beeskneesmommy

I would keep him home for a few weeks at least. PEX is tough on the system anyway and giving him some time to recover might be a good thing. Happy that you have gotten coverage. You don't by chance have Cigna do you? We have been denied x 2 and we are going into IVig next week out of pocket (ouch).

I am actually presenting my son's symptomology quite clearly and exactly as it is. We have not lived a terrible, chaotic home-life for a long time, although we have in the distant past. There is no set pattern. he has gone for weeks having low symptomology - minor tics and easily tired w/manageable OCD. 2 years ago, he got really bad with a major episode right after a Strep infected T&A w/no sterilizing abx. He has had a saw-toothed journey since, but has most definitely made huge steps forward. I have to really work at it to remember the horrific times when he was really sick. He has not been that bad for well over a year. This week the only thing I see is some minor OCD (doesn't like it when his fingers get sticky when eating finger food), intermittent irritability, and a very persistent breathy exhale tic that started out of the blue last April, along with some pretty mild hyperactivity. I know mild and I know severe because when he gets really hyper, he is literally bouncing off the walls. This does not happen often but is really hard to live with when it does. Re: Lyme, He was on the border, and I mean really on the border with Lyme thru Igenex July 2011. I think there was 1 band that was a Lyme ID (39?). This was igg. He also had a 40 for Bart (again, right on the border) igg. He was on Augmentin and Azithromycin from July 2011 to the present (still on it) and recent long culture tests in May were neg for both. The numbers were never very impressive, from what I gathered. He was always classic Strep:PANDAS - I would see the behavior and take him in for a test, and he would be +, every time. After the had his tonsils out, he left the hospital with a sinus infection which turned into walking pneumonia a month later - he cleared up w/Z-pack and tested + for Myco igg a couple of months later whereas he had not been + previously. We deduced that the walking pneumonia was when the Myco jumped in. Igg has stayed at around 130 but never any Myco IGM. He has, over time, morphed into more PITAND. I am absolutely able to trace his flares to Strep, Pneumonia, Coxsackie, and other "bug" exposure at school. He flares and I almost always get that call 1-3 days later from the principle telling me that something has been present in a class mate. In addition, I have been dealing with elevated Strep titers since March and I am now on my 3rd run of 30 day Augmentin. I definitely notice that he looks great when I am taking the abx. Hmmm. The most recent addition to the "team" has dx him with Sydenham's Chorea, indicating to me that he had Rheumatic Fever. This is a very strong possibility as he had tons of Strep, over and over betw. the ages of 2.5-4, prior to getting the T&A. I am sure that he had undiagnosed Strep several times prior to age 2.5 when I recall the same type of fever and symptoms, but the ped never tested him until I asked them to at age 2.5 when he presented for the 1st time with eye tics after yet another fever. I feel that we have exhausted all lower levels of intervention. I am just fearful of IVig as it is such a big step. I suppose that Lyme could be a possibility, and I am glad to hear that there was no permanent damage when you (LLM) went that route with your son. Sounds like a horrible situation for an extended period of time, however. I have heard of people doing IVig when they know that their kiddo is + for Lyme. Is this contraindicated? Thank you all - Kath

DS6 is scheduled for IVig in a little over a week w/Latimer. Of course, he is doing so well right now as the fates would have it. I am so fearful of this next step, although we have exhausted all other lower levels of ntervention. He presents as a mild case in that he does fine for periods of time (w/some minor tics and chorea, OCD), but every several weeks takes a dive into worse symptomology like more significant OCD, irritability/oppositional behavior and "brain fog". This can last for a couple of weeks before he starts coming out of it and he has had to have steroids this year twice to push him out of it. Here's the thing: we could all live with it the way it is - he would suffer socially as he gets older to some extent, and we would live the roller coaster, hoping that he continues to get better as he gets older. There is no doubt that he has improved greatly since his major episode post T&A in 8/2010. However, he has been on strong abx for 2+ years, daily, which worries me as well. I have little doubt that if we decreased the abx significantly, he would go down hill. SO, please, give me what you got! Am I doing the right thing?? Can IVig actually hurt a kiddo in this situation of more mild presentation? I am living every minute worrying about doing the wrong thing - somehow hurting him or making him sicker w/IVig. I have lost him, and mean really lost him for periods of time in the past, and I have (perhaps irrational) great fear that somehow the IVig will make me lose him again, for good. There is it. My worst fears laid out. Please respond and tell me what you think...

