greenmommy

Just made an appt with Dr Latimer for 9/17.

I hope that the pediatrician will continue to be great....just nervous due to the ID appt this morning and their communication. The steroid was for 5 days and brought my son back to 85%...then continued with antibiotics...about 90% now...nervous because his glands are still swollen.

We live in Atlanta. I will happily fly my son to a dr that knows about PANDAS...Is Dr Lattimer the person to call? Thanks - I also left in tears. It is so frustrating to live in a big city like we do and not be able to find anyone to help. Alicia

Went to Infectious Disease today. They will not help us at all. Even though last time they said they would if it happened again - which it has!!!!! He finished Day 20 of Keflex yesterday and now we have none. I left a message with pediatrician to call me. He said that it was a coincidence that my son got better on antibiotics and he thought that I should go back to psychiatrist. Words can not tell how disappointed and frustrated I am. He said he thought that the steroids could have altered his behavior. I was so on "my game" and so professional - non confrontational. It sucks so much that we have to advocate for help!! What really stunk is that the nurse told me that the Dr we were seeing and the head of the division were on the phone talking about our case - even before he saw us!! Then to be so resistant. I asked him is this the position of you or the Institution and he said it was the position of him and the Institution. They do not believe in PANDAS. How do I find the phone numbers of the doctors that do believe in PANDAS? Who has helped you? A

Good question!! That is the hardest part...when you run into a naysayer that won't even listen to you. A

Hello everyone - Just wanted to send an update... See my first post to this topic... I went back to the pediatrician and she put him on prednisone (7 days) and Keflex (20 days). On Day 4 we saw a drop in he rage...less reassurance questions...happier...some smiles...Day 5...better...Day 6...even better...now Day 19...Great! No rage in about 7 days. No questions in about 4 days. Also - HE WENT TO SCHOOL THIS WEEK!!!!!! He has not been out of the same room as me all summer! The keflex ends tomorrow...Going to infectious disease on Monday. They told me last time that they would help me if he got PANDAS again - so I am hoping that they will. The neurologist this week said that his throat is red and his glands are still swolen. Not sure that we have beat the infection. Gonna have to be on my game on Monday at Infectious disease. I am nervous that this all going to come back once Keflex is done... Any thoughts or anything??? Any info sheets I should take to infectious disease? Thank you for all you share. It is so hard .... In peace, Alicia

Today is Day 5 of the prednisone and Keflex. He is off zoloft. We are seeing some improvement in the behavior. We saw a neurologist yesterday... He said he "sort of believes in PANDAS." But after talking he did give my son a PANDAS diagnosis. He was going to call the pediatrician today. He thinks we should continue with the antibiotic and finish prednisone. Going to look into doing another round. He did a blood test to test titers again and look for Mono. I told him we have seen a little improvement. My son has told me (today and yesterday) that he does not worry the whole day and there are blocks of time where he does not ask questions. And he said that he wants to go to school next week. He told me today that he does not feel like he has to ask me about every worry he has. This is huge compared to where we were last week. I called pediatrician for another round and did not get a call back...will push harder tomorrow. For those of you that had good results on the steroids...how did you start to notice the changes in behavior. Is it a gradual change? Gets a little better everyday?? Thanks so much... I completely agree with you....we used it for six weeks...and the last four weeks it was only 5mg daily...DD6 is almost completely recovered...just some really minor issues now... ~Karen

Thank you so much for your responses. I printed out your emails and printed some from the PANDAS network and went to the pediatrician today. We left with a prescription for Cephalexin - 2 tsp 2 times a day for 20 days and Prednisolone 2 tsp 2 times a day for 5 days. She took blood work again. She gave us a recommendation for a neurologist. She also said to continue the zoloft for now because we should not make 2 many changes. Does this sound good??? Alicia

About 2 years ago my son was diagnosed with PANDAS. Out of nowhere he started acting totally different, major OCD, separation anxiety, frequent urination, counting...Had him tested for strep and it was positive. Took trying different antibiotics and being on the last one for two rounds to beat the strep. We have had a beautiful 2 years since. He is a joy...so happy. He does have anxiety around his nut allergy. He does not do well in high pressure situations. He is happy though. Enjoys being a child. A treasure! In May we were all sick. My husband and both sons (including PANDAS child) developed white bumps in their mouth that took forever to go away. School got out the first week of June...my son started complaining of a stomach ache. Then he complained of a headache. Then he developed a very sore throat. I took him to pediatrician and she looked at his throat and remarked that it looked "like classic strep throat." The quick test was negative. She went ahead and prescribed penicillin just because of his history and she was so sure it was strep. He did not show any change in behavior (anxiety at that point) but his throat did start to feel better. Then I went back in and asked for a blood test. He had lots of anxiety...reassurance questions at this point. She gave me another prescription for Omniceft and did the blood test. The blood test was negative and the Omniceft (1 round) did not make much a difference like it did last time. Now it is August and we have seen everything get worse. He has horrible anxiety, ocd and rage episodes. He has horrible separation anxiety. It is crazy...in May he was so happy and confident. We have been seeing a psychologist and doing CBT/ERP and we also have seen a pyschiatrist that put him on zoloft. He has been on the zoloft for 2 weeks. He is so pale in the face. What should I do? Right now I think that I am going to call the pediatrician and go through all of this with her. Who is the right Dr here? The negative strep tests threw me off but now I have been reading that especially with the 2nd episode that the test can be negative and that longer durations of antibiotics are needed to see improvement. Please -- any advice you have. I am so worried about him. In peace, Alicia

Thanks everyone! He is getting better (I think) and hopefully the symptoms will go away! A

Do drs put child on a antibiotic with virals after PANDAS? if symptoms are back? Alicia

Thank you for responding. If it is a virus that is making him act this way - do they still do antibiotics to make him come back to normal?

About 2 years ago my son started acting totally different. It came out of nowhere. Major separation anxiety, scared of everything, counting on his fingers, etc. Every day it got worse. I did some internet research - what could this be...to change into a different kid overnight. I found strep in the results. Took him to the dr and demanded they do a strep test - they did and it was positive. Took him 4 rounds of antibiotics and the one that finally beat it was omniceft. After we beat the strep - took about 2 weeks and he was back to normal. Last week he started acting really anxious and scared. Saying things that are very extreme and stopped eating. He is not as bad as last time but totally different - very hyper too when playing with friends. He has been complaining of a stomach ache and head ache and then he got a very sore throat - said it felt like a dagger was in there. I just knew it was strep. Took him in and the test is negative. She put him on an antibiotic since he had been complaining on stomach ache and she thought the throat looked just like strep. After they sent the strep test off to the lab it was still negative. He is on clyndamyacin. He is acting a little better but not really. What is going on - could it be PITANDS - does PANDAS ever turn into that? What should I do? Please help. Alicia