Friday, July 29, 2011

Still battling the big wave

Dante, happy inside the hyperbaric oxygen chamber
I haven’t written in some time because we’re still battling the big wave that hit us a few weeks back.  Over five weeks ago, we stopped the MMR clearing because Dante began a detox period triggered by the clearing.  We have seen this before.  It is a tough period with little visible progress until the end.  Over a week after the last MMR 1M dose, Dante began to fall unexpectedly.  Within a week these falls became more frequent; they also began to look to us like mini sudden seizures.  He would drop this head forward suddenly and fall on his bottom, totally awake when he hit the ground.  The neurologist confirmed that Dante was having myoclonic seizures and his seizure medication was increased. 

As recommended by his Autism specialist, we began hyperbaric oxygen therapy right after these seizures began.  I have read about a lot of children with autism who have benefitted from these therapies, and lately I found out it could help with seizures as well.  I thought the oxygen would help with all the detox Dante has had because of the vaccine clearings, and hopefully make that process smoother.  Over the last couple of weeks Dante has had over twenty sessions in the chamber.  His behavior has been excellent, he has been super happy and eating and sleeping very well.  Still, his seizures have not decreased…which has kept me busy and not able to blog as often.

It has been extremely difficult to see the light during this process.  We have increased his seizure medication twice, and that hasn’t stopped the seizures.  Next we tried a new homeopathic remedy and that didn’t do the trick either.  Upon discussing all this with Dante’s autism doctor, he feels that Dante’s body is reacting super well to the oxygen, but that his brain is very sensitive to it.  He recommended that we lower the level of oxygen and try to continue the therapy until the end of the month.  The benefits for him could be so great.  Honestly, this is where faith comes in.  Should I trust that the benefits associated with oxygen are worth a period of these seizures?  Dante’s homeopath thinks this symptom could also be a temporary phase during his healing.

At this point in time, I have decided to continue the oxygen therapy.  Dante has been so happy and well behaved even though he is also detoxing that I feel he is benefitting from it.  He is wearing a helmet to protect his head and he is supervised the whole time he is up, to protect him from hurting himself.  That is the price to pay.  I am trying to make the best choice for Dante based on my observations at this point.

And on a happy note:  right around the time these crazy seizures started; Dante (completely unexpectedly) began to hold the reins of the pony he rides!  This is huge.  Dante never holds anything, less so a bicycle handle bar or the reins on the pony.  Well, not only did he hold the pony reins for the whole session, but during swimming he held onto the kick board (this is the board the children hold on to to practice their kicking while swimming).  My son is using his hands to help himself!  I will hold that positive thought in my head while we try to ride this big wave safely to shore.  Please keep him in your prayers!


AnxiousDAD said...

Please have your child rechecked for PKU(phenylketonuria). Although it is a part of birth screening, false negetives and incorrect screenings happen all the time. It is a simple blood test that measures the amount of the amino acid "phenylalanine" in the blood.
Reference ranges 0-6mg/dl--everything is fine. 6mg/dl to 10mg/dl mild form that needs some treatment. If more than 11mg/dl, then classical PKU. PKU is an avoidable cause of mental retardation in children if it is timely diagnosed and treated. Discuss with your neurologist about this as well. Your son sounds more PKU than autistic to me.

Mom Connected said...

Thanks for the recommendation. I will look into this with Dante's neurologist...

Lucy Alonso said...

I'm so sorry you're having such a hard time, I her seizures and get so scared. I'll pray that the HBOT helps him, our experience with it was not too great, it increased yeast like crazy in Alex. But lets hope it won't be Dantes case. Just thought I'd tell you so you knew it was a risk, same thing happened with aracely's son.

I truly hope things start going Dantes way soon, I love hearing improvements from him, that is always what I pray for. Be patient, hang in there, and keep the HOPE strong, that's all we can do.

Mom Connected said...

Wow, Lucy, I was not aware that the HBOT could increase yeast! I don't believe that I'm seeing that in Dante - i sure hope that isn' the case. I would like to find out more about your experience with it.

Thank you for your kind words. We need all the hope we can get! All prayers are welcome!