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    #31
    ((((((Hugs to All)))))) ~

    tic chick and funnylegs4 ~

    Thank you for mentioning photosensitive seizures. Both of my boys experienced them periodically, so we were very careful about what they watched on TV.

    lostparent ~

    You and your wife are your son's greatest advocates, and you need to be very vocal about your concerns and what you want for you son. As I said previously, you are the Team Leader of your son's medical team.

    It's exhausting, frustrating, frightening, and everything else you are both going through now and will continue to go through with your son's issues. And the best time to change course/direction, or to investigate potential causes, is when your child is young, as your son is. Your son's journey will take you on many different paths, and you will become experts on his various issues. The more you know and understand, the better you will be at advocating for him.

    Once again, I urge you to get your son to a developmental center for testing and then, in an early childhood intervention education program. Utilize every resource available to you.

    Also, check out the social services available to your son in your area. You should garner all of the help that you can.

    Prayers on the way ~

    Love & Light,



    Rose
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    Comment


      #32
      Originally posted by Lostparent View Post
      We have argued with them before over the MR/DD label and every time they say they will remove it it never happens. I’ve told them he’s not aggressive and that he’s scared because of the unlikelihood of him understanding what’s going on around him.

      I’m not really sure what else we can do to have it removed.

      He has in his health record a gross motor delay and a “ language disorder involving understanding and expression of language” neither in my mind warrants such a label.

      In the video he is holding a game controller but nothing was on( it’s his brothers ) except regular tv. To my knowledge he’s not had an event while his brother was playing a game. Although I know some TV programs can also cause issues.
      When I was your son’s age I was so scared of Dr appointments that I screamed and cried to high heaven. My toddler mind thought the Drs were trying to kill me with their devices etc. Your son is likely petrified and if he does kick or lash out in some way its a “flight or fight” response, not aggression. Pediatric doctors need to understand how potentially traumatizing medical tests are to children and they need more patience and gentleness. If your Doctors do not remove “aggression” off the record speak up and find another Dr if needed. I think your son understands language but can't respond to you. Some kids shows with explosions of magic etc have flashing parts.
      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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        #33
        Thanks everyone as always.

        I’m calling his neuro again today to have that removed. As far as the developmental center, I need a referral before insurance covers it, which I’m hoping the neurologist in cincy will give us. Thankfully that’s less than a month away. Still peeved I have to wait until January for the CVI specialist but not much I can do about that.

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          #34
          Neuro just emailed us about the results and says they are normal and it is likely behavior related and not related to any other issues. Also will not refer us to OSU developmental center.

          Very frustrating

          Comment


            #35
            ((((((Lostparent)))))) ~

            Behavior related? I strongly doubt this conclusion, having witnessed thousands of seizures with my children. I'm not exaggerating that number, unfortunately. Michael's seizures were intractable for 22 years. Jon's began at the age of 2 and continued until he passed at 49. They had a large assortment of seizure types, including Gelastic. I think you said that other professionals believed your son was seizing in the video, but his neuro didn't believe it was a seizure.

            You're getting a second opinion, correct? Good. I've been in your situation too many times to count, and I have left more neuros than I could count. If your son's neuro thinks that your son has DD and behavioral issues but won't send you to Nisonger or any other developmental center, then it's time for a new neuro.

            If you are dissatisfied with the second opinion neuro, start neuro shopping. Search for parent groups for children with neuro disorders in your area, and join them, or find one on line and join them. Ask for referrals to their neuros, and ask if any of them took their children to your son's neuro. I had this advantage when my boys were in school, and talked with other moms, as we were all sent to the same neuro, and he had an enormous God complex. We all despised him and found other neuros.

            Search out all of the pediatric neuros in your area and look for patient reviews. Also look for a pediatric epileptologist, an expert in children's seizures, who would have more insight than your current neuro.

            This is a long journey, replete with frustration, anger, more frustration, brick walls that you have to knock down. You must be stronger than the frustration and anger and keep searching for the best medical care for your son. I never stopped fighting for my children, to get the best education, social services, and medical care. We have to be tough and well informed.

            On the other side of my experience is my husband, who has Stage IV lung cancer. I've had to fight for him too. If he had stayed with his first oncologist, he would be dead now. She ruthlessly refused to give him Opdivo, which had reduced his tumor by one half after the first dose. She prescribed a chemo drug, which gave him a tumor on his skull, resolved after 10 radiation treatments.

            That was it, and I finally convinced my husband to get a second opinion. That second opinion doctor continues to care for Jim, and he extended Jim's life for the last 22 months.

            If you're receiving substandard care from a doctor, who doesn't respect you, listen to you, or think outside the box, then you need a new doctor.

            Be strong. We're here to support you, pray for you, and help you along your journey with every step. It's overwhelming, but you're not alone.

            Prayers continuing ~

            Love & Light,



            Rose
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #36
              For his age I'm was very confused when she stated behavior related. My response was according to the epilepsy foundation amongst other sources 1 of 2 patients with epilepsy don't show abnormalities on an EEG, how do we know our son is not in this group of patients?

