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Full blown rage episode ... so worrisome...


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Thanks for all the input!

Amy, yes it absolutely makes sense. What are you using when you suspect that? Her LFT's remain elevated, so I want to be careful what I give her.

Meg's Mom, I have tried increasing her intake of tyrptophan, but apparently, to no avail... I don't see a difference. I am starting to alter her diet more. She has Reactive Hypoglycemia, GERD and migraines, so I already alter it for all of that, but I'm starting to look at removing other things that may help support stabilizing her.

I learned yesterday of another reason she may have had such a hard day Thursday and erupted on Friday... I have strep throat. I called her at my ex's house (she is there this weekend) and asked her how she was feeling. She told me that she still has a sore throat and it had returned on Thursday after being gone for a while - due to the low IgG levels, she was unable to clear strep for months. She said her headache and nausea increased the same day while my symptoms started on Friday... praying the antibiotic she's taking will hold her and that she was simply reacting to my strep and does not have it herself!

Odd thing is that I was only out of the house one time all week, for dinner on Tuesday evening. She was out the same evening... with my ex for Valentine's Day dinner. I am very interested to find out what all our labs show for strep titers... and her Myco and IGeneX.

In the meantime, does anyone know where I can pick up petri dishes in bulk, so I can start swabbing my entire house??? :wacko:

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Hi, Denise.

 

Hope today is a better day for you. My heart goes out to you. The rages you are describing are IDENTICAL to my 8 year old's. Bone-chilling, isn't it?

My daughter bites herself, me, her sister.. she pinches (to the point of bruising me), kicks, slams doors, throws phones, pulls towel racks out of walls.. threatens to kill all of us with a knife (never tried that just says it), hates God, you name it..

We have two dogs.. One of them is so scared, I'm afraid he may actually attack her - they really sense something very wrong is going on..

This can last anywhere from 5 minutes to an hour, but usually 15-30 minutes is the course of it. Afterward, she is remorseful and sweet as can be.. and I think genuinely confused...

You said IVIG helped the first time???? And you are doing it again?? Did you notice the rage symptoms significantly decrease post IVIG??

I wish you and your family well..

Noelle

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nomoz... Yes, she has CVID, so she doesn't have much choice about IVIG in her case. Her IgG levels are low. Her first infusion was at Christmas, during her hospitalization. She had another last month when we saw Dr. B and her next is this week. Yes, we definitely saw immediate, dramatic decrease in the rages with the first hdIVIG in the hospital. She started declining at about 3 weeks after that one and same thing this time. ... and oh goodness, yes... they leave me feeling like I am shaking inside. In her case, they include thrashing, a limp phase, aphasia and often, hallucinations... she rarely remembers them. The few times she has, she has been devastated & fell apart in tears, apologizing, hugging us... not in an OCD way, but genuinely upset that she could be capable of that. It broke my heart... as long as there is no lasting damage from the amnesia, it would be fine with me if she didn't remember them; it's so hard on her.

 

Joan Pandas Mom... Her first hdIVIG in the hospital at Christmas was 2g/kg over two days. Dr. B did 1.5g/kg last month and she will remain at that, every four weeks, until she stabilizes. We go back this week, actually. Joan... who are you seeing for your son's IVIG? How often are you doing them and what are you seeing for improvements?

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