Now onto younger son, 5; suspected PANDAS too...

[saidie10]

I hope someone can offer some advice on how to deal with my other son, DS5. We wrapped up two day IVIG on my DS7 two days ago and keeping our fingers crossed for continued healing. DS5 is next on my radar...

 

We tested both boys with Dr. R in Dallas in June and DS7 showed IgG deficiency while DS5 was a mere 5 points away from a deficiency both in SubClass 2. DS7 had high Anti-DNaseB titers that rose in response to an exacerbation of symptoms in May when his brother had strep. DS5 had separation anxiety, chorieform movements in his fingers and hands, baby talk, increased anger and anxiety, and obsessive compulsive thoughts and fears during the strep infection in May which did get better after abx treament of 10 days. His tests from June though indicated that his ASO and Anti-DNaseB were already down within normal range. Finally, DS7 tested 164 on CamKinase, and DS5 tested 179.

 

Both Dr. K, Dr. R., and Dr. I. said at this time we should only treat DS7 which we did with IVIG two days ago. None of them felt that DS5 should even be on abx to prevent infection. I must say I am very worried about the future of DS5 though. I feel like the next strep infection could send him over the edge! His CamK was 179...that seems high compared to some others on the board who definitely have PANDAS dx. I am very worried about him now that strep central school has begun!

 

I was thinking of emailing Dr. Cunningham for her advice. Any other suggestions?

 

Thanks so much for the input...

 

Cindy

Edited August 22, 2010 by saidie10

[susie]

Cindy,

 

Did any of the doctors say why they didn't want to treat? I'm very curious about that. I would think they would want to treat before he gets worse. (I thought I had read on this forum that each exacerbation can get progressively worse if left untreated.?)

 

I'm so sorry you're having to worry about all of this now for your 5 year old too. I only have one child and I can't imagine having this worry X 2.

 

Take care.

 

Susie

[saidie10]

We did the testing with Dr. R and did not go back to see him after that because we were trying to find a doctor closer to home which we did. We did speak with his Nurse and he had only advised to treat my DS7 with the immune deficiency and do IVIG. At the time we did not have the Cunningham Test results back on either son so I actually have not spoken with Dr. R since those results were back so maybe I should? Maybe he would do abx?

 

During our phone consult with Dr. K, we spent most of the time talking about DS7 and IVIG, etc. He said DS5 would be a wait and see. It is my understanding he does not put a lot of weight in the Cunningham Scores.

 

We went to Dr. I for our DS7 and that was really our main focus. Because DS5's numbers looked the way they did, there was nothing to treat at the time.

 

Again, I really worry about the high CamK...it has to mean something!!!

[Megs_Mom]

I think the main thing is to have a plan in place for a time that he may have another exacerbation. Maybe the next step would be to have an appt with one of the main doctors, specifically for ds5. Did ds5 have any other high levels (dopamine, antilygano, etc) on Cunningham test? Does he currently have any signs or are you thinking preventatively only? If you have a full appt for ds5, you might find the thinking of a major doc would result in preventative steps - or at least a plan of immediate action should you see signs. Our daughter cleared on abx as well - after her early episode (3 yrs old), we had a 3 year remission. The next round, however, was harder to deal with. I'm not entirely sure that we would have kept her on abx for the full 3 years, after "only" a month long 1st illness. In retrospect however, that clearly would have prevented a lot of pain. Every story is a little different.

 

Great news that he cleared so quickly on abx, if I am understanding your story correctly!

 

It must be so amazingly hard to be worried about 2 children with such an illness. You have my complete empathy.

[saidie10]

Thank you both for the quick responses. DS5's Anti-Neuronal Antibody Titers from the Cunningham Test seem to be within normal range. DS7's D2 was 16000, very elevated as was his Dopamine from his Neurotransmitter Urine Test. In fact, all of his Neurotransmitters were very elevated. So basically, all of DS7's tests were pretty cut and dry that something was going on in his brain; that something was going on with his immune system; and that strep was the culprit. I know that strep is the culprit for DS5 too, but on paper, he is not sick yet other than the high CamK.

