Had Our F/u ... Very Interesting Treatment Plan

[jjb]

So we had our follow up yesterday. As I have mentioned, Ava was DXed with hereditary aut neuropathy.

Ava has episodes every 4 weeks or so of autnomic blips I call that cluster. Will begin with a week or so of behavioral changes, a night of her o2 dropping and HR elevating and then the next day extreme fatigue, nausea and vomiting and sometimes more episodes of 02 dropping hr elevating.

We have not been sure if these are epileptic autonomic seizures or autonomic activation that is not seizure.

Anyway, aut neuro yesterday suggested trying Tylenol when we know something is brewing. Give three times a day and see if this prevents and "episode" of the clustering.

If Tylenol does not work, we will try ibuprophen. If that does not work we would try klonopin.

Klonopin I can see working whether sz or non sz.

Evidently, tylenol & ibuprophen help with hypothalamus issues.

Is anyone familar with the use of tylenol or ibuprophen as a treatment to relieve symptoms of dysautonomia?

Thanks,

[dsdmom]

Out of curiosity - who is your neuro?

My neuro once suggested tylenol as a way to possibly help with heat intolerance issues. Tylenol works on the hypothalamus - which is certainly involved in the ans - so maybe there is some merit to this.

[jjb]

We see P Novak.

There are heat intolerant issues involved for sure, I guess it is not clear to me as to whether the thermo reg issues are trigger a domino type effect causing these episodes (she does some time spike a high temp during these episodes.

Out of curiosity - who is your neuro?

My neuro once suggested tylenol as a way to possibly help with heat intolerance issues. Tylenol works on the hypothalamus - which is certainly involved in the ans - so maybe there is some merit to this.

[jjb]

Something else interesting aut neuro mentioned was that some neuros do not believe in the autonomic seizure.

This is a very interesting claim.

I have spent the past few years learning everything I can about autonomic seizures. I have most of not all of the articles written by Panayiotopoulos and one of his books (as in Panayiotopoulos Syndrome ... a syndrome of autonomic seizures).

[dsdmom]

I see Novak as well - interesting about his theory on tylenol...

Let me know how it goes.

I see him next week for a follow up.

[giftcreations123]

I just read somewhee, I have to dig it out, that they found an enzye in Tylenol that works on the Central Nervous System...hmm

[flop]

I've not heard of paracetamol (tylenol / acetaminophen) being used specifically for autonomic seizures (but I don't know much about autonomic seizures at all) but it certainly is used in children who have febrile convulsions. These kids get a high temperature from a cold or other virus, the fever affects the brain and the fever allows a seizure to happen (fevers lower seizure threshold). For kids that have had these types of seizures their parents are always advised to use paracetamol and/or ibuprofen to lower their fever as soon as they start to get a virus to prevent them having a seizure.

Both paracetamol (acetaminophen) and ibuprofen will lower a fever.

I am guessing that if Ava's temperature rises even a little it could increase the chances of an autonomic seizure. In her case it could be an autonomic problem that causes they fever rather than a virus but it would have the same effect of lowering the seizure threshold.

It will be interesting to see if it helps Ava - keep us posted.

Flop

[jjb]

Thanks flop for your reply.

The tylenol is NOT for the autonomic seizure but for the non-seizure autonomic activation/dysautonomia (I think non-seizure overactivity in the hypothalamus)

The idea is different than bringing down a fever to prevent a febrile seizure .... or maybe not. Just maybe a febrile seizure is simply triggered by autonomic activation ...which is what we have been saying and wondering about Ava's non-febrile seizures and is why we have trying so feverishly to correct these autonomic issues.

Sorry if that sounds confusing. I am overtired and headachy today.

Anyway, we are not targeting fever, but targeting the specific autonomic "storm" so to speak. The clustering of sudden nighttime tachy, o2 desats, nausea & vomiting, and extreme fatigue.

If the tylenol or ibuprophen work, this neuro believes it will signify that the episodes are autonomic activation without seizure.

I've not heard of paracetamol (tylenol / acetaminophen) being used specifically for autonomic seizures (but I don't know much about autonomic seizures at all) but it certainly is used in children who have febrile convulsions. These kids get a high temperature from a cold or other virus, the fever affects the brain and the fever allows a seizure to happen (fevers lower seizure threshold). For kids that have had these types of seizures their parents are always advised to use paracetamol and/or ibuprofen to lower their fever as soon as they start to get a virus to prevent them having a seizure.

Both paracetamol (acetaminophen) and ibuprofen will lower a fever.

I am guessing that if Ava's temperature rises even a little it could increase the chances of an autonomic seizure. In her case it could be an autonomic problem that causes they fever rather than a virus but it would have the same effect of lowering the seizure threshold.

It will be interesting to see if it helps Ava - keep us posted.

Flop

[flop]

Thanks for the explaination Jen, I hope it works for Ava.

Flop