Still Confused

[Doug]

Okay, I am totaly confused last Thursday and Friday our daughter was so OCD she was insane, one terrible intrusive thought after another, and today she is almost back to normal. We are 2nd guessing ourselves on the IVIG, but were still going through it. I do believe this time it was brought on by stress. The last two were from a fever and infection. I hope we are making the right decision, I hate to put her through so much stress and have it not work. If she doesn't have PANDAS, I have no idea what she has. Dr. K said it couldn't be anything but PANDAS based on her symptoms and a collilation with a infection. Well enough of my gabbing. Take Care, Doug

[thereishope]

One of tge best things, in my opinion, is to follow your gut. If you do the IVIG, be prepared for some old PANDAS symptoms to resurface during recovery. Even though my sons did not do IVIG, during recovery, I even saw old symptoms I thought were gone make a reappearance before gtting fully better. It's very interesting how the brain heals.

[MomWithOCDSon]

I can second Vickie's perspective. Follow your gut.

 

We haven't done IVIG either, but on high-dose abx, we have definitely seen the "saw-toothed" recovery said to be emblematic of PANDAS. I'm learning more and more, though the experiences posted here as well as my own, that we really need to stoke our patience! We're all so hopeful, and so buoyed by any sign of healing, that we tend to want/expect it to continue on, light-speed. Unfortunately, for most of our kids, it just doesn't work that way.

[Doug]

Is Dr. K's, 90% cure rate over exagerated? He says with my daughters age and IG levels she is a prime canidate.

Thanks, Doug

[thereishope]

I can't give opinions on any of those rates. I'm not familiar with them nor has my son ever seen him. I'm sorry.

 

May I ask what your defintion of "cure" is?

[jewels]

Hello Doug,

 

We have been given a dx of PANDAS from Neuro dr - and respond well to abx. Stops all symptoms.

 

Also given a PITANDS dx from a DAN dr. Dd will show symptoms from viruses, and non strep infections.

 

I think that she has both.

 

Maybe the IVIG works well with PANDAS, but struggle with a PITANDS dx.

 

I would continue with the treatment, but make notes on what your dd's symptoms are with viruses.

 

Have you just started the treatment, and have you spoken to Dr K about your reactions with viruses and fevers.

[CandKRich]

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Edited August 12, 2013 by CandKRich

[faith]

Okay, I am totaly confused last Thursday and Friday our daughter was so OCD she was insane, one terrible intrusive thought after another, and today she is almost back to normal. We are 2nd guessing ourselves on the IVIG, but were still going through it. I do believe this time it was brought on by stress. The last two were from a fever and infection. I hope we are making the right decision, I hate to put her through so much stress and have it not work. If she doesn't have PANDAS, I have no idea what she has. Dr. K said it couldn't be anything but PANDAS based on her symptoms and a collilation with a infection. Well enough of my gabbing. Take Care, Doug

 

 

Doug,

I know how you feel, sometimes when things are going bad, we are up for anything to help our kids. and when things are good, we don't want to mess with it. I can't give any advice here, because I have not had these treatments for my child, so don't think it would be fair for me to advise.

 

One thing that stands out for me here, tho, and I feel I have to point this out, and I'm not directing this totally at you Doug, but for all of us, ...sometimes these symptoms, wether it be PANDAS, tics, OCD, etc.....I think some, mostly who are new to seeing these type symptoms, may be under the impression that if a child has some symtom,that it is going to be that way forever. That is not always the case, and I've seen this many times, being a frequent poster on the TS board. Symptoms do wax and wane even without intervention, or jcan be helped with natural intervention, could be diet, could be alleviation of stress, whatever......I guess what I want to point out is that if Doug's child had had the IVIG treatment let's say Saturday,and as he reports she is so much better today, then you would have been convinced it was the IVIG that made her better, and everyone here could come to that conclusion. so we cant' always attribute 100% to the intervention, wether it be abx, steroidal, IVIG, .. so good to be optimistic, but realistic as well.

 

How long has your daughter had ocd issues?

 

Faith

[Doug]

Okay, I am totaly confused last Thursday and Friday our daughter was so OCD she was insane, one terrible intrusive thought after another, and today she is almost back to normal. We are 2nd guessing ourselves on the IVIG, but were still going through it. I do believe this time it was brought on by stress. The last two were from a fever and infection. I hope we are making the right decision, I hate to put her through so much stress and have it not work. If she doesn't have PANDAS, I have no idea what she has. Dr. K said it couldn't be anything but PANDAS based on her symptoms and a collilation with a infection. Well enough of my gabbing. Take Care, Doug

 

 

Doug,

I know how you feel, sometimes when things are going bad, we are up for anything to help our kids. and when things are good, we don't want to mess with it. I can't give any advice here, because I have not had these treatments for my child, so don't think it would be fair for me to advise.

 

One thing that stands out for me here, tho, and I feel I have to point this out, and I'm not directing this totally at you Doug, but for all of us, ...sometimes these symptoms, wether it be PANDAS, tics, OCD, etc.....I think some, mostly who are new to seeing these type symptoms, may be under the impression that if a child has some symtom,that it is going to be that way forever. That is not always the case, and I've seen this many times, being a frequent poster on the TS board. Symptoms do wax and wane even without intervention, or jcan be helped with natural intervention, could be diet, could be alleviation of stress, whatever......I guess what I want to point out is that if Doug's child had had the IVIG treatment let's say Saturday,and as he reports she is so much better today, then you would have been convinced it was the IVIG that made her better, and everyone here could come to that conclusion. so good to be optimistic, but realistic as well.

 

How long has your daughter had ocd issues?

She woke up with PANDAS in November of 2008, following a Non -Strep throat infection, we did nothing and it eventually went away. Then last July it appeared following another throat infection, and this time it hasn't ever went away 100% it waned down to about 90-95 % better and then it re-appeared last week with a vengance, but it has settled down again in just a few days. I guess my only worry is if the IVIG makes it worse due to the increased stress. Now a few days ago I would have flown out that night to try anything. - Doug

 

Faith

[faith]

Doug,

if you have these increases with the strep infections, then I would not have any qualms about going ahead with the IVIG. You may some ups and downs of symptoms and stress, but I'm sure it will be alright, I'm sure they have a way to deal with the little ones. But interesting about how the symptoms have remitted to 90% in between the strep. I would go with the doctors recs and not worry too much here. perhaps calling the doctor and expressing your worries will help. Good luck.

 

Faith

[jewels]

Doug,

 

I also don't think there is a cure for PANDAS, but treatments that can hold it in remission or improve the immune system to fight back, and cope better.

 

My dad has MS, and medication has put him into an artificial remission. However, when he is run down, sick or stressed it flares up. If he comes off meds, it returns. Yet, some people with MS can go into remission naturally.

 

I think any autoimmune condition has its own path, and I agree with you Faith, with the wax and wane of symptoms. Our dd had a remission from the symptoms for over a year - naturally, but when a kidney infection put her under stress it triggered the PANDAS/tics again. And although our abx have been working well for months, we have yet to see the effects with a new virus.

 

I know how you feel though Doug, just wanting and praying to see positive results. I used to wake up every morning in the hope of that " cure" for our children, to be all over the news, but until that day, I think helping and supporting each other to help our children is the best thing we all can do.