When to take the next steps?

[airial95]

We have my sons PANDAS as under control as one can get it. He's not completely cured, but he comes out of every episode quicker and quicker and the CBT is working on the residual OCD. Our bigger issue is how often he catches strep. (we see immunology on the 26th - thus far all shows normal on his labs).

 

He responds well to abx for now, and because he's only 3 we've not thought about going for IVIG or PEX until he's a bit older if he needs it.

 

We thought we were doing well. We're on a 30 run of abx because his sister had strep 3 weeks ago, he was negative. This exposure was mild in symptoms, even by our normal exposure standards, but it has lasted longer. Mostly emotional lability, some of his OCD has resurfaced, but not all of his usual tendencies, some biting and bedwetting and interrupted sleep patterns.

 

Last night he woke up at 4 am, played for a bit in his room and then said he felt "yucky". I asked hats wrong, he said his "head felt fuzzy" (a common phrase when he's having an episode) and his tummy felt bad. As he's sitting on the potty, he looks up at me and says matter of factly "I want to go far away where I don't get sick anymore and my head doesn't get fuzzy".

 

My heart broke. I reminded him that daddy and I love him, and we're working very hard with all of his favorite doctors to get him better and we'll never stop trying.

 

When I got him back into bed, I crawled into mine and just sobbed myself back to sleep. For the first time in this whole ordeal I questioned why God would do this to such a beautiful little boy, which is unlike me.

 

This morning, I find myself no longer questioning God, but myself. Should we be going more aggressive even though we've been "managing" things well? Are we cheating him somehow, by not trying harder? Are my concerns about his age a cop out? He's functional now, and has been for almost a year, even with infections and exposures under out belt in that time.

 

I thought we were doing well, and after hearing him say that, I'm filled with doubt and fear like I haven't felt since we started this journey! Any words of advice or support?

[kimballot]

Airial - I am so sorry that you are dealing with this. It is not fair for a little boy to be sick all the time. I wish I could give you solid answers about being more aggressive, but I really do not understand how you could be more aggressive. It sounds like you address illness very quickly. If he is not on prophylactic antibiotics then, yes, you should consider those and talk with the immunologist about that. It doesn't sound like there is any reason for steroids or IVIG if he is coming out of the exacerbation without a lengthy period of post-infectious autoimmune response. IVIG might help him to stay healthier if he were immune deficient, but even kids with IVIG get strep.

 

In the end, I think for many of us "management" of a chronic disease is the best we can do - just like parents of children who are diabetic or asthmatic. The difference is that we do not have documented protocols to follow.

 

It will be interesting to see if others have a different take on this. I do hope that he is feeling better soon and his fuzzy head goes away... and I hope that some day we can have well-documented protocols for parents to follow to manage their children's PANDAS so we are not constantly reinventing the wheel.

[LNN]

I know I won't be the only one who tells you this - but the first thing you have to do is not beat yourself up. I totally get how you feel. I've been on this road "officially" for 3 years but have been questioning signs and symptoms for much longer.

 

But try to keep things in perspective. You have a tricky situation because not all of your son's symptoms are slam-dunk Pandas. You have to always sort out what's age-related vs. illness-related. So it's not fair to expect that you should know when it's time to be aggressive when you have more to sift thru than those with older kids who can communicate and have perspective on what they're feeling.

 

You are doing what all of us try to do - find the most beneficial protocol balanced with the least amount of risk. While your son may be "losing" a "normal" childhood, he's also gaining special gifts thru CBT and the relationship you're forging with him. My son "lost" 1st grade thru 3rd grade and as he starts 4th grade, I brace myself for what the new year may bring. But each year, we've gotten him healthier even as our medical path has gotten wackier. He's catching up academically and I find that he now has gifts his peers don't, such as the ability to articulate his feelings, recognize and deal with anxiety, understand what makes other kids tick...

 

I think the best thing you can do is take a few days away from the forum and do a gut check. Sometimes, being on here can make you feel guilty if you're not doing "everything possible" and you see posts about abx and IVIG and this test and that...and you can get caught in a little "keeping up with the Joneses". I pressured myself into doing IVIG even tho I had many mis-givings, because it felt like if I didn't try it, I would somehow be robbing my son of every opportunity to get well. It wasn't the right treatment for us. You have to remember that your child and situation is unique. This is a buffet table where you can learn about a lot of things. But not everything will apply to your child.

