philamom Posted January 7, 2011 Report Posted January 7, 2011 I've decided to post an update on my daughter. She is almost 4 months into treatment, and we are seeing many positive gains. She started treatment mid September, and after some minor herxing, reactions to illnesses & exposure to strep, she was doing fairly well by Halloween. We then did her 4th IVIG, and she lost many of the gains she made on the combo of abxs. Ironically, she herxed the most on her 2nd ivig (just finished two rounds of Flagy--lyme treating abx) and her last ivig (7 weeks into lyme protocol). Things began to settle five weeks after the infusion, when I took her for a dental cleaning and many symptoms returned. One of the most apparent symptom that started the minute we got home, was major squirmish movements...like she needed to get out of her own skin. It looked a lot like yeast symptoms (from what I've read here). It was different than the usual surge of ADHD and impulsiveness that happens to her with the ivig. She also had increased oppositional behavior just like before. Things have once again settled. She still does have some remaining fidgetiness, but overall things are going very well. Here are some things she is doing since treatment: going to bed without a fight sleeping thru the night--no constant nightmares doing chores goes to school-loves school. she even sang "santa baby" in front of the class doing well in school-good grades going to movies, even saw two 3D movies Her ocd is very minimal (mainly some remaining hoarding), her phobias are still present but at a very low level, and she has some very minor anxiety. We still have some oppositional/defiant behavior, but hopefully that will diminish as well. She is back to giving me lots of love & smiles--well, on most days. Just wanted to post for those who are struggling right now. I know this may change (again), especially since we might be switching or increasing abx shortly, but I'm keeping my fingers crossed. Thinking of everyone and praying for recovery!!
sf_mom Posted January 7, 2011 Report Posted January 7, 2011 (edited) Yeaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhh!!!!!! Congratulations on long hard fought battle on behalf of your daughter's well being. I look forward to hearing more of her continued recovery. -Wendy Edited January 7, 2011 by SF Mom
JAG10 Posted January 7, 2011 Report Posted January 7, 2011 Way to go, Melinda!!! "Santa Baby" must be your new favorite song All my best! Jill
RNmom Posted January 7, 2011 Report Posted January 7, 2011 This is really encouraging to me as we are treating Lyme and PANDAS as well. Our ds14 has been on Lyme meds since the first of November, 2010... maybe our son will be feeling and acting better in a few more months too! Thank you and congratulations on your progress.
Fixit Posted January 7, 2011 Report Posted January 7, 2011 i am new to the lymes thing....and HAVE SOOOOO MANY QUESTIONS.. i cant even keep my thoughts straight... i think my little brain is full... so i will likely keep asking the same questions over and over... are you saying that you are getting the most results from the lyme treatment??? are you saying that ivig was a waste of time??? or are you using it in conjunction with the lyme treatment?? when you said some things returned after a dental cleaning...did they eventually go away??? Do you have a percentage of how much better things are overall...50%..70%??? why do you think things will change again???when you change abx??? a new herx thing???? i am so overwhelmed...it took so long to feel like i had an idea of ins and outs of pandas....now this
Suzan Posted January 7, 2011 Report Posted January 7, 2011 Awesome, thank you for the update. I needed it today! I am so glad things are going so well for you guys.
JuliaFaith Posted January 7, 2011 Report Posted January 7, 2011 Thank you so much for sharing your experience. We are also on 2 mos. treatment and hoping for some relief soon. Keep sharing and best wishes on recovery! Julia
philamom Posted January 7, 2011 Author Report Posted January 7, 2011 (edited) i am new to the lymes thing....and HAVE SOOOOO MANY QUESTIONS.. i cant even keep my thoughts straight... i think my little brain is full... so i will likely keep asking the same questions over and over... are you saying that you are getting the most results from the lyme treatment??? are you saying that ivig was a waste of time??? or are you using it in conjunction with the lyme treatment?? when you said some things returned after a dental cleaning...did they eventually go away??? Do you have a percentage of how much better things are overall...50%..70%??? why do you think things will change again???when you change abx??? a new herx thing???? i am so overwhelmed...it took so long to feel like i had an idea of ins and outs of pandas....now this Fixit- some great questions...I hope I can help. I remember feeling so hopeless when I received my daughter's positive lyme test, even though she was not at her worst, symptom wise. Review of our history- Beginning at age 2, my dd would get constant colds that almost always turned into sinus infections. When this happened, her personality would change. In 8-10 days the doctors would then treat her with abx and the symptoms would resolve. At age 5, she had a severe onset of symptoms, including ocd, tics, urinary, sensory, emotional, (everything we read about here). She was treated with abx for sinus infection, and later for a c-diff infection. 90-95% symptoms resolved in five months. We first learned of PANDAS at the end of this episode. A year later, she had another exasberation. Resolved for the most part with antibiotics. 