5 IVIG's later; now HORRIBLE HEAD TIC causing sever headaches

[saidie10]

Hello,

 

It's been a while (a long while since I posted last). I have had some tremendous personal family issues in the past year that have almost pushed my marriage to the brink. The stress of the health of both my boys over the last three years has taken a tremendous toll on my marriage and me physically and mentally. I am sure you all can relate. DH and I have been seeing a therapist since January and thankfully we are reconnecting, but I myself am on three medications for depression (my god what has happened?!) I guess we get desperate to keep our sanity and lord knows I have to keep it together for my kids.

 

Currently, my DS9 is experiencing a resurgence of tics including a horrible head shaking tic that is causing him a lot of pain and distraction in school. Dr. I in San Antonio is no longer treating PANDAS kids (I know he would see him but he is no longer doing any aggressive treatment) as there were so many insurance denials so here we are at a crossroads. I could not get him in to Dr. A (Pedi Neurologist in San Antonio who has seen him) until January 23rd!!!!! He is currently on Omega 2's, Vit D3 suppl, 250mg daily of Penicillin, Probiotic, and 25mg of Zoloft for OCD (which is very much under control).

 

If you were looking to do a phone consult or even travel to see a PANDAS EXPERT, whom would you call?? We have seen Dr. R in Dallas and we are just not going to be going back there. My son has had 5 IVIG's and he is simply not healed. We would see tremendous improvements in between but we are just not getting this right?! ANY advice is greatly appreciated.

 

Thanks,

Cindy

 

PS..we phone consulted with Dr. K before treatment in San Antonio back in 2010.

Edited September 28, 2012 by saidie10

[Missmom]

Did you know there is a clinical trial for Zithromax and I think they are still recruiting?

[LNN]

Do you have any ideas on what's triggered the relapse? Some of the PANS doctors cast a wider net than others when looking for causes and possible treatments. So that may be a factor in your choice.

 

Since you've been gone awhile, there are a few ideas that have been explored beyond strep and even lyme. The big "new" idea for one of my kids was the topic of methylation. It's the way your body uses certain vitamins/amino acids to kick start various cycles and metabolisms in your body. If you have problems with the way your body converts (methylates) these raw ingredients, you can end up with deficiencies or excesses of seratonin, dopamine, ingredients necessary for cell energy and ingredients necessary to rid the body of toxins (dopamine and toxins can both be a big trigger of tics, in addition to any autoimmune trigger).

 

The fact that you're battling depression is completely understandable. But needing three different meds - it might be worth while to explore methylation for yourself as well. Both you and your son may have issues worth exploring. I'd search the forum archives for discussions to see if it rings any bells (Jan-April 2012 is where you'll find a lot of discussion). If this were something worth exploring, Dr T may be a good start, as he tests for these issues and also does phone consults more than some of the other docs.

[saidie10]

Thank you both for the quick response. I will look into the Clinical Trial for Zithro...is that with Tanya Murphy in Florida? As for the information on the methylation, this is very, very interesting! DS had very elevated neurotransmitters on both urinalysis that we did in the past two years. Dopamine was like 4 times the normal. Also, his D2 receptors done by the Cunningham tests were 16000 which Dr. C said was extremely elevated and not seen in normal kids (his camKinase was 164). She also indicated the connection with elevated dopamine and tics.

 

Thank you so much. I will look into both of these and have emailed Dr. T on other occasions. Maybe we just need to bite the bullet and have a phone consult with him...

 

Do you have any ideas on what's triggered the relapse? Some of the PANS doctors cast a wider net than others when looking for causes and possible treatments. So that may be a factor in your choice.

 

Since you've been gone awhile, there are a few ideas that have been explored beyond strep and even lyme. The big "new" idea for one of my kids was the topic of methylation. It's the way your body uses certain vitamins/amino acids to kick start various cycles and metabolisms in your body. If you have problems with the way your body converts (methylates) these raw ingredients, you can end up with deficiencies or excesses of seratonin, dopamine, ingredients necessary for cell energy and ingredients necessary to rid the body of toxins (dopamine and toxins can both be a big trigger of tics, in addition to any autoimmune trigger).

 

The fact that you're battling depression is completely understandable. But needing three different meds - it might be worth while to explore methylation for yourself as well. Both you and your son may have issues worth exploring. I'd search the forum archives for discussions to see if it rings any bells (Jan-April 2012 is where you'll find a lot of discussion). If this were something worth exploring, Dr T may be a good start, as he tests for these issues and also does phone consults more than some of the other docs.

[philamom]

My daughter's Anti D-2 were also 16000, Cam K 136. It was done 3 years ago though.

 

Curious if you're doing high dose or low dose IVIG?

[landamom]

I would second the phone consult with Dr. T. At the very least he can switch your abx if they don't seem to be working anymore. My understanding of IvIg is that it will not be completely effective if there is still an underlying infection that has not been treated enough. If you have seen improvements in the past with abx then you already know they can help - it sounds like you may need a different one at this point. Plus he will send you for a ton of other blood work which will be very helpful. Best luck!

[saidie10]

We did one high dose IVIG and then three (what my Immunologist called booster IVIG's) and then another high dose. This was through Dr. I in San Antonio. Last IVIG was in December, 2011. Our sons Cunningham was done about 2.5 years ago. We have also done the Western Blot for Lyme through LabCorp and although technically they were negative for all four of us, there was 1 lyme specific band found in DS9 and myself and 2 lyme specific bands found in DH.

