texascatholic

We had IVIG 3 weeks ago. First two weeks were very rough. This past weeks I've seen signs of improvement, but it still varies from day-to-day and even during the day. Lot's of rages and not willing to do school...although it has improved a bit. Today, however, is not good. I'm wondering if an augmentin situation is coming into play here. Last Friday I noticed I was running out of Augmentin and had to reduce the dosage to one 1000mg per day. Monday she had no Augementin. Hubby picked up more yesterday and so far she's had 2 doses...now the rages are worse. I'm wondering if we are having another die-off? Has that happened to any of you when your child's been off their normal dose but went back up to their regular dose? Or, I'm wondering if we should just ditch the Augementin and go Olive Leaf. We are PITANDS..I get our IGENEX back next week. Just continually praying for wisdom!

We did an IVIG 2 weeks ago in San Antonio with Dr. Infante at the Christus Santa Rosa Children's Hospital downtown. He's an immunologist. PM me for more info! Blessings to you!

We are now 9 days post IVIG (her first one) and not having the greatest of times. Lots of anger, rages, stimming, tics, OCD...hoping things will calm down in time for Christmas. Just sent in blood for Igenex testing this week: Lymes and co-infections. God bless!

Yes, we see Dr. Rao in Plano and Dr. Infante in San Antonio. I loved your comment about the "driver's seat." I know exactly how you feel. God bless you and yours!

Hooray! Now this is what we like to hear! :-)

Neuroscience is recommending Kavinace, PRT Calm Jr., and a spray (don't have the paper with me right now but I believe it's called...) Efevex? The wierd thing was that her dopamine AND serotonin were elevated. Main symptoms are anxiety, OCD, rages, and occasional tics. We haven't tried SSRIs yet, and I'm not sure it's a good idea with high serotonin. Samsmom - I believe you can get the test from www.neurorelief.com . They have a list of local drs. for you that are familiar with the test. Our PANDAS doc is also one who treats autism (Dr. Rao in Plano) and he prescribed the test for us.

Hello KeepTrying... The Dopamine normal range numbers are Day:115-175 and Night:75-120. DD's number was 456.9 which is extremely elevated. Not sure what to do with this info, but looking forward to my phone consultation 2 weeks from now.

I can really sympathize with you. We don't know what's affecting DD9 either (low titres for strep, reacts to viruses). We just had IVIG done Wed. and Thurs. of this week for the first time. I will let everyone know how it works for her. Igenex blood draw is next week.

I can really sympathize with you. We don't know what's affecting DD9 either (low titres for strep, reacts to viruses). We just had IVIG done Wed. and Thurs. of this week for the first time. I will let everyone know how it works for her. Igenex blood draw is next week.

I can really sympathize with you. We don't know what's affecting DD9 either (low titres for strep, reacts to viruses). We just had IVIG done Wed. and Thurs. of this week for the first time. I will let everyone know how it works for her. Igenex blood draw is next week.

Hi There... I just got back our neurotransmitter test results: Epinephrine - Normal Norepinephrine - Extremely Elevated Dopamine - Extremely Elevated Serotonin - Elevated Glycine - Normal Taurine - Elevated Gaba - Elevated Glutamate - Elevated PEA - Normal Histamine - Elevated Creatinine - Normal Anyone else have similar results? Unfortunately I don't have our phone consult for two weeks, so I was curious. Blessings to all!

Went well, just dealing with headaches and minor stuff like that. We'll see what happens!

Interesting fact about Leonie...the Martin family went through so much suffering yet they did amazing things for the Church and the world. I plan on taking our family soon to go to Mass at the Basilica of the Little Flower (here in town) and thank her for her intercession. God bless!

Definitely sounds suspicious. I would check for PANDAS (via the Cunningham test) and check for LYMES. We don't have high strep titres either. This is so hard! May God grant you the wisdom you need to help your daughter. We also homeschool. Please PM me if you have any questions.

