Depressed today and losing hope.....

[wornoutmom]

After 3 weeks of as close to "normal" as ds has been in 6 months on his 2nd course of Biaxin, he got sick again last week (mysterious illness - weak, body aches, headache) and the suffering is back full force. We started the steroid burst (5 days 40 mg) and Ibuprofen right away on Thurs after the return of the "exorcist" and uncontrollable arm movements and piano playing fingers during the episode. Only bad side effect is it made him dizzy and bloated looking. But there was slow improvement over the 5 days and by day 6 I was SO hopeful. He not only was happy again,but had a great day at school, independently rode his scooter to the store for the first time in FOREVER, and put himself to bed with no help (yes he is 14 - but this NEVER happens). But day 7 the cognitive confusion was back - he HAD to do something, but couldn't make a decision, getting confused about things. He had a tantrum but not an exorcist episode and pulled himself out of it. Day 8 he is getting overwhelmed by school again and burying his head again about how we're not doing anything this weekend and we never do anything and he can't do this anymore. This morning we had school refusal, confusion and lots of tears. With alot of cajoling/encouraging by his school counselor and myself he made it in after about a hour+. So..its back. And its so hard to focus on the good (i.e he DID make it in to school) when the backslide has been so extreme from 2-3 weeks ago. I worry because this is supposed to be a trial of how well he may respond to IVIG, and if this is it then I'm not hopeful. To put him through the experience (not to mention the sheer cost) for little result just seems unimaginable. And its our last resort so then what? I'm always reading success stories with a skeptical eye here, and it seems lately, as time goes by, I'm hearing more stories of PANDAS coming back with the next illness (which has been our experience over the last 7 years) despite all the right treatments. And how can you possibly keep them from getting ill? Like others who's posts I've read today, I am worried about his future or if he is even going to survive this. It is so unfair that his brain has been hijacked and his childhood destroyed by this **&!!! disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[MomWithOCDSon]

I'm SO sorry! And I'm sorry, too, that I don't have anything to offer. We're going through our own bumps, though it does sound as though your DS is having an especially rough time. Have you scheduled IVIG, or just entertaining it?

 

Hang in there, and hold onto anything and everything positive you can salvage in the here and now. It sounds as though you know all the twists and turns, and will implement every available option. Hold on to the thought that you've gotten through it before, and you'll get through it again.

[dcmom]

Worried Mom-

 

I am sorry things are going downhill.

 

But, as I am sure you know, you need to push forward. For my kids, who were not sick that long, antibiotics and steroids were not enough. We opted for pex and I couldn't have been happier that we did. It is not a cure, and like you, I don't necessarily feel that there is a cure. BUT- there is management. So- my advice would be to push forward for pex (or ivig- we haven't done that at this point- so hard for me to discuss). Hopefully with one, or two, treatments, he will be in situation where he is healthy, and if illness comes up maybe you can manage the pandas with steroids at that point.

 

If we hope only for a "cure", it is easy to be disappointed. But if we look toward "management" (which is the case with so many autoimmune disorders)- I think it is really do able. We DO know what works: pex, ivig, steroids, abx, living healthy, etc. We DO have a handful of docs who will help us with this. So in a way, we are ahead of a lot of diseases. I agree it is devastating to hear of kids who were well, and relapse. BUT- the point is they WERE well, and they will be again. I would be happy to PEX my kids every year (not so sure about the insurance co, or my financial situation)- if that is what it takes. Because I KNOW how debilitating the disorder is, and how benign in comparison the treatment is. I obviously don't want to go that route (and at some point will try ivig, I am sure) - but I am just stressing that the cure and the reprieve is SO worth the treatment.

 

I know SO well the depression that can set in with seeing your child suffer so much. DON"T let it take hold. Let those few good days be a reminder of who your son really is- and strengthen your resolve to get him there. We are all with you on this journey.....

