Dr. K and IVIG

[KeithandElizabeth]

I think that no matter what option you choose, you may have a relapse if your immune system is weak due to unknown allergies or just an immune deficiency.

 

I think that whichever treatment your choose, it would be beneficial to do an immunological work up a year later just to check in so to speak.

 

Dr. K also told us he was working hard on 2 cases that were unresolved. Perhaps, these cases are the exceptions that need more than 1 IVIG treatment. As Kelly mentioned earlier, our kids are the "testing" kids. Until recently, most of these kids were not doing immunological work ups. So, we just keep learning...

 

elizabeth

[pixiesmommy]

Regarding the Dr K comment about tick-y vs OCD... that was me The specific wording was not "OCD" though... it was something more like psychological or behavioral symptoms. I say this because (let me give you another headache) we have had a hard time in our own personal experience, sorting out specifically what is OCD and what is a tic in some instances (IE- skin picking on fingers.)

 

I'm a little confused (okay more than a little) about the steroid question because we also specifically asked him this and his response was, "You just can't keep a kid on steroids. It is NOT a long-term treatment." He obviously knows about this forum and reads it. I mean, why wouldn't he?? He told me several times that things were just "internet gossip" while giving me a pointed "I know where you got that idea" look. Things that are ONLY on this forum (that I have found, at least!) about PANDAS, treatment, drs, so forth. And I did not mention anything about finding that info online. Not that it wouldn't be easy to put two and two together... but I definitely got the impression that he reads us

 

While PEX kind of scares me, I know it has been done time and again for other things and it's more the anesthesia that scares me than the procedure. Pixie has been diagnosed with Bipolar (diagnosis prior to PANDAS) and while I don't wholeheartedly agree with that diagnosis, there IS a history of mental illness in my family and I would hate to do anything to trigger more of that (which anesthesia CAN.)

[thereishope]

It's good to know I'm not the only one who had those thoughts while in the middle of the battle. Like you, I would NEVER act on them, but I was right there w/ you. I also had many bargaining sessions with God where I often offered letting him shorten my life if he'd make the life of my son easier.

 

I was writing out bills today (yipee) and was listening to music...and a song came on (don't know the name, but, it was a Christian station) and it was talking about "making it through another day." My mind went back to the onset of this with my younger son and how I was barely making it through another day....really, there were days I just wanted to run away......and got so low at one point, I thought to God....maybe if I just could die it would be good...I can't deal with this pain...WHAT IS GOING ON WITH MY SON!! WHERE DID HE GO???? (I would NEVER do anything stupid...just fyi) Listening to this song, thinking back, and then thinking about everyone in the thick of it right now...I just broke down and sobbed. I am with all of you in this fight!

[sf_mom]

Just wanted to say the nurses had nothing but nice things to say about Pixie... 'adorable' was their comment. I explained the odd connection over the internet. I also wanted to add that Bi-polar runs in my family too as well as depression, anxiety on my husbands side. It my understanding that the long term in-balance of CaM Kinase is what effects the dopamine which is what triggers depression or Bi-polar. Maybe its all reversible with proper treatment for Pandas? I'm curious what Pixie's results were from Dr. Cunningham's test regarding dopamine? I can assure you because of the family history I'm focused on the long term CaM Kinase numbers.

 

-Wendy

[T_Mom]

Whew--this topic is heavy to read--

 

How thankful I am for those doctors (like Dr.s K, Latimer, Cunningham, Alia, Nicolaides, etc., etc.) who are building treatment successes for our children and children in the future who may have this--

 

Those willing to TRY often uncover the treatments through logical deduction, through caring concern that truly unbind the bound and heal the sick. Please keep at it -- we cannot thank you enough.

 

I thank God for them.

[bmom]

Well, my sons main symptoms are ticcing with sprinkling of urination issues, separation (mostly at night) and others. We had IVIG with Dr. K almost a year ago. For 6 months we were close to symptom free. Symptoms have been creeping back in the last few months and I feel the panick of it all the last few days. I too made a deal with God in the beginning which was I would help parents if he led me to the answer, so I post. I take a break because it is all overwhelming sometimes and I have not found the absolute answer. I will be emailing Dr. K soon about my son to see what to do. I did asking him about IVIG vs. PEX especially for ticcing kids. He said he has found them to be equally efective with IVIG being less risky so we went forward with IVIG. I do not know if that was the right choice. I believe I will try to talk to Dr. Latimer about my son as well. When we did IVIG, her name was not out there yet. Perhaps like P Mom said, these are not cures. Who knows! But for sure, God knows, I will tell you all if I find out the answer!!!