Wow, thanks for the Hail Marys! The Blessed Mother has had a hand in us getting our diagnosis and treatment to be sure. And, of course, St. Therese! May the Lord be with us and grant us His peace...

LOL, I was just going to post the website. Seriously folks, ask for her prayers. She's amazing.

I found this in an article online... "It is interesting to note that Saint Therese of Lisieux, the Christian luminary who was discussed in Chapter 3, may well have had PANDAS. Therese suffered severe bouts of sore throat all of her life and finally died at twenty-four of a respiratory illness. As a child, just prior to developing obsessive-compulsive disorder, Therese was confined to bed for a period of two months with a disorder of intermittent delirium she later referred to as "my strange sickness." The saint's aunt remembered, "the little girl was seized with a nervous trembling, followed by seizures of fright and hallucinations that were repeated several times a day." The family maid recalled that Therese had "propulsive seizures during which she made wheel-like movements that she would have been absolutely incapable of making in a state of health." The doctor called on to treat the disorder diagnosed St. Vitus' dance." Saint Therese (also called the Little Flower) is a beloved Saint and Doctor of the Catholic Church who lived in France during the 1800's. If you've never read about her, do so! You will be blessed. When we've ask for her prayers and intercession in our family, amazing things have happened. She just happens to be the patron saint of my little girl who has PANDAS. WOW!

Hi All... DD is currently at the hospital doing IVIG. Yesterday went OK except for chills and fever. Apparently (my husband is there with her today) she is having headaches and tics/jerks today. The great thing is that we ran into another member from the forums here yesterday and it was very encouraging! Hoping to post some good updates soon. We are still on Augmentin XR 1000 and I am unsure about sticking with it, although it does seem to have helped some...just worried about her digestive system being affected. Before PITANDS I was very reluctant to use antibiotics unless it was a "life or death" situation...now it's all the time! God blessings to you all, Holly

DD9 is having her first IVIG next week through Dr. Infante here in San Antonio. Meanwhile she started Augmentin 1000 XR last week and it's made things worse. Dr. Rao in Plano (who prescribed the Augmentin) said that if things are not good after 2 weeks of Augmentin, to do a Prednisone regime for two weeks (plus the Augmentin). Is it unwise to do Prednisone right before IVIG? I need to have another phone consult with Rao to discuss the upcoming local IVIG, he's unaware of it right now. Also, sending off our Igenex test kit soon. We did Neurotransmitter testing through Neuroscience and are awaiting the results. I'll keep everyone posted! Holly

Ok, so we finally are trying the Augmentin XR 1000 (twice per day) and my daughter is raging and ticcing like crazy! I thought this one would help, but no. Is there a herx with this one, too???? Thankfully we are sending out blood to Igenex this week, and have IVIG scheduled for Nov 17th and 18th. Any advice would be a blessing...

For all of you moms who are testing positive to Lymes and Co-infections, have you had any symptoms?

Hi All... Just got back from our appointment with Dr. Infante. He wants to do IVIG with her based on the Cunningham test results (she does not have high strep titres). It was a very encouraging visit. So my advice is that if you go to see him, have Cunningham results to show!

We've been in exacerbation mode due to 2 upper respiratory viruses that have gone through the family lately. We are also switching to Augementin XR (1000mg twice per day) to see if it makes a difference. I wonder, have any of you with no high strep titres seen improvement with Augementin? We are willing to give it a go. Hope it helps! Doing homeschool with her is nearly impossible these days and her papers look like scribbles (she's in 3rd grade). Also, she is constantly walking around the house making a raspberry-type noise in quick succesion...has anyone else had that. Very unable to concentrate and sensitive to light. We go in to Dr. Infante tomorrow to see if he'll do IVIG. Also, drawing for our lymes test (Igenenx) next week. God bless you all, Holly

We don't have high strep titres either. Dr. Infante was "unsure" about our daughter having PANDAS/PITANDS. When I told him about the Cunningham results, he listened a bit more. I am bringing our results with us when we go see him this Thursday. He respects Dr. Cunningham. I'm not sure if he is aware of PITANDS very much.