momaine

We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day. He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.) He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay. He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years) Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well. I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes. Angela

Thanks Wendy. Angela

Well, Dr B's office knows that we have seen Dr. T and knows what tests she has already had and will soon know that my dd has been on antibiotics for 5 months and we are now back to square one. In hind sight, I think the combo on Zith and Augmentin gave us steady slow results but the Biaxin caused a backslide that wasn't noticable right off due to the prednisone, which helped tremendously and which I am hoping kicks in again very soon. I've talked with Dr B briefly and he didn't tell me I was on the wrong track so I'm thinking he can help us. Angela

Hi Everyone, My dd (13) is one who switched from Augmentin and Zith to Biaxin because she had a high IgG for Mycoplasma. Because we had also started a Prednisone burst around the same time, it took a while to see if the good results we saw were from the Biaxin or the Prednisone. As our luck would have it, it was likely the prednisone as my dd's issues have grown worse, esp. the last few weeks. (was on biaxin for maybe 6 weeks) she's almost back to square one, pre-antibiotics. NOT GOOD! I got a hold of Dr. T today and we switched her back to the Aug/zith. We see Dr. Bouboulis on Tuesday and I'm hoping that IVIG is in her near future. I''m hoping for a bit of a turn around with a recent prednisone burst and the change of antibiotics back to Aug. and Zith. I'll take any prayers or good wishes anyone wants to send that we get IVIG as soon as possible and to have it covered by insurance would be a true blessing. Wishing you all the best with your children, Angela

Thank you for sharing your story. It gives me hope. Angela

This is exactly what it looks like with my dd who has ocd issues with swallowing and who i wrote about one post above. Angela

My dd has swallowing issues. It appears to be an OCD issuse. When she is having trouble she needs me to watch her swallow (whether saliva or food) so that I can tell her that she did it normally. she'll make a loud groaning sound so that I will LOOK at her then she can swallow. But if I don't look she can't even swallow her saliva at times. This came on since starting antibiotics, but her OCD morphs a lot so that is not unusual for her to develop a new issue. Overall, things are better with the combination of prednisone bursts and antibiotics but still a LONG way to go. So frustrating! Angela

For my dd, a there was a marked improvement with the first steroid burst of day12 or 13 counting from the first day she took the prednisone. It lasted 5 days. The second burst we saw improvement on day 7 (higher dose and also started Biaxin that day) and it lasted 3 weeks. Third burst kicked in even sooner and lasted about 3 weeks. She's struggling now waiting for the last week to pass so she can have another burst. Will talk with her dr. today and see if moving it up is an option. Angela

HOw long ago did your son have this IVIG? And what was his dose? Thanks, Hope things turn around soon. Angela

Wow, so glad to read of your dd's good news. Ours, not so good. The biaxin/prednisone has helped a lot but not sure which has helped more and things seem to have stopped movoing forward again. Yesterday she got her Biaxin/Advil later in the day than normal because she slept late then forgot it once she fially ate breakfast and things REALLy fell apart last night. GRRRRRRRRRRr! Wish this long journey were already over. Angela

This is what I suggest if you need a prescription from Dr. T. It is what I do and he always gets back to me. I title my email, "Need Script Filled by Wednesday" (or whatever day) Then I write my daughter's name, date of birth, pharmacy number, and exactly what the scripts are that I want. It makes it so he has everything at his fingertips so he can just make the call. He doesn't have to go look it up. He is working alone and likely it is overwhelming. It's frustrating when he does not respond so I make it as easy as I can for him. He has done so much for my daughter. It must be completely overwhelming working alone. The easier you make it for him, the more likely you will hear back quickly. Angela

Dr. T

My dd has been on Biaxin for 5 weeks and we just got a new script for 30 days. Since she started the Biaxin and steroid bursts, she's been doing the best she's done since last fall, but at this point I still don't know if its the Biaxin or the Prednisone. It has been easy on my dd's stomach as long as she has her Culturelle. Angela

if you have a local tack store, try there.

Did both of those with my dd for over 2 months. No problems as long as she got her Culturelle. Good luck Angela

(((Melanie))) I understand how tired you are. Any chance your family could raise some money for your son to see Dr. K?

