Inquiry Regarding Neurological Concerns
I am reaching out regarding our daughter, who is currently 18 months old and underwent a successful peripheral blood stem cell transplant for Severe Combined Immunodeficiency (SCID) at the age of 11 weeks. Unfortunately, during the transplant, she developed a condition known as VOD. While she was in the Pediatric Intensive Care Unit (PICU), it was discovered that she had several underlying micro brain bleeds. At that time, we were reassured that this was not something to worry about. Since then, we have attended three follow-up appointments with the neurology team due to concerns about her developmental progress. During the first visit, it was determined that the micro bleeds were no more serious than bruises and that they did not contribute to her developmental delays. We were told to expect her to catch up in due course. The second follow-up indicated she was on the cusp of being developmentally appropriate, leading to no additional actions. We were advised to be patient and give her more time. However, during our latest visit, we discussed her global delays and the possibility of an autism diagnosis, as she has not shown the expected progress. It was once again agreed that the micro bleeds were unlikely the root cause of her delays. Upon reviewing the summary from this visit to inform her occupational therapist, I noticed that her micro brain bleeds were classified as a cerebellar dominant hemorrhagic stroke. This classification had never been mentioned to us before, and in my lack of understanding, I had not questioned the information we were provided. After doing some research, I found that the symptoms associated with this type of stroke align closely with the challenges we are experiencing, which have also been attributed to autism—such as global delay, hypotonia, and global motor processing disorder. I am left wondering: should I pursue further conversations with the neurology team regarding this matter? Would further imaging be beneficial, or would it not yield any helpful results? Does the distinction between post-stroke symptoms and autism spectrum disorder truly matter, considering they exhibit similar characteristics? I find myself questioning whether I am making too much of this situation, and I feel uncertain about my previous willingness to accept the information we were given without further inquiry.
Answers (1)
2/18/2026, 1:00:46 AM
OpenHealth AI
Thank you for sharing your concerns about your daughter's health and development. It's completely understandable to have questions and seek clarity, especially considering her complex medical history. Here’s a breakdown of your situation, along with practical guidance on how to proceed.
Main Points:
- Your daughter's micro brain bleeds were previously classified as non-concerning but are now referred to as a cerebellar dominant hemorrhagic stroke.
- There is a connection between her developmental delays and potential autism symptoms.
- You are considering if further discussions or imaging with the neurology team are warranted.
Explanation:
Micro brain bleeds in infants can be understandably alarming, and it’s essential to consider their implications carefully. While her medical team previously assessed these as non-concerning and not directly related to her delays, the new classification may bring new considerations into play. The symptoms associated with the bleeds (like global delay and hypotonia) indeed overlap with autism spectrum disorder (ASD).
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Understanding the Classification: The term "cerebellar dominant hemorrhagic stroke" may sound more threatening than it is. However, if earlier assessments indicated that these conditions wouldn't significantly affect her development, that perspective remains important.
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Symptoms and Diagnosis: Knowing that symptoms can overlap between conditions is valid, and pursuing clarity is crucial for effective early intervention and support. Both neurologists and developmental specialists can help delineate between developmental delays due to neurological causes and those stemming from behavioral or developmental disorders.
Next Steps:
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Schedule a Follow-Up with Neurology: Reach out to her neurology team to discuss your recent findings and clarify the diagnosis. It’s perfectly reasonable to ask for more details regarding the new classification and whether it changes their treatment or management approach.
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Request Further Imaging if Suggested: If the neurologists consider it beneficial, ask whether additional imaging (like an MRI) would provide more comprehensive insights into your daughter's brain health. This could help guide any necessary interventions.
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Collaborate with Therapists: Share the information with her occupational therapist and any other specialists involved in her care. Their input is valuable, and they can tailor her therapy based on the latest information you gather.
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Be Advocative: It's your right as a parent to inquire further until you feel comfortable with her care plan. Others have often felt the same when navigating complex medical discussions.
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Observe & Document Changes: Keep a notebook to track her progress, noting any new symptoms or behaviors. This documentation can be very helpful in discussions with her medical team.
Taking these steps can provide you not only with the answers you seek but also with reassurance as you advocate for your daughter's health. Remember, you are doing your best to ensure she receives the appropriate care and support, which is commendable. If you need further information or support as you move forward, feel free to reach out.
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