update on my son

[bronxmom2]

The OCD is also bad. And he's pretty "ragey."

You can pretty much gauge his condition by the number of times per day that he makes his brother cry.

My mommy-meter is definitely way up in the red, if you know what I mean.

The truth is I've been counting the days until the next IVIG.

[bronxmom2]

He was on zith before and Dr. B switched him to Augmentin. Augmentin actually seemed a little better.

The zith never seemed that effective to me.

The one that really had a remarkable impact was Omnicef (which he took last year, when he was really sick)... but I don't think that's ever done long term.

 

I have been wondering about the "saving sammy" dose of XR Augmentin... I know WorriedDad's son had mixed results with IVIG but the high-dose augmentin really did something.

I asked Dr. B about that last time but he did not seem amenable. He is already on a pretty high dose of Augmentin for his size.

[sf_mom]

How about switching antibiotic up to see if it helps prior to the next scheduled IVIG and bump the appointment by a week if things improve. Its worth a try......

 

I know your worry, concern and exhaustion. Perhaps consult with Dr. K.

 

-Wendy

[sf_mom]

If the Omnicef worked in the past..... give it another try. It has really helped us Azithro/Omnicef combo.

 

-Wendy

 

He was on zith before and Dr. B switched him to Augmentin. Augmentin actually seemed a little better.

The zith never seemed that effective to me.

The one that really had a remarkable impact was Omnicef (which he took last year, when he was really sick)... but I don't think that's ever done long term.

 

I have been wondering about the "saving sammy" dose of XR Augmentin... I know WorriedDad's son had mixed results with IVIG but the high-dose augmentin really did something.

I asked Dr. B about that last time but he did not seem amenable. He is already on a pretty high dose of Augmentin for his size.

[KeithandElizabeth]

I just want to second what Wendy is saying in terms of possibly switching the antibiotic to azithromycin or omnicef. Our son had a relapse after his first IVIG and he was on Augmentin and then developed mycoplasma and lyme (which he could have had before the IVIG). Augmentin is not helpful with myoplasma and lyme disease.

 

We also decided, per Dr. K, to not do any more IVIG's for a while. This has really helped our son. He said that his "money was on the one IVIG to reboot the immune system." He said to only consider another high dose (never the small doses) if we see a relapse for greater than 2 weeks.

 

Good luck and we are thinking about you and your son.

 

Elizabeth

[bronxmom2]

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??

 

 

I'm sorry to have scared you! I was afraid of that. I'm sure you are doing the right thing for your son. One thing is that Dr. B is learning along with us, he seems pretty open about that, and his protocols are shifting. He was initially going to do monthly ivig at a lower dose, but switch to bimonthly at the higher dose after conferring with Dr. K.

 

I agree that a neurologist should see the hands. I just don't see much gained by another trip down to Dr. Latimer-- we have no more money to spend-- and don't want to go to any more non-PANDAS doctors.

[tpotter]

I agree with other parents. Try getting a change in abx. We have changed several times over the year my sons have been on. The initially great effects do wear off, as they may be building up a resistance. Sometimes changing to a different abx then changing back later works wonders. Also, have you tried a steroid burst?

[coco]

Hi Bronxmom - I am so sorry to hear about your beautiful son. I have been tempted to do another since our last in February, but after speaking with Dr. K several times over that past several months he has talked me off the ledge and convinced me to wait. The brain needs time to heal and healing is rough, for sure. You may be just stirring up the antibodies again and again. I know some folks have had good success with ivig every 8 weeks, and others are better off waiting. I would be inclined to wait it out. If you haven't checked for Lymes with IGENEX I would not discount that it may be an issue. Mycoplasma, too, current or past infection. These coinfections may be keeping the ivig from doing its thing. Ask Dr. B about switching to Clarithromycin (Biaxin) for thirty days to see if it helps. I told him last week that it was helping us after being on azithro for 6 months. He agreed that clearing the co-infections were important prior to doing another ivig (if still needed).

[fuelforall]

Hi Bronxmom - I am so sorry to hear about your beautiful son. I have been tempted to do another since our last in February, but after speaking with Dr. K several times over that past several months he has talked me off the ledge and convinced me to wait. The brain needs time to heal and healing is rough, for sure. You may be just stirring up the antibodies again and again. I know some folks have had good success with ivig every 8 weeks, and others are better off waiting. I would be inclined to wait it out. If you haven't checked for Lymes with IGENEX I would not discount that it may be an issue. Mycoplasma, too, current or past infection. These coinfections may be keeping the ivig from doing its thing. Ask Dr. B about switching to Clarithromycin (Biaxin) for thirty days to see if it helps. I told him last week that it was helping us after being on azithro for 6 months. He agreed that clearing the co-infections were important prior to doing another ivig (if still needed).

 

 

Hi!

I agree with Coco here. Wait it out. My son did not improve much until about two months went by and I'm afraid to go back and stir things up.

Hope you get through this, I am also looking at "neuroptimal" neurofeedback to calm some things down a bit.

 

Michael

[saidie10]

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.

 

This is so sad. I am so sad for you and your family and what your son must be going through . Hang in there. Continue being the strong Mom you are. Your son is so lucky to have you. I will say a prayer this next IVIG works wonders!