Kayanne

Honestly, I don't know...I would try to google for you, but today has been really busy, and I'm heading off to work. Perhaps someone who knows can chime in? Sorry, I'm not more helpful Good Luck. I can only find information about weaning off of zoloft for people who have taken it for some time. My husband took zoloft for about 3 years. I asked him, and he seems to think that if you only gave one dose, then you could probably stop altogether, wait a day or 2, then start with a serotonin supplement. However, I would advise that you ask a doctor first. The doctor may not know anything taking the L-tryptophan or 5HTP, but they should be able to tell you how long zoloft stays in the blood, and if after giving it for a few days requires a weaning process. I don't think you should rely on my husband's guess about your situation...neither of us has any medical background. I am really hoping someone who is more knowledgeable about serotonin supplements and SSRI's will chime in. Sorry, that I can't be more helpful. Good Luck.

I was looking for some information on the web, and came across this: http://www.antidepressantsfacts.com/grapefruit-juice-and-drugs-dont-mix.htm I believe that the information supplied with SSRI's does say no grapefruit juice, however, I felt the need to share this in case someone doesn't know. Please note that there are also some forms of Birth control, anti-anxiety and anti-fungal medications listed too.

I'm so sorry! I know you have been through so much already! I am hoping that the knowledge and resources you have gained in order to help Pixie will now be able to help your 3 yr old get better quickly and fully!! I'll keep you in my prayers.

I am so happy that things are great! Thank you so much for the update!!!

I am so happy to hear that you are all in a good place--what wonderful news!!! Thank you for sharing! Also, I can't thank you enough for doing what you can to help spread the word...I think this crappy disorder can be easily managed if caught early. Therefore, it is crucial that pediatricians and ER workers know about this!

There is still a lot that is not known about PANDAS, and truthfully, all the testing of the immune system is to see if something comes up to justify insurance coverage of IVIG. No one has even looked at what a PANDAS child's immune system would/should be like. My daughter's tests were all normal. However, I know she has PANDAS because of her history of positive strep throats, followed by such a complete shift in behavior. When this all started for her, the only tests run were strep titers, CBC, and thyroid. Well, her strep titers were high. However, I would say that is normal too, since we had confirmed infection(s) prior. She had an immune workup almost a year after she recovered, and that was normal. Her cunningham test was run about 5 months after her first PANDAS episode, when she had no symptoms. Anti-neurals were within norms, and her cam k was 112. That cam k score actually overlaps with normal and PANDAS. So, simply put, despite any test, PANDAS is still a clinical diagnosis done by a knowledgeable PANDAS doc. I think at this point, a trial of antibiotics is pretty benign. If you are concerned about zithromax, perhaps augmentin or a chephalosporin (like keflex or omnicef) can be used instead. Perhaps post on the TS forum too, to see what antibiotics (if any) don't increase tics. Good Luck.

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan. DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first. How long would we have to stop the zolof before we try the L-tryptophan? We took her off the zolof hoping to see a bigger improvement while taking the keflex. We did see a bit more improvement but in other areas it seems to have regressed. which is why we were thinking about putting her back on the zolof. thanks for the info. Honestly, I don't know...I would try to google for you, but today has been really busy, and I'm heading off to work. Perhaps someone who knows can chime in? Sorry, I'm not more helpful Good Luck.

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan. DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first.

Looking back, we believe that my daughter probably had a more mild PANDAS exacerbation around 3 yrs. It manifested itself in her inability to choose clothes...we thought she was being difficult. So, there was lots of crying, and just dressing her, and not letting her pick. Also, she was insistent that her covers be a certain way on her bed. Blue blanket first, half-way up, with just the right wrinkle, the her princess blanket at the foot of the bed, folded so you could see the princess, another blanket to cover herself...she had to have a certain toy with her. If we didn't get it right...the crying was terrible. Of course, at the time, we thought she was just being fussy. And at one point, we just threw our hands up, and said we were not giving in to her demands anymore...tons of crying the first night. But she did get more reasonable--so she was probably healing at this point? Who knows?

I think it depends on how broadly OCD is defined....if you think of OCD issues as ones with difficulty with the gear shift of the mind....ones who have difficulty shifting focus, difficulty letting things go...many more kiddos would get caught in the OCD net for these broader OCD-like behaviors. They are not as obvious as the hand-washing, evening, locking overt OCD behaviors, but are the same underlying "mental-stuck" behaviors. Then yes, marked increase as they go along with the biggies....ASD and ADD/ADHD. Exactly...my daughter just shut down and looked autistic. Was it OCD? Yes. When she came out of her exacerbation, she told us things like, "I didn't think I was allowed to talk because of the feeling in my throat." I really had a hard time wrapping my brain around OCD when she wasn't having compulsions. The ped psych we saw, told us definitely that OCD, can just be thoughts...compulsions are not needed for it to be considered OCD. Dr. L told us that it is hard for these children to do anything with the thoughts that are going around in their brains. However, I do think that PANDAS goes beyond OCD, in that the brain signaling may be such that it isn't OCD, but more of just confusion or inability to process information. My daughter had so many different symptoms...short term memory loss, fine and gross motor skills declined...etc (you all know what I'm talking about)

I don't have any help for your question about lyme testing, I'm sorry . However, if you post in the new Lyme forum, I'm sure you will get a lot of help. I live in PA, and I think it varies on where you live, but as for getting the Cunningham test, I called local labs (affiliated with our hospital) and asked if they could take the sample, and if they could spin it. The answer I got was that they were not allowed to hand the specimen back to the patient, and that I had to take it to the main lab at the hospital, they were familiar with research studies. The hospital packed it up and sent it out themselves. I also didn't need a prescription. Some parents have posted that they needed a prescription for the blood draw from a doctor first. I sent the payment separately because I was not the last person to see the box get packed up. I think you need to call around to local labs and find out what to do first because it varies

Yes. At the very end of a month of prednisone, my daughter seemed to "snap out of it". She was talking, and playing and just being herself again. Prior to that she had improved about 70%, but we were NOT happy with where she still was at (vacant stares, non-verbal, not socializing, she tried to get her words out to me and my husband only, but she couldn't even finish a sentence). To us, it seemed miraculous.

