Back doing IVIG

[FallingApart]

HI everyone,

 

Just to update you from my earlier thread from 2 days ago. In our case, the OCD behaviors were not a minor blip. We very quickly relapsed into a full blown PANDAS episode. All of her behaviors came back. The whole thing took from 4 pm until 11 am the next day and all the behaviors were then present. They were quite mild compared to where we were before our first IVIG, but they were all there. Our ped decided to send us straight to the hospital to do the IVIG. We are in the middle of the second dose right now.

 

I don't think I have ever felt this low in my whole life. Watching it come back that quickly and that wholly was absolutely devastating. I feel like I am losing my ability to function. If anyone has any tips on how to stay strong, I could use them. Thankfully my husband returns tomorrow but I don't know how much more depleted I will be by then even. I'm not trying to complain. I just know that you all understand. I am really and truly at a loss as how to pick myself up and go on.

 

On a side note: this nurse CLEARLY does not understand how important sleep is to a PANDAS child. I've asked her 900 times to shut up and let her sleep and she keeps messing with her. DD slept for 3 hours last night .

[dee45]

So sorry you are having such a rough go of things. hang in there. hope you and your daughter get some rest. Will say a prayer tonight.

 

Deanna

[peglem]

It is going to get better, really. You just hang in there till your husband gets back tomorrow...then go ahead and take some time to cry it all out. My prayers are going up for you!

[Megs_Mom]

Oh, my, I am so very sorry. What a shock, especially after a month of doing so well. Just imagining how you must feel makes me feel panicky.

 

There are no tips for staying strong - I just know that you can. I know a PANDAS mom - and you have a lot thrown at you, and you know how to deal with it. You are so much further along that we were at 3! You are already doing so well for her, so don't lose hope. You can do this.

 

I don't know how much you have been reading the threads lately, so just to offer up some hope - there are a lot of people talking about IVIG essentially being "used up" in the body after about 30 days. I think that is your time frame right? Basically, there are some children who may have immune system issues - and therefore may need to have their system reset monthly. I think most people with immune system issues have a new IVIG every 25-28 days. If scheduled, you should be able to have this done before she starts to have symptoms again.

 

I'm not sure if you can test her immune system after IVIG, to prove what is causing this. But it sounds like you have a great doctor, that is willing to act immediately to help you. In some ways, that is the most important thing.. I am so grateful that he is immediately coming to your aid.

 

All my best - we're all here to listen when you need us. Hope you are sleeping tonight. I know what you mean about nurses & sleep - it seems so darn basic!!! No one can get healthy when they are not sleeping!!!

[thereishope]

I'm sorry you're going through this again. The feelings of being lost, mad, etc are normal. I've often felt numb to then be overcome with crying and hyperventilating. I don't really know if there are true ways to cope with it. Maybe the best advice is NOT to look at old pics of your child and remember how it use to be. It's tempting, but if I did that when he was sick, well, I think I would totally lost it. Always look to the future and somehow know in your heart that you guys will overcome. It's so hard to feel and think that,but that's how you'll find your strength. Know you have many, many people praying for your family.

 

Did they rule out if any other infection was back and that was the cause for the relapse? Are they changing what they are going to do for her post IVIG to try to guard from another relapse? Like a different antibiotic? Perhaps list what protocol your ped was following post IVIG so others can chime in advice on different things you can try this time. My son hasn't done IVIG, but I'm sure otehrs can give you their opinion .

 

Keep us posted.

[melanie]

I'm sorry you're going through this again. The feelings of being lost, mad, etc are normal. I've often felt numb to then be overcome with crying and hyperventilating. I don't really know if there are true ways to cope with it. Maybe the best advice is NOT to look at old pics of your child and remember how it use to be. It's tempting, but if I did that when he was sick, well, I think I would totally lost it. Always look to the future and somehow know in your heart that you guys will overcome. It's so hard to feel and think that,but that's how you'll find your strength. Know you have many, many people praying for your family.

 

Did they rule out if any other infection was back and that was the cause for the relapse? Are they changing what they are going to do for her post IVIG to try to guard from another relapse? Like a different antibiotic? Perhaps list what protocol your ped was following post IVIG so others can chime in advice on different things you can try this time. My son hasn't done IVIG, but I'm sure otehrs can give you their opinion .