[Kayanne]

I'm a little confused (okay more than a little) about the steroid question because we also specifically asked him this and his response was, "You just can't keep a kid on steroids. It is NOT a long-term treatment." He obviously knows about this forum and reads it. I mean, why wouldn't he?? He told me several times that things were just "internet gossip" while giving me a pointed "I know where you got that idea" look. Things that are ONLY on this forum (that I have found, at least!) about PANDAS, treatment, drs, so forth. And I did not mention anything about finding that info online. Not that it wouldn't be easy to put two and two together... but I definitely got the impression that he reads us

 

I agree with Dr. K about keeping a kid on steroids...but steroids work for this in the short term; just as his one-time treatment of IVIG, and Dr. Latimer's one-time treatment with PEX. This is not like other autoimmune diseases....if the strep is kept at bay....the antibodies don't come back.

 

I'm feeling somewhat confident that I may never have to deal with another full blown PANDAS episode--maybe some viral bumps along the way. She is at 100% and will be on antibiotic prophylaxis probably into adulthood.

 

My Uncle took penicillian for 20+ years after his RF with no side effects and no reoccurance.

 

He may have just been joking about "internet gossip"; but I have a lot of proof that my daughter was helped by prednisone....how is it gossip to tell the truth about my daughter's story? Would she have been better now without it....probably...because we cleared her strep...but she had more of an "overnight" recovery while on the prednisone than the initial onset of the symptoms. I do not believe she would be at 100% right now without the pred.

 

She started first grade without any issues...her last quarter of kindergarden she couldn't even be "graded" because she could barely talk. Every day I thank God for Dr. Latimer and Diana Pohlman and all of the people who participate on this forum.

 

I'm sure Dr. K is a wonderful doctor, and I am very happy that he is helping in the treatment and gathering of information about PANDAS.

[pixiesmommy]

To clarify, the "internet gossip" was in regards to certain supplements, not in regards to whether or not steroids help. If he didn't think steroids were helpful, I don't think he would use them to diagnose.

[P_Mom]

Well, atleast all the docs agree on one thing.....they all agree that steroids should not be used long term....Dr. K does 5 days...Dr. Latimer one month....neither are considered long term. I spoke with Dr. Latimer the other day, and she said that a child does not even become immune supressed with one month of steriods....that comes with long term....she said the short term she uses addresses the inflammation.

[EAMom]

Hi to Dr. K. (if you are spying on us) Keep up the great work!

 

[Kayanne]

To clarify, the "internet gossip" was in regards to certain supplements, not in regards to whether or not steroids help. If he didn't think steroids were helpful, I don't think he would use them to diagnose.

 

Thanks for clarifying that...sorry about misinterpreting

[EAMom]

I was re-reading Sweedo's 1999 Lancet PEX/IVIG study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf Here are some tidbits from that:

 

1) More than 80% of the patients who received IVIG or PEX remained "much" or "very much" improved at 1 year, and their symptoms were in the subclinical range of severity. These results are particularly striking when compared with previous reports of the intractable nature of paediatric OCD and tic disorders: long-term outcome studies in OCD have shown that less than one third of patients had clinically meaningful symptom improvements. That is good news for us, unless you fall into the 20% that didn't have a good response! Possible reasons (my theory) for a less than good response to PEX/IVIG are listed in (4).

 

2) With regard to TICS. At 1 month follow-up: The plasma exchange group showed significant improvements in tic severity over placebo but the IVIG group did not, perhaps because baseline ratings were highest in the plasma exchange group.

 

What this is saying is that the PEX group was initially much more tic-ky to start. Baseline tic score for the PEX group was 18.9 and they dropped to 11.0 at 1 mo. Baseline tic score for the IVIG group was only 6.8 and they dropped to 5.5 at one month (which was a drop but not enough to be considered statistically significant). It is possible that if both groups were equally tic-ky to start, you might have have had a different result. For example, it could be once tics are at a certain low level (5 or 6) it hard to get rid of them completely with either procedure. It is my understanding that a tic score of 5 or 6 (where the IVIG kids were) is "nothing" (okay that's what dh said). So basically the IVIG kids went from nothing to nothing in regards to tics.

