thereishope

PANDAS or not, getting back into the routine of school (esp when some bad memories are still present in the child's mind) is hard. So, if he has a couple bad days, don't freak out. Just take it slow and maybe have some nice rewards or treats waiting for him at the end of the day. Let us know how it goes and try not to sit on the couch all day with phone in hand waiting for a call from the school. You'll drive yourself crazy.

If you want to see a specialist to make sure nothing is physically wrong with the eye or optic nerve, you can see an opthamologist. They will do a very complete exam.

I am going to look at the sore throat from different angles since I freak out with every cough or sore throat my kids or I have. Perhaps the ever and sore throat are not related. Is she drinking enough fluids? Sleeping with her mouth open? Do you have a humidifier you can run for a few nights? As for the fever, I've read that fevers are associated with IVIG. Out of curiosity, did your daughter have a strep test prior to IVIG? I know she had an onset of symptoms that were gone for awile and that's what prompted you to do IVIG.

.

Did he say if the spots were new or if they have been there for awhile and scared to tell you? Some parents have said their children experienced floaters. My son, at one time, freaked out that he was seeing bugs on him. He was screaming, hitting himself, etc. to this day, I don't know what he saw. Whether they were floaters he interpeted to be bugs, hallucinations, etc. Luckily, it happened only once or twice and never again.

So, can a child have a pre-existing disorder (even OCD) but when it becomes horribly extreme overnight along with other symptoms and there is a strep infection, that is PANDAS, correct? If that is the case, then once that child's PANDAS symptoms go into remission, some OCD might remain from the pre-existing disorder. I guess to sum up my question, can a PANDAS child have co-morbid disorders? I thought so, but some on here have disagreed with me. Also, the improvement may begin in 2-5 days but it doesn't mean the child will be back to their baseline in 2-5 days. My son has a pattern where he will continue to worsen for an average 3 days after starting abx, then I start to see some improvement. Overall, the first 2 exacerbations took a couple months to resolve and the third one took about 5 months to get back to baseline.

Thank you for the update! I'm glad things are going well!

I'm glad you're back. Can everyone stop confusing me now?! PANDAS is enough of a soap opera

When is the deadline?

Yes, this has been visited on here before.I tested negative for group B strep while pregnant. Also, I, nor any family members, were sick at time of delivery or for the time leading up to delivery. Personally, I think there are multiple causes for people to be susceptible to this disorder. Perhaps for some, it is soley the strain and age, for some it is genetic, maybe for some it being Group B + at time of delivery,etc. For most, it is a mix of many bad (for lack of a better word) things happenning at once. Things that are a cocktail for disaster.

Welcome. May I ask the timeline in which you saw all the disorders surface? I'll give my son as an example...always had a severe speech disorder, but the OCD, ADD, ODD, rages, all came on at once. Perhaps he always had slight sensory (as is common with speech disorders) but nothing to the point of concern. However, when PANDAS surfaces, the sensory is extreme.

Mycro P has gotten a lot of attention here lately. It seems some cases of PANDAS may actually be caused by having Mycro P as the original trigger. Granted, it would them fall into the PITANDS catagory more, but I still group them together. That's why it has been talked about here more. A few recently have had blood tests show their child have/had it. Some w/o symptoms. Then more have started to mention a hacking cough (w/o the mention of why they have the cough). My non-PANDAS son was dx with it a couple weeks ago and, hence, why I am paranoid. If the child has PANDAS with the original trigger of strep, they could then begin to have PANDAS symptoms surface with other infections. As is the case with my PANDAS son. Whether they be viruses, allergies, sinus infection, the list goes on. So, honestly, I would not be surprised if a PANDAS child contracted Mycro P and had a PANDAS exacerbation as a result of it. What med did she go on and for how long? How are her PANDAS symptoms now? Did they improve in the weeks following the Mycro P infection or have they not gotten better? Is she currently on any abx?

fyi....Someone once posted not to split Augmentin in half to take it (cutting the pill in half). I don't know if you were thinking about doing that with the swallowing issue. May I ask why you can't swallow them (or have you posted that before)? My Mom couldn't either due to some autoimmune problems that caused inflammation that wouldn't allow her to swallow correctly. I know with some anti pain meds she tried to chew the pill and it ended up burning her vocal cords or esophogus. Luckily, it was temp.

