bmom

Dr. K and a few doctors have also considered PANDAS to be ADEM- brain inflammation. I have researched it and it sounds like there is a lot to consider there. I think that they are closely related.

My son too. He is 83 lbs. Of course he did get strep on that same dosage!

Update on this: Dr. K suggested that he get tested for strep although he was on Augmentin. He said up it to full dose. He tested positive on the swab as did I, his sister, and dad! Ugh! No symptoms for any of us. He did full dose zith and some full dose Augmentin and things are calming down although he still has short periods of it.

I am so sorry. It is sure disappointing when you were hanging your hopes.... Perhaps the amount will help. I have thought that perhaps these IVIG kids should have a few "tune ups" post IVIG. Please keep us posted.

I would suggest getting his ASO and anti DNASE tested again just to see. Although, with my PANDAS son, the initial starting of it was strep, but after that any illness set him off so I wouldn't rule out PANDAS even if strep is negative. I think the PANDAS situation is worth at least checking into. Fevers especially cause problems with my son.

Worried Dad, Do you think you will move on to a second IVIG? Will insurance cover it if you do it locally? This whole thing is a maze even with IVIG!

I am wondering if it is "turning back the pages". It is that it came on a couple of weeks ago (3) with a day here or there and now it is steady. I emailed Dr. K. He is on antibiotic (Augmentin) and I am considering upping it for a few days to see if it will settle down. My daughter was sick this last week with a cold so perhaps that kicked his system up some. Who knows. Thanks for encouragement. These darn tics are hard even with the IVIG, but I have seen some improvement (80%) or so since IVIG. I am hoping for more as time passes (praying), but he is so much better. He still has separation anxiety at bed and some light sensitivity that provokes tics although it is better. His daytime fears and separation anxiety has ceased.

Bumping for some more imput? Please? The baths are not helping anymore and he is now having trouble in the day too. The drinking water seems to make it worse. First, I am curious if anyone who is not PANDAS does this. And second... What to do about it? Anyone?

My son had IVIG 10.5 weeks ago. Things had progressively gotten better with the tics. But now it seems that we are battling with the need to urinate. Prior to IVIG he had this for one night about 4 times. It would be stopped by a warm bath. He never had it during the day. Recently it seems to be nightly and some day time. It is not stopped by bath now. My question is, for PANDAS moms that have experienced this, what do you do? He is up til late hours, hates it and is now having trouble with it during school. What is this? A tic? Do you think I should have him checked for strep? He says he is not sick, but this has just recently come on and worsened and I dont know what to do about it. Any ideas? Do any of your children do this?

My son has had about 9 nights over the last 2 years where he gets this need to urinate before bed (going back and forth to the toilet). I realize that this is usually associated with PANDAS, but I was wondering if anyone who has a child with tics/ tourettes experiences this too? Is it only in PANDAS children? Do any of your children who are not PANDAS do this? Just curious and does anyone have insight into what this is all about? A bladder tic? Bacteria in the bladder? It usually only lasts one night and is stopped by getting in the bath.

Thanks for the encouragement Worried Dad. Has your son stopped the screaming tic? Does he have any tics left or is he tic free now? I am sooo glad to hear the 75% improvement. I do believe he is improving a little at a time. Amy- my son has never complained of being tired and then after I posted later in the day, he said something about being tired at school. Hmm... he doesnt really seem tired though! He has always stayed in school. I took him out for 2 weeks in 2nd grade when the tics first started and were bad 1 1/2 yrs. ago. I have him stay home off and on because of tics here and there, but his attitude has always been really good-no problems, but tics, some anxiety, and night time separation. Well, a little daytime, but not about going to school. Most of the stuff, his friends dont even realize.

We are just slightly over 1 month post IVIG (4 1/2 weeks). I haven't noticed fatigue. My sons symptoms are somewhat better, but only about 40%. He is 10 and Dr. K said 8 -12 weeks for him and that tics are the most stubborn to go-my sons main symptom. He still has light sensitivity that worsens tics and nighttime separation issues. Hoping that he will continue to improve over the next couple of weeks!!! Glad to hear all is well over on your end.