 

3) With regard to OCD. Both groups had a similar drop in OCD scores (point-wise) at one year (table 3). The IVIG group dropped 15.4 points (26.7 down to 11.3, a 58% drop), very similar to the PEX group which dropped 16 points (22.9 to 6.9 a 70% drop). If you look at total point drop in OCD, IVIG and PEX are pretty much the same. If you look at percentage drop in scores, PEX looks better. Then again, it's hard to say that this means that PEX is really superior, or if it just seems that way due to the fact that the groups were not exactly the same to start with. This is where repeating this study (and perhaps doing a better job of making sure the kids had comparable tic/ocd scores) to start would be really helpful. I'm also not certain if the difference of a 58% drop vs. a 70% drop is considered statistically significant, given the size of the sample.

 

4) Only two children failed to respond to active treatment (one given IVIG, one given PEX). Both had tics without OCD, but this pattern was not associated with a lack of response among children in the PEX and IVIG groups. I wonder if these 2 kids weren't really PANDAS, but regular tourettes? However, it does seem that tics in general are more resistant to treatment. Also, the age range for the study was 5-14. I didn't see where it said anything about whether any of the participants had reached puperty. Were the older kids more resistant to treatment? It didn't say. Or did they have family members that were strep carriers (I don't think they checked for this. Or did they have strep hiding out in their sinuses?? Throat cultures were done in the participants before the study, but that wouldn't show a sinus infection. Would the response have been better if these kids got full-strength antibiotics? or Azith?)

 

5) In the PEX group, symptom improvement usually occured near the end of the first week of treatment, whereas in the IVIG group improvement was not usually seen until at least the third week after treatment. However, PEX took 10-12 days to complete, IVIG only took 2. This is a good reminder for those that have IVIG to not be disapointed if you don't see an improvement in the first 3 weeks...it takes time!

 

6) All the kids were followed-up with either pen or erythromycin according to American Heart Association Guidelines (for RF). Three children (1 from the PEX group, 2 from the IVIG group) had had a second course of immunomodulatory therapy in the intervening months. At the time of their symptom exacerbations, all three children had a history of streptococcal exposure and increased anti-streptococcal titres despite prescription of oral penicillin prophylaxis. (Again, would full-strenth abs or Azith. had made a difference?)

 

BTW, this goes along with what Dr. Cunningham told Diana:

She did say that when the child is healing from the initial onset -- be sure family members are clear of strep because it is hard for the new IGG cells to do their job if they are around strep and it can re-ignite symptoms until good replication of IGG cells have occurred.

 

7) Interestingly, Swedo's study on SC and PEX/IVIG/steroids found IVIG to be superior to PEX. Both IVIG and PEX were superior to steroids.

 

8) I think what it boils down to, is that Swedo's 1999 lancet study needs to be repeated. Also, keep in mind, that her results are based on only 17 children...Dr. K. and Dr. Latimer (I assume) have treated a lot more than that.

[dcmom]

EAMom- thank you for taking us back to that study!

 

We are hoping (fingers crossed that the insurance comes through) to get pex soon. I am wondering if it would be prudent to keep me, dh, and non pandas daughter on antibiotics for six months (to help the healing)?

 

I spoke with a mom from the original study who kept all 4 of her kids (one pandas) on antibiotics untill pandas daughter reached puberty. It worked for them! (Nine months after coming off of abx her younger son developed pandas- unbelievable).

 

Has anyone done abx for whole family?

 

Eileen

[EAMom]

EAMom- thank you for taking us back to that study!

 

We are hoping (fingers crossed that the insurance comes through) to get pex soon. I am wondering if it would be prudent to keep me, dh, and non pandas daughter on antibiotics for six months (to help the healing)?

 

I spoke with a mom from the original study who kept all 4 of her kids (one pandas) on antibiotics untill pandas daughter reached puberty. It worked for them! (Nine months after coming off of abx her younger son developed pandas- unbelievable).

 

Has anyone done abx for whole family?

 

Eileen

 

We thought about it (putting younger sister on abs)but our ped was against it. (This was the same ped that recommended tonsilectomy in our youngest to help prevent infecting our PANDAS dd...go figure.) I suppose I should re-visit that idea again. Was putting the whole family on abs Swedo's idea? I just need some evidence (Swedo, or another doc) to say this isn't a crazy idea and maybe she would cave in. Or, we could just go behind her back (teach our youngest how to swallow pills and give her 2 a week from pandas dd's 7 a week stash...hmmm.)

[sf_mom]

Wow, thanks....... this helped and very insightful.

