Joan Pandas Mom

The last e-mail I got from Dr. K (last week) said to still wait it out--that there wasn't anything we can do until 8 weeks because of protocol we wouldn't know what worked. Things are so bad now I e-mailed him again this afternoon and begged if there was anything we could do to relieve some of the symptoms. I don't care about protocol or knowing what works, I just want something to work, something to give him some relief. When it gets close to the 8 weeks and still no results (except for a few good days right after the IVIG and I was really hopeful) it gets so hard to keep hopeful. I couldn't sleep last night and I was going through the channels on TV and started watching Mother Angelica on EWTN (I love her). It was about being tenacious, trusting with all your heart and not losing hope. I taped it, I think I need to go watch it again!!!

Things are worse. Does anyone know how to test for reinfection post IVIG? I have been reading titers are not accurate for many months after. My son has always been asymptomatic. Any comments/suggestions will be greatly appreciated.

My son is going on 7 weeks post IVIG. He is still so bad, getting worse every day. How do you know if there has been reinfection? I am reading titers are not accurate for many months post IVIG. My son has always been asymptomatic so what do I do? Any suggestions will be much appreciated.

That's a good idea. I'll start researching Neuro surgeons. This sounds a little scary. Did you get a copy of the scan? You might want to have another neurosurgeon (I'm told neurosurgeons are better at "structure" dx than neurologist, who are better in the "function" area) look at the mri. Let him/her know your concerns w/ family history and see how they think you should proceed.

He was low on Ferritin too in March. We started supplements too then Dr. K. told us to try to get it through his food instead of supplements. I have a lab slip but am trying to hold off another 2 weeks to put us at 8 weeks post IVIG. I want to see where his titers are at.

Back in January he recommended repeating in 6 months or when the braces come off. I didn't know this until late last week when we were at the Pedi's office, pedi mentioned it and I got a copy of the report then. I sent him an e-mail last night with updated family history. I will let you know what he thinks.

I found out this week that the Neuro at DHMC wants to repeat my son's MRI from Dec. I never saw the copy of the report, I got a copy at pedi visit this week. My son had a very small spot on his right frontal lobe in Dec/Jan. When we saw the Neuro in Jan he wasn't too concerned with the spot, but he also noted on the report that my son had no family history of similar medical concern. My son's uncle died of a brain tumor last fall. There is such a strong family history of other cancers too. My son's father had colon cancer, my son's grandfather died of colon cancer at 43 years old., his uncle (father's brother) died from a brain tumor (I mentioned above),one of his father's sisters has colon and rectal cancer and anther sister has Lynche Syndrome. Dana Farber is recommending my children have colonoscopies from age 18 on based on the family history. My niece has Ewings Sarcoma. My son always looks so pale to me, but has energy to workout 4 times a week. As I was watching him try to enter the house tonight, he would approach the door, back off in a jerky motion, bless himself and start over. He repeated this about 15 times before coming in the house. I know this sounds like typical OCD/PANDAS but he looks so out of it, so pale. As I was watching I was wonder if there could be more to this? Are any other PANDAS kids really pale? Have any had spots on their MRI's. I am starting to think we should take his braces off early and repeat the MRI. We are going on 6 weeks post IVIG Friday.

It sounds like an allergic reaction to me too. I just noticed tonight, I was giving my son Advil, that face swelling is an adverser or allergic reaction to Advil.

Some days I think it is a little worse, some days I see things resurface that I havn't seen in a while and some days I think it might be getting better. I'm sorry, I cant' be more helpful. I'm just waiting for these next few weeks to FLY BY.

Has anyone found a great gluten free bread yet?

I think she is at Alls Children Hospital at University of South Florida.

I am sorry you are going through this. We are 5 weeks today post IVIG. We have been doing Clonazepam to get through this rough time. I am worried about that too though because it can be addictive. Right now though we need something to help get through this. I am trying to look at it as the IVIG is working. Dr. K. told me if nothing happened, positive or negative, then it would mean that the IVIG wasn't working. I know these weeks are dragging, but we will get there.

That is awesome news Peg. I am so happy for you two.

Angela, thanks for the post and good luck for continued success. Do you know why Dr. B. put your d on Azithro vs. Augmentin? We are going on 5 weeks post IVIG and are on Augmentin. Just curious.

