chodnett

[i was told by MC or someone who responds that Cam K test is just for children> Is that not the case anymore?

I am usually on PANDAS forum but want my daughter to see a LLMD to rule out. I am having a very very hard time finding one or even how you find one. What in the world is going on with this?? I am so confused, does the medical community not think LYMES exists either? HELP

how do you get rid of infection in sinuses?

Fix it this is my daughter. Neverending tics. On antibiotics they cleared but came back after 2 months. IVIG behaviors cleared(mostly) but tics still there. What have you found to remedy.so frustrating. have not had T&A out but have appointment with ENT. Would love to hear others thoughts.

How can we tell if we are battling yeast problems?

I need thoughts on why my Daughters tics are not going away. She has been on Augmentin XR for over a year and has had 3 IVIG treatments. We have found all (most) behavior issues non existent and realize if the tics would leave we would have our daughter back. I am loosing hope that they will ever go away. Any thoughts to help??

After many years of going to people doctors and many many family titers testing, I now have my eyes set on one of the dogs being the culprit. We got dog JAN 08 and then a few months later everything when wrong. Why did I not see this until now???? Still, my daughter is better on antibiotics and has had 3 IVIGs, but I think dog is reinfecting her. Could this be???? Right now Dog has Blood blister type cyst on her chest. But after I asked for a month of antibiotics just to see what happens I found by giving double dose of prescribed not only is the blister getting smaller. I feel like daughters tics are better too. Might also be from the IVIG. I still want to pursue running blood tests on dog. I am having a hard time gathering my thought on what to say to Vet and what blood tests I will need to get. Does anyone have any thoughts to help me out. I have brain fog myself right now. TOO much on my plate. Thank you

√√√ I love this one it really hits home!

You are an amazing girl. I cannot believe all the self advocating you have done and you are only 15. I have a fifteen year old son who does not even understand what is going on with his sister. You are going to do something Great in your life!

I called to schedule an appointment with Dr.I in San Antonio and was turned off right at the point when we got to his treatment. We have high titers, we have MC test, we have had and are on antibiotics, and we have done 2IVIG. His assistant said Oh I thought only one IVIG is treatment. Then all my hopes of a closer Dr. went out the door. We did not go any further with him.

Where does it redirect them to??

I need to look into Lymes for my children and am looking for a dr. in Dallas/Ft Worth that is very versed in Lymes. Any recommendations??

I live in fort worth, who in the world ordered Madeline cunninghams test for you? A doc in Dallas? I am curious who it is since I could never get any response from doctors in Ft Worth and Dallas? Now fly far away for treatment. This is great news! It took two weeks to get our results back.

I am sorry I did not respond to your question this is still hard for me to figure out. Yes, we were regular dosage for 2 weeks--- no change at all. Then after trying to figure out our relationship with away dr. >>>to home pediatrician>>> to us--confusing to even write. He doubled dosage, still no change. I said finally, I know Sammy Maloney had success with AugXR so I said that is what I want to try. After a few weeks on 2000 mg symptoms got eerily quiet. We were like this whole nightmare was going away!! Then it returned 4 months into still 2000 mg of Augmentin. OUCH!! I had seen Lauren Johnsons progress on the Today show over the 3-4 months they tracked her and could not believe the progress. I knew we were headed for the IVIG. My daughter is better but not healed completely. We have had some regression but she seems to bounce back quicker. Her PANDAS???? Who knows how long she has had it. MC asks about scarlet Fever. Yes, she had it at 1 1/2 yrs. but symptoms hit overnight and hard in 4th grade. She was diagnosed with Tourettes?? I said what no blood work?? Dr. said NOPE that is what she has and he is happy to give meds for tics. That was almost 4 years ago!! We did not figure this PANDAS out until last year. All her recovery has been in the past YR. She has made huge strides. We still are hopeful for 100% better with IVIG. That is our story I know everyone has a different experience. But I had so many doors shut in my face when I brought up Could SHE Possibly have PANDAS??? I would hope the info is more current for doctors to accept it as a real diagnosis. For us we will stick with the doctors who have believed and treated all along. So I heard they are not going to call it PANDAS anymore, For me, I don't care what they call it I just want them to treat all the poor children who are suffering from it.

We have not checked for Lymes but she has never been bit by tic. Or am I being ridiculous there are many ways to get Lymes. We have tested MC test and have PANDAS and are in IVIG treatments We also have high strep titers that continued to drop with antibiotic treatment. Not any other infections with extensive blood work, including some Lymes testing (not extensive). So, should we test for Lymes?

Yes, Your story is unbelievable that even with all the press on this. Doctors in Texas are still not budging. It is wonderful you found an immunologist to help. I live in north Texas we have gone to doctors that said that is a controversial diagnosis (without even looking at my daughters blood work) to look for infection. That was almost 2 years ago. When will they wake up? We travel out of state for treatment and I would highly recommend getting Madeleine Cunningham's test for your son. It will tell you if he has PANDAS. Good Luck.

I have read older posts and know this has been a subject matter, but still would like to get information on this. My d has had this happen a few times before. Yesterday, she had vision changes while she was at school. She described it as she could read her books but could not read the board and everything far away had a halo or fuzzy looking. She had a headache and took 2 advil and made it through the day. She amazes me at what she is able to do. She is only 12. Has anyone found out what is going on when this happens/ if it happens at all?

I was told by a doctors nurse only one IVIG treatment is necessary for PANDAS. If that does not work then you do not have PANDAS something else is going on. Will a second IVIG make matters worst?

is this just a coincidence?

Who is the Doctor who does IVIG in PLANO?

pamsboy did you post this to me.

we were on Omnicef low dose nothing happened. Switched to AugmentinXR 2000 day and saw results in 10 days. Some Symptoms returned within 3-1/2 months. Tics mostly. still on Augmentin but has done 2 IVIG treatments. They work. she would be unable to function without them. It keeps getting worst the longer you wait. That is a short version of our story. It is very LONG as I am sure everyone feels the same way.