Priscilla

Very nice Vicki, thank you for doing that- maybe we could make it a spot on a Public Service Announcement!

no, you are not crazy, let it add fuel to your fire! Keep all these doctors in mind, and when the research has finally caught up with what us mothers have already figured out, a nice visit with a gift wrapped pile of documentation and a little "in your face!" may be necessary- sorry, this burns me up for you. If you are in NC, Dr L in Md may be closer for you (you may have tried) Dont stop trying!

SOOOO GOOD to hear. I know EXACTLY what you mean about healing. My dd has completed 4 HD IVIG (last OCT 22) and she is doing well. Off all meds, still has some mild issues, but she is HAPPY! I hear it in her voice, especially over the phone, she is herself again MOST of the time. It is such a wonderful feeling, always on guard though. Just keeping our faith and praising GOD for how far we have come. Just a few months ago it was like living with a Rabid wild lion in our home- seriously! I pray for continued healing for you.

I can't help but hone in on the lump. Is it still there? has she had other spontaneous type growths? Has she ever had a MRI or CAT scan to rule out possibility of brain tumor?

I think its possible. No way to know for sure. But something about the yeast factor really bothers me so I really feel we need to regain that balance.

well, my opinion is we already know that abx create an imbalance in gut flora, then I read about some of the symptoms of overgrowth being, anger, irritability, hyperactivity (all of which dd has), along with a clear indication of a rash, with uneven pigment spots on her skin (known to fungal issues) which appear with abx and disappear when stopped. This accompanied with her naturopath believing she had no active infection, but a pretty imbalanced gut (also apparent in her bowel movements). So we did the diet and supplements to balance her gut, but she was still on abx. So I stopped her abx Oct 2. I havent seen a surge of PANDAS symptoms like I thought I would, but I have seen an intermittent increase in tics, which some are saying can be from yeast. The yeast releases toxins as they die known to effect the nervous system. I definitely see an increase in tics with sugar intake (which the yeast thrives off of) My dd is so happy to not be taking 6 pills 2-3 times a day. I do think we need to restart nystatin and increase probiotics, but I wanted to do this slowly after stopping abx because I didn't want to tax her system too much with a large yeast die off. I can't be 100% sure, but my mommy gut just kept me worried about yeast, and like I said, somehow she is maintaining without abx (she has completed 4 ivig) I personally think long term abx can do more harm than good.

I took dd off of everything Oct 2. because I thought yeast may be hindering progress. PM me if you want to talk.

forgot to mention my dd tics are always worse while watching tv too. Almost non existent all day, until she settles to watch tv. I have often wondered if it is the hyperexcitability of these neurons, while she is busy, they are busy, but when she tries to relax, they need to stay excited. I really feel we still are battling yeast and it hinders progress. I have taken her off all meds (even abx) since Oct 2, the only change I noticed was an increase in tics (mostly during tv) so I am wondering if it is a lingering yeast issue. Like I said before, definitely worse after sugar (like week of Halloween)

It seems as though yeast issues can increase tics. With the abx it is certainly likely there could be yeast overgrowth. It has also been reported that hyperactivity can be seen with yeast overgrowth. I know my dd tics increase greatly after she eats too much sugar which helps the yeast flourish. I think some of the anger issues can be attributed to yeast also. It is such a fine line.

We have UHC. Our out of pocket max is $2000/yr. Will depend on ivig pharmacy but we paid NOTHING out of pocket. We had 4 ordered at once, so the pharmacy ate the $2000 out of pocket max because they would get 100% for the last 3. Each charge was like $25,000 but they got paid about $10,000. I am VERY GRATEFUL to UHC. I am gonna write them a letter. I think that I also read they are the first insurance co to recognize PANDAS as a diagnosis for IVIG. Hope the others follow suit.

I am sure it can present many ways, but I have taken care of MANY patients with C-diff. They mostly have diarrhea and it has a very distinct smell usually

ditto that

I absolutely agree. I was very disheartened when during my desperate search for help I was presented with a fee for something that may not even work/apply to my child. I am sure many of you agree, it is now my plight to educate others about this illness, and I am also keeping a journal, any one who wants to see what we have done can see it for FREE, that is my duty, my promise to GOD, to HELP others. Sorry, thats a little sore spot.