 

Just sent an email to Dr. T's office. Guess we need to really consider finding someone who is treating a lot of PANDAS kids. Dr. I was really trying and he did talk with Dr. C and even Dr. S with NIMH, but our boys were his first PANDAS patients.

Edited September 28, 2012 by saidie10

[CarLy]

We bought one of those neck pillows that wrap around your neck to provide a type of "cushion" for my daughter when she was having really bad neck tics. This may help to provide a little relief for your son at this time.

[smartyjones]

Currently, my DS9 is experiencing a resurgence of tics including a horrible head shaking tic that is causing him a lot of pain and distraction in school. Dr. I in San Antonio is no longer treating PANDAS kids (I know he would see him but he is no longer doing any aggressive treatment) as there were so many insurance denials so here we are at a crossroads. I could not get him in to Dr. A (Pedi Neurologist in San Antonio who has seen him) until January 23rd!!!!! He is currently on Omega 2's, Vit D3 suppl, 250mg daily of Penicillin, Probiotic, and 25mg of Zoloft for OCD (which is very much under control).

 

 

 

i am curious about when you saw the resurgence and when you began some of the supplements.

 

just wanted to metnion that although my kids don't experience tics, older son had horrible exacerbation due to change in probiotic and younger has seemed to ramp up in relation to vitamin D. younger son is quite deficient in D (tests at 20) - i plan to try again, just have begun some other things now and with school starting, didn't want to do it now. meaning that although i definitely think he needs D, but seems to have an adverse reaction to it. could be some type of herx - ?

[trggirl]

I was thinking the same thing as Smarty Jones. I know each child is different so this may not be the case for your son, but several of the things on your list are things that set my daughter's tics off. Omegas, D's, probiotics........ And she tests very low in D, but she can't tolerate it. Instant tics.

[LNN]

My son doesn't do so well with Omega 3's either. He has KPU/pyroluria and need to supplement with Evening Primrose Oil (EPO) which is an anti-inflammatory Omega 6. Omega 3s and 6s compete for the same binding sites and pyroluriacs are Omega 6 deficient. So adding Omega 3s actually makes the Omega 6 deficiency worse by blocking receptor sites. Have you tested for pyroluria? Having that can also cause you to be low in B6, which is essential for production of glutathione (major anti-oxidant/detox) as well as possible hindering the transsulfuration pathway (detox). This could trigger tics. So just something to put on your radar.

[saidie10]

so much information...thank you all so much. hoping to talk with Dr. T soon. we are looking for a new pediatrician in the san antonio/austin area if anyone has any good advice...

[T_Mom]

just agreeing with the possible effects of Omega...after a year my daughter started saying that the Omega brought on tics and OCD again(?) we dropped it.

I think you need to get to a PANS treating neurologist and settle in. If your son had remission with past tx -- can you pull any clues as to "what works/ed for him?"

My best--

[kthomas]

Saidle10, I met your family at that appointment with Dr. I in San Antonio in Dec. 2011. My ds8 has a 6 month appointment with Dr. I today. We have not gone the IVIG route yet, and was going to discuss if he still did IVIG with Dr. I today. I have always liked Dr. I and felt he was empathetic to the PANDAS cause, but that it was not his specialty. He did the dx of PANDAS for ds8 and he did start prophylactic dose of azithromycin, but he was not willing to be the primary doctor. So I started searching and I found another dr. in Texas. Dr. R. in Port Aransas. We have gone 3x to him and he upped the dose to 250 mg azithromycin daily and dx'd 10 mg strattera. Both have worked well for ds8 - 56lbs. I will PM you with his contact information. Dr. R. primarily treats autism patients with some PANDAS.

 

PS. Meeting you and seeing a real family dealing with similar issues was so heartening to me. Thank you for taking the time to talk to me and for letting your boys interact with my son. I too feel that this illness has taken a toll on my marriage. For me anyway, it has become my focus and I'm not much fun in the middle of a storm.

[kthomas]

Saidle10, I met your family at that appointment with Dr. I in San Antonio in Dec. 2011. My ds8 has a 6 month appointment with Dr. I today. We have not gone the IVIG route yet, and was going to discuss if he still did IVIG with Dr. I today. I have always liked Dr. I and felt he was empathetic to the PANDAS cause, but that it was not his specialty. He did the dx of PANDAS for ds8 and he did start prophylactic dose of azithromycin, but he was not willing to be the primary doctor. So I started searching and I found another dr. in Texas. Dr. R. in Port Aransas. We have gone 3x to him and he upped the dose to 250 mg azithromycin daily and dx'd 10 mg strattera. Both have worked well for ds8 - 56lbs. I will PM you with his contact information. Dr. R. primarily treats autism patients with some PANDAS.

 

PS. Meeting you and seeing a real family dealing with similar issues was so heartening to me. Thank you for taking the time to talk to me and for letting your boys interact with my son. I too feel that this illness has taken a toll on my marriage. For me anyway, it has become my focus and I'm not much fun in the middle of a storm.

 

9:12 PM - back from a long day in San Antonio at Christus Santa Rosa with Dr. I. The appointment went very well, and I felt very confident with what Dr. I had to say. He mentioned that he had been in contact with Dr. C. from OK and that she is in the process of opening up her lab and getting the Kam Kinase test available. He is currently treating PANDAS patients and set an appointment for 6 months from now so I think he plans to continue to treat them.