MomtoJake

I'll take one too- I too have a 6 year old who when a baby did not use a pacifier, or thumb suck etc. Now one of his PANDAS symptoms is putting everything in his mouth. He has gotten much better as his flare has been subsiding (despite some blips the last few days)- however this week in school he had his fingers in his mouth and a teacher (not his) told him not to do it because his fingers were dirty, which sent him straight to the bathroom to wash his hands five times. Sigh. I have told people straight out his brain is inflamed- like the woman at the lab waiting to get her perfectly behaved kid's blood drawn. She said if her kid acted like mine he would "get what was coming to him" when he got home. So I said "Yeah well his brain is inflamed and he can't help it. Kind of shut her up!

That is great news! I am very happy for all of you.

I am a newcomer to this board since my son's onset in September. I sincerely thank all of you who have provided information and support- it takes time and effort while you are still going through your own struggles and I truly appreciate it. May everyone have a tasty and peaceful day!!!

Just wanted to add that I have taken Melotonin myself occasionally over the years. I always had to stop it due to bad/vivid dreams. The last time I tried it, hoping for a different result, I actually felt very strange immediately, almost "other worldly" as if I was living in the bad dream while awake. Not sure if something like this could be happening with your son. It is a shame because the first time I took this was on a week's beach vacation and it worked like a charm, go the best sleep of my life! As I continued after the vacation the second week, the bad dreams started.

So this past week we saw Dr. Murphy and got our official PANDAS diagnosis. (OCD, Transient TIc Disorder, ADHD- Pandas related also dx with hypotonia and PDD-NOS) I have to say the experience was very intense and beneficial. DS (age 6) was seen by 4 doctors (3 fellows and Dr. M) The appointment lasted almost 4 hours and they had all of DS history and lab info MEMORIZED. Dr. M felt that he initially improved on ABX that were stopped after 1 month, then his older brother came down with strep after that and then we saw an increase in symptoms although DS had negative swabs and cultures. Our first instance of him being a strep detector. Dr. M explained how this worked but I must say I was on overload by that point. He was also seen by an OT. We have many recommendation and labs (mycoplasma etc.) to follow up on and we go back in one month. We are back on antibiotics until we see them again. I feel happy that we have this team on our side!! Now to the weirdest thing ever. After the visit we headed over to Disney World for some much needed R and R for all of us. DS hyperactivity and other symptoms have been out of control so we needed the break without the demands of work and school. We had a great time, but DS was OBVIOUSLY not the same child we took to Disney back in February of 2011. On the last day we decided to hit the pool before we checked out of the hotel. DS had a fabulous time swimming and going down a water slide. Then he got REALLY cold, blue lips, the whole 9 yards. None of the other kids in the pool were cold at all. We got him out, warmed him up, got him dressed and then we got in the car to drive home. It was immediately apparent that he had changed. I am telling you this boy was completely normal!!!!! He had gone from extreme hyperactivity, choieform movements, having difficulty completing spoken thoughts, chewing on his shirt constantly, etc to being calm, well spoken with an actual dramatic improvement in sentence structure, focused and not chewing on his shirt at all. It lasted for 3 hours and then he gradually went back to the way he was before he got out of the pool. SO STRANGE!! Anybody ever experience anything similar????

Thanks Arial95 and everyone!! I will call my Ped for the ABX. Thanks for the reminder about writing out questions, I probably would have forgotten to do it since things are so crazy right now. I also forgot to mention the extreme separation anxiety, so I have to carve some time out to write them down!! I guess you know how that is! Regarding the labs- do they do them at the time of the appointment on site or give you lab orders to take to your regular lab? I want to prepare DS if he is going to get poked. ABX or no they will see a full PANDAS show when it comes time for that. Thanks again, I really feel good about this appointment after reading that they will have studied my son's history etc. prior to the appointment.

My DS (recent onset PANDAS/PANS dx by pediatrician) is scheduled to see Dr. M in Tampa on Nov. 16. He was on a month of Augmentin ES and it helped a lot. It did not get him back to where he was, but the most severe OCD and tics went away. He stopped ABX on Oct. 21. He has started to go downhill and fast. I don't know if it is a new exacerbation or just that he needs to be on ABX for a longer period. He has also presented with new physical symptoms (swollen lips/angioedema) and has had a blood test for common allergens (results not back yet). I had him vigorously swabbed Thursday and a culture sent out- both negative. I suspect he is PANS. Now on to my ??. 1. Should I push for more ABX at this time, or let Dr. M and her team see him as he is now.? I hate to see him suffer for another week if the ABX can be helpful, but if it would help in his DX, then maybe keep him off. I feel like a horrible mom just thinking it. 2. For those of you that have seen your child come back from ABX and then regress again, is it common to see new OCD behaviors that weren't present in the first exacerbation as well as some that were? Or see behaviors in the 2nd exacerbation that are so much more severe than they were in the first, such as emotional lability/severe over-reactions to almost everything, and hyperactivity and clumsiness? 3. Any important need to know info anyone can tell me about what to expect at my appointment with Dr. M? You can PM me if you want to. I thank all of you so much. This forum has been an absolute sanity saver for me!!!!!!!!!!!!!

tampicc- thanks for the info, I looked at Kawasaki and he does not have any other symptoms, but I will stay vigilant. 911RN--- I googled it. Oh my. It does look like angioedema and it did NOT respond to antihistamines and he is not still on the augmentin. It does not look like an allergic reaction here. From what I could find on hereditary and autoimmune angioedema it can be pretty scary, especially if it attacks the larynx. I have an appointment with the Ped tomorrow. Here we go again. My DH said we need to get a big white board like Dr. "House" and start listing all his symptoms. Thank you so much for the info!

