Suzan

Yes, my dd was on 500 mg for months. She did really well on it. It could really help. Susan

I was finally planning on getting my girls IgG tested for food allergies but it just dawned on me that maybe I can't do that for dd8 who had IVIG 2 weeks ago. Would IVIG affect the results of this type of test? Thanks, Susan

I agree, thanks for posting. We are 1 week past our 2nd low dose IVIG. I assume we are working towards higher doses. So far, I see some nice changes but I'm still waiting. I am glad you see the benefits and are hanging in there for more healing. Susan

Gives me hope that I may have my room back some day, Thanks, Susan

My 7 yr old had seizures from when she was little. We first noticed them when she wsa 3 but she probably had them younger than that. Hers were where she just stared off for 5-10 seconds (no convulsions) although sometimes she would walk off or try to climb something. They had no aura that we know of. 48 hour video EEG showed that she was having hundreds a day and we could only see the ones that got long enough. I would see about 10-20 a day. Depakote and Tranxene mixture was what finally stopped hers after trying many different types of meds. When she went gluten free, they went away so they now believe the gluten was causing them but of course we don't really know. Susan

Thanks everyone, she has not had IVIG yet but I did just start her on the GABA Plus that the neurologist suggested. That is the only thing new. I asked her to let me know when she feels like pulling out her hair again. She confesses so I think she will tell me. It came up in conversation this morning as I was brushing her hair and hurting her since it was so tangly. She does seem to pay close attention to my eye brows and often wants to pull them. I wonder if it's somehow related. Susan

dd7 told me this morning that she likes to pull her hair out sometimes. She says she only "pulls out a little". Do I need to freak out? She seems to be doing well right now. Her OCD usually is around food and hoarding. Not so much of either at this time. Maybe her OCD is mutating? Susan

Congrats! I hope your doc will understand. You have to give this a try. I hope it does the trick. Susan

Our neuro was considering trying it with dd7 (6 at the time) if we could not get control of her seizures. Luckily we found the right meds and then taking her off gluten was enough to stop them. If she did do it, it would have started out in the hospital under close watch and then after she would have been monitored very closely. But that was considering the ketogenic diet and she was onl 6. At age 18, I think with attention to the typical things a low carb diet suggests (vitamins, supplements, etc.) it could be worth a try. Susan

Thanks, that helps, we are doing low dose though. I know I need to call the neurologist and ask all these questions. Susan

I'm a little confused about the product because there seem to be two or more out there, one like you see below and another that has herbs in it http://www.greatestherbsonearth.com/nsp/gaba_supplements.htm. The one I got from the place the neuro suggested (not sure the brand off hand) has what you see below plus taurine. So there seems to be multiple products called gaba plus. If I notice any improvement that I attribute to it I will be sure to post again. Twin Labs Ingredients Amount %DV -------------------------------------------------------------------------------- Inositol 3000 mg Niacinamide 1000 mg GABA 500 mg -------------------------------------------------------------------------------- Other Ingredients: Gelatin, Purified Water, MCT, Silica, Magnesium Sterate.

From others who also have lyme I have heard the lyme docs say to clear the lyme first. s

So I'm still confused about all this..... in the week that I waited for the GABA Plus to come, dd7 started on an upswing and started doing much better. I've worked her up to the dosage our neuro wanted and she's continuing to do well. I don't feel like it's a good representation on how she's responded to the supplement though. What would you do? I'm thinking to tell the doc what hapened and keep her on the GABA Plus and wait for the next episode. Assuming that we can do IVIG if she ramps up while on it. And if she never ramps up, I just keep her on the abx and GABA forever? That's the part I'm confused about, if she has pandas and our insurance pays for IVIG, shouldn't I push for that? I'll call the neuro soon and see what he says. I guess I'm confused about IVIG vs managing symptoms with supplements like LLM says. Susan

I did not need preapproval with UHC. My doc is in network though so I don't know if it matters.... susan

Good morning, My girls were both diagnosed with sinus infections at early ages (3??) and basically every cold they ever had turned into one so I'll have to disagree with your doc. Regarding the itchy ears, I think that might be allergies. My dd's ears itch (mine too) and they try to scratch them by making those weird noises too. His ears could look fine to the Ped but could be irritatted from allergies. Maybe have him tested by an allergist/immunoloigist? GOOD LUCK! Susan

Interesting on the taurine. My dd7's CamK came back at 118 and I was surprised it was so low since she was restricting almost all food at the time and doing very poorly. She had been on taurine very recently before the draw (this was last year). Susan

Vickie, I found this one.... http://www.latitudes.org/forums/index.php?...p;hl=omegabrite Hope that helps! We need to try something new so I'll check it out as well Susan

HUGS! I am sorry you are going through this. You've gotten great advice so far. Regarding the gluten, yes you can see positive changes that fast! On day 4 my couch potato dd got up and started jogging around the cul-du-sac! I don't know about withdrawl, I bet it's possible. Susan

I almost forgot today so I thought I'd bump this up....

Buster, I was going to submit 2 survey's since I have 2 dd's but it only let's me submit one. Maybe that's not an issue for your map. I selected don't know for sudden onset since they got this so young and it was not easy to tell what was pandas at the time.

My dd8 functions very well during the day but in the mornings and at night is when she falls apart and I see an increase in symptoms. The night is worse than the morning but both can be bad. Some days more than others depending on how she's doing. When she's really sick it's all day but generally not.

Thanks Vickie! I'll be voting all month. I also tried to vote for the onetime vote in the chase contest but it's not clear if it accepted my vote. Hopefully so! Susan

Yes, very helpful (Kim, you too). Thank you. I know you have posted this stuff before, I guess my brain has finally learned enough I'm goingto the next phase, LOL. Although, I am feeling more distraught learning all this. I am having trouble seeing how it's going to get better. Susan

Our first one was covered. I don't know the diagnosis code either. UHC is denying some other stuff of mine so I am very worried. Susan