IVIG for CVID

[bigmighty]

DS's PANDAS symptoms disappeared entirely six weeks ago (shortly after 19 day steroid taper). He remains on Augmentin 875 twice daily. His overall IgG is 600. Doc says IgG will never improve without multiple IVIGs and that DS is considerably immune compromised. Doc also says we will need to reduce dose of Augmentin soon, but when we do, DS likely will get strep again immediately and all symptoms will return. Doc recommends IVIG every 8 weeks for a year then check IgG to see if improved - starting with IVIG this August. Doc also says it is highly likely that all PANDAS symptoms will return as soon as we start the IVIGs.

 

Rock and a hard place. After 16 1/2 months of severe OCD, we would love to keep this happy OCD-free thing going for as long as possible. But doc says we have to reduce Augmentin by Halloween. DS is almost 14 and starts high school in the fall. Either we start the first of multiple IVIGs in August (and possibly get the OCD back at that time) or we wait until we reduce Augmentin in October, and just hold off, continue lower dose of antibiotics, and see if DS actually DOES get strep and return of symptoms. In that second version either - a) he gets strep again immediately and we kick back up the Augmentin, do more steroids, try to get back to a better place, and then move forward to schedule IVIGs or he doesn't get strep and makes it through the year on reduced antibiotics and we don't have any return of symptoms.

 

If you were me, would you be proactively starting the IVIG ball rolling now and scheduling all of those appointments? Or would you want to wait and see if DS actually has the immune capabilities to keep strep at bay on prophylactic dose of antibiotics? Obviously, the goal is to get DS into the best possible shape to be healthy for the long-term. But if we are lucky enough that he remains symptom free for the entire next year, we could hold off on IVIG until next summer. Then he could have IVIG in June and August of 2013 and see if that was sufficient to get an IgG bump. Trying not to disrupt his entire freshman year in HS with OCD and multiple IVIGs, but don't want to do the wrong thing for him. Thoughts?

[Tracie]

DS's PANDAS symptoms disappeared entirely six weeks ago (shortly after 19 day steroid taper). He remains on Augmentin 875 twice daily. His overall IgG is 600. Doc says IgG will never improve without multiple IVIGs and that DS is considerably immune compromised. Doc also says we will need to reduce dose of Augmentin soon, but when we do, DS likely will get strep again immediately and all symptoms will return. Doc recommends IVIG every 8 weeks for a year then check IgG to see if improved - starting with IVIG this August. Doc also says it is highly likely that all PANDAS symptoms will return as soon as we start the IVIGs.

 

Rock and a hard place. After 16 1/2 months of severe OCD, we would love to keep this happy OCD-free thing going for as long as possible. But doc says we have to reduce Augmentin by Halloween. DS is almost 14 and starts high school in the fall. Either we start the first of multiple IVIGs in August (and possibly get the OCD back at that time) or we wait until we reduce Augmentin in October, and just hold off, continue lower dose of antibiotics, and see if DS actually DOES get strep and return of symptoms. In that second version either - a) he gets strep again immediately and we kick back up the Augmentin, do more steroids, try to get back to a better place, and then move forward to schedule IVIGs or he doesn't get strep and makes it through the year on reduced antibiotics and we don't have any return of symptoms.

 

If you were me, would you be proactively starting the IVIG ball rolling now and scheduling all of those appointments? Or would you want to wait and see if DS actually has the immune capabilities to keep strep at bay on prophylactic dose of antibiotics? Obviously, the goal is to get DS into the best possible shape to be healthy for the long-term. But if we are lucky enough that he remains symptom free for the entire next year, we could hold off on IVIG until next summer. Then he could have IVIG in June and August of 2013 and see if that was sufficient to get an IgG bump. Trying not to disrupt his entire freshman year in HS with OCD and multiple IVIGs, but don't want to do the wrong thing for him. Thoughts?

Why

does the Dr want to lower the Dose of Augmention? who is the Dr?

[Dedee]

My son also has low IgG and subclass 3. Last year the results came back low and we also found the myco p. The doctor started him on antibiotics and a supplement for his immune system (bovine colostrum). When we tested again about 5 or six months later, all of his immune panel was normal. He stayed on antibiotics for about 7 months and his myco p titers came down to normal so he is now off antibiotics and takes OLE. However, we just had more labs done a couple weeks ago for an appointment coming up in two weeks. Again, his IgG and subclass 3 levels have dropped. I'm not sure if this has anything to do with the fact that we stopped the immune boosting supplement or what.

