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Has anyone had to emergency IVIG...


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I'm pretty sure Browneye's story included something like that. If she doesn't chime in, take a look at her posts from late 2010...

has anyones symptoms ever gotten so bad that they had to do emergency IVIG?

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Hi, Wilma:

 

I know this wasn't what you had in mind... but I can tell you that all 3 of our ds's IVIGs felt like "emergencies"! He was utterly incapacitated at the time, and we were just hanging on by our fingernails, trying to survive until the procedure dates. The procedures themselves were pretty traumatic: at one point during 2 of the 3 IVIGs, I was terrified that we weren't going to make it through. Thank God for Dr. K and his seasoned staff. They managed to make it happen all 3 times, despite the challenges.

 

I know that no parent wants to rush into IVIG for many valid reasons (risks, costs, etc.). But - based on our painful experience - I'd recommend not waiting until the "emergency" point if it's at all avoidable. Makes the process traumatic for the child and for the whole family, as well as challenging for the service providers. (And if they're not as seasoned as Dr. K's staff, they may throw in the towel... we ran into that with one "aborted" attempt at a local IVIG.)

 

Prayers and best wishes to you!!!

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Hi Wilma.... I hope everything is ok there.

 

Yes, we did have to do emergency high dose IVIG at her Christmas admission. Around that time, we called 911 five times in a two week period (this includes the several days she was in the hospital, so it was very often. During one of those trips to the ER, they sent us to children's hospital in our area. They ran a battery of tests did IVIG at 2g/kg over a two day infusion. She woke the next morning and said that she felt better than she had in longer than she could remember... more like herself. It wasn't over & she wasn't in remission - she still isn't and continues to receive hd IVIG every few weeks now.

 

I suspect what may have exacerbated things for her is that she had starting receiving lower dose Ig at home (sub Q infusions) because of her low IgG levels... we saw a dramatic, horrible increase in symptoms - she became the most severe I've ever seen her with this. She also had elevated LFT's & urinary porphyrins at that admission... we d/c'd the Prozac (thank goodness - switched her to Tegretol for the migraines) and the Ibuprofen (she'd been on 300 mg BID) at that time. They have decreased now.

 

Please contact me via my blog if I can be of help.... I don't check in here too often these days with her on home-bound ed now and the multitude of doc appts.

 

You'll be in my thoughts... ♥

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Yes. I believe it is becoming an emergency. Her OCD is starting to go out of control. Scott Smith believes IVIG is the way to go. I have an appointment with Dr. B in Conneticut on April 18th. It use to be that she was very confused and agitated with SOME OCD showing, but now that we treated for Clostridia... she seems less confused and more normal, but the OCD is REALLY REALY bad. Before, she was stuck in front of a TV because she could not function. Now she is able 2 talk and communicte and tell me how severe her OCD is. She is up for hours brushing her teeth. Her gums are raw. She says the same sentence for two ours straight at night and I have to repeat it, but I never seem to get it right. She gets super agressive because I don't get it right. Melationin use to calm her. Not anymore. A low dose (12.5mg) seroquel helps a little, but if I go higher with this stuff, she throws things and REALLY flips. I also have a three day trip planned for Disney World on April 10th. Ugh...I did not see this coming.

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Yes. I believe it is becoming an emergency. Her OCD is starting to go out of control. Scott Smith believes IVIG is the way to go. I have an appointment with Dr. B in Conneticut on April 18th. It use to be that she was very confused and agitated with SOME OCD showing, but now that we treated for Clostridia... she seems less confused and more normal, but the OCD is REALLY REALY bad. Before, she was stuck in front of a TV because she could not function. Now she is able 2 talk and communicte and tell me how severe her OCD is. She is up for hours brushing her teeth. Her gums are raw. She says the same sentence for two ours straight at night and I have to repeat it, but I never seem to get it right. She gets super agressive because I don't get it right. Melationin use to calm her. Not anymore. A low dose (12.5mg) seroquel helps a little, but if I go higher with this stuff, she throws things and REALLY flips. I also have a three day trip planned for Disney World on April 10th. Ugh...I did not see this coming.