 

Keep us posted.

 

 

I truly understand the isolation of the hospital,the worry ,will this ever work and the not so great staff who could care less about sleeping at night.Our nurse kept comming in to get gloves she stored in my sons room.OMG!!How many days do you have left ,I kept saying Ive done 2 only one left.Movies& laptops were helpfull Soon you will be home and things will get better. I understand and so does sooo many others here. If it wasnt for this site I would have lost it a long time ago.

Melanie

[ShaesMom]

Oh, my, I am so very sorry. What a shock, especially after a month of doing so well. Just imagining how you must feel makes me feel panicky.

 

There are no tips for staying strong - I just know that you can. I know a PANDAS mom - and you have a lot thrown at you, and you know how to deal with it. You are so much further along that we were at 3! You are already doing so well for her, so don't lose hope. You can do this.

 

I don't know how much you have been reading the threads lately, so just to offer up some hope - there are a lot of people talking about IVIG essentially being "used up" in the body after about 30 days. I think that is your time frame right? Basically, there are some children who may have immune system issues - and therefore may need to have their system reset monthly. I think most people with immune system issues have a new IVIG every 25-28 days. If scheduled, you should be able to have this done before she starts to have symptoms again.

 

I'm not sure if you can test her immune system after IVIG, to prove what is causing this. But it sounds like you have a great doctor, that is willing to act immediately to help you. In some ways, that is the most important thing.. I am so grateful that he is immediately coming to your aid.

 

All my best - we're all here to listen when you need us. Hope you are sleeping tonight. I know what you mean about nurses & sleep - it seems so darn basic!!! No one can get healthy when they are not sleeping!!!

 

You have to wait about three months before you can do the immunological blood work after having IVIG

[ShaesMom]

K-My heart goes out to you A. I hope that you are off to a better start this morning and that your husband will be there shortly to help you go through this. Please know that even though you are alone in that hospital you are not by yourself. You are in everyone's thoughts and prayers today as is your daughter.

 

God Bless

Sam

[FallingApart]

Thanks everyone,

 

I was too worn out last night to give too many details but perhaps I can provide a few more here. DD literally had a new PANDAS symptom surface every hour that afternoon. But, since they look like behavioral issues, and we were supposed to be healthy, I just thought she wasn't listening. And of course there was a lot of yelling in our house. Mainly by me.

 

And I spent the whole night wondering if I was over reacting and there was nothing wrong with her and that she was just being a kid. (This disease really does waste a lot of people's time and thought processes). But the last straw for me was when I went out to the car for 30 seconds and returned to find both children, the cat and the dog on the kitchen floor eating cat food (The eating cat food has been one of her "Wierd things" for as long as we can remember). I yelled and my younger DD said "Sorry mommy, the dog and cat moved away from the food knowing it was wrong, but the PANDAS DD just sat there looking at me. She wasn't inside herself in any way. I completely lost it right there in the kitchen and pretty much haven't stopped crying since.

 

As for why this happened. Our ped also agrees with all of you that the lifespan of the antibodies is over and DD's body is working on its own and therefore is not working. As for the plan going forward - we don't have one. We have insurance to do this 1-2 more times and I think our ped will now do this preemtively for sure. But she is also planning to call Dr. K to see what he recommends. The other thing is that we are waiting on the results of the blood tests from the lead and manganese from my post from last week. She would be on Zith 2/week. It is 1 tsp each dose. I think the box says 500 mg, but I'm not positive. I also have her on multivits, kefir, magnesium (not manganese ) but nothing extra for immunity boosting. Still trying to figure that one out.

 

Please let me know if you have thoughts on this and any reccs.

[ShaesMom]

Dr K is great but you need to find an Immunologist and have that blood work done. I emailed you the name of Pediatric Immunologist who is associated with the Jeffrey Modell Foundation which was established by a set of parents who lost their son to an immune deficiency disease. CALL HIM!

 

If she is responding to the Ig's dieing off and her body's inability to fight the infection on her own then it would seem apparent that she has an underlying immune issue.

 

Meg's Mom-we seem to be on the same page in regards to the immunological panel. I'm hoping you'll chime in and reiterate my thoughts about the blood work panel.

 

Sam