 

If I were you, I would try to go with what you think is best for your child. If you can't get it from the doctor you are currently seeing then find another even if it means some travel. Personally, I think if he is doing well on antibiotics then I would stick with it. My oldest son (not the one with immune issues), has been on antibiotics for 5 years for PANDAS and Dr. M told me recently to leave well enough alone till he is around 18. Have you tried any supplements to boost immunity? One provider we have seen told us that chronic infection can cause IgG levels to drop. I wasn't a real believer in the immune booster until my son took it. It could have been coincidence but he started a growth spurt shortly after taking it and has grown so much over this school year. I'm thinking of getting some more now since his levels have dropped again. We have an appointment with an Immunologist soon though so I will wait to see what she says.

 

Just stick with your Mommy gut. You know your child better than anyone. Many kids take augmentin for extended periods of time. If he isn't having any stomach issues then just make sure he is taking a good probiotic and find a doctor that agrees with your plan. There are plenty of PANDAS specialist that will support an antibiotic only plan. IVIG is always an option later if you decide you need it. Best of luck.

 

Dedee

[dcmom]

Hi Big Mighty-

 

Well first- YAY for your son- that he is doing well!!!

 

IMHO PANDAS needs to be treated based on symptoms alone. If a child is doing well- (IMHO) DO NOTHING! Do not even change your laundry detergent! Stay the course, and enjoy life.

 

If/ when things go south again is the time to treat. IMHO each episode should be treated quickly, and in order of least risky to more risky treatments. This means- within 24 hours of seeing pandas again, start with advil and increased or switched antibiotics, then if needed proceed to steroids, and then if needed proceed to IVIG/ PEX.

 

Unless your son is sick very frequently (CVID) or is in a pandas flare, I would not even consider an IVIG.

 

My older daughter had IGG in the 600's also. Our doc took a wait and see approach, we tested about 4 mos later, and she is now back within the normal range. I think pandas can completely mess up most test results, not to mention that the immune system has gone haywire. I think it is prudent to take a "wait and see" stance, and retest, and retest with most questionable results.

 

I personally would not consider treatment for CVID unless there is chronic or constant illness, there is chronic pandas flare ups, or if the immune numbers remain alarmingly low (not borderline) for a year.

 

I do agree with the doc on one thing, however. I think the best case scenario would be for you to work on slowly weaning your son down to a prophylactic dose of augmentin after a six month remission. Some kids seem to be dependent on antibiotics (then by all means- keep them on) but some do not (mine) and I think it is best to figure out what situation you are in.

 

Best of luck to you- enjoy the good days to the fullest!

[kimballot]

Does your son have a history of chronic infection that trigger PANS exacerbations? If he has a strong history of infection then it is unlikely that he will stay healthy without IVIG and you may want to get going with IVIG. If he does not have a history of chronic infection, then you may want to hold off and keep him on antibiotics. If the Doc says he is going to need to come off augmentin by halloween - what will he put him on after that? If he is going to change meds, perhaps you could make the change this summer so that IF he flares with the change at least he is not in school at the time

 

My DS15 is also CVID but has chronic sinusitis that we could not clear prior to IVIG. My DS DID have a huge flare with the first IVIG and I would not want anyone to go through that unnecessarily. However, since we started IVIG a year ago, he has had NO sinus infections and it has allowed his brain to take a break from PANDAS attacks - which is letting us clean up his OCD and behaviors a bit, since he had repeated exacerbations for many years.

 

 

My son's Post IVIG flare came about at the end of 8th grade and continued until December of 9th grade. He has started to catch up in school since January, but it has really taken a toll on him educationally. I am glad that it was his Freshman year and not his sophomore or junior year. I am hoping he can pull it together next year and then may have a shot at the post-high school path that we know he is capable of. So - that is one more think you should consider as you make this decision.

 

It is a huge decision and I feel for you. In the end, I agree with others that you need to follow your gut.

[Hopeny]

My son also has low IgG and subclass 3. Last year the results came back low and we also found the myco p. The doctor started him on antibiotics and a supplement for his immune system (bovine colostrum). When we tested again about 5 or six months later, all of his immune panel was normal. He stayed on antibiotics for about 7 months and his myco p titers came down to normal so he is now off antibiotics and takes OLE. However, we just had more labs done a couple weeks ago for an appointment coming up in two weeks. Again, his IgG and subclass 3 levels have dropped. I'm not sure if this has anything to do with the fact that we stopped the immune boosting supplement or what.

