Joan Pandas Mom

This is such GREAT, GREAT news. I am so happy for you and your family.

I think if it is PANDAS it is worth a try. I am kicking myself for not having IVIG years ago. Good luck in whatever you decide and hang in there.

Great news Peg. How can Allie not get better with a Mom like you? You are doing such a great job.

Thanks guys. He was cultured for strep, staph and fungus. I'll let you know how it goes. Thanks for the encouragement too--it really helps. I hope everyone has a good day tomorrow.

My son had to have a follow up MRI yesterday for a concussion he had last Oct. Every thing is fine but the neuro said he had a lot of congestion in his nose, mostly in his right nostril. The nosebleeds are from the left nostril. We saw the ENT 3 weeks ago because my son has been having bloody noses daily or every other day for a while. The ENT prescribed Bactroban Ointment for his nose because he saw strep or staph infection. I should have asked him to culture it. I am asking for a culture tomorrow--any other suggestions?

My son had T&A Dec. 2009. We had the same experience as dcmom. They were much, much worse than the ENT had thought. He also had a negative throat culture about 2 weeks prior T&A, but ENT thought there was definitely strep in them. I'm glad they are out.

Thanks so much guys. I don't think we would be here without everyones help on this Forum. I remember when this started (Sept. 2004), crying in my room thinking there has to be more going through this. I only discovered the Forum in Oct. 2009. We are scheduled for another IVIG soon. This will be the third. I forget who posted that their Dr. told them the older kids that have had PANDAS for a while, need 3-4 IVIG's. I think the med switch has been helping too. We switched from 500 mg Azithro a day to 300 Omnicef 2 x a day. Three weeks ago we started a very, very low dose of Zoloft (25 mg). My son is 161 lbs. I reread Dr. Murphy's study and she states a very low dose can be effective with OCD. Her 9 year old patient had symptoms activated horribly on 5 mg of Fluxetine a day. They discontinued and restated at 2 mg a day shortly after. He tolerated that fine but OCD didn't improve. After 3 months they increased it to 4 mg a day without adverse effects and his OCD improved.

My son just finished a sentence!!!! and made his own bagel for the 3rd day in a row. Every day he seems a tiny bit better. We still have a long way to go, but I have been seeing some progress over the last 5 days. I was really starting to give up hope, but the last few days have been better. He told me about 4 days ago that he felt "weird"; that he was able to fight the compulsions a little more, but it felt strange not to do them. He wasn't able to attend Church for many months--he was too sick. He started to go again about 1 month ago. A couple of times he looked over at me and said God was going to make him better.

Kim, we were at the Westwood Institute this summer and in 2007. Dr. Eda Gorbis is amazing. I don't know about her site and St. Therese, I will have to read it.

Thanks Elizabeth. A few bands on the Igenex were +. I don't have it with me but when I look at it again I will post. His IgM was elevated and has been since the winter. We just switch to Omnicef 2 weeks ago. I think it is helping. I thing he became resistant to Augmentin and Azithro.and possibly Biaxin. He has been on abx for 1 year now yet had either strep or staph in his nose when we went to the ENT 2 weeks ago.

Has anyone had PEX after having IVIG's. Would Pex wipe out any progress from the IVIG's? My son is a tiny, tiny, bit better (yesterday was 6 weeks post IVIG #2). I have been tossing around the idea of PEX too, but am wondering if it is too late.

Hi Judy, I know it is really, really hard right now, but I think the majority of parents here have stated symptoms get much worse before getting better--the "turning back the pages or herxing effect." Try not to worry, from what I've read it could be a good sign that IVIG is working or going to work.

Suzan, what make your doc test for HHV-6. I was reading a really interesting article a while ago about a possible link to OCD, MS and HHV-6. I had never heard of the virus before. I am interested in having my son tested. There seems to be a few parents here too that have had some relief from antivirals. Maybe it's worth a try.

Kim, Thank you for this. I don't know how I missed this I'm just reading it now. PANDAS is making me lose my mind! I'm wondering if the Bactroban the ENT prescribed will clear what can be seen by eye. Something tells me to have the CT regardless.

P.Mom so glad your son is doing well. I want to share our T&A experience because I feel I made a mistake on the timing of sending my son back to school. I feel I sent him back to school too soon after T&A. I think it was 3 weeks after. He was doing pretty good 3 weeks post surgery, but after starting school for a week or so symptoms started back. I don't know if it was reinfection or stress or both. Good luck with continued speedy recovery.

We went to the ENT a few days ago. My son was having bloody noses a couple times a day for about 2 weeks about 5 weeks ago. The ENT said he had either strep or staph in his nose and recommended Bactroban antibiotic ointment for 1 week. I mention to him that he was on Azithr and had been on it for 3 1/2 weeks, prior to that was on high dose Augmentin. He said that will help. Evidentially it wasn't helping because he had this infection. Thank God for Dr. B. I e-mailed him, he changed his script from 500 Azithro a day to 300 mg Omnicef twice a day. I'm hopeful this change will make a difference. Both Dr.'s recommended a cat scan in three weeks if it doesn't improve. My ? is how will I know if it improves? You can't see the sinuses unless you have a cat scan. Will the Bactroban Ointment take care of the visible infection, still leaving a sinus infection deep in his sinuses? My son NEVER has visible symptoms. His pedi did a throat culture and ASO titer on him 6 yrs ago when this started because he had just heard about PANDAS. He did not have any strep symptoms at that time.

I never knew that, thank you.

OH, THANK YOU FOR THIS. I can't tell you how good it is to read something like this when you are in the middle of it.

Can you go to one of the docs that treat PANDAS listed on this site? It sounds like PANDAS to me.

We had the exact same situation here.Before they came out the ENT said they didn't look too bad, but given his PANDAS symptoms he took them out. My son also had a negative throat culture 2 weeks before having them out. Sure enough, they were infected, ######, gravely. The ENT said he was surprised they didn't give him more problems.

LLM thank you for your post and I'm so happy things are going better for your family. This is such a long, hard journey we are on. It really takes its toll. If you have time, if not I COMPLETELY understand, what lyme protocol is your son on?

Angela, I am so sorry you and your family are going through this. It gets really difficult. Have your son been tested for Lyme and related tick diseases through Igenex? Has he had an MRI?

He had a nasal swab about 7 months ago that was negative. I'm not sure if it cultured the sinuses though. The ENT today could see his nasal passage way was infected (had a little crusty stuff in there).That's a good about if the CT showed anything. I wonder what they would do differently if something showed on the CT. DS has been on different high dose abx for 1 year now, we have tried Augmentin, Biaxin, Azithro, Clindymicin,

I hope everyone is hanging in there. I haven't been writing, busy taking care of sick son. We are 4 weeks tomorrow IVIG. It was our second one. We are seeing 5-10% improvement, but backsliding over the past couple of days. DS was having bloody noses about 4-5 weeks ago, daily for about 3 weeks. Dr. B. told me to take him to Dr. here. We saw the ENT today. DS has either a strep or staph infection in his nostrils. ENT gave him Bactroban ointment and wants to wait to see how he does over the next few weeks before giving him a cat scan. DS is on 500 mg Azithro daily, has been for 3 1/2 weeks now. Has anyone had a sinus infect. detected only with CT? I hate to expose him to the radiation, but could this be the piece we are missing? What is the typical abx for staph or strep in sinuses? Thanks for any suggestions.

Is low being 1g/kilo or 1.5 and high 2g/kilo?