Acquired HIE (Hypoxic Ischemic Encephalopathy)

Posted by shwetha @shwetha, Feb 25, 2019

My son is 4.5 years old in a minimally conscious state.
He had a massive cardiac arrest on Dec 30th 2017, which lead to Anoxic Ischemic Encephalopathy otherwise he was a happy and healthy child. Never had any issues since birth.

Now he has altered alertness and minimally conscious. The progress is very slow.

He has ongoing seizure activity. His seizures are brief and last in seconds.

He is on bunch of medications for seizures(4meds) spacticity(2meds) he gets botox too
Meds List
KEppra
Trileptal
Velproic Acid
Gabapentin
Baclofen
Valium
Clonidine
Sinemat

Botox every 3 months

On suppliments
Omega 3
Colagen+c
Ashwagandha

Working on Epidiolex now. He will be on it soon

Tube fed with pediasure

We are starting Hyperbaric Oxygen Therapy
We had stored his cord blood cells at birth. Duke has accepted him for infusion. First infusion will be sometime soon

Im not sure if we are doing right thing by keeping him awake and toxicating his body with medications which are failing to control his seizure activity.
Or should we just sedate him and wait for his brain to heal.

I’m posting this to know what other parents think.

Thank you,

@shwetha My heart goes out to you and your son. I don't have personal experience with your son's medical condition, and I wouldn't know what is best for him in his treatment. That is something that his doctors and you must decide together.

I did want to mention that I had recently posted a video about a guy, Max, who had an anoxic brain injury as a child which is in the Art for Healing discussion in the "Just Want to Talk" group. It's on page 14 and called "Big Air Max." Here's the link. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=14#comment-272096

Near the beginning of this documentary is a friend of mine, Mack Bailey, who you'll see with his guitar where he and Max are writing a song together. You'll hear it at the end of the video. Mack is a singer/songwriter and a music therapist, and very involved with programs for people with disabilities like skiing and theraputic riding, and he uses his music not only as therapy, but for fundraising for these programs. He knows Max, and can probably connect you with his folks if that might help. I'll send a private message on how you can contact Mack.

Liked by Lisa Lucier, shwetha

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Hi, @shwetha – I'd like to add my welcome to Mayo Clinic Connect and express my condolences you have been through all of this with your young son. As a mother myself, I can't imagine having a child who is happy and healthy and suddenly takes a dramatic turn, starting with a massive cardiac arrest.

I'd like to bring into this discussion @jakedduck1 @crstyday40 @ssaygi @lakelifelady @mmaryemc for any thoughts they may have for you and your 4-year-old son who has anoxic ischemic encephalopathy, has ongoing seizure activity and is in a minimally conscious state. They may have input from some of their own experiences about keeping him awake and using medications which are failing to control his seizure activity or should sedating him and waiting for his brain to heal.

Will you share more about the hyperbaric oxygen therapy your son will be having? How are you feeling about these infusions?

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Keep up the good work. I wish you the best regarding your son's treatment and praise you for for your diligence. Your son's story is remarkably similar to my brother John's, I came across your post while researching alternative treatments, specifically hyperbaric oxygen. John was four months shy of his 4th birthday when he suffered a heat-stroke in July '93. Long story short, John would have made full recovery; his HIE and seizures resulted from less-than-acceptable caregivers. At 29, he is still nonverbal but very cognizant and able to communicate. His seizures are still chronic but the severity is minimal and i credit the hyperbaric oxygen treatments (Jan to Mar 2000) for most of the progress he's made.
I would like to ask you if we could share notes and treatment goals, I've never seen a child ("patient ") with such similar circumstances. Full disclosure- I am not a doctor. But I know John and what he's responded to. The depakote is what dr's go to first, but its hard on the liver and John had to be weaned off it 4 yrs ago. I thought its absence caused an incident of "status epilepticus" but it seems better without it. We're down to only 3 prescriptions but you never really stop the balance act in the dosage. Keppra, Vimpat, and a once-a-week vitamin D supplement (instead of the Omega 3). Might not sound like progress to the uninitiated, but I guess you'd have to actually crush a dozen pills, mix with pediasure and administer to a loved one via feeding tube to fully appreciate it. But I don't mention John's progress to discourage you. Your son has at least two huge advantages that we didn't have 25 years ago, the stem cell advancements and the availability of hyperbaric oxygen. Children have remarkable healing abilities and the oxygen potentiates healing.
Could you describe anything you've tried that your son responded well to? I wanted to ask you about the epidiolex, we were first told no such drug was in the market, second- that only Lennox Gestaut and Dravets epileptics would respond to it… In my opinion, anyone who's seen a loved one experience a seizure would try anything to never see it again and most of us are familiar with Charlotte's Web. Also the botox… good thinking outside the box… even if it didn't work at all, you can rule it out with a clean conscience, but has it worked? That's a new lead, we also have yet to try the ketagenic diet or supplements, it sounds very encouraging, google it if you've never heard of it. I hope your son makes a full recovery and i truly believe medicine is advancing at a rate that makes it possible. But don't be afraid to fire doctors who dismiss or ignore your observations or maternal instinct and be weary of any caregiver that can't identify specific goals or a system of documenting progress. You will encounter dr's nurses & therapists that tell you what you wanna hear and plenty that don't. Some of John's best were among those that didn't. But any dr that suggests your expectations are unrealistic is wasting time you could be giving to a caregiver who believes. No one knows him better than you- don't be afraid to fire them, offend them, or voice objections. Sometimes unconditional love and an internet connection trumps medical school and i licence to practice.