 

Try to get a good night's sleep and give yourself permission to not know what to do next. Listen to your gut and cherish your son. The rest will come in time. There's no magic deadline, no expiration date on options. Be kind to yourself - it's the best way to take care of your family.

[thereishope]

I'm sorry. It's hard to hear words like that come out of your child, especially when they are so young.

 

May I ask how open you and your husband are in talking about PANDAS, strep, etc in front of your son? I ask because I had to learn to stop saying things like "I think he has to go to the doctor" to my husband in front of my son as I realized that caused him more pain, anxiety, and sadness. I also had to learn to watch what I say like if he acted oddly, not to say under my breath, "I hope we don't have to go for a strep test". Don't know how open you are around him, but perhaps it may make a even a slight difference in how he views what is going on.

Edited August 7, 2011 by Vickie

[airial95]

Airial - I am so sorry that you are dealing with this. It is not fair for a little boy to be sick all the time. I wish I could give you solid answers about being more aggressive, but I really do not understand how you could be more aggressive. It sounds like you address illness very quickly. If he is not on prophylactic antibiotics then, yes, you should consider those and talk with the immunologist about that. It doesn't sound like there is any reason for steroids or IVIG if he is coming out of the exacerbation without a lengthy period of post-infectious autoimmune response. IVIG might help him to stay healthier if he were immune deficient, but even kids with IVIG get strep.

 

In the end, I think for many of us "management" of a chronic disease is the best we can do - just like parents of children who are diabetic or asthmatic. The difference is that we do not have documented protocols to follow.

 

It will be interesting to see if others have a different take on this. I do hope that he is feeling better soon and his fuzzy head goes away... and I hope that some day we can have well-documented protocols for parents to follow to manage their children's PANDAS so we are not constantly reinventing the wheel.

 

Thanks so much for the support. He's been doing well, which is why I was so blindsided by his comment. My husband is telling me the same thing - we are doing all we can. And he is doing better than most. I think what really got to me is it was the first real glimpse I had as to how he sees things. Since he's only 3 1/2, we thought we were doing a good job of trying to keep his life as normal as possible - still letting him go to birthday parties, doing fun things (even when it's a challenge) to try not to let this take over his childhood. I guess we weren't shielding him as much as we thought we were!!

[airial95]

You have a tricky situation because not all of your son's symptoms are slam-dunk Pandas. You have to always sort out what's age-related vs. illness-related. So it's not fair to expect that you should know when it's time to be aggressive when you have more to sift thru than those with older kids who can communicate and have perspective on what they're feeling.

 

 

Thanks for the support!!! We do have a trikier road because we constantly have to question what are symptoms and what is just "normal" for a 3 year old little boy. It's the main reason we waited 6 months before taking him in for any type of dx because everyone had us convinced that there was nothing wrong, it was the "terrible twos" and it was worse than it was with my daughter because "boys are harder". I wish we would've trusted out guts more then, we would've been getting help sooner.

 

I think we've tried to keep our own path, and not get too wrapped up in what others are doing. It's our mothers instinct to want to do everything she can to protect her children. Deep down I know we're doing that, but it hits the hardest when you have this sweet little man saying he want's to get better.

 

I'm just thankful for all of the love and support of others going through it that I find here!!! I don't know what I would do in moments like that without all of you!!!

[airial95]

I'm sorry. It's hard to hear words like that come out of your child, especially when they are so young.

 

May I ask how open you and your husband are in talking about PANDAS, strep, etc in front of your son? I ask because I had to learn to stop saying things like "I think he has to go to the doctor" to my husband in front of my son as I realized that caused him more pain, anxiety, and sadness. I also had to learn to watch what I say like if he acted oddly, not to say under my breath, "I hope we don't have to go for a strep test". Don't know how open you are around him, but perhaps it may make a even a slight difference in how he views what is going on.

 

We're open with him in the respect that he knows that his brain is "sick" and we know he can't help it sometimes when he does things. My husband and I normally have conversations about his progress, things we're seeing or if we need to go into the pediatrician after he goes to bed, but you're right we may do it more often than we realize.

 

We're fortunate, our son actually LOVES going to the doctors. His doctors (the pediatrician, Dr. Murphy, his theapist), are some of his favorite people, and he actually looks forward to going to see them - even if he knows he's getting shots/blood drawn or a throat culture. I'm not sure how we managed that - but I'll take it.

 

It's a good suggestion though - and I'll have to keep in mind how often we talk about his issues in front of the kids! Thanks again!!