Pamela Kay, I was thinking about your posts a few days ago and wondering how your daughter was? Did the cough go away that you were concerned was a tic? Just curious as I felt the sadness in your posts!

Abbe, Was the basketball court an indoor one with bright lights? Bright lights have always been a trigger for my son and basketball courts seem to be a trigger for him. Some of them have flourescent lights. If this is the case, watch to see if maybe he has photosensitivity that effect his tics-places like stores, basketball courts, even bright sunlight, video games, tv, etc. can cause an increase in my son.

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's son seems to be improving at 12. Also, we just returned from Dr. K. His oldest IVIG patient (male) was 13.5. I asked him if it was successful and he said yes. It took longer to take effect though. He said that is the pattern-older=longer conversion time. I believe that is his oldest and believes that puberty is a biggie. Although it can take awhile to actually complete going through puberty (I believe).

Pat, I am not sure what the answer is. I know when I try too many things at once, I always get confused as to what might be causing it. I would consider letting IVIG take its time over the next few weeks. We are meeting with Dr. K on Thurs. so I know he should be back soon. I am going to ask him many questions and a lot about what exactly "turning the pages" looks like. I can ask him anything else so let me know if you want me to ask him other things. I do think that it seems that IVIG patients seem to have some behaviors in the 3-5 week periods. At least from Diana, another mom who I have heard from and possibly you and "Worried Dad". Perhaps he will post and update what is going on. Diana's son is in week 6 and seems to be smooth sailing this past week. Hope things settle soon. Please keep posting and letting me me know what is going on. I am keeping track of the 4 children (Gaby included to see if there is a pattern) since my son will be getting IVIG on Fri. and Sat. Thanks so much!!

Thank you so much both of you for posting your experiences. It just gives me an idea of what may possibly go on. I am curious about these turning of the pages. Do they last a full week? I guess I thought an hour here and there and then gone. Like, "oh, you again" and then poof gone. Hmm.. wishful thinking. I do believe that if they are old behaviors, there is healing going on. I would be more nervous of the not so old behaviors or new ones. The old ones I would actually take as a good sign.

Pat, Thanks for the update. I am sorry to hear that Gaby is having trouble. What do you think is going on? Is it turning back the pages? Does it last several days or do you think it is something else? Please let me know what Dr. K thinks too. We are leaving for Chicago in a little over a week. What about the detox? Could that be causing problems? Are you still doing it?

That is great to hear. Did you have the IGG or IGE test done on her?

EAMmom and Pmom, You are all thinking the same as I have over the last couple of months. We had a phone consult with Dr. K regarding IVIG and he said' "Look at your son now and decide if nothing in his symptoms changes, would he be ok at 20?" That helped us to make the decision to move forward with IVIG. His tics are not horrible and would probably be ok if nothing were to change. But when he watches tv they are bad and so he has not watched tv for several months as they last for a week. so, we are moving forward. I also thought about the age thing as he is turning 10 next week and want to be in the youngest age range. My last thought is what if we dont do it and he is ok now, but has a bad episode at say 13? Then what? He is past the effective age. So, who knows. We are praying it is our answer. 3 weeks to go......

Greg, I was just wondering, when you say you have noticed a huge difference since removing his tonsils, could you tell me what? In the negative? Thank you.

Chemar, You say you used ALA as the last step in chelation? Was the first the Chorella? and how long did your son do that? Was that the only two steps that your son did to chelate?

I guess my thinking on IVIG and Mercury was if your immune system is stronger, would it possibly start getting rid of some of that stuff?

Yeah, yeah, yeah! I am soooo happy to hear that and I am keeping you guys in my thoughts. I have a question for you worried dad- ok 2 questions. First, I was reading some of your posts, and my son has extreme light sensitivity since this exasperation (7 months). The tv, computer, and sometimes sunlight send his tics into major mode. Has the IVIG helped your sons sensory issues-light mainly? Question 2- I am frantically worrying about my daughter lately too. Do any of your other 2 boys show any PANDAS problems. Thank you. My son is also considered in the older range for IVIG (although he will only be turning 10 in a few weeks. ) so I am somewhat watching your son more closely to see the progress.