[wornoutmom]

You offerred your support and that means alot! IVIG is not scheduled yet as we are appealing with the insurance company. Our neuro had a peer-to-peer review Wed and wrote an appeal letter. If we can somehow get it covered we'll do it here in MI. If we have to pay out of pocket we'll be going to Dr K, as his cost is about half what it is here. We'll likely go through with it because we have to say we've tried everything before we revert back to more psych drugs, , but I am not feeling hopeful about it making a huge difference like I was before.

[JAG10]

WornOutMom,

 

My understanding based on the posts here and there is that a notable response is what you were looking for, not so much were all symptoms alleviated and/or how long did it last. The response, the observed improvement confirms the autoimmune element that does not occur with typical neuropsychiatric illness or disorder.

 

So, keep in mind it is not a trial of how much or how long, but did he or didn't he positively respond. From what you wrote, your answer is a clear YES.

 

Best of luck with your appeal or in getting where you need to go by whatever means necessary!

[peglem]

We're going through a tough time now after a nice stretch of good times as well. Its like you've been sucker punched when it starts coming back- very disheartening. You will see this battle through, though, and you and your son will be stronger and wiser for having gone through this struggle. Wish we didn't have it so hard, but we'll handle it, and you will too!

[trggirl]

I just wanted to post and say hang in there.

[thereishope]

I am so sorry. Is he still on the Biaxin and when did he start the steroid burst (yesterday)?

[jayjay]

After 3 weeks of as close to "normal" as ds has been in 6 months on his 2nd course of Biaxin, he got sick again last week (mysterious illness - weak, body aches, headache) and the suffering is back full force. We started the steroid burst (5 days 40 mg) and Ibuprofen right away on Thurs after the return of the "exorcist" and uncontrollable arm movements and piano playing fingers during the episode. Only bad side effect is it made him dizzy and bloated looking. But there was slow improvement over the 5 days and by day 6 I was SO hopeful. He not only was happy again,but had a great day at school, independently rode his scooter to the store for the first time in FOREVER, and put himself to bed with no help (yes he is 14 - but this NEVER happens). But day 7 the cognitive confusion was back - he HAD to do something, but couldn't make a decision, getting confused about things. He had a tantrum but not an exorcist episode and pulled himself out of it. Day 8 he is getting overwhelmed by school again and burying his head again about how we're not doing anything this weekend and we never do anything and he can't do this anymore. This morning we had school refusal, confusion and lots of tears. With alot of cajoling/encouraging by his school counselor and myself he made it in after about a hour+. So..its back. And its so hard to focus on the good (i.e he DID make it in to school) when the backslide has been so extreme from 2-3 weeks ago. I worry because this is supposed to be a trial of how well he may respond to IVIG, and if this is it then I'm not hopeful. To put him through the experience (not to mention the sheer cost) for little result just seems unimaginable. And its our last resort so then what? I'm always reading success stories with a skeptical eye here, and it seems lately, as time goes by, I'm hearing more stories of PANDAS coming back with the next illness (which has been our experience over the last 7 years) despite all the right treatments. And how can you possibly keep them from getting ill? Like others who's posts I've read today, I am worried about his future or if he is even going to survive this. It is so unfair that his brain has been hijacked and his childhood destroyed by this **&!!! disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wornoutmom,

 

I am feeling the same way today. I’m sure a lot of us are. In a boat, paddling upstream, against the wind with no lifejacket. Some days I fall overboard and manage to crawl back in and other days (like today) I just want to jump off. We are waiting for IVIG approval and like you; my biggest fear is that it will not work. My son suffers from OCD and vocal tics, and honestly, I could live and manage fine with. It is the episodic rages that we desperately want to disappear. Every time he has one all I can think of is if this is not cured by the time he gets older, I will be visiting him in jail. Three weeks ago we finished his 3rd steroid burst. Just last week I remember a distinct feeling of joy (at least I think that’s what it was. I’m not so sure, it has been missing for so long) because we had an entire week of a normal, happy boy. It was short-lived. I don’t know why and frankly, I’m sick of trying to figure it out. I guess I’ll have to drag myself into the boat and start paddling again. I have no choice. I want my boy back. When I read your post today, I felt I was not alone. I hope you know that too.

