saidie10

Basically at a loss now with what is going on....what to do next. IVIG August 18th and 19th. Saw a down slide in symptoms for a few weeks and then had an amazing period of 2-3weeks. Now head and eye tics are back. So confused. This illness is so hard to figure out?!?! So, has he been around strep? Is something else triggering it? What's next? Ask doctor for a different antibiotic? Steroids? I simply have no idea what to do . My poor DH is completely confused and actually thinks that because he had IVIG this was all supposed to go away. He simply could never bring himself to read all the literature and posts on here like I have to know that this is not necessarily so. As a reminder. My son was a truly classic PANDAS presentation. We found no other underlying issues (except no testing for Lyme at this point). Elevated titers in conjunction with symptom exacerbation, sudden onset OCD, etc. Anyway, any advice is ALWAYS greatly appreciated.

are things improving? this is so heartbreaking to read. i am so sorry your son and your family are suffering! continue to update...

thanks so much guys!

Ok, so head/eye tics are coming back in full force. So sad for my son and just trying to figure out what may be happening. We are about 7wks post IVIG and the last few weeks have been AMAZING. Now this. Scared and hoping we don't head down hill fast. DH and I decided we wanted to invest in some at home strep tests. Worth it? What advice can you guys give. Thanks so much.

This was hard to read, I can only imagine how tough reading those entries must have been for you . I think it must be ok to let yourself go back there though...to know that there is healing and hope for your children! Stay the tough, fighter mom you are and I agree about writing that book! You do have a story to tell...!

I've missed a bunch of posts recently so I am sure I am not caught up but thought I would drop in and send some positive thoughts your way. Stay strong...sounds like things continue to be difficult right now, but keep fighting.

Been MIA for a while so I am trying to get caught up with everyone! Lots of stuff going on with the boys, work, school....etc. You guys all know!! First the good news! We are about 4.5 weeks post IVIG and DS7 is doing really well! We are seeing no movements whatsoever and his bathroom OCD seems to be gone. The most exciting thing is we are seeing fewer and fewer rages, and having periods of days with nothing, just my calm sweet boy! Also, he is back to breezing through his math homework and classwork, we are seeing some improvements in his handwriting, and his reading comprehension is coming back up to speed. For the first time ever my son drew what looked somewhat like a person as opposed to a stick figure!! I almost cried when he showed me what he called his "new way of drawing people." We are so thankful right now for the good blessings we are seeing! A week and a half ago, a little girl in his class tested positive for strep and it appeared to have no effect on him! This was a little girl he likes to spend time with and who sits near him in class. So, of course we are very optimistic!!! On another note, we got our BCBS of TX EOB for the IVIG. $25,000. Wow was about all we could say. The meds alone were $11,000 per day. Thank you lord for the small blessing of this being covered (as it should be for every child who needs it!!!) Hope everyone is doing well!!!

Vickie thanks so much for the advice. I will wait a week since we just started the other stuff today. I will check the Omega 3 bottle I bought too. You know when I added yogurt two weeks go because it was suppossed to be good for someone on antibiotics with the active cultures and such I gave him DanActive and did not know about the strep in it. For two days he ate one of those yogurs and I kid you not, he reacted to the strep! He had a lot of factial tics all of a sudden! I didn't give it to him again and the tics stopped. CRAZY! No yogurt now for either of my kids...

what have others experienced with omega 3's. trying to decide if I should add it or not...

I am thinking of making a change to the boys diet. Thinking of starting with eliminating Gluten for a trial period. Could this help with behavior possibly or am I reaching? I am willing to try anything at this point!

Gosh, reading your post makes me think of the my boys...I know how you feel. DH and I used to go to war over whether our boys behavior was normal boys just being boys, or whether some or all of the raging behavior was all part of PANDAS. After finally getting the Cunningham Tests, and hearing other parents on this board talk about the anger, frustration, whining, fit throwing kids and that it seemed fairly consistent for a lot of these children that were dx with PANDAS, we totally had to change how we were dealing with these behaviors and it was not easy. Hang in there. I understand some of the toughest times can come after IVIG. We are 3 wks out of IVIG for our oldest who is 7 and I think I am starting to see a lot more of the sweet boy I remember before he turned 5 1/2 and all of our lives changed forever. One thing we did that may or may not work for you is when we start to see the anger swelling up in him and we know he is going to blow...and I mean blow...or if he already is going ballistic, we give him his eye protection and a hammer and we send him to the creek bed in our back yard to bang rocks. He tears them up!! We tell him he can go out there and get it all out until he feels better. THEN, once he has calmed down, we sit down and we talk about what he did or was doing or about to do that was wrong and we do discipline for the behavior. It is impossible to settle him down during one of his meltdowns though and trying to reason with him or threaten discipline never works. Be patient and continue to seek help on this board. It is a great source for venting and getting some excellent advice. Hope mine helps a little.

your post makes me so sad i just want to reach through the screen and give you a big ol hug! you will survive this. you love your daughter and you will continue to be the best mom ever who will continue to fight for her. vent anytime!!