              I usually message her via electronic charting due to simplicity in looking up her responses and we can show what questions we have asked and her answers for any other doctors that may want to review it.

              I know my wife is on the verge of telling her off at the next appointment, on Nov 5th. Although the neuro us now considering adding a full EEG to the sleep study, but the way it was typed it sounded like she would be doing us a favor. Very annoying.

              Comment


                #37
                ((((((Lostparent)))))) ~

                Your wife being of the verge of telling off your son's neuro is a sure sign that you need to find another neuro. And you may have to go through a bunch of them to find one, who truly cares and is willing to go the extra mile for you. You may never find that ideal doctor, but you must have a neuro, who is competent and compassionate.

                Remember that you are paying for your doctor's services, which means that your doctor works for you. It's not the other way around.

                From your posts here, I think you have a fairly large collection of complaints about and disappointments with your son's neuro. That's another sign that you need to find a new neuro.

                Be proactive and start looking now.

                Your son needs the full panoply of benefits available to children with neurological issues, and that includes a developmental center for diagnostic and treatment.

                Let me emphasize once again that nearly half a century ago, my children had the benefit of early childhood intervention programs, developmental centers, and a variety of genetic testing. This, and more, should be available to your son today.

                Stop torturing yourselves and spinning around in circles with a neuro, who you feel isn't meeting your son's needs. Find a new neuro. Start now.

                It won't get better. It just won't. This neuro is predispositioned to label your son as DD, but doesn't refer you to a developmental center.

                First Do No Harm.

                In my opinion, your son's neuro may be harming your son, by not giving him access to the appropriate resources to help him in every aspect of his health and his development.

                I know how difficult it is to think in long terms, when what you're dealing with at the moment is unbelievably stressful. But, you must look at the long term, and how much time your son is losing in his development at the most important time of his development, without intervention.

                Your son's current neuro isn't going to refer you to a developmental center or Nisonger, so it's time to find a doctor, who will do that. Otherwise, your son is being deprived of critical and valuable therapy and education by professionals, which will impact his development in the future. Every child, who has any kind of neurological impairment, needs early childhood intervention and developmental services.

                Don't wait until November to tell off your son's current neuro. Start lining up potential pediatric neuros and epileptologists in your area now.

                It isn't easy at all, in fact, it's extremely difficult. But you have to fight all the way to get what your child needs.

                I strongly feel that your son does need a sleep study, as seizures are related to sleep commonly. An EEG during that time is appropriate. Never mind that the neuro was condescending. Concentrate on getting answers for your son.

                Meanwhile, find a new neuro.

                Love & Light,



                Rose
                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  #38
                  I'm so so sorry for all the struggles you've had just getting appropriate care for your son. I think Rose said it all!! Your son really needs a Dr. who Is listening to your concerns and acting accordingly. Can you talk with someone at your insurance co. They may be able to recommend a second opinion. Or if there's a teaching hospital (preferably childrens) nearby that has a specialty clinic for his issues they will sometimes help getting it set up and approved. My daughter was seen at Boston Children's in Boston several times and they helped us to get it approved. If it's out of town sometimes they will schedule things such that you can stay a couple days and get as many tests done as necessary. I would be very upset to have a Dr. chalk it up to "behavior". At his age and verbal skills yes behavior is communication and he's communicating that somethings wrong. My daughter had health issues that we had to peel away several layers and luckily I had Dr.'s who would not give up till it was figured out and her quality of life was improved. Sometimes her symptoms were what might seem like "bad behavior" but it was very much out of charactor for her. She would hit herself in the head, get very angry and scream, cry, and just not want to get out of bed. I hope you can get some answers soon.
                  Mary Grace

                  Comment


                    #39
                    Originally posted by Lostparent View Post
                    For his age I'm was very confused when she stated behavior related. My response was according to the epilepsy foundation amongst other sources 1 of 2 patients with epilepsy don't show abnormalities on an EEG, how do we know our son is not in this group of patients?

                    I usually message her via electronic charting due to simplicity in looking up her responses and we can show what questions we have asked and her answers for any other doctors that may want to review it.

                    I know my wife is on the verge of telling her off at the next appointment, on Nov 5th. Although the neuro us now considering adding a full EEG to the sleep study, but the way it was typed it sounded like she would be doing us a favor. Very annoying.
                    Hi Lostparent,

                    I completely agree with what Mary Grace and Rose said. FIND A NEW NEUROLOGIST IMMEDIATELY!!! This is unacceptable. Calling your son DD and then calling the issues “behavioral” doesn’t even add up because DD would indicate something going on in your son’s nervous system that needs to be addressed whereas behavioral sounds like “Your kid is naughty and seeking attention” which is WRONG. I sought out a new cardiologist for much less. Your wife should tell this Doctor off! Your son had something happen where he stared and did not respond, in the video, that was obviously NOT behavioral and could be dangerous. He needs that EEG! Drs are not here to do us "favors" but to listen and treat and affirm life. Keep us posted!
                    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                    Comment


                      #40
                      Ugh can’t wait to talk to the other neurologist on the 15th. Hopefully we get more insight.

                      I asked our neuro about the inaccuracy of EEG’s ( 1 of 2 are not detected) this was her response.



