Dr K

[michele]

I was wanting an update from those of you who have seen, or spoken to Dr. K and how your child's symptoms are to date? How much trouble did those of you who spoke to him have in getting the treatment from other Dr's then him using his protocol? How many of you went to him versus having prednisone burst and IVIG done by another Dr?

 

I spoke to him today. He will send me a copy of his recommendations to take to my Dr. (I don't know what Dr. will listen) I need to ween him off the Abilify first. I don't think it is working anyhow other then attention and sleep aide because he is still emotional and anxious and ticcing, and agitated and angry. My next job will be to try to find a Dr. to give this info to who will be willing to treat him. I am getting burn out from the Dr. issues. I hope he Dr. K is my last stop. Yesterday his neuro said to find a psychiatrist to deal with the meds because they aren't working like they should. I have been trying to get in with a child psych for a month with no avail. Is it me? I feel so lost. Thanks for any input here.

 

Michele

[peglem]

I don't have any experience with Dr. K but wanted to comment on finding a local doc who is likely to cooperate. I have had the best luck with DO's. (doctor of osteopathy) I have no idea why this seems to make them different than other docs, just know that they tend to be listeners and willing to try things that are not neccesarily standard protocol. I was miserable with typical pediatricians trying to treat my very atypical daughter as though she were completely normal. I know you understand how sick of it all I was. Then an insurance change brought me to a new doctor (a DO) who was asking why and willing to help me figure things out.

We also have been through numerous psychiatrists and neurologists...until I found the good ones who are DOs. I'm thinking this is not a coincidence and whenever I need a referral to a specialist, I always ask that they try to find one that is a DO, as well. Just wanted to share that- finding an effective, responsive doctor can be such ###### with a lot of wasted time and hope.

[Diana]

Dr. Kovacevic has discussed his protocol w/Dr. Gupta, UC Irvine. Gupta is willing to do the protocol which is quite aggressive - but seems to work. Yale's Dr. Leckman, Director of Psychiatry - is backing Dr. K's approach with an upcoming clinical trial of the IVIG treatment. You might throw those names at whatever doctor you have that might do IVIG and have that doctor call Gupta or Leckman for a second opinion.

 

My son did the treatment end of September and he is largely improved by 95%. And should continue to improve within the next 3 months.

[Worried_Dad]

Wow, peglem - our experience was just like yours! We went through an endless procession of docs, and the MDs were mostly just frustrating. Would look at our son's twitching for a few minutes, ignore the other symptoms (fevers, polyarthritis / arthralgia), then tell us his problem "wasn't medical." SOOOOO maddening, when you know something is terribly wrong with your child and can't get anybody to take it seriously or consider all the symptoms.

 

We finally had a friend at work who hooked us up with a great DO about 50 minutes away (DAN! doc and certified Lyme specialist). He was very open-minded, listened, considered all the symptoms, and told us he was absolutely certain that some infectious or toxic agent was causing our son's symptoms. What a massive relief after being blown off repeatedly, often after a 6-8 week wait to see a new "specialist"! He was open to following Dr. K's suggestions as well, which made initial steps easier. Unfortunately, this awesome doctor passed away a few weeks ago of a heart attack, so we don't really have a local doc anymore.

 

Michele, I posted you our details with Dr. K a while back, but here's an update. I do believe Dr. K can be that "last stop" for you. He's smart, extremely knowledgeable about PANDAS, and very compassionate toward these kids and their suffering. He's been right about almost everything he's told us so far.

 

If Dr. K has one flaw, it might be that he's a bit overly optimistic sometimes when he predicts how quickly kids will recover post-IVIG. His intentions are good - he really wants to help these kids and see them regain their lives - but his natural optimism can cause some parental stress if things don't progress as rapidly as predicted. Our son is far better than he was pre-IVIG, but he still has a long way to go before he's fully recovered. Dr. K has been reassuring, though: given our son's age (12), he expects healing to take longer.

 

So as far as our son's condition goes right now: we're on week 8 post-IVIG, and this week has been kinda rough. Our other 2 boys (8 and 2) keep bringing bugs home from school / daycare, and every infection seems to kick Cormac's immune system up a notch and triggers a minor symptom exacerbation. A few days ago, our son suddenly developed "instant Tourette's": in addition to tics / twitches, he started a high-pitched barking vocal tic. In one day, it went from nonexistent to him barking several times a minute, with bursts of 8-10 barks. He's got a good attitude about it and jokes about it with us... but I have to admit, it discouraged me. Seems like we've probably got a few months before we'll see our son get back to 90-95%.