Bravo Mom. I completely understand where you are coming from!

DS6 had severe sinus issues since birth as well. Peds kept saying 'acid reflux' NOT! all of his toddlerhood, he would scream for a wet washcloth throughout the day because his nose was so sore an irritable. When we began w/Dr. B last year, he recognized this as a prob. and gave us Nasonex. It changed our lives. I am not saying that it is that simple for you, but recognizing that sinuses are a big issue, as both Dr. B and Dr. K state (and likely some others as well). SO glad that you found some support with this and that you have as dramatic a change as we did when we started treating the sinusitis!

@AMY, I understand - one of the reasons why we have a "team". I sought a more aggressive abx treatment and although Dr. Elia could not or chose not to prescribe Azith at the time, she was fine with working in conjunction with my "team" and adding in her expertise. I am forever grateful to her for starting us on the right foot and accompanying us thru our journey, while we utilize other doc's expertise as well. I will shout it from the roof top when she gives me the green light to provide her start date and contact info.

Our son started as straight Strep:PANDAS and morphed into PITANDS over time. However, he showed a series of very strong flares when exposed to the Coxackie virus at school several times.

We have a long and strong relationship w/Dr. Elia. She is conservative, which is exactly why she is great to have on our team of specialists. She helps for checks and balances and she cares deeply for the kids. She makes sure to do her best to protect them and help them, while staying within the confines of her comfort level for safety. Almost always, when a medical professional leaves a hospital setting, contracts disallow her to notify her patients or to "take them with her". She is moving on to choose a setting in which she can the most good for her patients. She is most certainly a PANDAS specialist, I believe a neuropsychiatrist. She is a leading expert in the area of plasmapheresis for PANDAS, although she has recently been offering IVig as well. I have great faith in her as a doctor and a human being. I am hoping that her new position will provide her the opportunity to increase potential assistance for the PANDAS community.

Hi everyone - I just got off the phone w/Dr. Elia, formerly of CHOP. Although she does not yet have a date set, she will be practicing at Dupont in DE. I have had several PMs requesting info re: her plans so I thought I would post it. -Kath

I know lots of people that use religious exemption. They cannot question you and they are generally too worried about getting trouble or being non-"PC" to do so, from what I have heard. We currently have a doc note but we may use religion to exempt when our son enters public school next year...

I often hear that kids get worse before they get better after IVig. I know it must be excruciating, but try to hang in there a for a few weeks and keep him as safe from Strep as you can. Was his father medicated with long term abx as well? If he also has Strep issues, it would be a good way to go. I am on Augmentin right now for 30 days (my 3rd run) to mak sure the Strep is knocked out of me prior to my son's 1st IVig in a couple of weeks...

Dr. Latimer does PEX and IVig. One of the foremost PEX - PANDAS docs is Dr. Elia, formerly of CHOP. She has left, but is in process of transitioning to a new practice in or around the Phila. area. They are both treating specialists for my son. Dr. L has a very long wait list so you might want to call right away for an appt.

I highly doubt it, but I would like to know also as we are heading into IVig out of pocket in a couple of weeks d/t Cigna denying twice...

YES! Our son has increased tics, both motor and verbal, when he plays video games. For this reason, we do not have one. He gets computer games or Ipod games very occasionally. The intensity causes the brain to fire up and there is suggestive research that indicates that chemical changes in the brain occur. We ar very careful about them - that being said, our son is just 6, so we have a little more control (although it doesn't always feel like it). Try mixing the games for a day and going out to a museum or getting outside, or just playing board games. See if the tics decrease during this time....