Why did they use the term notoriety in the title? It scared the ###### out of me. I thought the article was going to be negative, but it wasn't. Angela

I can get away with doing 200mg each time with a lot of benefit. Depending on the day I do 2 or 3 doses per day, spaced out evenly. It really helps my dd a lot. Angela

It tastes horrible, but you can get liquid zoloft that you can dose easier on the smaller doses. Dilute it in water. Be sure you know the diference on the syringe between 1mg and .1mg. I messed that up once. We had a similar week to yours. Doing VERY well on the Biaxin (combined with monthly prednisone burst for 5 days) but then I cut back on the Celexa a small amount and everything fell apart. For her though, it wasn't the typical withdrawal symptoms but a worsening of her OCD/tics. Makes me think that despite the fact that Biaxin is helping quite a bit, it isn't getting to the crux of the problem and if it were not for the Celexa she would be non-functioning, at this point. I'm not patient at this point and am pursueing IVIG. I just can't wait this out and see what happens over the course of months. My dd is suffering. Angela

At this poing in time, I can't imagine making my pandas child sleep alone. It kills her to be alone. The melatonin does help a lot for her and it relaxes her enough that she can usually fall asleep in half an hour or so. (sitting up on the couch with her feet touching the floor, which is the only ways he can sleep at all) If she is having a particularly difficult night (unable to stay on the couch) I sometimes tell her I'm going upstairs unless she can pull herself together. She needs me there SO badly, that is usually enough to get her to settle down. Without the melatnonin its a lot harder on her. Previous to pandas, she enjoyed sleeping alone in her room for a couple of years so I know its related to pandas and not a normal part of her personality. You really can't impose the same conditions on these kids as you would if they were normal. They have inflammation in their brain that makes it difficult to filter out which thoughts are something that is worth worrying about, vs. thoughts that have no real danger. Angela

I chose previously diagnosed with ocd but an exacerbation brought us to pandas. My dd was a very carefree child previous to the late summer/ early fall of the year she turned 10. I can point to that fall as a sudden onset but I can't pinpoint a day. It all started with worries that were out of character for her and stomach aches that made her clingy and want to sleep in my bed. after therapy and a diagnosis of ocd and later meds when we she was miserable and nothing was helping, she had a 6 month period with very few symptoms. A raise in meds gave us about another year and a half of mimimal symptoms. That brings us to this last summer/early fall when she became completely incapacitated and we learned about pandas. Antibiotics have helped, Augmentin, Zith, and now Biaxin, but she's never gotten close to to baseline again. We're now pursueing IVIG. Angela

Maybe you could have the immunologist consult with Dr. K so that he recieves a dose that will help with all the probelms. Angela

We are planning to pursue IVIG and I'm wondering what the costs would be for a 95 pound child who would have it over 2 days at the dose Dr. K recommends. I've heard $100 a pound but does that include everything or are their other costs related? Thanks, Angela

Thank you for your replies. I'll see what today brings and see if she seems to be staying worse or it last night was just a bump in the road. Maybe I'll give it the week. I'd just keep her on it if I didnt' know that sometimes it actaully makes PANDAS kids worse. What if she could be better without it? It did seem to help when we started it but she was in a VERY BAD place. She was completely incapacitated by the OCD. She has improved tremendously, esp. since starting the Biaxin. Wish there was an easy answer. Angela

My dd is likely a mycoplasma case as she had a high IgG and is responding well to Biaxin xr and prednisone. Dr. T and I talked about lowering her Celexa when doing a prednisone burst and while things are going well. Whe she started the Celexa this fall it seemed to take the edge off and anxiety symptoms diminished a noticable amount at 20mg. She still had a long way to go and we upped it to 40mg. There was no noticablei mprovement at that time but it was shortly after that that I figured out that Advil gave her great (er) relief and came to the realization that she had PANDAS. So, she started it before we knew she had PANDAS/PITAND and we would like to get her off it becasue we don't really know if it does anything anymore or even if she needs it. I decreased her dose two nights ago from 40mg to about 30mg. (cut off part of the pill) Yesterday was a very good day. Evenings are always more difficult and last night was no different but it was on the better side. Today was also a very good day up until 5 pm when everything fell apart. (badly) She is really having a hard time, OCD/facial motor tic. Since starting the Biaxin most of her days have been better but we did have one day that was this bad a while back. Thank God it didn't last. Now I am worried that tonights difficulties are from the lowering of the Celexa dose and not just part of the ups and downs of the healing process. I guess I won't know unless we stick with the reduction for a while longer but I'm curious as to others experience when lowering the dosage of an SSRi while on antibiotics and prednisone. Comments? Thank you, Angela