texascatholic

Hi There... I haven't been reading or posting on this board for a long time, but just wanted to say that although my dd(11) still has PITANDS, we are still making good strides with homeopathy. I hope to be more often to catch up on the news of what's going on out there and to help others as I can. God bless you all... St. Therese the Little Flower, PRAY FOR US (she was thought to have suffered with PANDAS)

Thanks so much for your update! Very encouraging as we are travelling the homeopathic highway as well. :-) God bless, Holly

You could always try Joette Calabrese. We speak to her using Skype. She's located in upstate New York. God bless! Holly

Hi there... We went the IVIG route (several times with DD10) but are now doing homeopathy and the GAPS diet. Our homeopath is Joette Calabrese (google her name for her website). We've had a lot of improvement even though we are still working through issues. For us the antibiotic usage wasn't accompanied by dramatic enough improvement to continue its use. Hope that helps! God bless, Holly

Hope it goes well! God bless you and yours.... Holly

Thanks...I might send this to my homeopath. :-)

I am glad you had a good visit with Dr. Rao. I've always felt that he has a good handle on the totality of the situation. We are working on getting a referral to go back to Dr. Infante for a check-up visit. Hoping the best for you all! Holly

From what I can see you should get on to a good Vit. D. supplement. I've been thinking about you all and hoping you are doing well. We are supposed to go see Dr. Infante next week. Still trying the more naturopathic/homeopathic stuff which has its ups and downs, but seems to be improving things little by little. God bless! Holly

Hi Julie! We were GF for a number of years but didn't make a dent in things for my daughter with PITANDS until we implemented the GAPS diet and started homeopathy. Our homeopath is Joette Calabrese and she's helped us a great deal. After day 3 on the intro for the GAPS diet I saw signifigant improvement in DD's handwriting. Now after a few months of homeopathy things are so much better! Very few tics and some liveable OCD, but the rages are SO reduced. Things are much more peaceful around here. We are all doing GAPS as a family because we are all gluten-intolerant. We've been on GAPS since last March. Full-GAPS is much easier than intro. I had the added bonus of not gaining as much weight as usual with baby #6 and he's gaining weight just fine while nursing with me doing GAPS. My daughter has gone through 6 rounds of IVIG (the last one was in May) and has been off of any antibiotics since March. We are very grateful! Just using probiotics, Omega 3s, Vit. D, Fermented Cod-Liver oil. I intend to continue to update the group on her progress. God bless, Holly

I'd be interested in hearing about when the meetings take place! Although we may be moving from this area...however, not until summer, most likely. Thanks! Holly

Still urging folks to give the GAPS diet and homeopathy a try! We've also done IVIG (6 times!), but have seen the most improvement with these other measures. Hoping everyone has a great day... God bless, Holly

We use Theraneem Organix toothpaste which is cinnamon flavored and homeopathic friendly. Still seeing good results with PITANDS DD9 and homeopathy plus the GAPS diet. God bless, Holly PS - Just had baby #6 a few days ago! He's doing well.

I've had some success with my PITAND DD9 lately. Working with classical homeopath Joette Calabrese. We are off of all antibiotics and our only supplements are BioKult probiotics, fermented CLO, EFAs, and the homeopathic preparations that she's been prescribed. Also doing the GAPS diet. Our home is a much more peaceful place. :-) God bless, Holly

We did have off and on periods of die-off during the intro phase of the diet...oddly coupled with a drastic improvement in her handwriting. The results from the homeopathy have been more stunning than with the diet, though. Check out Joette Calabrese if you want to look into that modality of healing (www.homeopathyworks.net - I think that's the website). We do consultations through Skype. Still doing GAPS after 6 months, and plan to continue for at least 1.5 years. God bless! Holly

We are doing the GAPS diet (a more intense form of SCD diet) and homeopathy....have seen great improvements with both. Please PM me if you need more info. God bless! Holly

So far so good with the GutPro. My other children are taking BioKult. I avoided it for my PITANDS daughter because of the strep thermophilus... However, she seems to be tolerating my homemade yogurt OK, so we may switch to BioKult soon. For now, though, the GutPro seems to be fine. I (and my other 4 children) am also doing the GAPS diet and it's been good for this pregnancy. Also just had a consultation with the homeopath for myself and am looking forward to some positive changes with our health in the near future. God Bless... Holly