Our son had an extreme and along lasting acute episode d/t T&A while Strep infected. That being said, he did not have a sterilizing run of abx prior to and during the surgery. Dr. T recommends a strong run like Clindomycin or Rifampin to kill off or suppress lurking Strep in the tonsils. Would I do it again? You bet! It was ######, but that was in part because it was not done correctly. I belive that my son would have gotten worse and worse with those icky tonsils in him, and there would be little chance of recovery because the Strep was hiding in there. In addition having a carrier in the family will decrease chances of recovery. If you can get them both taken care of, it may be a good thing...

I would not. I have never heard a PANDAS specialist recommend Flu shots an we have 4 on our team. In a consult w/Dr. K last year, he also recommended against it. Dr. B says no vax or Flu shots. The only time I ever saw my son go into flare and test neg. for Strep, was right after a flu shot (this was in the old days when he still had tonsils. This has changed now, but those were the more "straightforward days"). This was 3 years ago, prior to the H1N1 being included. You have to weigh the risks around your kiddo's exposure setting, area in which you live and susceptibility - as in which is the lesser of 2 evils - the vax or actually getting the flu. I, personally, will not get the shot for my son. In addition, make sure you never get the Flu Mist which is a live vax and could really cause some trouble!

Oh, what a full plate it is! You are at a big turning point in life and it sounds very, very hard. Having a sick child can wreak havoc on a marriage, I know. We never anticipate these hardships when we start out, fresh and young. I wish you all good things and continued strength to get thru it all. Remember that you have made it this far and gained much wisdom and experience at handling life's difficulties. You will get thru it and life will morph into a different, but manageable and finally, a good life. I will be thinking of you, Kath

I know someone who has PANDAS kids who get a topical Strep rash in the groin area. If it persists, you might want to take him in and request a swab...

Looking at IVig very quickly w/Dr. Latimer. Has anyone had it administered in her new office recently? I have not had the best of communication and I am trying to get a picture of the actual room setting, treatment of the patient by staff, etc. I would love to hear from those that are in the know please, as I have another, more expensive choice as well. Thanks!

I am sorry for your trouble. Glad to hear Dr. L seemed to disagree. That did not make a difference for us. We will be going in and paying out of pocket this month. Just cannot wait for Cigna to continue their shennannigans. I hesitated to post this but when I was told about the PEX, that person said "Oh, I better call those people and get them in quickly"? It worried me, for those that are on that track so I stuck my neck out with this.

Hi all. I have posted about Cigna denying us, now for the 2nd time w/ Latimer and a different dx. It is clear from their recent mass denials that we are not likely to get approved. I wanted to put the word out that not only are they denying IVig, but it looks like they are going to cut off Plasmapheresis/PEX as of October 15th, according to a reliable source in a PANDAS specialist's office. I have thought about it for a while and decided to put the word out in case anyone needs to get with it fast. As it is, we will be paying OOP for IVig within the next several weeks.

Thank you

We see Dr. B. who put DS, almost 6, 45 lbs on a combo of Augmentin 3/4 tsp. 2 x D and Azith 1/2 tsp 1 x D last year. After an initial herx, our son responded extremely well and we had normalcy for several months. He has had flares, the most recent of which have been more fruequent, but he responds to other sick kids without actually getting infected. there has been lots of yucky stuff going around since the spring here in Raleigh NC. Overall, he is much better than h was. We have been battling PANDAS/PITAND for several years. He has many days that are close to 100% and is totally on track with learning, development, etc. However, we are heading toward IVig now to try to get the last bit knocked out. Anyway, DS has been on this abx combo for a year now an we get chem screens every 3 months. So far so good, even after a total of 2 years, as prior to this current combo, he was on some sort of daily abx for a year as well. Hope that makes sense, in a hurry. This combo of Augmentin (works well primarily for Strep) and Azith (better for Myco) has changed our lives. I would do it again in a heart beat. Just make sure that you get a good probiotic and have your kiddo take it every day, at least 2 hrs. apart from the abx. Best to you, Kath

Please tell me what is NAC? Thanx

Hi - I would like to ask some questions in a PM. If any one out there is an established patient or parent of one, please let me know. I have some questions...thanks!