browneyesmom

Ok, just read the thread KBossman started - so, looks like this is a prior infection. She did have pneumonia as a toddler, but it's been almost 10 years, so I would not have thought it would still be elevated.

DD11's IgG AB Myco level is 216 and marked as indeterminate. Her IgM AB Myco level is <770 - no flag there.

Dr. B is not the Immuno who told me her IgG is "significantly low" - that quote is from our local Immuno. She was over 100 below the lowest end of the normal range - don't have it in front of me atm. Although I already know their labs are MUCH higher for Myco than my dd11's are, I just opened the other thread - going there now. Thx!

I've received part of my dd11's labs back that Dr. B ordered but I have not been able to reach him via phone - I realize he has been out of town and it catching up right now. Good news is that her LFT & porphyrin levels are back in the normal range with her last set of labs on those. One of the labs Dr. B ran - the Myco showed ==> Indeterminate Myco IgG ... has anyone else seen this and if so, have you received feedback from your doc about if that is a positive or a negative... or they don't know and have to repeat it? I should mention that she has significantly low IgG levels and is receiving hd IVIG regularly now. TIA!!

I am taking dd11 to see our local Immuno (who we've seen for many years and remains part of her "medical team", although we are seeing Dr. B also) on Monday. I am planning to ask about: Food issues Probiotics Indeterminate Myco IgG level Any other labs he thinks we need to run Anything else I should discuss with him?

It's not really that so much as the distance is very far for such regular visits. He will remain on the team regardless of the distance though. Also, I just believe that the more docs we have looking at this and working with us, the better, given that her case has been so severe. The one I am not too happy with, is the Neurologist we have seen locally, who has been on the fence about PANDAS/PITAND and is just starting to maybe come around but clearly not up to speed. I just don't have it in me anymore to educate the docs - she needs help NOW and we need someone who can deliver on that... edited to add that I especially want her to look over the meds the neuro here has her taking as I've been reading more lately about problems with them taking psych meds while doing hd IVIG - and she has other medical conditions - word is still out on some of the co-infections, but her LFT & prophyrins are back to normal, thank God!! I'll try to post after I call... things have been rough here lately. She is improving ... excruciatingly slowly... I'm just the one who is completely drained and stressed lately.

I am planning to call Dr. Latimer's office early this week and was wondering if anyone has tried to make a new appointment recently and knows if she is accepting new patients yet. TIA!!

Absolutely, yes! Aggression and even rages where they attack their parents are seen with PANDAS.... has been the hallmark of when my daughter is extremely ill. I hope things improve for you soon!

I just emailed Gary's mom about the posts mentioned. My dd11 is on there also and it has been helpful for her too.

We tested ours! She was negative.... wish it had been that simple.

Push those fluids, use gravity to help plump up that vein and yes, numb with the cream.... hope they get it first stick on Monday! Hugs... had to be a very hard day for both of you! ♥

Yay!! That is a big change! I went to nursing school fairly late in life as it's a second career for me and it was NOT covered at all, just a few years ago. I also discussed it with a FB friend who is in nursing school ... and dd11's elementary school nurse wrote a paper on it for her MSN. She got a LOT of feedback on it that they had NO idea, so good she wrote it and is helping spread the word!!

Emerson, you are so amazing. I know, I have said that before, but you truly are so many years ahead of your peers in maturity. No, that does not help feeling alone right now, which is always a painful and lonely situation. I'm sorry. Want us to talk some sense into the other kids? Hang in there kiddo... you're going to get through this and thrive! I can hardly wait to see the shirt... Sending hugs and just one more comment about how great it is that you stand your ground and are true to yourself, even in the face of teen girl peers being... well, teen girl peers. ♥