Hello to all, I know it's been several months since I posted here. We decided to abandon antibiotics back in Feb/Mar. That's when we started the GAPS diet. I saw overnight results (especially with handwriting). Things had been getting better little by little. It was hard to tell is the IVIG sessions we had were what made the difference. They decreased the OCD, but the tics increased. Enter homeopathy.... I started my DD9 (pitands) with a remedy called Bright Spark (native remedies) and saw some differences! It was then that I actually decided to go through a professional homeopath (using the services of Joette Calabrese). We do it over skype...pricey, but so far I have seen some great results. After a year of having intense struggles with going to Mass, we've actually been successful the past two Sundays (she knelt when she was supposed to, tried to follow along with the liturgy, and barely noticable tics compared to what we used to have). When I told her we were going, she actually said, "Don't worry Mom, you can count on me." This meant I could actually deal with my 1 and 3 year olds instead of worrying about her behavior. So much more peaceful. Way less ragey. Her tics are way down. Mental clarity is way up. Once again, we've been off antibiotics for months. We used to be on motrin everyday to survive. Her only supplements at this time are her homoepathic remedies, homeopathic cell salts, GutPro probiotic, and Fermented Cod Liver Oil. We are still doing GAPS strictly, but it is a surprisingly full diet once you get the hang of it. I made an awesome GAPS-friendly German Chocolate Cake the other day with coconut flour. I am sharing this for those who may want to try something different and more natural. I know many are going to ask what her remedy was...the chronic constitutional remedy prescribed was Hyoscyamus (read about it...would fit a great many PANDAS patients!). She is also using Streptococcium and Tuberculinum and miasmic remedies...along with Bioplasma cell salts. May I stress that it is imperative in cases like PITANDS/PANDAS you work with a trained homeopath...don't try to go it alone. I hope this helps someone out there.... I know we're still early in the game, but I will post updates here and there as things continue to improve. All I know is that althought there are still some symptoms for sure, life is a lot easier around here, and I don't have to worry about what those antibiotics would do to her system anymore. (We were on Augmentin 1000mg twice a day, and motrin 200mg twice a day). This relief is coming just in time for baby #6 who is scheduled to arrive in 8 weeks. :-) Thanks be to God (and St. Therese for her prayers).... Holly

Resorting to homeopathy here, too. Just getting into it. Which remedy have you tried that has been helpful?

Currently in the midst of a GAPS diet experiment here with my whole family! I plan to update the group soon about it. The GAPS diet has really seeminglt made an impact on us even though we've only been on it for 2.5 weeks. Please look into it! I will be updating the group soon... Holly

Hi There! IVIG went well. Of course she had headaches and nausea (mainly the first time) but that's normal. She's had it 4 times now. However, after each infusion we have an upswing of negative behaviors lasting about 2 weeks that's no fun. Glad your appointment went well with Dr. Infante! God bless, Holly

Thanks...I will look that up on youtube. She has strange movements often. Good point about the antibiotic treatment, Chodnett. The confusing thing about all of this is that we've never had high strep titres. Also, IGENEX came back negative (although band 41 was positive) so far. She seems better right now. Weird, wacky stuff.

We had our third IVIG a week and a half ago. I think DD is still in the yucky post-IVIG stage that we always have. Today there were two new symptoms: a 30 minute period of being catatonic preceeded by a strange dance-like walk with one leg dragging. The funny walk was at church along with a bunch of complex tics. Just wondering if your child has experienced this and what does it mean (streP?). We are currently on Augmentin XR twice a day (1000mg) although strangely I've been thinkging of getting of antibiotics (if possible) and going to naturals. I know this may not work, but plan to speak with our doc about it later. I also want to try antivirals since she really reacts to viruses.

Hi there... I'm working with a couple of docs (Dr. Rao - where we get our augmentin, and Dr. Infante - where we get IVIG). She has OCD and tics as well as dyslexia/dyspraxia, occasional rages, and hyperactive behaviors. I've been wanting to try more antivirals since after every virus we have bad exacerbations. We've done the Cunningham test and her Cam score was 139. Her anti-dopa 1 was elevated. The Igenex came back "negative" but we're still open into looking into lymes in the future. We've been on antibiotics for 6 months. So far, we've had 3 IVIGs and have seen improvements. However, for about 2 weeks after each infusion we have some pretty bad times. :-(. I'm always attracted to "natural" means and am willing to give it a go. I'll let you know what we come up with. Thanks for the info! Holly

My DD9 (PITAND) seems to be having yeast struggles after 6 months of antibiotics. I'm thinking of doing the GAPS diets along with going to natural antimicrobials/antivirals instead of our Augmentin. Am I crazy??? :-) Please tell me what has worked for you. I'm going to put all 5 girls and myself on GAPS starting this Lent. Hoping it makes a difference. We've done SCD for short periods of time and found it really beneficial. Thanks in advance... Holly

Actually, my DD9 had that as her dopamine1 score and I was told by Dr. Cunningham that it was considered high because it was almost twice the normal mean. Does your child have a lot of OCD? Mine does and apparently the dopamine1 score correlates with OCD. God bless!