saidie10

Hello all! Our Immunologist in San Antonio who Dr. M.C. calls a "very fine pediatrician and immunologist" is steadily working with his team on a protocol for treating PANDAS patients which will include if necessary IVIG and PEX. Dr. M.C. is heading to San Antonio in February to discuss the work they are doing with our Dr. and his team. Very exciting stuff! Our experience with his team was great, so PM me if you want his name and number. He is very serious about defining a good, safe, realistic approach to treating PANDAS children and I know if you are looking for a Dr. in this area he would be a good choice. Cindy

this is so horrible I could just scream! i am so very sorry you are dealing with this when all you are is a wonderful mom who has fought for your children and now that all your hard work has paid off and you have the answers and possibly some solutions, this is thrown at you! report them and fight, fight, fight...you still have some left in you although you feel as though you are at then end of your rope. hugs and prayers to you and your family

What at week!!! Surely you are at the bottom of the hill and can start to go up already and have some good times ahead!! As for the T&A, I personally would do it and would remove my younger son's if a doc would do it. He has had strep twice this year and scored 179 on Cunningham's Test. I know the next strep infection will set him off again and it could be a longer recovery. Older PANDAS DS had T&A after last known strep infection in July of 2009 and has not "caught" strep again but does continue to have elevated titers, but it is clear that removing his tonsils helped!

so glad you have answers now. we saw Dr. Rao for diagnosis too...thinking about doing a phone consult with him regarding my younger son who scored 179 on Cunningham but doesn't have high titers either. i personally think he should be on abx. his rages and tantrums are god awful and it doesn't help when his older brother who we did get a formal diagnosis is raging wish I had answers about dosage but i would agree that Augmentin is what most are saying is the best. hope you can get into Dr. Infante and his group soon. wonderful team!! we should get together soon!!!

We are a week and a 3 days post IVIG and what a difference a weekend makes! Stressful school aside and my boy shines!! No tics, no rages...a calm has come over our house the last two days!!!! :D :D Hoping for conintued improvement but know that the school bell rings in 8 hours On another note I am one proud momma...I have been emailing his teacher this week to stay on top of how he is doing and she told me Friday he had such a good day. He was the teacher helper and earned a treat. She said that he looks right at her when she is redirecting him and has EXCELLENT manners. Thank you lord for blessing me with this beautiful child :D :D! One more thing and I want to know if you guys think this is possible; I gave DS7 DanActive Yogurt on Wednesday, not realizing it had the active culture Step T. Thursday was definitely the WORST day this week and he ticced all the way home from school and he said he was ticcing at school too. I of course did not give this to him anymore after reading more about this in yogurt. Do you think he had that bad a reaction to it, or do you think it is a coincidence? Crazy stuff if so!

Excellent point...maybe I will hold off on some things to see how things progress...we are only going into week 2

Never a hijacked topic! ALL good advice!!!! I am upping fluid intake...my son loves lemon-lime Gatorade so doing that, picking up Omega 3 supplements today...any advice on dose for 7yr old weighting 45lbs? I will ask at Health Food Store too. Also going to pick up Culterelle? I need to write it down but it is the probiotic mentioned the yogurt post...going to look at the one that starts with an F too! Epsom Salts too for some soothing and relaxing baths. DS is wanting to stay in his bed a lot and watch TV. I am FINE with that. He says he feels safe there and his mind can rest...that is what heeds right now anyway!

so sorry melanie. i hope you find the answers to get you and your family through this and i hope he did well...

Sorry you have had such a rough week but there is a glimmer of something good with the school and how DS5 is doing there! I totally know what you mean though about holding all together and then falling apart at home...my life to a T right now with post IVIG DS7

Hi Grace! Have you taken anyone in for strep cultures?

Thank you for the information! I am waiting to hear back from Dr. Cunningham...hoping to get her opinion on Penicillin and on my DS5 whose CamK was 179 and thoughts on him as to where to go next. I will be following up with DS7's Doctor about the abx because I just don't think it is strong enough to be effective!