 

Guess the only option is to wait and see and to be prepared with a plan in place?

[momoffive]

I hope someone can offer some advice on how to deal with my other son, DS5. We wrapped up two day IVIG on my DS7 two days ago and keeping our fingers crossed for continued healing. DS5 is next on my radar...

 

We tested both boys with Dr. R in Dallas in June and DS7 showed IgG deficiency while DS5 was a mere 5 points away from a deficiency both in SubClass 2. DS7 had high Anti-DNaseB titers that rose in response to an exacerbation of symptoms in May when his brother had strep. DS5 had separation anxiety, chorieform movements in his fingers and hands, baby talk, increased anger and anxiety, and obsessive compulsive thoughts and fears during the strep infection in May which did get better after abx treament of 10 days. His tests from June though indicated that his ASO and Anti-DNaseB were already down within normal range. Finally, DS7 tested 164 on CamKinase, and DS5 tested 179.

 

Both Dr. K, Dr. R., and Dr. I. said at this time we should only treat DS7 which we did with IVIG two days ago. None of them felt that DS5 should even be on abx to prevent infection. I must say I am very worried about the future of DS5 though. I feel like the next strep infection could send him over the edge! His CamK was 179...that seems high compared to some others on the board who definitely have PANDAS dx. I am very worried about him now that strep central school has begun!

 

I was thinking of emailing Dr. Cunningham for her advice. Any other suggestions?

 

Thanks so much for the input...

 

Cindy

 

Dr T said he wants to treat my 5 year old [sibling of another of my kids who has severe PANDAS] who has elevated titers and sep anxiety, some tics and OCD - mild at this point. my 5 year old has never had a strep infection that I am aware of, but Dr T thinks abx during the school year will be beneficial. I am not going to argue w/ that!

[saidie10]

I hope someone can offer some advice on how to deal with my other son, DS5. We wrapped up two day IVIG on my DS7 two days ago and keeping our fingers crossed for continued healing. DS5 is next on my radar...

 

We tested both boys with Dr. R in Dallas in June and DS7 showed IgG deficiency while DS5 was a mere 5 points away from a deficiency both in SubClass 2. DS7 had high Anti-DNaseB titers that rose in response to an exacerbation of symptoms in May when his brother had strep. DS5 had separation anxiety, chorieform movements in his fingers and hands, baby talk, increased anger and anxiety, and obsessive compulsive thoughts and fears during the strep infection in May which did get better after abx treament of 10 days. His tests from June though indicated that his ASO and Anti-DNaseB were already down within normal range. Finally, DS7 tested 164 on CamKinase, and DS5 tested 179.

 

Both Dr. K, Dr. R., and Dr. I. said at this time we should only treat DS7 which we did with IVIG two days ago. None of them felt that DS5 should even be on abx to prevent infection. I must say I am very worried about the future of DS5 though. I feel like the next strep infection could send him over the edge! His CamK was 179...that seems high compared to some others on the board who definitely have PANDAS dx. I am very worried about him now that strep central school has begun!

 

I was thinking of emailing Dr. Cunningham for her advice. Any other suggestions?

 

Thanks so much for the input...

 

Cindy

 

Dr T said he wants to treat my 5 year old [sibling of another of my kids who has severe PANDAS] who has elevated titers and sep anxiety, some tics and OCD - mild at this point. my 5 year old has never had a strep infection that I am aware of, but Dr T thinks abx during the school year will be beneficial. I am not going to argue w/ that!

 

Absolutely not! I say go for it. I am terrified every time I have to send my son to school...just waiting for that day he comes home sick .

 

I have decided to schedule an appt with my DS7's Immunologist to have a plan in place. Maybe he would consult with some other doctors about it? Maybe I should give Dr. T a ring!