Page 1 of 7 123456 ... LastLast
Results 1 to 10 of 65

Thread: Lost parent looking for advice/what should we be asking neuro

  1. #1

    Default Lost parent looking for advice/what should we be asking neuro

    Good morning.

    New parent/member here, heads up this is a bit long ( sorry in advance).

    My son is 17 months old. Diagnosed with mild HIE at birth. Since then he has been diagnosed with both hyper/hypotonia, gross motor delay, macrocephaly ( 53cm/20.9 inched at 17 months, speech delay, mild myelnation delay and babbles but no words.

    Recently started having seizure like episodes( 3 in past 2 weeks). He also trips over nearly everything and tends to bump into walls etc.

    He has had 2 EEGí that were normal before seizure like episodes ( 3rd schedule on 14th)and 2 MRIís, most recent was last week.

    This is a copy paste of his MRI report. We are in the process of getting a 2nd opinion but we have to wait until Nov for the appointment.


    EXAM: MRI BRAIN WITHOUT CONTRAST.
    CLINICAL HISTORY: persistent developmental delay and macrocephaly ;Gross motor
    delay ;Increased head circumference ;Mild hypoxic ischemic encephalopathy
    (HIE)
    TECHNIQUE: Multiplanar multisequence MRI of the brain was performed without
    contrast.
    COMPARISON: 9/6/2018
    FINDINGS:
    No acute infarct, hemorrhage, or mass. Interval progression of myelination,
    within limits for age. However, white matter volumes remain slightly low with
    heterogeneous T1 and T2 signal. Focal areas of periventricular T2
    hyperintense, T1 hypointense signal in the periatrial white matter would be
    compatible with provided history of mild hypoxic-ischemic encephalopathy. More
    prominent enlargement of perivascular spaces with cystic/tubular morphology.
    Interval decreased enlargement of subarachnoid spaces bifrontally and at the
    vertex. There has also been improvement in appearance of mild ventriculomegaly
    and cavum septum pellucidum et vergae. Corpus callosum has a slightly gracile
    morphology. Hippocampal formations are relatively symmetric. Brainstem and
    cerebellum have normal in morphology.
    IMPRESSION
    1. Decreased but persistent enlargement of subarachnoid spaces.
    2. Mildly heterogeneous white matter signal, which could be seen with static
    or early progressive encephalopathies.

    While Iím not looking for diagnostic information Iím at a loss as to what questions we should be asking both his current neurologist and at the appointment for the 2nd opinion. His current neurologist blames all his issues on his macrocephaly.

    Any suggestions or advice on questions we should be asking his doctors?

    Thanks in advance for any help.

  2. The following 3 users say "thanks"


  3. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,430
    Blog Entries
    1

    Default

    ((((((Lostparent)))))) ~



    I'm glad that you found us, but I'm so sorry that your son has these complex issues. It is extremely overwhelming to seek answers for your child and feel as though you aren't receiving proper guidance and information on his condition.

    Do you feel that his current neurologist is incorrect that his issues correlate to macrocephaly? Has s/he given you justification for that diagnosis? Has s/he provided you with treatment information for macrocephaly? Would that treatment be similar or different, if there are other factors involved?

    Is your son taking any medications?

    The first thing I suggest is educating yourself about all of the issues and conditions mentioned in the MRI, if you haven't already started to do that. There is a lot there to digest, and I am not familiar with the terms, so I would have to look them up. I'm doing that these days for my husband's scan results, and it helps me to form questions for his doctor.

    Can you describe for us the kinds of "seizure-like" activity you son has had? There are a variety of types of seizures, and here is a helpful site on epilepsy:

    https://www.epilepsy.com/learn/types-seizures

    For seizures, I recommend that you consult a pediatric epileptologist.

    https://mickiesmiracles.org/first-diagnosis/

    I find it useful to make a list of my questions to take with me to the doctor. Also, use your phone or other device to video your son's seizure-like activity, as well as his walking to show his gait, balance, etc. to the doctor. Make a collection of videos at various times of the day/night as a collage, so the doctor has an idea of a typical day for your son.

    In my rather lengthy experience, some doctors can be intimidating, particularly neurologists. I can't even count the number of neuros I've met over nearly 50 years, and I can't recall one of them, who didn't have superiority complex. So, do not be intimidated. Be informed to the gills and be prepared to ask questions with confidence.

