Absolutely nothing is helping!

[kcdc3]

Are there any other parents out there where absolutely nothing is helping??? Sometimes I feel so alone in this. We've been battling this for 4 years. Just when we think our dd is showing signs of improvement, we go backwards 3 or 4 steps. We've tried everything. We've tried natural remedies, we've tried CBT/ERP, we've tried Zoloft, we've tried Inositol, we've tried 500 mg of Zith daily, we've gotten CAMk scores in the 160's. Does that fact that nothing works support the idea of PANDAS or disprove it??? The only positive thing I have seen has been a decrease in rages. I've seen tics come, tics go away and then come back worse than before. I've seen obsessions/compulsions come and then go away and then come back again worse. It's an emotional rollercoaster and I want to get off!!!!!

[thereishope]

First off, never give up hope. Can you take us through the med history again? What abx have been tried and for what time frame? When you saw things improving then sliding could you correlate that with anything going on? After the setback, would she be worse off than she was prior or still a little ahead?

 

Have you tried a steroid burst or seen one of the experts?

 

I'm sorry, but I just can't rememebr what everyone has done. Be patient with me:)

[PKM]

Has she been on any antibiotics other than amox and azith?? Ever tried augmentin or keflex?? Have you already tried IVIG or PEX??

 

The roller coaster is awful - I know what it is like to just want your child to get better - it doesn't seem fair. Don't give up - keep plugging away - there are success stories out there. There just doesn't seem to be a standard treatment that works for every child - don't give up hope that something will work.

[Buster]

Are there any other parents out there where absolutely nothing is helping??? Sometimes I feel so alone in this. We've been battling this for 4 years.

 

Hi Kcdc3, I was reading your previous posts . How long were you on continuous antibiotics? I couldn't tell from previous posts. How many days in a row were you taking azith?

 

 

Buster

[sf_mom]

Have you consulted with one of the main PANDAS Dr.'s? Have you thought about being more aggressive in the treatment plan?

 

-Wendy

[kcdc3]

Amox for 30 days - seen drastic improvement within 5 days - 99%. Siblings both came down with strep then, and she regressed. (Tics came right before the strep diagnosis and the Amox). After siblings got well, she was still on Amox, but never regained improvement.

Zith 250 mg for 30 days, then 500 mg for another 30 days. Doctor says that if we were going to see improvement, we would have seen it by now. The only thing that I can say we put in the mix was Inositol about 2 days before we started 500 mg. I think we'll definitely stop taking that.

I would say the setbacks took us to baseline, or what we had started with. The tics are a different story. I think they are worse now, when they had went completely away after starting Zith at 250 mg. The only thing that I am coorelating with the setbacks are viruses -either had by her or by someone in the family. But how do you get past that??? Put her in a bubble??

We have not tried IVIG or PEX. I don't want to try something that advanced without even knowing all I need to know about the PANDAS. I am working on getting a consult with Dr. T. Hoping hoping hoping he can give me more guidance than I have gotten so far!!!!!

[kcdc3]

Working on trying to get a phone consult with Dr. T.

Living in NC - getting a doc to do more than 30 days of abx is like winning the gold medal. I found one willing to do so, but he is extremely difficult to contact. He is the one that gave the Zith for the past 2 months. We took our last one yesterday, but I wasn't seeing any improvement anyway. He said I should have already seen improvement when he bumped us to 500 mg. I think he only has a handful of PANDAS patients. I don't think he's had his hands in this quite enough for me.

[MomWithOCDSon]

Have you tried months-plus of Augmentin XR?

 

Despite some saw-toothed recovery patterns, overall, our DS12 IS recovering, slowly but surely. And I've seen similar reports on the efficacy of XR.

 

Hang in there and don't give up! Consult the experts, keep trying different abx, and give them time to kick in and work. I don't know about you, but when we saw some almost instantaneous (within 2 days) results from the abx, we made the assumption the improvement would continue exponentially at that rate. It hasn't. But it has continued, just not as dramatically as the initial results would have led us to expect.

 

I will keep my fingers (and toes) crossed for you!

[sf_mom]

I think consulting with Dr. T is a great choice. I would also check everyone in the house: ASO and Anti-DNAse-B to make sure other family members are clear of strep. Similar to Saving Sammy recovery takes a long time...... so keep up with the antibiotics and perhaps a switch is required but have a PANDAS Dr. guide in that decision.

 

-Wendy

 

 

 

Amox for 30 days - seen drastic improvement within 5 days - 99%. Siblings both came down with strep then, and she regressed. (Tics came right before the strep diagnosis and the Amox). After siblings got well, she was still on Amox, but never regained improvement.