As background, My 6 year old DS had his onset of PANS symptoms on Sept 10. (Severe OCD, tics, hyperactivity, fears) and after 1 month of Augmentin ES he is improved. Still fears, hyperactivity and some other issues. In this process he has also been DX with Celiac Disease. We have an appointment with Dr. M in a couple of weeks. Now on to the current issue. Twice in the last two weeks his upper lip has swollen pretty dramatically- looked like an allergic reaction, but he had not eaten any new food, or any other food for that matter, or had not come in contact with anything new that we know of. I did some research and it seems that this swelling can be an auto immune reaction of some sort. Has anyone else had any experience with this? I gave bendryl type meds both times and the swelling did not go down. It does go down mostly on its own overnight. Any thoughts welcome. DH and I think it is just another piece to this puzzle. Thanks guys!

My DS had his first onset on PANDAS/PANS symptoms on Sept 10 of this year. (Severe OCD, tics, fears and some hyperactivity) He did one month of Augmentin ES and his symptoms improved very much, however we are left with severe hyperactivity, impulsivity and non stop talking and questioning. Oh and when Trick or Treating, he fell down multiple times and had seemingly no awareness of danger-DH and I were worn out! We will start ABX again-his ped is willing to give more, but I don't think this is our entire answer. We have an appointment with Dr. M. in a couple of weeks and I am so anxious to hear what she has to say. So, no help here other than to say I FEEL YOUR PAIN!!!

HI Stephanie! I wish I could join you! I will be in Tampa on Nov. 16 for our appointment with Dr. Murphy, so I will miss it by a couple of days. I really wanted to go to the NAA conf, but it is just not going to work this year. I am sending you a PM to add my info to your list of Florida PANDAS parents contacts. Thanks!!!

HI there! I just wanted to throw something out there concerning the red cheeks, low blood pressure, joint pain symptoms. This May, my DH had to be taken by ambulance to the ER after gastric pain and passing out- blood pressure was very very low. ER stabalized him and sent him home with no diagnosis. He then developed severe, debilitating joint pain. A rhuemetologist ran some tests and it was Human Parvo Virus or the common childhood Fifth's Disease. He had a severe auto immune reaction to this virus! In kids it is also called "slapped cheeks" because of the tell-tale rash on the cheeks and sometimes continuing down the trunk. In the following weeks of the summer all of us fought strep including my DS, then DS showed the symptoms of Human Parvo Virus- bright red cheeks etc. This plus undiagnosed Celiac disease created the perfect storm for my DS sudden onset of PANDAS symptoms. My DH recovered from the Parvo, but his immune system is ok. In your DS, it is not. Just a thought- a simple blood test could confirm or deny. On another note, your discussion of methylation defects hit home for me. When my DS was younger he was on a DAN protocol in part for methylation issues. He did so well and improved so much that he was taken off the supplements eventually. I have a feeling that this is yet another contributing factor for our recent issues. We never did YASKO, but perhaps I should put that on my list to look into. Another poster in this thread talked about peeling away things one at a time- This makes a lot of sense to me and I think it is a good way to find focus! I was feeling a bit overwhelmed, as I know you must be. Hang in there!

No, he is only on Augmentin (we are at 2 weeks of at least a month trial) and Curcumin as an anti inflammatory. His onset was this Sept 10, so we are still in the diagnostic process. He is much improved on the ABX tho!

Yep, my DS is 5 so everyone thought it was very cute! Won't be that cute for long. I think I can easily and gently redirect it for the next performance, now that I know it is coming. It was so out of the blue. In the rehearsal he was fine. I want to be careful to keep him feeling good about himself but to curb the behaviors. He was so darn proud of himself, lol. He looked like a 5 year old Jim Carrey!! Maybe there is a future there!!

Has anyone else seen lack of inhibition as a symptom in their PANDAS kids? My DS, who has always been pretty reserved "on stage" when singing in school programs etc, gave QUITE the performance in the children's choir at church on Sunday. He did a wild dance through a whole song where all the other kids were standing with their hands nicely folded. Now, to his credit, it was a fast song with a great beat This was in front of about 300 people. Oh and by the way, dancing is not one of his talents, lol. On the way out of church he was asking people if they were impressed.....It was just bizarre and unlike him. I videoed it and showed my husband and he agreed that it was not "cute" it was really strange. It was funny though, and on day 23 of PANDAS, I needed a good laugh! It was either laugh or cry!