We have seen the doctor in Plano too and had a great experience! If you still want the info for the doctor in San Antonio please let me know!

Hope he is doing better! What a scary episode!!!!

Lynn, so sorry to hear this . We too are on the other side of IVIG and it has not been easy. I truly feel for what you are going through and wish I could do or say something to make it all better. Stay strong and focused...better time are surely ahead even though it seems like they can't get here fast enough.

Wow this all is very complicated but it sounds like you are on the right track! I will send some positive thoughts your way as you continue on this journey to get treatment for your little boy.

I got the blessed opportunity to visit on the phone with Dr. C today. I sent her an email about my youngest sons elevated CamK and what we should do if anything for him, and I also wanted to ask her about my oldest son being put on penicillin post IVIG 2 weeks ago. She did respond via email and told me when she would be in her office and said she would try and call me. We played some phone tag but finally caught up with each other. She is so nice and so appreciate of the parent support she is getting and all the donations!! We discussed our Immunologist putting DS7 on penicillin post IVIG and she said as long as he does well then that should be fine. We would simply need to address issues as they come up (i.e. change abx if necessary). She even mentioned talking to our Immunologist and that she is indeed coming to San Antonio in February (soonest she could get there) to help his team with the PANDAS protocol they are working on! As for my younger son, she said that his high CamK did indicate activation of neuronal cells. Since he is still responding to immediate abx treatment (PANDAS symptoms improve with 10 day course) then his immune system is still functioning properly. She said it is likely that his CamK was well into the 200's during his strep exacerbation in May, but because he was not in exacerbation when the test was done, it is very likely that his Anti-Neuronal titers had already fallen to normal ranges and that his CamK was falling, yet still obviously very elevated. She concurred with all the doctors we have spoken with that for DS5, we must wait and see and treat promptly with abx and then follow up as necessary. This made me feel significantly better about what we are doing for both of them. She said my oldest sons presentation was pretty classic PANDAS and she asked me to send all their other labwork (urinalysis and blood) to her so she could have in their files. She said they really need this stuff as they are trying to put all the pieces together. I am sure she would like more parents to follow up with what is happening with their kids as it could only help what they are trying to figure out, right? She did confirm what some other Mom's have said, that the elevated AntiD2 is what they see in kids with more movements than OCD. When I told her about DS7's elevated Neurotransmitters (in particular Dopamine) she was adamant I send her the results. Like I said...they are trying to figure it all out so any information they can get is helpful for their study! Lots of information I know, but just wanted to share as I was pretty excited to talk with her!

Now it is a wait and see....anyone else freaking already??

San Antonio, TX, Dr. Anthony Infante, MD, PhD, Christus Santa Rosa Pediatric Blood Disorder and Cancer Unit. AMAZING TEAM...highly recommended...IVIG on DS7 and as of 09/01/2010, developing PANDAS treatment protocol with advice from Dr. Cunningham. Also working on incorporating PEX as an option. Very excited to take on new cases...very interested in learning and helping!

sending cyber hugs and positive healing thoughts your way to you and your dd and family. this is a tough time but you are seeing improvement already! that is so wonderful!! i completely understand the "grieving/depression" thing. i too finally melted down when all was said and done. it was like i had to be the strong one holding it all together while along searching the internet for endless hours night and day; phone calls with no results to many doctors; faxes, emails, and fights. it was almost like IVIG was the finish line (well at least I hope we can be that fortunate) and we have completed the two year marathon and now we can relax a little (or at least for the first time in a long time try too!) it is just hard to let down our guard and think for a moment that they might actually be ok now....

Hi there! I am the very fortunate one whose son's IVIG was approved by BCBSTX. My doctor used Autoimmune Disorder NOS (Not Otherwise Specified). He did mention in the very well written cover letter to BCBS that our son had PANDAS and that strep was his trigger for the immune disorder. The doctor submitted the United Bulletin along with studies about IVIG/PANDAS. I was honestly in shock when the case worker said they approved it. He submitted all his labs too. My son definitely has the peanut allergy effect...PANDAS symptoms with just strep exposure and his titers increase in response as well so it appears to be pretty classic symptoms. He also developed an immune deficiency in one of his subclasses as a result of the disorder. It doesn't look as though he has any other underlying bacterial/viral triggers, so it appeared to be pretty cut and dry PANDAS. Still again, SHOCKED they approved it. If I can help in any way, PLEASE PM me and I will get you any information I can! Cindy