update on my son

[bronxmom2]

Hi all,

I posted about a month ago that my son, 3 weeks after IVIG, suddenly started clenching and unclenching his hands constantly. Within a few days, his behavior had fallen apart as well.

(For the first three weeks after the IVIG, he was doing GREAT and I even started to feel hopeful that we might put all this behind us...my mother visited and thought he was like a different kid (though I don't think she ever quite believed in the PANDAS beforehand)

 

The consenus when I asked about the hand clenching (we never had any symtpom like this before- mostly just obsesssiveness, defiance, and attentional problems) was that it was the transitory "turning of pages" and actually a good sign. So I have waited patiently. But it's just gotten worse. No saw tooth... just worse. His hands are now all crooked-up to the point where he can't catch a ball, use scissors, or write. I guess it's chorea, but it doesn't look exactly like the "piano playing" movement which I looked up on you tube. It looks so uncomfortable, and his hands hurt. He is sweating profusely all the time and he is an emotional mess (several times wished himself dead). He can't think or talk about anything but civil war figurines.

 

It's heartbreaking that after a year and a half of trying to aggressively stamp this thing out, I feel like we have gotten nowhere.

 

I personally was suicidal for over ten years and I am so frightened for him, because I know where this could lead, it will be even worse for him because he is a boy and quite aggressive.

 

We are scheduled for another IVIG through Dr. B next week.

 

My hunch, since IVIG seemed to "wear off" at the 3 week mark twice, is that he is one of the kids that needs them monthly. Dr. B did find an immune deficiency (IgG and failed all the pneunnoccal, plus problems with his T cell helpers) but at the time I did not think it was a serious immune deficiency and was just happy he'd found a way to get the insurance co to cover IVIG.

[Kayanne]

I'm so sorry that you are at this point...I will keep you in my prayers...Keep us posted--I hope he gets better again after the next treatment.

 

Is he currently on antibiotics?

[bronxmom2]

Augmentin 875 twice a day

[Joan Pandas Mom]

I am so sorry to hear all of this. I hope and pray you will find the answer. This disease is so complicated. My son is 6 days post IVIG and symptoms have really, really ramped up. His compulsions are constant. Why are all of these kids responding so differently to the various treatments. I think so much is still so unclear with PANDAS.

 

Hi all,

I posted about a month ago that my son, 3 weeks after IVIG, suddenly started clenching and unclenching his hands constantly. Within a few days, his behavior had fallen apart as well.

(For the first three weeks after the IVIG, he was doing GREAT and I even started to feel hopeful that we might put all this behind us...my mother visited and thought he was like a different kid (though I don't think she ever quite believed in the PANDAS beforehand)

 

The consenus when I asked about the hand clenching (we never had any symtpom like this before- mostly just obsesssiveness, defiance, and attentional problems) was that it was the transitory "turning of pages" and actually a good sign. So I have waited patiently. But it's just gotten worse. No saw tooth... just worse. His hands are now all crooked-up to the point where he can't catch a ball, use scissors, or write. I guess it's chorea, but it doesn't look exactly like the "piano playing" movement which I looked up on you tube. It looks so uncomfortable, and his hands hurt. He is sweating profusely all the time and he is an emotional mess (several times wished himself dead). He can't think or talk about anything but civil war figurines.

 

It's heartbreaking that after a year and a half of trying to aggressively stamp this thing out, I feel like we have gotten nowhere.

 

I personally was suicidal for over ten years and I am so frightened for him, because I know where this could lead, it will be even worse for him because he is a boy and quite aggressive.

 

We are scheduled for another IVIG through Dr. B next week.

 

My hunch, since IVIG seemed to "wear off" at the 3 week mark twice, is that he is one of the kids that needs them monthly. Dr. B did find an immune deficiency (IgG and failed all the pneunnoccal, plus problems with his T cell helpers) but at the time I did not think it was a serious immune deficiency and was just happy he'd found a way to get the insurance co to cover IVIG.

[Fixit]

Hi all,

I posted about a month ago that my son, 3 weeks after IVIG, suddenly started clenching and unclenching his hands constantly. Within a few days, his behavior had fallen apart as well.

(For the first three weeks after the IVIG, he was doing GREAT and I even started to feel hopeful that we might put all this behind us...my mother visited and thought he was like a different kid (though I don't think she ever quite believed in the PANDAS beforehand)

 

The consenus when I asked about the hand clenching (we never had any symtpom like this before- mostly just obsesssiveness, defiance, and attentional problems) was that it was the transitory "turning of pages" and actually a good sign. So I have waited patiently. But it's just gotten worse. No saw tooth... just worse. His hands are now all crooked-up to the point where he can't catch a ball, use scissors, or write. I guess it's chorea, but it doesn't look exactly like the "piano playing" movement which I looked up on you tube. It looks so uncomfortable, and his hands hurt. He is sweating profusely all the time and he is an emotional mess (several times wished himself dead). He can't think or talk about anything but civil war figurines.

