Jaal

Has any elese noticed this, and does this indicate anything?

Thank you Sheila!

Hi Sheila Can you please point us to any information about how Edward was treated, and what happened to his symptoms. Thank you!

Thanks in advance!

We just started b12 shots...o.o4 ml every 3 days...I noticed after the first shot some tics and hyper activity...I didn't know if herxing is possible from b12 or if it's just coincidence. Thank you!

LLM, im not sure if igM or IgG...it was the Igenex test

Ds7 diagnosed with Pandas last year by Dr. K. Just received results for 1st Lyme test (haven't discussed with doctor yet). Results were: Igenex Igm - Negative CDC/NYS- Negative 18 kDa + ++23-25 kDa + ++39 kDa IND ++41 kDa IND my question is why is it considered negative if there are traces present? Isn't it either you have it in your system or you dont? Thank you...I'm just trying to understand it all. Also is it possible to have something like Babesia even if this main lyme test is negative?

My DS7 has started to get some test results back (Dr. Mielke), and I wanted to get some opinions before I have my follow up consultation. My DS was diagnosed with PANDAS by Dr. k and we had one HD IVIG in May with very poor results...we are now looking for other illnesses. His IgE score was 354 (high). He also tested class 3 for some foods: Wheat .681 Yeast (bakers) .455 Egg Yolk .906 Gluten .511 I have read that the High IgE can cause the high sensitivities to food (and that everyone tests high to certain foods they ate on the day of testing). I'm not sure what to believe so would love to hear from parents who have experience with this issue. Is it possible to treat the high IgE by some means other than eliminating certain foods. Basically, the thought of trying to eliminate yeast, gluten, and eggs from my son's diet (basically every food known to mankind) makes me want to cry... I honestly think dealing with the Pandas Symptoms might be easier than attempting this diet I have also heard from many parents who tried the elimination diet and said it didn't help. Any thoughts would be greatly appreciated. Thank you!

He is taking Augmentin

Ds 7 is now 10 weeks post ivig and some of his earliest symptoms (when he was 4 or 5) are in full force...maybe even worst then ever. He looks almost uncomfortable in his skin....having an urge to touch things and people...touching objects in a certain way, stepping on my foot, pressing part of his body up to a wall,etc. Im not even sure if this is a tic, OCD, or a sensory condition? Has anyone ever heard of ivig having a permanent negative effect? It's been 10 weeks and I'm starting to get really nervous that the Ivig has made him worst.

Ds7 is 7 weeks post ivig. Interesting pattern...1st week he was actually very good....the following 3 weeks very bad (tics, behavior, sensory). The last few weeks he is only exhibiting symptoms he had when he was 4-5 years old (lots of sensory and OCD, no tics or fire (our name for excess energy and movement). I have read some posts that said Dr. K refers to this as peeling back the layers. Has anyone else experienced this or read about it?

Thanks Nickel...when there was improvement, what %to would you say it was? Was it gradual or just one day symptoms were finally gone? How come you did a 2nd treatment? Thanks!!

Hi Bees When you experienced th "the backslide stage" of IVIG, were symptoms even worst than they had been before the IVIG? How long did this period last? Did the symptoms then just magically disappear one day, or was it a gradual improvent? I'm currently experiencing a backslide now, and my ds7 is exhibiting all kinds of symptoms he used to have long before antibiotic started improving his symptoms. Very hard to endure, so any info you can provide would be much appreciated! Thank you!

Thanks Beeskneesmommy! I will hope we have the same pattern! I was just concerned because I thought the regression occurred right after the IVIG. Thanks again!

Hi MY DS7 had his 1st IVIG treatment 3 1/2 weeks ago (after being on Augmentin for 8 months). He was actually pretty good for the 1st 2 weeks (other than a little bit of rage). Then for the last week and a half, he has been worst then he has been in quite a while...he's had some tics that he hasnt had in a long time, and he just seems uncomfortable in his skin (I call it firey). I read that a lot of people who had IVIG experienced worsening for a couple weeks then a gradual improvement. My question for those who have had IVIG is was this worsening immediate, or did the worsening ever begin a couple weeks later, and then start gradually improving. Any insight would be greatly appreciated! I'm obviously getting very nervous. Thank you!!!

thank you in advance!

My DS7 finished day 2 today. How about we do an exchange prayer

We are in the middle of IVIG treatment for our DS7 (day 1 in the books) According to his weight (22.4kg), Dr k's recommended dose is 33.6 grams Does anyone know if their doctor rounded up or down when selecting the doseage...it only comes in 5 gram increments. Thank you!

Airial95, Thank you so much for the great suggestions! I am so glad to hear you are experiencing great results so far! One last question, was that dose for each day or for both days combined (.75 grams/kg each day)? Thank you!

I believe Dr K recommends 1.5 grams / kg dose....is that total amount for both days....my ds is having it in Las Vegas and I want to make sure they have the dose right. Also, can anyone let me know if octagon is a reputable product. Thank you!

My ds 7 had been doing really well the last 5 months on antibiotic. Then all of a sudden a few weeks ago, horrible temper and tics for the first time in a while. We live in Las Vegas so maybe change in season, allergies, pollen etc? Hopefully just a flare but always so disappointing. His 1st IVIG in 2 weeks so the praying begins!

Hi It seems that IVIG will cost around $12,000 for my DS 7 (48 lbs)...this is estimate for Dr. K. Do all Doctors charge this much? I didn't think it cost that much. (Blue Cross will not cover). Can people who have had IVIG performed please share how much it cost them and where they had it performed. Thanks so much in advance!

How did you get BCBS to cover it...when Dr K filled out my info, they rejected it...did you have your Doctor write anything in particular? Thank you!

Sorry...I meant Los Angeles

Also...what have people spent for IVIG treatment when it is not covered by insurance? It seems like Dr K is more expensive... does it really matter who performs the IVIG as long as the dose is the same and the solution comes from a trusted source?