    The more you research on the internet the various conditions and terms, the questions you need to ask will become clearer to you. I can't emphasize this enough. You have to become the expert on your son, because you are the expert on your son. No one knows him better than you do. Every decision you make for him must be informed, so that you know he is receiving the proper care and medical treatment. You are his voice and advocate. You are his expert.

    I often said to physicians treating my children, "You have thousands of patients. I have two." Sometimes, we have to prove to our children's physicians that we know what we're talking about, so that they respect us as the Leader of our child's Medical Team. Remember that and assert your position as Leader, because you are.

    Our Child Neurology (CN) forum was once filled with hundreds of parents in the early 2000s. We are smaller now, but we are loving, knowledgeable, and experienced.

    You found us. You're not lost anymore. You're not alone. Welcome to the CN family.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  4. The following 3 users say "thanks"


  5. #3

    Default

    Thank you for your Welcome and reply Earth Mother/Rose

    It is frustrating, especially seeing that he can't talk yet so it's really difficult to know what's going on that he can't tell us.

    These are the questions I have come up with so far, although some of terms I admit I am having trouble finding online.

    This message is being sent by Klaus Schall on behalf of Evan Schall

    Dr. Slaughter,

    We have some questions about the MRI result.

    The 1st MRI showed a minor mylenation delay, is this still present or a concern? From reading the report it seems to be in normal parameters.

    The 1st MRI report did not mention any lesions. From my understanding hyperintense and hypointense T1/T2 indicate lesions on MRI reports, with a probability of T1 hypointense being permant or scar tissue. Is there a possibility that these may indicate MS or any other chronic conditions.

    I seen periatrial mentioned in the report as a location of the lesions in the white matter. However I can not find much as to what periatrial means or what region of the brain it may refer to. When I do search parietal lobe often comes up. Are they similar or the same thing? If lesions are found there can that be a cause of the suspected vision problems he has or his constant tripping/running into things?

    In the impression it mentions heterogenous white matter signal which could be seen with static or progressive encephalopathies. Is there any indication of having such issues currently or in the future?

    Outside of the scheduled EEG do you anticipate the need for further testing in the immediate future?

    Is there anything that I may not of touched upon in the report that gives you any additional cause for concern?

    Regards,


    The issue we have is we felt our neuro has given up. She told us a few months ago she was out of ideas and reffered us to genetics, which we had a microarray and macrocephaly panel done and showed no abnormal results. So we go back to neuro and she basically insist it's his macrocephaly that's the issue.

    We do have 2 videos and she did not seem concerned but when we showed our sons pediatrician he reffered us to another hospital ( Cincinnati Childrens) which from my understanding has a highly rated neurology program. We just have to wait until Mid November for our appointment. So we are fortunate his pediatrician is on our side and we have a place to go for a 2nd opinion.

    From our understanding and research not a whole lot can be done about his macrocephaly, so far the cause has not been determined and his head just continues to grow. The typical causes such as hydrocephaly have been ruled out. Fortunately the rate of growth has slowed.

    Thanks again,

  6. The following 3 users say "thanks"


  7. #4

    Default

    Doctors response to my questions. Next up after this is another EEG( had another seizure like episode yesterday)

    1. Myelination (where the white matter is becoming insulated), seems to be normal on this study which is good news. Also there is less space around the surface of the brain, and ventricles are a little less big than at last imaging.

    2. "Periatrial" and "Parietal" are not the same thing. The areas of white matter signal patchiness ("heterogeneous" signal) is in the white matter "surrounding the atria" (plural of atrium) of the lateral ventricles (= peri atrial). I think to summarize that finding, I would convey that the white matter signal is a little bit patchy around the ventricles.

    3. The white matter heterogeneity may or may not mean anything in the long term. I see this in some kids with mild delays and it eventually resolves, probably just is a variation of white matter development in those children; however alternate possibilities would be that it could reflect mild scarring (gliosis) in the white matter, or less likely, could represent a progressive (worsening) white matter condition. MS is extremely unlikely at his age but there are other categories of progressive white matter disorders that can affect children.

    Depending on Evan's continued developmental progress, we will probably plan to repeat the MRI at least once more (probably about yearly) to see how this white matter patchiness is progressing. I do NOT see any features/symptoms in Evan that outwardly point me toward any progressive process, but I cannot absolutely rule it out at this point.

    There are hundreds of different progressive conditions which could affect white matter, so for parents, I would try not to be too focused on researching any of these conditions until we have more information over time on how Evan is doing.

