Major crisis - questions regarding going to ER!

[Stephanie2]

Thank you all for the suggestions and support! It means so much to me on a night like tonight! Somehow dh got him to de-escalate and he is now in bed, not sleeping, but he is quite.

Congratulations to your husband. I am so glad you didn't have to go to the ER.

Regarding the steroid taper, can you slow it down? We slowed ours down by a ton. Most tapers reduce by 10mg. I recommend that as you get to lower doses reduce it by 5mg ending with cutting the tablet in half. The problem with steroids is that our bodies stop producing it when we take them. So we actually crash (for a few days) until our bodies are able to get production up again. Another problem, in regards to inflammation, is that for some people, the inflammation can come back stronger once the steroid is gone. A slower taper helps to keep it from coming back so fiercely.

Hopefully, once things settle down you will receive the benefits. Sometimes I dream of putting mine back on a steroid burst with taper so, that I can have a few weeks of desperately needed rest.

 

Gosh, what you say seems to make sense, things did escalate once we started tapering down. But what you are suggesting is opposite what our practitioner suggested to me today. He said to speed up the taper b/c it may be the steroid itself (or the effect it has on the gut) that is creating such havoc. I have to give this some thought, although I don't even have enough orapred to do what you are saying so I guess I don't have much of a choice. You both make sense, but I wonder in our case if it has to do with the steroid itself and getting off of it quickly is in our best interest. I do know this, what I am seeing is not a rebound of pandas. totally different. in fact, I can see pandas getting better everyday.

 

 

Stephanie, I forgot to mention about the IVIG she got. I had taken her to our Immunologist in October for testing as she had low pneumoccocal titers a few years ago. She tested deficient for IgA & IgG and he ordered Ig for her. That started a process of being approved at home for Sub Q as my initial understanding was that it was the same as getting the IVIG - I later learned it's a much smaller dose. We did 2 weeks at home and she was getting increasingly sicker - more rages & as you've read, lasted hours.

 

The day she was due for her 3rd weekly infusion, we wound up in the ER again. They did not do the IVIG there, but they did transfer us to a children's hospital (further away & under the care of a pediatric neurologist we'd seen about a year and a half ago) that did. The first day, they ran oodles of tests and the next night, they did the first hdIVIG, second one the following night - 1 gram each night for a total of 2 grams. That is where we are going now (yesterday and again today) for her 2nd set of IVIG infusions - receiving 0.5 grams each day this time, for a total of 1 gram. We see Dr. B on Jan 26 (I was able to move it up a little, thank goodness!) and I anticipate we will know more about her future infusions after that.

 

I don't know if being already approved for the SubQ Ig made a difference in her case. Her neurologist told me it would never be enough & she needs IVIG to get better. Looking back, I wonder if the SubQ gave her just enough boost to make her sicker as the IVIG is clearly helping... slowly, but it is.

 

Can you tell me how long it took to get efficacy from risperdal? I started it this morning (had some on hand), it almost seemed to work right away. Maybe it is just that it made him tired.

 

 

Start lifting. Get strong. Learn defensive moves and blocks. Eye of the tiger my friend. Eye of the tiger. I hold up my palms and let the kid punch away.

 

You had me cracking up with this, which is a nice break from the tears I have had most of the last few days! To be honest, I have been working out like crazy in the past 6 weeks in order to mentally and physically handle this life (I have 2 of these pandas boys). I am in really great shape for the first time in years as a side effect!!