 

 

 

I was re-reading Sweedo's 1999 Lancet PEX/IVIG study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf Here are some tidbits from that:

 

1) More than 80% of the patients who received IVIG or PEX remained "much" or "very much" improved at 1 year, and their symptoms were in the subclinical range of severity. These results are particularly striking when compared with previous reports of the intractable nature of paediatric OCD and tic disorders: long-term outcome studies in OCD have shown that less than one third of patients had clinically meaningful symptom improvements. That is good news for us, unless you fall into the 20% that didn't have a good response! Possible reasons (my theory) for a less than good response to PEX/IVIG are listed in (4).

 

2) With regard to TICS. At 1 month follow-up: The plasma exchange group showed significant improvements in tic severity over placebo but the IVIG group did not, perhaps because baseline ratings were highest in the plasma exchange group.

 

What this is saying is that the PEX group was initially much more tic-ky to start. Baseline tic score for the PEX group was 18.9 and they dropped to 11.0 at 1 mo. Baseline tic score for the IVIG group was only 6.8 and they dropped to 5.5 at one month (which was a drop but not enough to be considered statistically significant). It is possible that if both groups were equally tic-ky to start, you might have have had a different result. For example, it could be once tics are at a certain low level (5 or 6) it hard to get rid of them completely with either procedure. It is my understanding that a tic score of 5 or 6 (where the IVIG kids were) is "nothing" (okay that's what dh said). So basically the IVIG kids went from nothing to nothing in regards to tics.

 

3) With regard to OCD. Both groups had a similar drop in OCD scores (point-wise) at one year (table 3). The IVIG group dropped 15.4 points (26.7 down to 11.3, a 58% drop), very similar to the PEX group which dropped 16 points (22.9 to 6.9 a 70% drop). If you look at total point drop in OCD, IVIG and PEX are pretty much the same. If you look at percentage drop in scores, PEX looks better. Then again, it's hard to say that this means that PEX is really superior, or if it just seems that way due to the fact that the groups were not exactly the same to start with. This is where repeating this study (and perhaps doing a better job of making sure the kids had comparable tic/ocd scores) to start would be really helpful. I'm also not certain if the difference of a 58% drop vs. a 70% drop is considered statistically significant, given the size of the sample.

 

4) Only two children failed to respond to active treatment (one given IVIG, one given PEX). Both had tics without OCD, but this pattern was not associated with a lack of response among children in the PEX and IVIG groups. I wonder if these 2 kids weren't really PANDAS, but regular tourettes? However, it does seem that tics in general are more resistant to treatment. Also, the age range for the study was 5-14. I didn't see where it said anything about whether any of the participants had reached puperty. Were the older kids more resistant to treatment? It didn't say. Or did they have family members that were strep carriers (I don't think they checked for this. Or did they have strep hiding out in their sinuses?? Throat cultures were done in the participants before the study, but that wouldn't show a sinus infection. Would the response have been better if these kids got full-strength antibiotics? or Azith?)

 

5) In the PEX group, symptom improvement usually occured near the end of the first week of treatment, whereas in the IVIG group improvement was not usually seen until at least the third week after treatment. However, PEX took 10-12 days to complete, IVIG only took 2. This is a good reminder for those that have IVIG to not be disapointed if you don't see an improvement in the first 3 weeks...it takes time!

 

6) All the kids were followed-up with either pen or erythromycin according to American Heart Association Guidelines (for RF). Three children (1 from the PEX group, 2 from the IVIG group) had had a second course of immunomodulatory therapy in the intervening months. At the time of their symptom exacerbations, all three children had a history of streptococcal exposure and increased anti-streptococcal titres despite prescription of oral penicillin prophylaxis. (Again, would full-strenth abs or Azith. had made a difference?)

 

BTW, this goes along with what Dr. Cunningham told Diana:

She did say that when the child is healing from the initial onset -- be sure family members are clear of strep because it is hard for the new IGG cells to do their job if they are around strep and it can re-ignite symptoms until good replication of IGG cells have occurred.

 

7) Interestingly, Swedo's study on SC and PEX/IVIG/steroids found IVIG to be superior to PEX. Both IVIG and PEX were superior to steroids.

 

8) I think what it boils down to, is that Swedo's 1999 lancet study needs to be repeated. Also, keep in mind, that her results are based on only 17 children...Dr. K. and Dr. Latimer (I assume) have treated a lot more than that.