    We will discuss in more detail at next followup visit, and I can show them the images then if they'd like to see. Nothing to do for now."

  8. The following 2 users say "thanks"


  9. #5
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,754
    Blog Entries
    31

    Default

    Hi, Welcome to BrainTalk! I have a condition called Cerebral Palsy. Cerebral Palsy and epilepsy often occur together so I'm wondering if your sweet son has a mild form of my disability? My disability is not progressive but I had similar motor delay.

    Here's a description of CP: http://cripvideoproductions.com/about.php
    Cerebral Palsy (often shortened to "CP") is a brain injury that happens before, during, or shortly after birth. It can be caused by lack of oxygen to the brain or conditions such as a fetal brain hemorrhage, which is similar to a stroke, but in most cases the reason for the brain damage is unknown. Cerebral Palsy affects the motor areas of the brain in a vast amount of ways depending on where the damage in the brain occurs. It usually causes the muscles to be too tight (spastic) or too loose because the brain signals are constantly being misfired throughout the person's entire life. The misfiring can lead to issues with balancing, coordination, speech, proprioception, body alignment, and even a life long retaining of certain infant reflexes such as the Moro Reflex. The Moro Reflex is the startle reflex in babies and usually disappears when the baby is under 6 months of age but people with CP can have it as children and adults. It is essentially a built in pre programed fear of falling. CP can affect one side of the body (called hemiplegia) or both sides of the body. Every case of Cerebral Palsy is unique and can range from being so mild that it is almost unnoticeable to being so severe that the person uses a wheelchair full time.

    Cerebral Palsy can usually be detached on MRI because the brain lesions in CP look like a stroke but not always. Just a thought. There is also a condition that mimics motor delay in CP but is caused by a lack of a particular protein the brain needs for functioning and is unrelated to CP. The name escapes me. I pray your son does not have a progressive condition.
    Last edited by funnylegs4; 10-04-2019 at 09:38 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  10. The following user says "thanks"


  11. #6

    Default

    Quote Originally Posted by funnylegs4 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi, Welcome to BrainTalk! I have a condition called Cerebral Palsy. Cerebral Palsy and epilepsy often occur together so I'm wondering if your sweet son has a mild form of my disability? My disability is not progressive but I had similar motor delay.



    Here's a description of CP: http://cripvideoproductions.com/about.php
    Cerebral Palsy (often shortened to "CP") is a brain injury that happens before, during, or shortly after birth. It can be caused by lack of oxygen to the brain or conditions such as a fetal brain hemorrhage, which is similar to a stroke, but in most cases the reason for the brain damage is unknown. Cerebral Palsy affects the motor areas of the brain in a vast amount of ways depending on where the damage in the brain occurs. It usually causes the muscles to be too tight (spastic) or too loose because the brain signals are constantly being misfired throughout the person's entire life. The misfiring can lead to issues with balancing, coordination, speech, proprioception, body alignment, and even a life long retaining of certain infant reflexes such as the Moro Reflex. The Moro Reflex is the startle reflex in babies and usually disappears when the baby is under 6 months of age but people with CP can have it as children and adults. It is essentially a built in pre programed fear of falling. CP can affect one side of the body (called hemiplegia) or both sides of the body. Every case of Cerebral Palsy is unique and can range from being so mild that it is almost unnoticeable to being so severe that the person uses a wheelchair full time.

    Cerebral Palsy can usually be detached on MRI because the brain lesions in CP look like a stroke but not always. Just a thought. There is also a condition that mimics motor delay in CP but is caused by a lack of a particular protein the brain needs for functioning and is unrelated to CP. The name escapes me. I pray your son does not have a progressive condition.
    Thank you for the reply. One of our first concerns was/is CP. Unfortunately our neurologist is pretty dead set against anything we suggest thatís not macrocephaly or genetics related.

    We are anxiously awaiting our 2nd opinion in Nov. No idea what the new neurologist will say but hopefully offer some new insight at the very least.

  12. The following user says "thanks"


  13. #7

    Default

    Quote Originally Posted by funnylegs4 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi, Welcome to BrainTalk! I have a condition called Cerebral Palsy. Cerebral Palsy and epilepsy often occur together so I'm wondering if your sweet son has a mild form of my disability? My disability is not progressive but I had similar motor delay.

