T_Mom

Hallelujah!

Hi--I am so sorry this post-IVIG time has been up and down. Is your daughter on full strength antibiotics right now? I can't help wondering if that would be worth a try.

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Ah, yes, ...is this coincidental or what, both of my daughters had "issues" which started two weeks before their birthdays two years ago. OCD issues for one d and emotional swings with raging for the other. It was right after Halloween and I thought that maybe they had somehow gotten some horrible thing in their candy... One daughter had full-blown PANDAS issues within 2 months, the other got better but things surfaced later.

Is it NBC that does 48 Hours? or some type of mystery show that might feature us? Great idea--

ShaesMom, I just have to comment on this as I had a similar visceral reaction last night. I had waited for weeks to get the book...it arrives and I carry it around all afternoon. I put off opening it until late in the evening--and had the same reaction. I found myself praying as I really did not want to read that book... Just too close to home. I want to point out a critical difference though in Beth Mahoney's experience--a difference from most of us reading this forum. This dear mother could not find anyone who had the slightest idea of how to help--for a long time, but then she did. We do know what has made a difference for others and may make a difference for our child. I am very thankful that when my own d was in her worst episode Dr. K was around to suggest a steroid burst -- that antibiotics were being discussed on this forum, which I was lurking on at the time--and we tried both, and she started walking, talking, stopped wetting herself, opened her eyes and stopped spitting at us--She came back and started interacting like a normal 10 year old again. It is a great gift to have -- knowledge about possible options.

Hi Vickie--I think what needs to be looked at is that he had a dramatic change--with full-strength long term antibiotics, adjusted as necessary-- and the doctor tested other issues to try to rule out all other possible problems. -- this was not typical prophylactic use-best, T.

Just finished Saving Sammy last night--mirrors our personal experience in many ways--we also had to carry our child at one point. (Though we stumbled upon the fact that antibiotics full strength were effective in our case, with a boost along the way from prednisone.) Good book Beth Mahoney-- You have put us on the map! Thanks again Dr. Nicolaides for being willing to treat. Let's start passing it out everyone-- 1. A one-day invited conference in the Washington DC area. (Would be willing to work with one or two others on this to see if it could happen within the year.) 2. A small booklet of information--could be a pdf and emailed, or hard-copy.

Just finished Saving Sammy last night--mirrors our personal experience in many ways. (Though we stumbled upon the fact that antibiotics full strength were effective in our case, with a boost along the way from prednisone.) Good book Beth Mahoney-- You have put us on the map! Thanks again Dr. Nicolaides for being willing to treat. Let's start passing it out everyone-- T.

Whew--this topic is heavy to read-- How thankful I am for those doctors (like Dr.s K, Latimer, Cunningham, Alia, Nicolaides, etc., etc.) who are building treatment successes for our children and children in the future who may have this-- Those willing to TRY often uncover the treatments through logical deduction, through caring concern that truly unbind the bound and heal the sick. Please keep at it -- we cannot thank you enough. I thank God for them.

Hi Vickie-- Just wondering where you got the impression that you could not use ibuprofen when taking steroids? thanks--

Hi All, Just want to throw this out there and see -- Am I the only one with a child on long-term full strength antibiotics on this forum right now? We are reticent to change a thing as she is better than ever right now, not perfect, but doing very well--Has been on full strength antibiotics (Amoxicillan) for 9 months. We are ready to do PEX or IVIG as necessary if there is another episode--but pray it won't be necessary. TMom

EAMom, I watched for the "margin drift" after you mentioned it last year, and I too often noticed a "margin drift" but not consistently. The really obvious example of Ps that I would take to doctors last year was a folder of her writing samples from the year before to the months of her exacerbation...it was a SHOCKING and obvious contrast. Dr. K's website was the first place I read about Ps kids having writing issues, and it blew me away. We kept coming back to that issue on his site as it was so striking and obvious in our case. It helped us define the issue really. My professional background is in the area of teaching writing and written language development and it was definitely an obvious change in both handwriting AND more importantly written construction. Margin drift seemed to be part of the whole "writing-disconnect" that our d experienced. LLM, the "first tooth" analogy makes sense but it is typically an age-based issue in my understanding...related to "what teachers say" re: reading:) I think the age-regression issue can take the child by storm in Ps as far as their resulting behavior "acting out" as a result of brain inflammation, at least it did with our d. I wonder if all children actually experience it or if that is based on the experiences of a few? During her worst exacerbation she was like a naughty 4 year old, in all ways. She was 10 at the time.

