I wanted to let you all know that at some point Monday morning, the doctors and staff at Akron Children’s Hospital are going to be meeting to discuss Gavin and what needs to be done to help him.
Something that I forgot to mention earlier was that they are going to do another EEG. This a stress EEG which is basically where they deprive Gavin of sleep and monitor for seizures.
It sounds cruel but it’s not really. When he is tired, he’s more susceptible to seizures and they can find more information that was missed during the last EEG. The last one was basically a wash because of the autonomic crisis. This could prove very beneficial in helping to control Gavin’s seizure activity.
We expect to hear from the hospital at some point Monday. That will give us a better idea of what we are dealing with and where we go from here.
As much as I hate the idea of an extended care situation, I think it’s the best thing we could do for Gavin. He needs to be closely evaluated for proper medication and treatment. Seeing him for only a few days isn’t enough to grasp the complexity that is Gavin. I hate the idea but we love Gavin and want him to have a future, free from anger and rage.
I miss Gavin, we all miss Gavin. However, we want Gavin to get the help he needs to be happy and safe.
I hope someday that he understands how much we love him and how difficult this is for is to do, especially for Lizze. She feels like a she’s lost her baby. Gavin, we love you and hope to see you soon.
This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.
-Lost and Tired
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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.
Very brave family. my heart goes out to you all.
Hi Rob, I just found your blog and have been reading and watching some of your videos. I wanted to let you know that my son (who is 9) has had similar meltdowns and we finally were able to get someone to help. Some of the things we have found as causal are: poor blood flow, inflammation in the brain, adrenal stress, food sensitivities, and lack of oxygen to brain cells. Some things that we started were:
-high doses of epsom salts baths (for sulfate deficiency causes lack of PST enzyme that is needed to detoxify colors in food)
-N-acetylcysteine supplement – builds up glutathione
-Inositol hexaphosphate – rids free and problematic calcium that may be causing calcifications in vessels or organs
-serrapeptase – dissolves fibrin in capillaries
-Vinpocetine – increases circulation and oxygenation in brain
-Diet high in unsaturated animal fats, omega 3 essential fatty acids (cod liver oil, flaxseed oil) and proteins
High doses of EPA (Nordic Naturals EPA Xtra) were suggested to us by a doctor. Immediately after starting with 6 gelcaps per day, we saw progress and the meltdowns started going away. Usually I tell people about the EPA, but I felt it was good to mention (above) what we did before it. Today, he has been meltdown free for 8 months. I hope this info may help you.
Liz
You’re all doing great, must be so over whelming to experience a new chapter to helping Gavin. This is only temporary for now, so realize you’ll have attentive answers soon. Enjoy the time with the other two and feel rewarded with that! It’s only temporary!