[Joan Pandas Mom]

We are at the same point too. I watch my son struggle and it just rips my heart out. I am hoping and praying the IVIG works and he can have his life back. I can't remember, have you had IVIG? I'm starting to wonder if anything actually works. So many here have been reporting huge backslides lately.

[wornoutmom]

jay jay - no you are definitely not alone and thanks for your (and others posts) as it helps to know I am not either. Somedays that life jacket just doesn't seem strong enough....Ds just called from school in better spirits. I managed to meet with his case manager who actually listened to me and helped take some things off his plate and find an alternate assignment for him (instead of reading) and he is feeling more in control. So as hard as this morning was, I know that at least the daily fight to push him through this was the right thing to do. I'm just so exhausted from paddling...

 

Vickie: He has 2 more days of Biaxin left and started his steroid burst last Thurs - finished Mond. I just got Saturdays labs back for strep - on the edge of "normal" for antidnase and streptozyme. ASOs are below normal and MycoP is the same - pos IgG and neg Igm. So no answers there. I was secretly hoping they would show something because at least this would make sense.

 

JAG10 - thanks for your response on the steroids. Gives me more hope...

[sf_mom]

I just want to reassure IVIG does work! Things I think are important.

 

* High dose IVIG 1.5 m.g./kilogram over two days (We did 3 treatments.... its possible the 3rd was not required)

* Retreat with IVIG if there is a baseline of symptoms downward over weeks not days

* Higher dose antibiotics have work very effectively for us and others not posting to forum

* Do something to help eliminate toxins from die off while your child recovers (we use bentonite clay but also effective are charcoal pills)

* High dose probiotic to repair gut flora, help with future ingested bacteria, counter to antibiotic use

* CONFIRM THERE IS NO STREP IN HOUSEHOLD... Rapids/Cultures/ASO/Anti-DNase-B

 

I can not describe to you how different our child is post IVIG. Because of our personal history and having 5 children not genetically related all PANDAS.... I view this as an illness that is recoverable. It hasn't been an easy recovery but our son is so much better than he has been in over 2 1/2 years. He is truly happy.

 

I keep posting this because there is hope. AND, I want to give you the confidence to move forward with more aggressive treatment if needed. As we all know our kids are very sick and most will require more than just antibiotics (based on Diana P data about 60%) and possibly more than one high dose IVIG. If your child is failing in recovery I highly recommend you look to more aggressive treatments. Again, don't let the relapses post IVIG scare you.... Look at it like the child just needs further assistance to get well and that their immune systems have been so taxed.

 

-Wendy

Edited April 30, 2010 by SF Mom

[Stephanie2]

Hang in there, and I agree with JAG10, if he responded to steroids that just shows he may respond to IVIG. I don't think how long the response lasted with steroids has anything to do with how long the response to IVIG will last.

 

I wish to God there was a real cure to this illness, but unfortunately I think the best all of us can do is learn to manage it and like our doctor says you get better and better at it as time goes by and you learn to catch things in their "infancy" before you have lost a few weeks of sanity to this beast. I am not there yet in learning to manage it. I know a lot more than I did 6 months ago, but I know I have a long way to go.

 

I feel your pain, I too worry about my children's future, will they end up alcoholics to deal with their "pain" etc. It is all so scary. Both of my boys have it, so I know how overwhelming it can be. I said to my husband the other day that I just want to "get out of H#LL" if only for a few months!

 

Hope you feel stronger soon...(I don't know about you but I get more depressed about it all the week or so before my period...ugh!)

 

Stephanie

[Fixit]

wornout...just to let you know, i'm here for you...i'm just crying on another thread i started

[tired mom]

If it helps at all to know, I know exactly how you feel. My dd finished her burst last Fri. and I am just noticing improvement now. I hope things take a turn for the better for you soon. You are a great mom and at this point your getting burned out and exhausted. I was where you are now last week with no relief in sight and things are slowly turning around. Thinking of you and your family.