bmom

I was just wondering if PEX will help with Pitandas a well. I know my son started with PANDAS, but I believe it has moved to PITANDAS. Does PEX remove only strep antibodies or the mis behaving ones in general?

That's great! I will pray that things continue to improve and you will turn out like Sammy. I know it was several months total to say he was back. You guys could really use a break from all of this.

Worried Dad, I just read more of your posts and am so thankful for your sons recent improvements. I actually was thinking of you guys when I read the "Saving Sammy" book. The things in there sometimes reminded me of your son. I have one question. How long did it take to see improvements with the higher dose Augmentin? Was it immediate or day 10? Thanks!

Do you guys pay out of pocket and have the Cunningham test run frequently? Just curious. My son is having some slips lately and I was thinking of trying to set up a phone consult with Dr. Latimer to discuss PEX vs. IVIG. Anyone have info. on her thoughts on PEX for children that present PANDAS with mainly tics?

Worried Dad, I was just curious if it is regular Augmentin. When I read the "Saving Sammy" book, her son was on what she said was Augmentin XR (I think it is extended release). Does it have to be that to go to high levels? I currently have my son on 1000 mg for a few weeks- 500 a.m. and 500 p.m. I was just wondering if I need to ask Dr. K to switch it to extended. Have you tried other antibiotics? Like Zithromax? if so, did he do any better? What about steroid burst?

We live in northern Nevada. I was considering a phone consult with Dr. Latimer. Does she do that? Is the immune testing to get IVIG paid for? Is that all that it is good for? Can they actually help immune issues? We did do 5 weeks Azith prior to IVIG that did not help. Considering steroid burst if things continue. I just worry as it sometimes seems to make tics worse and I just want to "Do no harm!" At over $10,000 cost for IVIG, we do not take it lightly. But of course would do it again if needed. I would just love to know for sure it would help.

Just wanted to add my 2 cents: I have not read everyone's reply to this so sorry if I am repeating what someone has said. I asked Dr. K about my sons low titer levels. He basically said what Buster said. He believes that my son has had this a long time. Since he was close to 3. I do too as he has had bouts of tics and things since then and also several cases of strep around that time. He thinks that when kids have strep and PANDAS that long, their immune system quits mounting a response. Makes sense. Also, I have to wonder about the episodic course. I have always thought if a child gets hits hard enough or enough times (even if you don't realize he has had minor episodes prior) could his/her baseline change to continued symptoms? Saving Sammy child had some doctors say he did not have PANDAS due to continued symptoms, not episodic and yet he did have PANDAS.

He is on daily 500 mg. Augmentin per Dr. K. He used to be on 250 mg daily, but he got strep on that (positive on rapid and culture) so it was upped to 500 mg. daily. He is almost 11 and close to 100 lbs (95 I think). When symptoms increase, I either up it to 1000 mg of Augmentin for 10-14 days or sometimes can get the local doctor to prescribe a round of Azith. The Azith is just my own theory as to maybe it helps, but the local doctor will only prescribe it occasionally. His Augmentin prescribtion if for 1000 mg daily so I can up it as needed. I also add Advil when he has trouble. Do you think Augmentin is the best choice? I do not want to go to Azith daily unless he continues to have trouble for a longer period as I would like to keep him on lowest dosage of lowest antibiotic possible. Although I do hate when he has symptoms! The tics have always been his main symptom, but suffers from frequent urination periodically (not this time around except one night during flu) and constant night time separation that has never resolved even after IVIG. Prior to IVIG separation was worse and sometimes in the day and fears.

thanks, yes he is on daily supplements of: Daily Multi high quality vitamin, 1000 mg of vit c, 200 IU of vit. E, 2 coromega fish oils, probiotic, 50 mg vit. B. We used to have him on Mag. and then mag taurate. Suprisingly, this has never seemed to help in the past. We also follow a pretty good diet with min. dairy.

It seems that we are back on a roller coaster of symptoms and I was hoping to get some opinions. We had IVIG close to a year ago. Things have been pretty good over that year even when we all got strep. Everytime we had an increase of symptoms, we did a full dose round of Augmentin on my son and things seemed to settle down to his base line which was little to no tics and night time separation. These symptoms were not bad and we were fine. His usual dose of antibiotic is 500 mg a day of Augmentin. When things act up, we go to 1000 mg of Augmentin for 10 - 14 days and then back down to usual dose. In August, he lost 2 teeth and right after had a tooth cleaning. Things got bad again, and we did full dose. Things slowly settled with some minor ticcing in Augut. September hit and we seem to be on a roller coaster of symptoms. He started back up with around 3 tics continuously. I took him for a strep culture which was negative. He didn't seem to be sick, so I couldn't put my finger on why he was having problems. We got a full round of Azith in case and did that. That seems to have gotten things back to baseline, but only for a few days. 4 days after full strength Azith ended, he was back to ticcing. I upped the Augmentin, which didn't seem to settle things and then he got the H1N1 flu while on full dose. I figured that the symptoms were due to the flu and he just started having problems a few days before. I continued with full dose for 10 days and things went back to base line, flu gone and down to 500 mg Augmentin. All was well for 6 days post full strenght (approx. 8 days past flu symptoms). Now we are back to ticcing for the last 2 days. He is showing no signs of sickness currently and it feels like we are back to roller coaster of symptoms with barely anytime of base line. I emailed Dr. K with several questions. 1. If he is reacting to flu, does this mean IVIG is not working? 2. We are almost at 1 year post IVIG and will healing continue or is this it? His response was "Let's just hope it is a bump in the road and see what happens in the next few weeks" My question is on the antibiotic. I upped it again yesterday. I do not know if upping it is helping or hurting things currently. Thoughts? Do I keep him on full dose for a longer period of time? Is 1000 mg of Augmentin ok? I do 500 mg in the morning and 500 mg. in the evening 12 hours a part. We have never done a steroid burst as it somewhat frightens me with the adverse responses. Any thoughts would be helpful. I do think this time of year is difficult for him as this is the time we resorted to IVIG last year, but shouldn't the antibiotics and IVIG be providing him with some sort of buffer? Thanks all that has thoughts!