We got home very late last night and went to sleep rather quickly. She looked rough after the infusion as the day wore on, but this morning, is reporting that she feels better again, just as after the other infusions - she says she feels "more like herself". Also, sore throat is gone!!! Yayyyy!!!! I can't tell you how long this child has had a sore throat from these infections! Ugh! It leaves again after every IVIG infusion. Slight headache, but she always has one. Nausea gone this morning... we'll see how the day goes. Lack of sleep for us to make the trip itself contributes to it being just hard for the days surrounding it, but this improves with rest and the benefits are clearly worth it in her case! Updated blog - link is in my siggy - off to pick up an Rx Dr. B's nurses called in for her & another we need to fill. Got to visit Whole Foods again and stock up on supplies - yay!! I'll be working on creating safe new recipes for her; I've already altered lots of them due to her Reactive Hypoglycemia, so this will be a good, new challenge to remove gluten and casein... we'll see how it goes over for her...

Thanks for the feedback... bumping for others who may be interested in participating.

Hey... so nice to meet you this week in CT. We had her Igenex labs piggybacked onto the others he ordered and some her Ped here ordered - not sure yet whether there will be a separate draw fee for those or not; we don't have the bill yet. I know we are over 3 hours from you, but we do have an excellent ENT here who did her T/A and is on-board with PANDAS; very compassionate and does very good work... great with kiddos! Dr. Michael Jacobson. Did I forget to give you my email? I'll pm it to you on FB.

Dr. B update ... no labs are back for any of us. Part one of infusion today went fine. Sorry I'm too drained to.update.more & am limited to using my phone right now. I know I never posted a good update of our first visit to Dr. B last month. There is a lot more info.on my blog if anyone is following her case or interested... feel free to subscribe for notifications of updates. Link is in my siggy here. Very tired, hope I can get her to sleep soon.

Thanks for the update and I hope his healing progresses as smoothly and quickly as possible.

Great news, Becky; so glad it went well for you and your son! We leave in the am for IVIG infusions on Weds & Thurs.

Have her immune levels been checked... specifically, Ig levels? dd11's were low and I am convinced that is what got her approved.

We used to give the powdered child one, but she quickly refused it so we switched to the adult capsule. She takes it twice daily now. So far, she does fairly well taking the capsule whole, but I would certainly open it and sprinkle some on applesauce or something else to get it in her, if necessary - so helpful! I hope it goes well for you; I know it can be so hard getting them to take the meds sometimes.

Hmm... interesting question, Joan! dd11 had Gammunex in-patient at Christmas. Dr. B uses Gammugard and told us it is the same thing. How is he doing?

Dedee... Dr. B is Medical Director for PANDAS Resource Network and wrote the medical section there: http://pandasresourcenetwork.com/ I gave that info to our Immunologist and he is looking over some of the research literature links... told me that is what he'd been trying to find.

:) Dcmom... when I started reading it, I was thinking of my daughter too. I emailed it to her, but I think altering it a little and re-sending would be better; thanks for the idea! I agree... our children are the real heroes in this!!

nomoz... Yes, she has CVID, so she doesn't have much choice about IVIG in her case. Her IgG levels are low. Her first infusion was at Christmas, during her hospitalization. She had another last month when we saw Dr. B and her next is this week. Yes, we definitely saw immediate, dramatic decrease in the rages with the first hdIVIG in the hospital. She started declining at about 3 weeks after that one and same thing this time. ... and oh goodness, yes... they leave me feeling like I am shaking inside. In her case, they include thrashing, a limp phase, aphasia and often, hallucinations... she rarely remembers them. The few times she has, she has been devastated & fell apart in tears, apologizing, hugging us... not in an OCD way, but genuinely upset that she could be capable of that. It broke my heart... as long as there is no lasting damage from the amnesia, it would be fine with me if she didn't remember them; it's so hard on her. Joan Pandas Mom... Her first hdIVIG in the hospital at Christmas was 2g/kg over two days. Dr. B did 1.5g/kg last month and she will remain at that, every four weeks, until she stabilizes. We go back this week, actually. Joan... who are you seeing for your son's IVIG? How often are you doing them and what are you seeing for improvements?