going to except that is how your son will have to be, its to dangerous. There are other types style to be open up too we are forever greatful to Dr. Fallah and our friend telling us about another friend.

Now my son with being graduating from 8th grade, will be receiving an award for most inspiring student that was pick from his school. Now playing baseball, is on the swim team at YMCA, plans to join the swim team at his high school. Very Blessed.

Tags: autistic children, biopsy, black outs, CT scan, Dr. Aria Fallah, emergency room, ER, high functioning autistic, hormone changes, hormones, infectious disease, Laser Surgery, MRI, neurologist, neurologist surgeon, Neurosurgery, Olifoendroglioma, oncology, parasite, patient stories, Pediatrics, prenatal care, school nurse, seizure, tapeworm


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