trggirl

LLM, we are taking the PS 100mg now. I feel like it has been a good thing so far. My daughter's mind was constantly moving and PS has allowed her to slow down a bit with her thoughts. We still need the Amantadine for the focus and follow-through. I will be curious to hear how it works for your son!

Hi Kimwal, thanks for sharing your story! Would you mind telling us what helped your son? It's great that you found a good doctor!

We had increased tics from probiotics.

We used the 1200mg softgels. I had to guesstimate, but I gave about 1/2 of one every morning.

We just finished a trial of Phosphotidylcholine. I only gave it for one week and I can honestly say I don't know if it helped or not. Sometimes I thought I was seeing improvement in focus and other times I thought it was worse. It was definitely not a miracle drug like Amantadine is for us. I may try again at a later date but for now I don't want to continue giving anything unless I know it is helping without a doubt.

We have had high lymphocytes for the past three years. It seems like we had an odd neutrophil level once or twice, but I would have to go back and check on that one.

I have always found it odd, but like you describe, my dd reacts amazingly well with some antibiotics (Augmentin, Cefdinir) and goes downhill with some (Zithromax). I have always taken the position that I am going to give it three or four days and then I am not going to continue something that is making her worse. I don't know if that is the right or the wrong approach when you consider herxing and other meds in the mix but that is the approach I have taken. It just seems that if some antibiotics give immediate and dramatic relief within a day or two, why keep pushing one that is causing stress. :( Anyway, those are my thoughts. I wish I knew the right answers.

I would definitely ask about Vanco. My dd developed Clostidium also but her symptoms stopped upon discontinuation of Augmentin. A number of months later we tried Augmentin again and she tolerated it this time with Florastor. Honestly though with that temperature and her symptoms, I would be at the doctor immediately asking for broad spectrum blood work, stool work and urine. She could have any number of things going on including Clostridium, Strep, etc. And maybe it's just something minor but they need to test IMO. Good luck.

Have they treated the C. Diff?

Thanks for the article!!!!!!

I don't think the 10 day taper would be the cause. I would dig further. I will say I am on a high prednisone dose for a completely different issue right now and I am having some of the exact same symptoms she is suffering from so my guess is that is definitely related. I don't know the relationship between IVIG and adrenals. Wish I could help more. I'm sorry that this is happening but I'm so glad that they ran this bloodwork and can start digging. Hang in there.

Thanks Nancy!!

I was thinking the same thing as Smarty Jones. I know each child is different so this may not be the case for your son, but several of the things on your list are things that set my daughter's tics off. Omegas, D's, probiotics........ And she tests very low in D, but she can't tolerate it. Instant tics.

"I've seen first hand in my profession how easily a single piece of research can be distorted and expanded far beyond what it actually says!" And I have seen first hand how a single piece of research can spark an idea in an interested medical professional that leads to a new and exciting path which might help a patient. Again, I really, really don't want to be negative and controversial. We are all on the same team fighting for our children. I just feel these kids deserve the benefit of any information presented so a professional can evaluate and make decisions that may help the child. I would have loved to be at that conference. It's just not always possible. I won't post again on this topic. I just felt I needed to speak up. The facebook post made me tremendously sad, like hitting another brick wall in finding elusive PANS information.

I hate that they are taking this stand of withholding information. It is going to be years before things are tested, proved, and understood. And in the meantime, we are left fighting for treatment!!?? :( Why not share the information and then let us discuss it with our doctors and make decisions based on the child's situation and the possible risks versus benefits?! I did read the facebook request and just felt it was wrong, wrong, wrong. I try very hard not to step into anything controversial as I feel we are all fighting for the same thing, but in this case I think the child can be hurt. Information should be disseminated, not withheld.

JAG10, Yes my daughter is still on it and it is very helpful. It helps with focus mainly. It is the only drug so far that we have found that helps with focus and that is after trying MANY different things including stimulants with terrible side effects. We use Minocycline and Amantadine together. So far we haven't seen any "down side" to it. Just fyi, Zithromax did not work for us. It made her very hard to get along with. Let me know if you have any more questions.

Thank you for your post! It is wonderful to hear messages of hope! Would you mind sharing if your daughter was immune deficient or not? I'm still trying to understand why IVIG works for some but not for others. I hope the new study sheds some light on this.

My daughter has had high absolute lymphs since this started. Almost every single blood test for 3 1/2 years has shown it. It has to be a piece of the puzzle. Sounds like you have some good doctors on your team. That is awesome!!! And so glad he is making progress on his sleep. It really helps.

We had some success with giving DMAE which is thought to possibly be an acetylcholine precursor. It noticeably helped her focus, but it seemed to stop working after awhile. I have always wondered if Choline would be a better option. On a different note, SFMom, what is MSM for oxidative stress? I don't think I have heard of that.

Ifran, what symptoms increased with glutathione?

Fish oil was terrible for my daughter's tics. Even omegas in food cause an increase. If you decide to try the glutathione, I would love to hear feedback on it.

We have never done IVIG so I don't have any info but I hope the IVIG went well.

LLM, looking forward to hearing about your experience with the Niacin when you have time. Thanks!

All I can add is that my daughter is low also and is definitely activated by Vitamin D.

Thanks for sharing!!!!