ACDRobert--that is great news! re: Dr. Latimer, call to check, but I think it is less than what is listed above--

Prior to PANDAS and when not in an exacerbation--gifted and talented. When my d has had exacerbations her handwriting went down-hill fast. Written composition has also been greatly affected. In fact her written language became so bad that last year the school said they would no longer grade her writing! On the report card for that quarter they put NA... Math was affected in that her writing and concentration made it almost impossible to carry through on multi-step problems. Her drift in handwriting also made problem writing in math very difficult. Overall concentration was affected. We believe our younger d has shown some signs of Ps now as well--though relatively mild and controlled with antibiotics right now. She is in 4th grade and her reading "focus" was affected. This results in a lack of interest in reading-- LLM-- I would guess the reported "academic issues" associated with Ps will be correlated somewhat with the grade-level of the child as what is asked of a child academically will vary across age--so you will see differing results somewhat according to age, just my guess:)

Yes--I read it last year, somewhere in the midst of our severe ups and downs. What touched me the most was the horror and dismay of the family...the panic that the parents felt when there seemed to be no one that could help. I knew that feeling time and again this past year-- and the sense of what it was like to go up against medical "advice"... To feel like you are hanging out on a limb on your own, no one seemingly able or willing to TRY to treat your child, and on top of this horror--doctors start looking at YOU as if you had two heads when you ask about Ps-- horrible all around, been there, and done that-- ...whether or not it was Ps in this book, it certainly was a walk through the valley for that young boy and his dear family. I am tired -- though our d is doing well, so much better, this whole Ps thing has been a most difficult year and a half. I realize we are so much better off than so many dear ones, but this has taken the "stuffing" out of me. Tired and worried, and yet thankful we are seemingly on the mend. But tired...

In our case the prednisone essentially eliminated the OCD behaviors (which were severe), it helped with the mental fog, the academics cleared, personality came back, and overall health. She did have periods of being more hyper and definitely more impulsive than her usual calm and typically polite-self, but we factored that in and chalked it up to the prednisone-- and it was WELL worth it--as our daughter was back.

Wow--Mom MD that is great to hear-- Your post really captures the essence of the PANDAS/PITAND healing...It does take time. It certainly has for us -- I really like the thoughts on progressive recovery, first 6 months, next 6 months, the following year... I also really appreciate your sharing of the notes from Dr. Latimer. It certainly represents what my d has experienced including the periodic flashbacks when overly tired. I am really glad to hear your son is doing so well--

Just a note--Our use of a steroid burst (2 different times, 8 months apart) had dramatic results in academics, personality, clearing mental fog, and obvious OCD reduction (school noticed it as well--teacher called me to say she was seeing a "different child" from the one she had seen all year...) Pretty sad really. This last time was about the 5th moderate-severe exacerbation (and our d has severe episodes, ie., severe OCD, stops talking, eyes closed, etc.) Prednisone for us was clearly a huge help. Vickie--you may be right it is best to treat sooner rather than later, just wanted to add that even "later" steroids brought our d back to essentially 100%. -- She has had mild ups and downs, but much, much better. (She is continues on full strength Amox.)

Alex--What wonderful news-- Thank you for sharing this with us. It sounds like things are on the mend--It is a long road in both directions it seems--but you seem to be heading in the right direction! The fact that you are hearing and seeing "normal" type of interactions again...personality back, and laughter...I remember how I felt when those returned--thankful, ever so thankful-- All the best--

Yes! I have to agree-- A binder is my goal...Right now our collection of files, history, results. is stored in a large plastic bin! Yikes!

Hi--That is great, but if he has this new leg ticcing -- and he is crying it is bothering him, I think he needs to be seen sooner, can a neurologist there see you? What did you find out re: could it be a reaction to antibiotics? ... All the best to you as you sort this out.

Thank you again MarknLA, You said: "THATS when they put her on Biaxin for like 15 or 20 days. Thats when she got significantly better.... My daughter was on antibiotics for close to two years. She stopped around ten. I tried to never miss a dose. If she became sick I immediately had her tested for strep and treated with stronger antibiotics. They used Biaxin (Sp?)alot for her treatment. Im sorry if I am not so well informed on the newer antibiotics and probiotics." YOU are wonderful for sharing this with us-- May I ask, when your daughter was on antibiotics for "two years" was it full-strength or a half-dosage? It would really help us to know-- Also, was it Biaxin? Thank you again, TMom ps--my d also had a sinus infection show up on her MRI when this all started...

I am so sorry you are facing this--It is so, so hard. Re: the leg tics, could this be a form of chorea? The Cam Kinase is so high it is almost in the Sydenham's range, has that been considered?-- I do not know if leg tics or cramps can be an antibiotic side-effect, but it certainly is not normal, and I'd check with a neurologist since these are new and sudden. May be well worth a phone consult with Dr.Latimer.

Hi Lena, In our case our d has been on Amoxicillan full strength since January. (note: not prophylactic) I believe that for us, it has been a life saver, though it may have been easier (and quicker) perhaps if we had tried something else like a month of Azithro. (but at the time the doctor we were seeing would only prescribe Amox.) Anyway-- A word of advice...if it works it works. If it does not, then my own opinion is that you move to the next step which may be a trial of something stronger. If it works (Amoxicillan or whatever), you will know. I would have tried Azithro but short of ordering it from Mexico I could not get it!! One mistake one earlier doctor did with us though was to put her on Amoxicillan for an exacerbation (cold-like illness, temperature, coupled with OCD and tic exacerbation) and after 10 days we were switched to half-strength dose prophylacticly(sp?)...Our d's symptoms exploded when we went to half strength...severe OCD. After about a week we put her back on full strength Amoxicillan and within 4 days she was back in school--I am convinced we must treat it until there is a quelling of the symptoms hopefully representing something has been eradicated, changed. Hoping for the best for you-- TMom