6 months later, another. This time she had PAN sinusitis, and was put on 3 weeks of abx and 7 days of steroids...again most symptoms resolved. March 2009, another episode. Abx didn't work...helped a little. June 2009: paid out of pocket for ivig with Dr. K. It helped some. Nov 2009: Dr. K & Dr. B both agreed she needed another ivig. Got a year's coverage with Dr. B. Dec 2009: her face became very pale, had major onset of heartburn/GERD Reflux. She vomited in our car, which turned into a severe fear that eventually had her unable to step out of the house for 3 months. Feb 2010: she had Giardia and was treated with flagyl April: she had c-diff and was treated with flagyl April: with therapy and the antibiotic change, we got her to CT for IVIG with Dr. B. July: another IVIG with Dr. B. After returning home, we received the positive lyme result in mail. started on zith. Sept: saw an llmd. Added in Amox. 2 weeks later added Tindamex on weekends. Nov: another IVIG. Dec: addded in Minocin. Sorry, lots of details. Questions- 1)Yes, I feel I'm getting the most results with the lyme treatment. 2)No, I don't feel IVIG was a waste of time. The first one (that cost us 9,000) didn't help much...some. The 2nd and 3rd helped a lot with her ocd..but not all symptoms, especially anxiety. Then we started treating with the combo of abx. After initial minor herxing on the Tindamax, I saw great improvement. Then we did the IVIG Nov 1st/2nd and lost all the improvement we made with the Tindamax. We are just getting back to where we were before most recent ivig, maybe even better. We also just added in Minocin (DEC 12th), and again, after some minor herxing we are seeing improvement. 3)I have decided to hold off on ivig for the time, and just treat with abxs. 4)Most symptoms are now reolving from the dental cleaning, except the squirmish movements and some oppositional behavior. 5) I feel my daughter is at 85% right now. Yeah! We did omit the Tindamax on two weekends (when she started the minocin & at x-mas, and each time she herxed for 2-3 days after resuming it. 6) Yes, I'm assuming a herx with abx change. She does seems to herx with all medicines/supplements. Although, I thought things would be a lot rougher with the Minocin...but just minor (2-3 days behavorial). Of course, this is just my scenario. Always here to help if i can... Melinda Edited January 7, 2011 by philamom
Fixit Posted January 7, 2011 Report Posted January 7, 2011 That was great reply!!!...i like getting the details...i can than disect it.... it gives examples.. sets some expected reactions and recoveries.. 85% is great!!!!! i feel like that may be where we are now..post internal parasite formuala he did.... i just don't know if i am emotioanlly ready for a retreat...with herxing ....as i sit here with my ds8 ticcing,home from school with mono......and wondering if the 3 year old is reacting to all the illness around him..... THank you for the reply!!... I have to ask ....and if anyone else could reply.... Can we get these kids to 100%???... It seems from the posts, that the parents here arent' expecting what ever progress they made to hold?? is that true..or am i reading into it???..... Are lyme doctors farther ahead in their understanding and protocals than panda docs.... at this point i just want a plan i can follow...AND LET GO!!!!
philamom Posted January 7, 2011 Author Report Posted January 7, 2011 Fixit- it's soo hard to give percentages, because in some ways she's closer to 100%...others 85%. We were dealing with severe seperation anxiety. She followed me everywhere, even to shower. Now she's asking me to sign her up for after school activites for 3 of the 5 school days. She no longer cries in desperation, hanging on my leg, when I leave the house. So I would say that is darn close to 100%. But her sweet demeanor that I finally saw prior to this last ivig and dental appt. has not returned completely. But yes, I do believe we can get our children back to 100%
Fixit Posted January 7, 2011 Report Posted January 7, 2011 Fixit- it's soo hard to give percentages, because in some ways she's closer to 100%...others 85%. We were dealing with severe seperation anxiety. She followed me everywhere, even to shower. Now she's asking me to sign her up for after school activites for 3 of the 5 school days. She no longer cries in desperation, hanging on my leg, when I leave the house. So I would say that is darn close to 100%. But her sweet demeanor that I finally saw prior to this last ivig and dental appt. has not returned completely. But yes, I do believe we can get our children back to 100% #1 bold item...same here, i get it... #2 bold itme....I LOVE YOU!!!
sptcmom Posted January 7, 2011 Report Posted January 7, 2011 Thank you for posting that. What a wonderful read that was. I am so very happy for you. Jodie
PacificMama Posted January 8, 2011 Report Posted January 8, 2011 Melinda, Such great news! I remember, what seemed like not too long ago, when you were in a desperate place with your daughter. It's so wonderful to see how far she's come. Mary
justinekno Posted January 8, 2011 Report Posted January 8, 2011 Melinda, Thank you for posting your story. We are at 3 months of treatment and so it's nice to hear some encouraging news. I'm so glad your daughter is doing better.
cobbiemommy Posted January 8, 2011 Report Posted January 8, 2011 Melinda, Thank you for your story. It gives all of us on this crazy crooked path some hope! Thanks so much! Cobbie
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