Thanks guys! I appreciate all the input and advice here. We are prepared for the battle...thick skin;check...sympathetic and loving heart;check, check...patience, patience, patience;check, check, check! We have an understanding teacher so we will see how things go next week with homework and may have to make some changes temporarily!

This is such good information...thanks guys! Bye bye yogurt! Better safe than sorry!!!

So confused about probiotics/active cultures, etc. I am trying my best to make sure that abx don't cause my DS any gastro or stomach issues. What do you guys use...what do you guys recommend? Is yogurt with active cultures a good thing to add to his diet? What is this s. thermophilus? If this is something related to strep in some way should they have anything with this in it or not? Also, what probiotic do you guys recommend and does he even need to be on one? Thank you so much for any advice you can give!!!!

So I was just so damn happy that I convinced my son's Immunologist to prescribe my son 250mg of antibiotic for at least 6 months to a year that I didn't fight about what kind and now I am beginning to wonder if he is on the right kind? DS7 is taking 250mg Penicillin. Anyone know anything about whether this is something that is workable? Dr. K had told us Augmentin. Should I ask DS's Immunologist about this? So confused and concerned about all the different kinds of abx and what is best?!?!?

Sad tonight. Just need to hear some "it's ok" and "it's normal" for ramping up of symptoms post IVIG. DS7 is really melting down at night after school...homework is a complete disaster and we are seeing his rages that were definitely part of his exacerbation symptoms. Fists clenched, knuckles white, fire coming out of his mouth and steam coming out of his ears - or at least is sure looks that way. Screaming, hitting, etc...I could go on and on and you guys all know what I am talking about. And then the facial tics. He did all kinds of old and new tics all the way home from school. I watched him in the rear view mirror and my heart just broke and I was fighting back the tears. Been a long time since we have seen those . How do you tell a 7 year old that it is going to get better when he is telling you the medicine didn't work Mommy . He told me he worries about everything and he is still seeing the fairy's. So hard to hear Please just tell me it is going to get better.

autoimmune disease non specified is what works for us. i imagine others will be able to help!!! good luck and keep up the fight!!!!

hi there. i hope some of the pros will have some good advice for you. we have been on this journey for over 2 years but only figured out the pandas dx recently so i am still learning. just wanted to say good luck hang in there!

Awesome news!!!! Congratulations :)

just ordered mine...thanks for sharing!

Absolutely same for us yet we just know that my younger son is a ticking time bomb. Had both sons bloodwork done together and DS7 who had IVIG last week had elevated titers, Immune Deficiency and Cunningham of 163. Younger son 5 had normal titers, still normal Immune Subclasses but one very close to being low, and Cunningham of 179! I know simply by the way he responded the last two times he had strep in February and in May that he is PANDAS too, just trying to find a doctor willing to treat him with abx to prevent it from getting worse with each infection. He did like your daughter and responded well to 10 days of abx, but I know that will not always be the case. It is truly only a matter of time

I am feeling this too. This is all great advice. DS7 is 4 days post and his rage/anger/anxiety/frustration is definitely ramping up

WELL SAID! Couldn't agree with you more. MakeMinTea...find a believer...don't waste your breath on anyone who will be wasting your time...precious time to get your child the much needed help they need! Keep fighting Mom...you are doing a great job

Dr T said he wants to treat my 5 year old [sibling of another of my kids who has severe PANDAS] who has elevated titers and sep anxiety, some tics and OCD - mild at this point. my 5 year old has never had a strep infection that I am aware of, but Dr T thinks abx during the school year will be beneficial. I am not going to argue w/ that! Absolutely not! I say go for it. I am terrified every time I have to send my son to school...just waiting for that day he comes home sick . I have decided to schedule an appt with my DS7's Immunologist to have a plan in place. Maybe he would consult with some other doctors about it? Maybe I should give Dr. T a ring!

interesting! thanks for sharing. i started watching one of the videos and need to watch them all when i have more time!