Madeleine-Cunningham@ouhsc.edu

From what I understand, Zith is often given for Mycroplasma P. Biaxin is also used for Mycro P and is a "bigger gun" for it. As for a month long use, I'd compare it to PANDAS and strep. Some kids need to be on an ab for strep for a month to see full effect. As for strep....Zith and Augmentin seem to be the most successful here. Thise taking long term Augmentin, may have switched to Augmentin XR. I think the ratio is different and it is easier on the body? I am not really sure. But there' s been threads on that you can look up. I have seen some on here who are both on an ab like Augmentin and an ab like Zith or Biaxin at the same time. How are you with possible yeast overgrowth? I think you had issues with that in the past, correct? As for overall mental health, tics getting better, and PANDAS symptoms improving, that would take longer than what it takes for any infection to erradicate. Once the infection is gone, is when the healing can finally begin.

If he hasn't had it for awhile, his reaction to it might be strong. Does he only get hyper from it?

CBT for a 2 year old? Maybe someone else has done CBT with someone that young can chime in, but the psychologist didn't even attempt CBT with my then 5 year old because after one appt she saw it wasn't right for him. My son did well with ERP therapy I pretty much did on my own with him. What you can do is call the children's hospital, they'll ask for why you want an appt and they willl match him up with a therapist who is used to working with childrne that young. It could be a few months wait time. With my son's psychoogist, I actaully met alone with her every month to give feedback and get advice. it worked well for us. It doesn't hurt to see a pscyhologist and see what they say, but I am being honest...CBT might be too hard for a 2 year old. But , then, every child is different. Meg's mom did a whole thread devoted to OCD books. I only read one book when I was trying to ovecome my son's OCD. "Freeing your Child from OCD". I learned a lot from it.

Maybe it's a glitch in the system? Oh, in case anyone wants to know, I will also be posting as "Vickie" on http://pandas.yuku.com/

I hope the abx continue to work! Did the one that had the swab at the well visit have symptoms?

few things here.. As for the duration of meds, I belive it was posted that at least 2 rounds of antibiotics is needed in most kids. many longer. Also, a proph antibiotic is ideal, if it is PANDAS, to try to prevent another strep infection. Even if the 10 days of Augmentin did erradicate a strep infection, it does not mean the child would be fully recovered of PANDAS symptoms in that timeline. The recovery of PANDAS symptoms takes longer. If your child does not get anotehr script of abx, take him in for a follow up strep test 3 weeks after finishing meds. You can also take him in even if he is still on abx, but remind the doctor that he is on meds and a false negative is a possibility. As for old symptoms resurfacing..are you familiar with "turning back the pages" that kids experience with IVIG? Even though my son did not do IVIG, I still saw some of this as he recovered. Also, OCD is so manipulative. If it feels your son is overcoming some OCD, it may try to control him by making other obsessions and compulsions stronger. Think of OCD as a physical entity controlling your child. As for allergies, to your knowledge does your PANDAS son have allergies? If one child has them, there's a good chance your PANDAS son has them. Even with allergies, PANDAS kids exhibit them odd soimetimes. Sometimes with small allergy symptoms or none, even though they do have the allergy. As stated on here before, dust mites are very bad right now. that is a popular allergy. Allergies are a trigger for PANDAS symptoms for my son.

I'm glad it went well. Keep us posted!

Thank you for posting! I wish you and your family continued health and happiness.

I am so sorry. My son was 5 and said he wanted to go to heaven. Even when I told him that he couldn't come back and explained no one really knows what heaven is like, your body doesn't go with you, etc. He still wanted to go. But, let me give you hope...he eventually recovered and he has no memory of those thoughts, words, or feelings. He also never acted on them and never truly tried to "go to heaven". It was more threats. Bad threats, but only threats. Still, those words hurt when you hear your child saying them. Keep strong.

Can I make a suggestion about the page. I love the links, but can you put a summary of the diosrder for those who stumble on the page w/o knowing a PANDAS parent/child. Also, are we putting Dr Cunningham's rearch as the benefactor? If so, should we put a summary of her research in the discussions area?

The nurse's statement made me nauseous. Seriously, I am sitting here trembling. My son, or any of my 3 kids, do not get symptoms of strep. OMG. If I brought my son to the office you were at today before I knew he had PANDAS, he'd probably would be institutionalized right now, full with SSRI's, and I would never have my boy back again. It will just get worse if he has an infection and it's not erradicated. He's 5 like your son. That statement alone makes me say that I would not trust that office. Please take him to the ped for a strep test. Please go to that other neurologist. Whether it's the disorders this one said he had, TS, or PANDAS, get a second opinion! Like I said before, get the rapid...that comes back negative, make sure they run a culture....that comes back negative, you can have blood tests doen to see if there was an infection. IF by any chance he has PANDAS, it's actually common not to have symptoms of strep.