 

Wilma I am so sorry your dd and your family are going through this. I think many of us understand your situation and have also felt that it was an emergency that our child get IVIg. Please hang in there and do whatever you have to do to get the IVIg. I think you will find that when your child has pandas to this extreme, things such as disney world are not possible. I know I used to read this board and hear stories about people taking their pandas child on trips or letting them play sports or go to birthday parties...I could never relate to pandas in that way because my child's pandas was so severe that it just wasn't possible for us to do anything of the sort. If I could give some advice cancel your trip before you lose the money or plan to have a miserable time. When they are going through pandas exacerbation like the one you describe, it is just not the best time in your family's life to take a vacation. It's easier to deal with at home in a safe environment. We were once stranded in Marco Polo Airport, Venice, Italy for 4 hours...(among other places/times/bizarre situations). (We were living in Italy at the time--moved back to the states due to pandas). Good luck to your family. I wish your dd the very best and hope your dd has the experience that my dd had with IVIg. So far, she has only needed the one HD IVIG (over 2 days). It was a hellish time, but she has true recovery. Her acute exacerbation began Aug 12, 2007 and she got IVIG November 17 & 18, 2008.

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Wilma... did you email me via my blog about the ribbons? If so, I just emailed you back... please feel free to contact me anytime. I know this is a horrible time... I'd like to offer you some suggestions and encouragement. My dd11 has clearly improved from as intense as her exacerbation was around Christmas... she does still have a way to go though before we can even get her back to school for a modified schedule... Mommy, on the other hand, has been near the end of her rope lately. Sometimes I think that once I get her through this that I will just collapse.

 

I want to encourage you that the IVIG helps her EVERY time - we see clear improvement and are so thankful. I hope things improve soon for you and your daughter. Hugs ♥

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I'm sorry you are going through this Wilma. I agree with Worried Dad, try not to wait until it is an emergency. I did wait and it was horrible. I agree with Amy S too, when a child is really sick with PANDAS, don't try to travel. My son begged and pleaded to go to St. Lucia. He wanted some sun and fun after being stuck in all winter. We took him to St. Lucia in the beginning of March. It was a nightmare. I can't begin to tell you how stressful and horrible it was. I will never travel with a sick child again. Good luck with your appointments and I hope she can hang in there until you get there.

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If I cancel this trip... all ###### will break lose. And I am not kidding. I am afraid of her aggression to be honest. I always have to tell little white lies, like the trip was cancelled to do bad weather or something. I hate lying 2 my child. Never thought I would have 2 do it, but walk in my shoes and you will see why. I am sure some of u can relate.

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If I cancel this trip... all ###### will break lose. And I am not kidding. I am afraid of her aggression to be honest. I always have to tell little white lies, like the trip was cancelled to do bad weather or something. I hate lying 2 my child. Never thought I would have 2 do it, but walk in my shoes and you will see why. I am sure some of u can relate.

Wilma, i have not only walked in your shoes, I've worn the soles clean off of them! Does your daughter understand that she is ill? Maybe you could postpone until she is feeling better?

We did a trip to Disneyland (our last, probably ever) a few weeks before my daughter's tonsillectomy. I didn't want to go because i thought my daughter was too ill. Hub wanted to have a fun vacation before the surgery- he should have trusted my instincts. My daughter had a bad, bad, fright or flight episode right in the middle of the courtyard at Disney, while it was jammed packed with the shoulder to shoulder crowd awaiting fireworks. It was very scary and very difficult getting her out of there. I never thought this would happen. My daughter loves Disneyland and had already waited over an hour for the fireworks show...she really, really wanted to see it. It was the first time that I genuinely understood that she can't help the aggressive rages and hates that they take over her life. I'd rather deal w/ the meltdowns in the privacy of my own home. Just sharing this experience because unless you are sure she can hold it together there, you might end up, well, like me.

If you do decide to go, I wish you the best and hope you and your family have a great time. Its tough when our kids are suffering and we want to give them some joy...but sometimes they just can't be joyful no matter how much they want to.

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