Thanks! Yes, my Ped is awesome!!

My DS had his sudden onset on Sept 10- We are now 2 weeks into ABX Augmenten ES 600 mg twice daily. We saw dramatic results in just a few days! Tics gone and OCD symptoms reduced. At this point he still definitely has symptoms, but not as intense as before ABX. His blood work came back with strep titers NOT elevated despite confirmed strep rapid test in late July. HIs Ped still feels it is PANDAS or PANDAX and says to stay on ABX for at least 1 month. What did come back positive was his Celiac Panel. So we are making the adjustment to gluten free. Ped feels this is a definite contributor to his symptoms. Possibly the "Perfect Storm" of issues this summer, Strep, Sinus, Fifth's, etc on top of celiac???? Has anyone's LO also tested positive for Celiac? On another note we got an appointment with Dr. Murphy in November! A long wait, but from what I heard it will be worth the wait!

Hi, I just wanted to say hang in there, and to offer you support and an ear. Not too much advice here since we are only on day 13 of our nightmare. However we are also on day 3 of a 6 week course of ABX so I feel better- feel like we are moving in the right direction. I saw the article linked below on this forum and faxed it to my pediatrician. It really help to get my DS the ABX for the 6 week period instead of 10 days or 2 weeks. His rapid strep was negative but she decided to treat anyway while we wait for the other tests. I hope the link works, I am a newbie on this forum. If not look for a thread titled something like: IOCDF weighs in.... http://www.ocfoundat...79&terms=pandas

Finally got the ABX for DS! His ped gave him Augmentin ES for 6 weeks. He gets 1 teaspoon every 12 hours, but I don't know exactly how much that that is. The label says: 600mg/5ML Susp 75 ML Does this mean he is getting 1200 mg per day? Is that an appropriate dose? DS is almost 6 and is 35 pounds. Thanks in advance for the help. I am thrilled that she gave it for 6 weeks!

Sometimes you have to vent, even if it turns into a ramble. My whole thought process feels like one long ramble right now, so your post made perfect sense! And yes, there are much worse things out there, but when it is your own it doesn't matter. I am thankful that it is not worse for, but also I feel bad for DS- life is hard enough without this. I don't care what I personally have to go through, I just want him to be happy and productive, as I am sure you want for your kids. It's just scary. But like you said, just keep on keepin on. What else to do? Hang in there, your kids are lucky to have you

Thank you everyone for your insights-@ airial95- when my son was very young right after his regression he seemed worse on ABX-- in the last couple of years I have noticed that he is completely normal on ABX. My son still has some quirks other wise, but he is pretty typical. Now I am noticing increased autism-like symptoms that had diminished before-- more toe walking, difficulties with narrative language. He told me yesterday that he just "couldn't say the words". He also had his first tic and is still doing it today but only occasionally. He is turning one side of his mouth down and doing strange gyrations. It seems that new things are popping up everyday, but sometimes he only does that particular "thing" once. For example, this AM he refused to touch anything in the bathroom with his palms and fingers. He bent his hands so that he could turn off the water without using those parts of his hands and then used my hand to turn off the light. But tonight it is ok to use his hands normally in that same bathroom. Anybody have a similar experience?? On the upside, my ped is giving him Augmentin- don't know how much or for how long- she has not called it in yet, but its a start. Labs are not back yet. Hopefully we will have abx in the AM. I also mentioned the article that someone posted here earlier from the IOCDF and she wanted me to fax it to her so I did. Also, I have an appointment with Dr. Murphy in November. Quite a wait, but I also asked to be put on the list to call if there is a cancellation. It has been a rough week and a half. My stomach has been in knots, I can't sleep and I have a low grade headache that won't go away. Somehow though tonight I feel better having accomplished a couple of things today. Thanks for being there guys!!! It helps to have you all to talk to!!

Thank you JJmom for all of the info! I will print this out so that when I talk with my ped tomorrow I can be ready. He did have Augmentin in the summer for his last Strep infection, but it was only for 10 days. Hopefully the ped will give it to him for the month. He can't do Omnicef and that whole class of ABX because he has a Carnitine Deficiency and it bottoms it out. Thanks again and wish me luck tomorrow!!

His rapid test was negative-- I don't see how it could be positive since the nurse barely got the swab in DS mouth!! I plan to have him on ABX one way or another by Monday. I do think the ped. will come around, but we'll see. Given everything, I can't see how he doesn't have PANDAS or some form of PITAND. As him Mom I am his first doctor!

Thanks everyone for the advice and support! Some of the blood work should be back to his Ped by Monday. I will talk to her then about the ABX. If she says no I have another way to get them though another doctor. Which ABX do you think I should ask him for and for how long?? I also will call Dr. Murphy's office Monday. Someone had mentioned that maybe his autism was really PANDAS. Thinking back I realized something very interesting. I remember that when he was very young if he had to be on ABX his autism symptoms got much worse- one time he started licking the sofa from top to bottom. As he got older I started realizing that his autism symptoms actually got better on ABX as well as when he had a fever. Food for thought!