I totally agree with you about the twice a day dosing of cefdinir (omnincef). One of our pediatricians put my daughter on 150mg 2x/day when her PANDAS symptoms flared. For my daughter's weight (47lbs), 250mg daily would have been sufficient--so she was taking 50mg more a day. Also, the pediatrician had said for strep she just likes to break it up so the coverage is more consistent--some of the websites with information on omnnicef also state this is an option for strep. Omnicef (cefdinir) does last long enough for once a day dosing, but we saw great results on the twice a day dosing. By the end of the 10 days on Omnicef, we were beginning to doubt if a trip to her PANDAS doc was even warranted. Dr. L extended the Omnicef, but what has really helped my daughter recover quicker is month-long prednisone. We have had excellent and lasting results.

Is Keflex that long lasting that you can only dose 3 times a week, and still have adequate protection? I didn't think it was. I will try to look it up. My daughter takes 150 mg of omnicef daily as a prophylaxis. Glenda, It does make sense to stick with what works. If keflex worked, then I would try to go back on it. Keflex and zith are both different classes of anitbiotics, so it makes sense to switch back. There are some strains of strep resistant to zith--but generally in the East (PA & Ohio). I would just like to point out that a lot of parents have seen good results with full-strength antibiotics. If you drop your child down to a prophylaxis dose of keflex, you may not see the same results. My daughter has had 2 PANDAS episodes, and we didn't drop her to a prophylaxis dose until she was 100%. Prophylaxis antibiotics play an important part in this disorder, but only to prevent future infection, not to actually treat a current episode. This is just my opinion. I hope you can sort it out with your doctor. I should add that my daughter does not have any other complicating infections, was diagnosed and treated (with prednisone tapers) early, so therefore, we saw excellent results. Many families have struggled for too long without proper treatment, and in those cases it does get more complicated. Good Luck.

This update made my day!!!!

I'm sorry, but I don't have any experience with the 5 day taper. I have read, that positive results can be up to 3 weeks out of stopping it...(going by memory). I would suggest you talk to the prescribing/advising doctor, and see what their take is on your son's brief improvement. Good luck.

Thanks for sharing this. I know that I was told by Dr. L, if side effects are seen, you can modify by giving more or less at different times. Her example was that if my daughter couldn't sleep from the pred, then I could give most of it in the morning and then a smaller dose at night. For us, it was never an issue, though. For both of my daughter's tapers, the first 2 weeks at the higher doses was split up into twice a day. Good luck with the pred!

Yes, I was thinking the same thing...even during the healing process this can happen.

Dr. L is my daughter's doc and has followed up with long-term antibiotics. Also, I don't think that prednisone is necessary if you have PANDAS. You can skip it--Just give antibiotics, or move onto the bigger treatments such as IVIG or PEX. There may be a dilemma in that the a PANDAS doc may want you to try the prednisone first before trying the bigger guns...that is where you seem to need more clarification, or information regarding PANDAS vs. TS...I'm sorry that I can't be more helpful...

I'm sorry you are having such a hard time. It is important to try to determine which infection is causing your child's symptoms because then the doctor can tailor the antibiotics to better treat it. Mycoplasma responds better to biaxin and zithromax. Strep responds better to augmentin or a cephalosporin, and most of the time zithromax. Lyme respond to a series of rotating antibiotics, and other supplements. Also, no, if the infection is truly cleared, and the immune system has quieted down, then a child will not get worse once the antibiotics are stopped. Although, my daughter will be taking antibiotics until adulthood, when we have dropped her down to a preventative dose (not full strength) her PANDAS symptoms don't come back, unless there is something going on with her immune system (colds, allergies, strep)-- even then for her, only strep is the big trigger...the viral stuff so far has caused very minor bumps...and increasing an antibiotic for a virus doesn't make sense to me. I TOTALLY understand your concern about making sure your daughter is diagnosed properly--everyone on this forum wants all of these children to get the proper help. If you are unsure if you are looking at PANDAS or TS, please be very careful about using steroids. Steroids can make TS and Lyme worse. Please, if you haven't, spend some time reading the helpful posts in the TS an Lyme forums...they may also give you a direction to go. Good Luck.

Congrats to your family!!!

I like to say that my daughter "had OCD so bad that it shut her down so that she looked autistic" -- not that she had autism.

It seems you are on the right track. I would also show Dr. L the results of the stool tests that show positive for strep. I think Dr. L believes that it can be in the gut too.

It's possible that it will have no effect on your daughter, however many people find that their PANDAS children react to strep in the environment. I just wanted to let you know that last February, my 3 non-PANDAS children were positive for strep. My PANDAS daughter (symptom free at the time) was on 200 mg of pen vk 2x/day then. She continued to test negative, although her PANDAS symptoms started to ramp up again. Her pediatrician put her on 10 days of omnicef based on PANDAS symptoms alone, and we high-tailed it to Dr. L who continued the antibiotic and started her on a month of prednisone. Within 2 weeks she was back to normal. Good Luck

No Lyme here.