Just wanted to note about the dog question. During this whole PANDAS process, a lot of the time my dog started to gag a lot. I took him to the vet and the vet checked him out. They said he had inflammation in his throat, but did not know what from. The vet said he could not have strep, but I checked with another vet and they said he could. One PANDAS doctor we met with told us to check the dog. Soon after the visit to the vet, our dog passed away from old age. I still wonder if he many have been a carrier. We have had strep since too, so who knows.

What kind of doctor is he? Does he do IVIG? What does PAMF stand for? Thanks!

Thanks EAMom, I think I remember you said that all turned out normal. Do you have faith that he read all the results right?

Nope, not yet. Working on it! He did recently have symptoms (tics, and urination frequency)-3 days later very sick and tested positive for swine flu. Flu done and all is back to no PANDAS symptoms. I just wish the IVIG would have kicked all symptoms even with illness!

OK, again,think I know the answer (you would think I was an amatuer around here!) but symptoms getting worse during illness is very "PANDAS" like?

I have a question on this one. I should know, and I think I do but want to find out others thoughts. If it's tourettes, do children get worse with illness? Or just PANDAS kids?

EAMom, I would like to pursue the immulogical work up. What tests do they do? Did the immunologist that you saw do these tests? Did you like him? We are fairly close so we could likely go to him. I would like to have my son tested as I think he has some immulogical issues.

In November, my son will be 1 year post IVIG. I consider the IVIG "somewhat successful" and I am glad we did it, yet he is not symptom free. When he did the IVIG, he was a few weeks past his 10th bday. His main symptoms: Tics, Separation anxiety (mainly at night, but moving into day), and urination issues, and light sensitivity that invoked tics. A few weeks after the IVIG he was pretty close to symptom free. We remained that way for approx. 6 months. He was much improved. Since July, we have been having some bumps in the road. July, he lost 2 teeth and started with some tics again. A round of full dose Augmentin calmed things down. Then he has been sick off and on the last month with tics coming and going. He did a full round of Azith and is now on full dose Augmentin. The problem is that these illnesses are likely viral and so things are lingering. He is just getting over a bad cold where tics and night time urination reared its ugly head again, but seem to be calming down as he improves. My hope was that he could be symptom free post IVIG, and at this point I can say that is not the story. Yet, it has kept things under control and leveled out the symptoms when they were clearly going down hilll prior. I am going to talk to Dr. K soon and see if this is likely the way things will go or if improvement will still occur. His nighttime separation never seemed to be relieved and we have tried many things to get him to sleep by himself. He seems to be totally fearful and I have not seen it improved. That is not the worst symptom though and we are still hoping he can get over it. At this point things are ok. There are times when he is mainly symptom free (except the night time separation) and that brings some peace. I would love to be over this whole PANDAS thing and keep hoping that will occur. But symptoms are livable and manageable. I would love to tell you all that it was 100% clear though. Good luck to you all and I am glad Worried Dad posted as I think about his son and wonder how things are!

Sounds very familar! Seems unfair that with everything else going on we have to deal with marital problems too! When my son is doing fine, things ease up. I hope that it is the same for you too!

That is wonderful to hear. I have 2 questions and I apologize if you have answered these before. Although I used to be an avid reader, I am more hit and miss these days. 1. As you are a physician, what made you choose PEX over IVIG? and 2. What was the total bill PEX? Ok, a couple more. Did insurance cover any and any negative side effects? Thanks!!!

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!!!

I would like to send my son's sample in, but does timing matter? Does he need to be in an PANDS episode? He has been having some minimal symptoms, but not like before IVIG. Should I send it in now? Would the IVIG affect the test results?

I don't know, but wanted to tell my sons experience. Prior to starting continuous antibiotics, when he would do a round of antibiotics things would get much worse on day one and then much, much better day 2-10. This was his pattern and I could not figure out why. We finally got a doc. to prescribe long term antibiotics and we do not have the stop start problems, but I wanted to let you know that it was the same with my son for some reason.

I just wanted you to know that I feel your struggle with this question as I struggle with the difference as well. My son started with just the tics, but progressed into separation and urination issues after awhile. His dad also has minor tics. I dont know the answer to your question, but I am not sure I would rule out PANDAS based on the dad's tics and tics only. It could be that your daughter could have a biological tendency towards tics and the PANDAS brought it out which I believe was my sons situation although I am still not 100% sure on that.

We use the Coromega too and both my children like them. My daughter is 4 and takes them great and sometimes asks for 2. They have a new flavor out that is a chocolate orange. My kids say it tastes like a toostie roll. They will take and like the lime, but not as much as the orange or orange chocolate. One question I have for everyone is the dosage. I give my 10 year old 2 coromego and 4 year old one. Is that enough? Should I do more?