 

It's heartbreaking that after a year and a half of trying to aggressively stamp this thing out, I feel like we have gotten nowhere.

 

I personally was suicidal for over ten years and I am so frightened for him, because I know where this could lead, it will be even worse for him because he is a boy and quite aggressive.

 

We are scheduled for another IVIG through Dr. B next week.

 

My hunch, since IVIG seemed to "wear off" at the 3 week mark twice, is that he is one of the kids that needs them monthly. Dr. B did find an immune deficiency (IgG and failed all the pneunnoccal, plus problems with his T cell helpers) but at the time I did not think it was a serious immune deficiency and was just happy he'd found a way to get the insurance co to cover IVIG.

bronxmom. i feel so bad for your son....

are things worse than before ivig or are they equal to his worst exasperation?

have you had yourself checked to see if you may have the igg problem...

it would give you the link and maybe you can remember some of the things that may have helped you.....

its weird how families like the same things and react similar to substances from food to ointments.......

[Megs_Mom]

I am wondering if you have already explored Lyme for him as a possible additional issue? I apologize if you have already said this, I am often behind on each story. I only ask, as I was watching "Under our skin" last night; we are looking at some Lyme questions in our family now. While nothing about PANDAS is typical, his hands sound like something more than PANDAS.

 

Will be thinking of him often, and hope you are right about the IVIG. Sounds like you are smart to explore that - while I would not wish a immune problem on anyone, finding it might be a blessing.

[bronxmom2]

My son has had 3 ivigs.

after the first, he was like your child-- ramped up symptoms, then things calmed after a few weeks.

after each of the next ivigs, he was immediately and clearly improved, but it seemed to "wear off."

 

perhaps we are doing too many ivigs. I know Dr. K advises against too many ivigs as it stirs things up.

 

clearly we are either doing too many or too few.

[bronxmom2]

I have exactly the same igg deficiency and failed all the same pneumoccal tests...

Psychology was totally useless to me. The only thing that cured me was pregnancy (and, well... before that, pot...)

I had a 3 year remission until my son was exposed to strep and we started our "death spiral".

[bronxmom2]

we both tested negative for lyme, though I know there are lots of false negatives-- something about the p41 band that lots of people here are discussing?-- so this is something I plan to ask about.

[melanie]

This is exactly what happpend to danny the 1st one was great for about 3 weeks then not good We did 6 so far at home and it seems to be better So maybesome DRs dont have the answers to everyones immune issues?? I dont know.

[EAMom]

was he on Azith b-4? any better on that?

 

Have you checked household contacts for strep recently?

[EAMom]

clearly we are either doing too many or too few.

 

Yup...it's just hard to know which one it is.

[EAMom]

I am so sorry to hear all of this. I hope and pray you will find the answer. This disease is so complicated. My son is 6 days post IVIG and symptoms have really, really ramped up. His compulsions are constant. Why are all of these kids responding so differently to the various treatments. I think so much is still so unclear with PANDAS.

 

I wouldn't worry too much about increased symptoms for the first 1-2 weeks after IVIG...I think that is pretty "normal".

[wornoutmom]

Uugh...I had just gotten calmed down about my son's scheduled IVIG appt. on June 14th, and now I'm all freaked out again. I'm SO sorry this is happening to you guys. I hope you find answers soon. I know you are working with Dr B, but I wonder if consulting a neurologist regarding his hands might be useful??

[sf_mom]

We saw tremendous healing weeks 9.5 through 14 post IVIG. If this is his only symptom and there is no OCD ramping up... I would highly recommend waiting it out further. We have seen a baseline adjustment approximately every three weeks and it is always worse before better and then suddenly better. There is some suggestion that if they have high immune complexes they will bind and escalate with each introduction of IVIG.... 'stirring up'. This also holds true with the CAM Kinase and can take 6 months to a year to resolve. In addition to Chorea taking a very very very long time to resolve. I know its hard but if you can wait another 4 weeks to see which direction this goes before retreating.

 

BUT, with that said, an antibiotic change might be in order. Perhaps winding down on Augmentin while ramping up on Azithromycin. We are currently 98% recovered and just recently switched up antibiotics pushing him towards 100% and saw another baseline adjustment (worse before better but now BETTER than when he was only on Azithromycin). Our son is now on a combo of Azithromycin and Omnicef.

 

Hopefully that helps. Hang in there... There are some things I never thought would resolve and they did.

 

-Wendy

Edited May 27, 2010 by SF Mom