My PANDAS son's wheat and dairy rast test came back with slight allergies to them. I am trying to go wheat and dairy free with him, but he doesn't go more than 2 days!!! I started it and I feel great. I don't get that 3:00 fall on your face tire feeling anymore! I have lots of energy and seem more focused. I also started taking Spurilina. Hi, My daughter has been gluten free for a year and I kind of jumped on the bandwagon with her about 6 months into it. I feel better!!! My daughter gravitates toward things that are good for her too so I didn't have much of a problem with her. She LOVES Chocolate Chex Cereal. Betty crocker has gluten free brownie mixes as well as cake mixes and a chocolate chip cookie mix. They are awesome!!!! Namaste makes a pizza crust mix that is delicious!!!!! We use rice noodles by Thai Kitchen and they are really good too. Good luck to you!!!! We went on the gluten free diet before PANDAS, but my daughter always had reflux problems. Her reflux is for all intents and purposes gone now!

HAPPY BIRTHDAY to Lauren, I'm so glad she is healthy again and can enjoy it. Have fun! What did Dr . K say? did he up your dose of med's can you try a different abx? Lauren is on azith Yes,Lauren is doing super with azith But she had a rash with augmention after ivig so we swiched her right away,she has a problem with abx's so we are keeping our fingers crossed that it don't happen with azith But I have read on here about a rash that developes something about the strep leaving the body or something like that?? and also she had H1N1 3 day's after ivig and i think you can get a rash with that also? I need to start writing all of this stuff down!!! I think I need to start taking her fish oil for my brain... But,hang in there I am sure it is going to get better Lauren will be 6 tomorrow and she is so excited for her birthday Last year she was afraid of it,because of starting school and I told her about a week before that 5 year olds don't sleep with there moms that they are big girls.. BIG BIG MISTAKE!! that is ALL she thought about all day

My son was on abilify in 2007 when he was 12 for almost 1 year. It may have helped a little in the first few months, but it did cause rages. He became argumentative, rude and talking back to teachers. That was NOT my son. We took him off it. He still has some rage, but they are different, they are from sheer frustration from OCD torturing him every waking moment. I think Beth Maloney was talking about the SSRI, Zoloft, that was making Sammy worse. She took him off that but he did continue with Zyprexa for a while and that helped him. We tried Zyprexa in 2009, it made my son's head feel "swollen". He just didn't feel right on it. We stopped it after a few days. We had IVIG 4 weeks ago, still waiting for improvements but a few people have written me and told me it took 6-8 weeks for their child. I'm just going to sit tight and see what happens. I never realized how long a week was!!!!!

Great news! Keep up the good work mom.

I'm wondering if it is something environmentally too. I just made apt for testing. The first apt is August. He is so bad right now, pacing, blessing, etc.

Melanie, I haven't been keeping a log but that is a great idea. It seems worse to me. I'm not sure of the dose. I think it was 2.0.

Jill, I am religious and thank you for the prayer. I'm going to print it and keep it with me. Jared is religious too, but a lot of his obsession right now about God. OCD is putting blasphemous thoughts in his head and it is really upsetting him. I will hear him saying to himself every once in a while, "It's not me God it's OCD." It has gotten so bad he won't go to Church anymore with me. We were praying with the priest at our Church and he won't do that anymore either. OCD takes over and doesn't let go.

I'll ask Dr. K. today if we could try Azith. again. Is it helping Lauren? What did Dr . K say? did he up your dose of med's can you try a different abx? Lauren is on azith

Worried Dad, did your son's symptoms get worse when you increased the Augmentin or did you notice favorable results somewhat soon?

My son is 4 weeks post ivig and his rituals are still so bad if not worse than pre ivig. I have heard 2-3 weeks are tough but 4 weeks into it? Has anyone else seen flare up for this long? I started the "sammy dose" of Augmentin last week. Could that be making things worse? I am listening to him open and close the bedroom door for about the 100th time. This is too hard.

We did IVIG 4 weeks ago. My son is still doing a ton of compulsion and I'm happy we have the summer to see how things go. I know how you feel with having to let some things go. It has been so long dealing with this and I'm finally realizing I just have to say no to some things until he is better. Good luck and please keep us posted.