    Here's a description of CP: http://cripvideoproductions.com/about.php
    Cerebral Palsy (often shortened to "CP") is a brain injury that happens before, during, or shortly after birth. It can be caused by lack of oxygen to the brain or conditions such as a fetal brain hemorrhage, which is similar to a stroke, but in most cases the reason for the brain damage is unknown. Cerebral Palsy affects the motor areas of the brain in a vast amount of ways depending on where the damage in the brain occurs. It usually causes the muscles to be too tight (spastic) or too loose because the brain signals are constantly being misfired throughout the person's entire life. The misfiring can lead to issues with balancing, coordination, speech, proprioception, body alignment, and even a life long retaining of certain infant reflexes such as the Moro Reflex. The Moro Reflex is the startle reflex in babies and usually disappears when the baby is under 6 months of age but people with CP can have it as children and adults. It is essentially a built in pre programed fear of falling. CP can affect one side of the body (called hemiplegia) or both sides of the body. Every case of Cerebral Palsy is unique and can range from being so mild that it is almost unnoticeable to being so severe that the person uses a wheelchair full time.

    Cerebral Palsy can usually be detached on MRI because the brain lesions in CP look like a stroke but not always. Just a thought. There is also a condition that mimics motor delay in CP but is caused by a lack of a particular protein the brain needs for functioning and is unrelated to CP. The name escapes me. I pray your son does not have a progressive condition.
    We originally were concerned CP, and will bring it up when we get our second opinion next month. His neuro that he has now seems to be fixated on his macrocephaly for his development delays and balance/walking problems.

  14. The following user says "thanks"


  15. #8
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    959

    Default

    Hello and welcome to braintalk. I'm so sorry you are feeling so lost and dealing with so much. I'm glad you found the support here. I have a daughter who has Down syndrome and several other health issues, the most significant being a incurable brain disease called moyamoya. It caused strokes for her when she was 5. We needed to seek out a large children's hospital(Boston Children's Hospital) to get her the treatment she needed and it was the best thing we did. I think a large hospital like that really knows better how to diagnose and treat young children. They seem to have more compassion and try to work with the whole family. I hope this will be your experience at Cinncinati Children's. I don't have any input on the scans and what they mean for your child but I do know what it's like to feel lost and alone in the journey to diagnosis and treatment. Please keep us posted and I will keep your family in my prayers.
    Mary Grace

  16. The following 2 users say "thanks"


  17. #9
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,754
    Blog Entries
    31

    Default

    Quote Originally Posted by Lostparent View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Thank you for the reply. One of our first concerns was/is CP. Unfortunately our neurologist is pretty dead set against anything we suggest that’s not macrocephaly or genetics related.

    We are anxiously awaiting our 2nd opinion in Nov. No idea what the new neurologist will say but hopefully offer some new insight at the very least.
    You’re very welcome! Thanks. I’m sorry the Neuro is so fixated on genetic conditions. A good doctor should be looking at all possibilities. Most people I know with neurologic problems have no genetic conditions but it took longer to diagnose because like your doctor the medical community seems to have an annoying assumption that: Disability = Genetics. I googled Macrocephaly and it looks like Macrocephaly can come in NON genetic forms and yes Cerebral Palsy and Macrocephaly can occur together. https://www.ncbi.nlm.nih.gov/pubmed/1945471 It might be worth asking at the second opinion if your son’s thalamus is enlarged because the thalamus is involved in a lot of neuro conditions. Keep us updated? Tell us what happens at the appt in Nov?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  18. #10

    Default

    With his macrocephaly he's 20.9 inches( 53 cm iirc) head circumference at 17 months, which puts his head size around his 11 year old brothers. No idea if his thalamus is enlarged but I'll check into it. It's very possible his head size is causing problems but in my mind at least there is an equal chance of it being something else and they are too focused on his macrocephaly, especially given his last MRI.

  19. The following 2 users say "thanks"


Page 1 of 7 123456 ... LastLast

Similar Threads

  1. Replies: 6
    Last Post: 07-29-2013, 08:26 PM
  2. I think Every Parent Here will Want to Read this
    By Donna Thomson in forum Child Neurology
    Replies: 4
    Last Post: 12-18-2012, 07:11 PM
  3. Replies: 9
    Last Post: 11-25-2012, 09:57 AM
  4. Sex and The Special Needs Parent
    By Donna Thomson in forum Child Neurology
    Replies: 5
    Last Post: 07-02-2012, 04:53 PM
  5. Parent's Suicide
    By britsbff in forum Anxiety Disorders (General)
    Replies: 4
    Last Post: 01-03-2012, 01:32 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.