Zith 250 mg for 30 days, then 500 mg for another 30 days. Doctor says that if we were going to see improvement, we would have seen it by now. The only thing that I can say we put in the mix was Inositol about 2 days before we started 500 mg. I think we'll definitely stop taking that.

I would say the setbacks took us to baseline, or what we had started with. The tics are a different story. I think they are worse now, when they had went completely away after starting Zith at 250 mg. The only thing that I am coorelating with the setbacks are viruses -either had by her or by someone in the family. But how do you get past that??? Put her in a bubble??

We have not tried IVIG or PEX. I don't want to try something that advanced without even knowing all I need to know about the PANDAS. I am working on getting a consult with Dr. T. Hoping hoping hoping he can give me more guidance than I have gotten so far!!!!!

[kcdc3]

I think consulting with Dr. T is a great choice. I would also check everyone in the house: ASO and Anti-DNAse-B to make sure other family members are clear of strep. Similar to Saving Sammy recovery takes a long time...... so keep up with the antibiotics and perhaps a switch is required but have a PANDAS Dr. guide in that decision.

 

-Wendy

 

We have not checked everyone's DNAse titers- would that necessarily show anything? Would that confirm someone as a carrier?

[kcdc3]

Have you tried months-plus of Augmentin XR?

 

Despite some saw-toothed recovery patterns, overall, our DS12 IS recovering, slowly but surely. And I've seen similar reports on the efficacy of XR.

 

Hang in there and don't give up! Consult the experts, keep trying different abx, and give them time to kick in and work. I don't know about you, but when we saw some almost instantaneous (within 2 days) results from the abx, we made the assumption the improvement would continue exponentially at that rate. It hasn't. But it has continued, just not as dramatically as the initial results would have led us to expect.

 

I will keep my fingers (and toes) crossed for you!

 

 

We have yet to try the Augmentin XR. Just getting the Zith was hard enough! Hopefully Dr. T can presribe that when we speak with him.

When you say give them time to kick in and work - what time frame are you looking at?

[sf_mom]

Saving Sammy was on the high dose for a year and 3 additional at a lower dose.

 

Have you tried months-plus of Augmentin XR?

 

Despite some saw-toothed recovery patterns, overall, our DS12 IS recovering, slowly but surely. And I've seen similar reports on the efficacy of XR.

 

Hang in there and don't give up! Consult the experts, keep trying different abx, and give them time to kick in and work. I don't know about you, but when we saw some almost instantaneous (within 2 days) results from the abx, we made the assumption the improvement would continue exponentially at that rate. It hasn't. But it has continued, just not as dramatically as the initial results would have led us to expect.

 

I will keep my fingers (and toes) crossed for you!

 

 

We have yet to try the Augmentin XR. Just getting the Zith was hard enough! Hopefully Dr. T can presribe that when we speak with him.

When you say give them time to kick in and work - what time frame are you looking at?

[sf_mom]

ASO tells you there has been a strep infection and Anti-DNAse-B Titers rise 8 weeks post infection... BUT, how long it takes them to fall in unknown and could vary from individual. My husband's ASO and Anti-DNAse-B were both elevated positive, mine were not. We are treating him as a precaution for our entire family. Cultures and rapids were negative for him but he has had some GI issues so it could be in his gut. If the titers fall within normal range, I think its safe to assume there was an active infection.

 

 

 

 

I think consulting with Dr. T is a great choice. I would also check everyone in the house: ASO and Anti-DNAse-B to make sure other family members are clear of strep. Similar to Saving Sammy recovery takes a long time...... so keep up with the antibiotics and perhaps a switch is required but have a PANDAS Dr. guide in that decision.

 

-Wendy

 

We have not checked everyone's DNAse titers- would that necessarily show anything? Would that confirm someone as a carrier?

[swim]

I am sorry to hear about the ups and downs - just know we are all there with you. It hurts and it isn't fair, but we can help each other figure this out!

 

Our son weighs 60 pounds and when he is having an increase in symptoms we increase him to 1,000 mg of keflex a day (500 mg twice a day) for 30 days. The 1,000 mg dosage helps. Not sure how that compares to the dosage you have been giving when symptoms are the worst. Good luck - keep searching - you will find something that helps!

[Iowadawn]

Boy, Can I empathize with you. It is exhausting. This whole PANDAS thing wears you down. Keep fighting. A PANDAS doc is a good move.

 

We had NEGATIVE throat cultures and we had ASO/DNase B results so high that Dr. Cunningham said "active strep infection". Her comment to us was that the titer results "confirm a recent or recurrent strep infection". I had to PUSH for the blood tests, but my gut was right. We had been a strep factory. No wonder our son wasn't able to sustain improvement. Whatever you do, DON'T head into an IVIG w/o clearing the family. We are pretty much back to square one with our son. The difference now is that we are all on abx.

 

Just wanted to pass this along. Dawn