Well my dh and I have had to restructure our vocabulary. The word "back", "jaw" "chin", and "head" are all triggers, "back" is the worst. So now, my dd has to get her "blackpack" before school, sometimes we walk in the "black" door, I will be right "black" from the store. (for some reason, "black" is ok). This is my favorite, we all surf, and she is learning to do a "backside cutback", she has changed all surf lingo because we now call it a "buttside cutty" so cute We are just embacing it now, keep us sane.

so sorry you are going through this, looks like you are trying everything. I just want to let you know that for 2 months after ivig my dd was worse, even on abx, it was a horrible 2 months. Then we started to see improvements very slow, gradual, and saw toothed, they did take a while and she is not 100%, but much happier and manageable for us. All may not be lost, and you truly need to take on ONE DAY AT A TIME. Don't look too far ahead, just take the day as it comes and keep your hope alive, it will help your ds..... All my prayers to you.

SO SO happy for you, keep praying, it really works!! We keep all of you PANDAS families in our prayers.

Amazing Amy, not only did you get what your son needed, but you helped all of us in educating others and promoting awareness, the plight of many of us. Thank you so much for your time and effort- YOU ROCK!!!!!

I think this is definitely a PANDAS thing. Before my dd diagnosis, she would actually being doing something while lying about it, and on many occasions, I had told my friend that something was wrong, she just wasn't acting rational, but something in me knew it just wasn't right, it wasn't really her character to do that. Now that she is doing better, but has moments, it has become distinguishable. It is actually like a mom can distinguish her baby's cry (hungry vs. tired, vs. hurt..)

I haven't done it, but have considered it. I do have a ped chiropractic in my area, I let you know if I get there.

I am not sure which tests they are using for the Myco P but I was under the impression that ivig could scew the results for a myco test because of the infused Ig's. I could be mistaken, but I think it was suggested to wait at least 12 wks after ivig for myco or lyme testing.

seemed my dd's last cleaning stirred something up too. I have now put off getting a cavity filled to scared to see what will happen.

Thank you for this post. Several weeks ago I was also in desparation, crying out to God, Why is he doing this to us? I think most, if not all of us have been there. I have been through many other trials and tribulations in my life since 9 yrs old, and never have I felt forsaken until this one. I have been in that pit. I am happy to say that the light is starting to shine on us, and I am finding some clarity. I truly believe in finding a lesson in every struggle. What I am finding is that this life change has actually got a pretty positive side to it for our family. Our patience has tripled, our faith continues to strengthen (and is focused on God, not in our medical system), and each and every good moment seems to make me stop and cherish the moment. I have learned to truly live one day at a time. I even had a personal experience with God telling me it was all going to be ok, just trust him. I feel there are angels with us as well. After my experience, I did just that, let go, and let God. I have even stopped all meds/ supplements over a month ago. We have finished our course of IVIG and we are doing well. In some ways 110%, other ways about 80-90%. I feel that God is using me, and molding my daughter for something special. I am fortunate to also have Joseph as a nurse who I feel God sent to us by NO MISTAKE- He radiates his love for God and has the smile of an angel. Just what we needed to give us comfort for the IVIG process. I feel God wants exactly what is going on in this post. His children uniting in his love to help each other, I feel this makes him proud. And as for our children, like Joseph told me, when God wants to make a perfect person ... he works as the artist, pounding the clay, molding and sculpting, this pounding and moulding can be very painful, but the end result is a true work of art, designed for God purposes. I wait in anticipation, with certainty, that one day, I will be staring at my DD, overwhelmed with pride, viewing the work of art,and all of this will make sense.. May God bless you all greatly....

Thanks for the update, so glad he is doing well. I am also trying to spread the word thru the nursing community. I just realized one of my friend/employees is also a school nurse also. I have printed the article that was on here for her to spread around the school nurse world. Just started another nurse yesterday that actually said she had heard of it!!! Yeah!! I was also able to educate a nurse the day we went to ER for psychotic rages the week after 1st ivig, she had never heard of it, now I see her from time to time and make sure to let her know the ivig has helped. That day, they wanted to admit my dd to the psych facility!! I have also been able to discuss this at length with our Medical Director (I work for a transport company), he is also a ER physician, he was very interested to learn more so that he could recognize if something presented to his ER. Sorry for rambling, it just gets me excited to get the word out- Back to the subject, soooooo happy for you, we are doing well also, I praise and thank the Lord for how far we have come!

That is AWESOME!!!!