                      You are correct that EEG's can be normal (in between seizures) even if a patient truly has epilepsy. However, the likelihood of that happening for 3 separate EEG's as Evan has had, is pretty low. Unless we capture a spell while he is hooked up to EEG, no one can be 100% certain if it is or isn't seizure; however, with a persistently normal EEG background on several occasions, a behavioral spell rather than actual (electrical) seizure is far more likely. We can discuss further at our upcoming appointment. Thanks.

                      Comment


                        #41
                        Lostparent, I found this though I don't know much about the Epilepsy Foundation. It looks like a reliable source.

                        Only registered and activated users can see links., Click Here To Register...

                        You have shared the video with the doctor, right? Or the doctor has been able to observe your son having one of these episodes?
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                        Comment


                          #42
                          Thank you for posting the link however I did reference that when I asked my neurologist.

                          She has seen the video and out of all his doctors ( pediatrician, genetics, ENT, the several my wife works with( Gastroenterologist) his physical therapist, speech therapist, etc,etc the neurologist is the only one who thinks it’s not an issue.

                          I’m just hoping we are not setting ourselves up for disappointment with this new neurologist next month.

                          Comment


                            #43
                            Originally posted by Lostparent View Post
                            Ugh can’t wait to talk to the other neurologist on the 15th. Hopefully we get more insight.

                            I asked our neuro about the inaccuracy of EEG’s ( 1 of 2 are not detected) this was her response.



                            You are correct that EEG's can be normal (in between seizures) even if a patient truly has epilepsy. However, the likelihood of that happening for 3 separate EEG's as Evan has had, is pretty low. Unless we capture a spell while he is hooked up to EEG, no one can be 100% certain if it is or isn't seizure; however, with a persistently normal EEG background on several occasions, a behavioral spell rather than actual (electrical) seizure is far more likely. We can discuss further at our upcoming appointment. Thanks.
                            The first part of the Doc's message I can somewhat believe but unless an EEG or EKG is 24 hrs long it can still miss things and what the heck does this doc mean by "a behavioral spell"? Does your neurologist think the "a behavioral spell" is voluntary or involuntary I wonder?? Keep records of this for the next neurologist and keep all sources. Make it clear at your 2nd opinion that what your son did in the video seems INVOLUNTARY!
                            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                            Comment


                              #44
                              ((((((Lostparent)))))) ~

                              You named at least a half dozen medical professionals, who disagree with your son's neurologist. You have our opinion, which disagrees with your son's neurologist. You have researched and found information to support your and our disagreement with your son's neurologist.

                              Your son has various neurological issues, any one of which could contribute to sporadic seizures. So, the go to opinion would be: this is a neurological issue, not a behavioral issue. Whether the episodes are seizures or something else, it is either neurological or metabolic.

                              Of course, we could all be wrong, and she could be right. So, perhaps she can share with you the literature to back up her assessment that these are behavioral "spells." Odd term in today's medical world. Common modern terms are: episodes, events, occurrences.

                              Remember what I wrote earlier about neurologists, and how difficult it is to find one you like or feel is caring for your child properly. I went through more neuros than I can count now. All you can do at this point is see the neuro at Cincinnati Childrens and go from there. Pray that you get a great, compassionate, caring physician, who thinks outside of the box. If you don't, then you'll have to find another neuro.

                              That's why I suggested that you start looking for another neuro now, while you're waiting. If this one doesn't work out, and you don't want to be stuck with your current neuro, then you'll need a new one. So, if you haven't started looking, then I highly recommend you start now.

                              You may not find the ideal neuro, as I also stated, but you'll have to ferret through a few to find one, who listens to you and makes an effort.

                              Please take funnylegs4 advice, if you aren't already doing so, and chart everything about your son. What he eats, his environment, and changes you notice, etc. And keep your phone handy to record any episodes that you find concerning. All of that information will help your new neurologist with treating your son.

                              When my son, Jonathan, was 18, he started having breakthrough seizures. We were with an HMO, and Jon was a Medicaid patient. We expected to be sent to a shoddy neuro, but we ended up in a very high rent district with a neuro, who drove a porche, parked in the lot as we drove up.

                              This neuro never examined Jonathan, barely listened to what I had to say, then he asked me to describe Jon's seizures. I said, "He's having one now," as i stood beside Jon, and the doctor didn't even look up from his pharmacy pad. "Give him this," he said as he handed it to me, without even looking at Jon. He walked out.

                              That's just one of dozens of examples I could give you.

                              You never know who you'll meet, until you meet that person. From there, you either stay or find someone else. And you keep searching, until you find someone, who will actually listen to you and do what is best for your son.

                              Please start looking for other neuros and other options now, just in case you're disappointed with the doctor at Cincy Childrens. Don't give up on Nisonger either or any other developmental center referral you can obtain for your son. He will benefit from testing and therapy.

                              Keep fighting.

                              Love & Light,



                              Rose
                              Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                              Comment


                                #45
                                Dumb question time, should I mention to our current neuro that we are getting a 2nd opinion?

                                I’ve never thought about it but it kinda popped in my head this morning.

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