 

Hope that helps. We've been very impressed by Dr. K, he has helped us a lot so far, and our son is definitely much better off than pre-IVIG. The road to recovery is just longer - and bumpier - than we initially hoped. Sigh....

 

Hope everybody has a nice Thanksgiving. Keep the faith!!!

 

 

I don't have any experience with Dr. K but wanted to comment on finding a local doc who is likely to cooperate. I have had the best luck with DO's. (doctor of osteopathy) I have no idea why this seems to make them different than other docs, just know that they tend to be listeners and willing to try things that are not neccesarily standard protocol. I was miserable with typical pediatricians trying to treat my very atypical daughter as though she were completely normal. I know you understand how sick of it all I was. Then an insurance change brought me to a new doctor (a DO) who was asking why and willing to help me figure things out.

We also have been through numerous psychiatrists and neurologists...until I found the good ones who are DOs. I'm thinking this is not a coincidence and whenever I need a referral to a specialist, I always ask that they try to find one that is a DO, as well. Just wanted to share that- finding an effective, responsive doctor can be such ###### with a lot of wasted time and hope.

[bmom]

I am sorry you are having trouble again Worried Dad. Could you tell me how your son did the first 2 weeks post IVIG? We just finished week 2 and although we feel there was some improvement, we have not been able to see the clear improvement that others did. My son is 10 so that may be the reason. Perhaps he is 30-40% better vs. 80% others report. Also, PMORENO, how is Gaby now? And Amy, could you tell me how your daughter is post IVIG? Thanks.

[Worried_Dad]

Hi, bmom:

 

Our son showed major improvement over the 1st 3 weeks after IVIG... but things were really bad for him before IVIG, so that may be part of the reason why the progress was so obvious.

 

After Week 3, progress slowed down, and we've had more "bumps." But the bumps have not been as severe or as long-lasting as they were before IVIG. Somebody (might have been Pat or Diana?) explained in another post that the initial infusion of Ig really jump-starts things for 2-3 weeks, then it loses steam and the child's own immune system has to re-learn how to regulate its immune response properly. I think Pat and Diana experienced this pattern with their kids, too: big improvement for 2-3 weeks, then a rough patch, followed by more gradual progress.

 

Hope that helps. Does seem like improvement is slower than the "best-case" predictions we heard before the procedure, especially for kids older than 10.

 

Hang in there, and keep us posted!

 

 

I am sorry you are having trouble again Worried Dad. Could you tell me how your son did the first 2 weeks post IVIG? We just finished week 2 and although we feel there was some improvement, we have not been able to see the clear improvement that others did. My son is 10 so that may be the reason. Perhaps he is 30-40% better vs. 80% others report. Also, PMORENO, how is Gaby now? And Amy, could you tell me how your daughter is post IVIG? Thanks.

[michele]

Dr. K did stress that the older kids don't respond as well. Also sometimes he said the tics don't completely resolve. He did tell me an interesting thing, the foot bending, and hand cracking thing my son does is adventitious movements (St. Vitus Dance). Now I have to take his report to a Dr. who will perform the steroid burst. I don't think that is going to be easy to find locally. He has been really emotional lately and overreacts to everything. I try to stay calm because you can not reason with him at all.

 

Michele

 

 

Hi, bmom:

 

Our son showed major improvement over the 1st 3 weeks after IVIG... but things were really bad for him before IVIG, so that may be part of the reason why the progress was so obvious.

 

After Week 3, progress slowed down, and we've had more "bumps." But the bumps have not been as severe or as long-lasting as they were before IVIG. Somebody (might have been Pat or Diana?) explained in another post that the initial infusion of Ig really jump-starts things for 2-3 weeks, then it loses steam and the child's own immune system has to re-learn how to regulate its immune response properly. I think Pat and Diana experienced this pattern with their kids, too: big improvement for 2-3 weeks, then a rough patch, followed by more gradual progress.

 

Hope that helps. Does seem like improvement is slower than the "best-case" predictions we heard before the procedure, especially for kids older than 10.

 

Hang in there, and keep us posted!

 

 

I am sorry you are having trouble again Worried Dad. Could you tell me how your son did the first 2 weeks post IVIG? We just finished week 2 and although we feel there was some improvement, we have not been able to see the clear improvement that others did. My son is 10 so that may be the reason. Perhaps he is 30-40% better vs. 80% others report. Also, PMORENO, how is Gaby now? And Amy, could you tell me how your daughter is post IVIG? Thanks.