tired mom

You get it You really Do. I'm crying as I'm this writing this because we all know that feeling of not knowing what to do next. How do you get Cunningham tests done. Again, Thank You.

The np told me to get aso titer and dnase b bloodwork. Where do you get CaM kinase ll testing done. This particular place said they did not know of a lab to have it done.

No I did not get a diagnosis. I had documented proof of symptoms improving on antibiotics. One was written by a psyc who said Pandas is very plausible in this case an should be looked into more. THAT WAS 4 YEARS AGO. When the nurse practioner called and said dr. n does not think it's pandas I had alot of Questions which she responded with i went over everything with the dr. Does she fit the criteria yes to a tee!! did I take all the sore throat records with me yes what stunned me the most is when she didn't seem to think rages and anxiety were connected with Pandas. As far as your question about the bill Part one is patient intake part two is evaluation and feedback (does not accept insurance) I still can not believe I never meet this Dr. nor did she call me with any type of results. I feel so depleted.

you r exactly right about having limited time. Thanks for your words of encouragement.

I'm so sorry. I have a teen, too, though his first exacerbation was at age 8. I think many, if not all, of us know the feeling of running your head into a wall in an attempt to get help for your child. Have you considered contacting Dr. T or Dr. K? My son is a patient of Dr. T's and while he's sometimes tough to get a hold of, he's very dedicated to these kids and you won't have to work to convince him of the impact or severity of her symptoms. Gat's mom Thanks for the understanding. My daughter's first exacerbation was at 10. I just took my son to the dentist and I was reading a mag. there and came across an article on Pandas. It said 37% of children will not have elevated aso titers. That is a large percent.

Recently, I was advised to take my 17 year old daughter to a "professional" who "specializes" in PANDAS. I will not mention any names, but I will say that she supposedly helped someone's son.. this was publicized recently in a book form... Got the picture? Ok.. first appointment. Documentation 3 hours. Daughter seen alone (aunt and uncle accompanied her)- daughter is dillusional when it comes to family... but somehow her "word" was taken as gold. DID NOT SEE DR. SAW NURSE PRACTITIONER. Second appt. Parents only. 2 hours with NURSE PRACTITIONER. Went over same info. that was given via phone in prior appt. (Could not be in same room with daughter - she has meltdowns, so Mom was present first appt via phone) Both these appointments consisted of compiling my daughter's medical history, and her exaccerbations coinciding with illness. Did my daughter have many strep infections as a child? Yes. Did she have her tonsils removed? Yes. Did she exhibit OCD symptoms on and off? Yes. Were her exacerbations stronger every time around? Yes. Did she have motor or verbal tics? Yes. Did she ever rage? Yes. To name a few... After compiling all this data, driving 3 hours, spending the nite in a hotel room because appt was rescheduled due to storm, and getting my hopes up, again, that someone with a specialty in this area would take interest in my daughter and actually want to help her, I received a phone call today, a week later, from the NURSE PRACTITIONER, who suggested prozac!!!!!!! Not sure, they say about PANDAS, but my daughter was on many meds of this sort, and only became more symptomatic. She didn't seem to see a correlation between rages and PANDAS (?!!) and pretty much, after $1000, not once ever meeting this Dr., I am left right where I started... Has anyone else had experiences similar? And, does anyone know of cases diagnosed after child is a teenager?? Any successes? Please help. I am so disheartened. Thank you!!!

Yes I do. First episode happened at 10 years old. I even went so far as to have my house blessed by a priest who had experience with possesed children. No evil in my child or home. Thankfully!!!!!!.At this time my child was simply diagonoised with a severe case of ocd. Nine months later my child was normal again. Eighteen months later symptoms returned and we found ourselves back at the psychiatrists. After a year of meds. that just were not working I started researching the most severe cases of ocd and stumbled across Pandas. OMG I thought this is it. Sadly not many docters in my area know how to treat it and some never heard of it. Long story short the second episode lasted over a year. Now my daughter is 17 and although we have had some normalcy in our lives this past Oct she had mycroplasma p and symptoms are presenting themselves again. Seeing dr.N in Jersey. Hopefully this time I get some answers.

please help me understand how mycroplasma p affected other pandas children. my daughter had it in the fall and symptoms did increase. any info will help Thanks

I know what your going through. Been there and know that feeling of despair. My mom is still there for me and my daughter is now 17. Don't do the psyc ward they would not have a clue. BELIEVE ME!! A supportive family and people willing to help you is your best choice. Is your daughter better at your mom's or is her behaviour the same there? It seems to me that that alot of these children target there moms. Thank you, Thank you for saying that about the "moms"!!! I am printing this out so I can carry it around and show it to everyone. It is gonna save me a lot of talking. I get so tired of defending my relationship with my son!! I have to explain this aspect of the disease to everyone...even my biggest supporters and the people who "understand" the most!! I really get tired of explaining it to my husband every other day!! It is so frustrating!! Nobody gets it!! And I'm tired being made to feel like a bad mom!! I'll be the first to admit things aren't pretty here...there are good days and bad days for both of us...but we are plugging along. And I feel that when we get through this...our bond will be that much stronger. Well don't want to get off topic...just a BIG THANKS!! Thinking about you EarnestFamily!!! Glad I was able to help in some way. I have been going through this a long time and now my sister is experiencing the same things with her 7 year old. She is also on this forum as nomoz. Hope we can all continue to help each other a day at a time........sometimes minutes at a time!!!!!!!!!!! good luck

I know what your going through. Been there and know that feeling of despair. My mom is still there for me and my daughter is now 17. Don't do the psyc ward they would not have a clue. BELIEVE ME!! A supportive family and people willing to help you is your best choice. Is your daughter better at your mom's or is her behaviour the same there? It seems to me that that alot of these children target there moms.