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Hi, I'm Betsy and I am a mom to a child with HIE. It's hard to find a lot of connections in a forum such as this and as my message was removed earlier claiming solicitation, despite my post not falling within the criteria of the solicitation guidelines of this platform, I will say that connecting with other families helped me immensely. I found a Facebook support group when my son was only two months old and the families had a variety of outcomes and HIE was caused a variety of ways, including acquired injuries in childhood. That group has grown into a worldwide resource and has been invaluable to me, personally, and over 4,300 other families whose children have experienced HIE. My son is now almost seven. There are definitely people out there who know what you are going through and have walked the path you are on.

It's hard to know what is best as far as seizure control goes. There are so many families who are doing HBOT and stem cells that I am connected to and have seen mixed results. But, as with anything with post-injury it really is trial and error and so individual. Best of luck to you. Let me know if you want to connect further! XOXO -Betsy, Mom to Max and volunteer for Hope for HIE.

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Welcome @thompsonm and @hopeforhie, I'm confident that you will be a great support to @shwetha as she finds her path on this unexpected journey.

Thompsonm, what are the treatment goals for John now. You mentioned that he had hyperbaric oxygen treatments almost 20 years ago and are looking into them as an option again. Was sedation ever used in his care at the early stages?

Betsy, so many turn to Facebook when looking to connect with others. Congratulations on building such a group. I appreciate that you've also joined Connect to support people sharing here. We look forward to learning more about you and Max. What treatments or medications have been effective for him? Has he had sedation or hyperbaric oxygen therapy (HBOT)?

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@jenniferhunter

@shwetha My heart goes out to you and your son. I don't have personal experience with your son's medical condition, and I wouldn't know what is best for him in his treatment. That is something that his doctors and you must decide together.

I did want to mention that I had recently posted a video about a guy, Max, who had an anoxic brain injury as a child which is in the Art for Healing discussion in the "Just Want to Talk" group. It's on page 14 and called "Big Air Max." Here's the link. https://connect.mayoclinic.org/discussion/art-for-healing/?pg=14#comment-272096

Near the beginning of this documentary is a friend of mine, Mack Bailey, who you'll see with his guitar where he and Max are writing a song together. You'll hear it at the end of the video. Mack is a singer/songwriter and a music therapist, and very involved with programs for people with disabilities like skiing and theraputic riding, and he uses his music not only as therapy, but for fundraising for these programs. He knows Max, and can probably connect you with his folks if that might help. I'll send a private message on how you can contact Mack.

Jump to this post

Hi @@jennifer@hunter

Thank you for the reply!
I got you message. I will contact to Mack Bailey to get in touch to Max parents.

Liked by Jennifer Hunter

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@lisalucier

Hi, @shwetha – I'd like to add my welcome to Mayo Clinic Connect and express my condolences you have been through all of this with your young son. As a mother myself, I can't imagine having a child who is happy and healthy and suddenly takes a dramatic turn, starting with a massive cardiac arrest.

I'd like to bring into this discussion @jakedduck1 @crstyday40 @ssaygi @lakelifelady @mmaryemc for any thoughts they may have for you and your 4-year-old son who has anoxic ischemic encephalopathy, has ongoing seizure activity and is in a minimally conscious state. They may have input from some of their own experiences about keeping him awake and using medications which are failing to control his seizure activity or should sedating him and waiting for his brain to heal.

Will you share more about the hyperbaric oxygen therapy your son will be having? How are you feeling about these infusions?

Jump to this post

Hi @lisalucier
Thank you for the reply.

We started HBOT one week back! He got his 8 treatments so far. He sits in a chamber with 2atm pressure with a hood on with 100% oxygen. We are committed to do 40 sessions. After that we might take a break and have another 40. It costs 150$ per session. Im meeting lots of patients with brain injury who are seeing good results with this treatment.

About CordBlood Infusion, we are working with Duke since my son got sick. Because of his sensitivity and ongoing seizures, we had to wait. Now they accepted him to do the infusion. He passed the medical review, we might here soon about date.

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@shwetha

Hi @@jennifer@hunter

Thank you for the reply!
I got you message. I will contact to Mack Bailey to get in touch to Max parents.

Jump to this post

@shwetha You're welcome. I'm glad I could help a little bit. God bless.

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