 

If I were you, I would try to go with what you think is best for your child. If you can't get it from the doctor you are currently seeing then find another even if it means some travel. Personally, I think if he is doing well on antibiotics then I would stick with it. My oldest son (not the one with immune issues), has been on antibiotics for 5 years for PANDAS and Dr. M told me recently to leave well enough alone till he is around 18. Have you tried any supplements to boost immunity? One provider we have seen told us that chronic infection can cause IgG levels to drop. I wasn't a real believer in the immune booster until my son took it. It could have been coincidence but he started a growth spurt shortly after taking it and has grown so much over this school year. I'm thinking of getting some more now since his levels have dropped again. We have an appointment with an Immunologist soon though so I will wait to see what she says.

 

Just stick with your Mommy gut. You know your child better than anyone. Many kids take augmentin for extended periods of time. If he isn't having any stomach issues then just make sure he is taking a good probiotic and find a doctor that agrees with your plan. There are plenty of PANDAS specialist that will support an antibiotic only plan. IVIG is always an option later if you decide you need it. Best of luck.

 

Dedee

 

Dedee your mention of IGG3 caught my eye. We did a lot of testing on DD2 because of DD8's trifecta (Lyme, Myco, elevated Strep with some PANDAS symptoms but no tics) and DD2's infection after infection. We found out that DD2 has something called a Mannose Binding Lectin deficiency, actually she has almost none of this protein. We are going to see an expert mid-June so I don't know much about it yet except it means a major immune system issue. DD2 also had the IGG3 issue, I don't know if it is related to the MBL deficiency but am just mentioning this to you. I believe it is something not commonly tested for.

[bulldog24]

agree completely with dcmom.

[Dedee]

Hopeny,

 

Thank you so much for mentioning that. We are going to the doctor soon and I will try to remember to bring that up, especially if we are having more labs drawn. Are you doing anything to treat it?

 

Dedee

[bigmighty]

Thanks for all of the thoughts. They are much appreciated. We have an appt. with a local immunologist to see if he agrees about the need to treat CVID at this time. We will get more info and move forward from there. If we decide to treat CVID, either now or in future, we hopefully will be able to convince the local doc to take us on so we don't need to travel 300 miles. At the very least, we have a couple of months of good times to be had at present! Thanks again.

[Hopeny]

Hopeny,

 

Thank you so much for mentioning that. We are going to the doctor soon and I will try to remember to bring that up, especially if we are having more labs drawn. Are you doing anything to treat it?

 

Dedee

 

 

We are seeing a specialist in mid June so I don't know much. I am in an ignorance is bliss period . From my limited reading it seems IVIG (maybe monthly for life) is the only treatment. I am not sure yet, or what we would even do - DD is only 2 1/2. I mentioned it today at Dr. B's office when I was there with DD8 and his PA told me that she has another patient with the same disorder, they are doing IVIG. I have not had DD8 tested yet for this but am going to, hopefully she does not have it too in addition to everything else. Good luck.

[JenniferG]

On 5/30/2012 at 3:15 PM, kimballot said:

Does your son have a history of chronic infection that trigger PANS exacerbations? If he has a strong history of infection then it is unlikely that he will stay healthy without IVIG and you may want to get going with IVIG. If he does not have a history of chronic infection, then you may want to hold off and keep him on antibiotics. If the Doc says he is going to need to come off augmentin by halloween - what will he put him on after that? If he is going to change meds, perhaps you could make the change this summer so that IF he flares with the change at least he is not in school at the time

 

My DS15 is also CVID but has chronic sinusitis that we could not clear prior to IVIG. My DS DID have a huge flare with the first IVIG and I would not want anyone to go through that unnecessarily. However, since we started IVIG a year ago, he has had NO sinus infections and it has allowed his brain to take a break from PANDAS attacks - which is letting us clean up his OCD and behaviors a bit, since he had repeated exacerbations for many years.

 

 

My son's Post IVIG flare came about at the end of 8th grade and continued until December of 9th grade. He has started to catch up in school since January, but it has really taken a toll on him educationally. I am glad that it was his Freshman year and not his sophomore or junior year. I am hoping he can pull it together next year and then may have a shot at the post-high school path that we know he is capable of. So - that is one more think you should consider as you make this decision.

 

It is a huge decision and I feel for you. In the end, I agree with others that you need to follow your gut.

Once you received IVIG did the chronic sinusitis clear?

Was it HD or LD?

How long did you continue?

 

Thank you!!