Improvement, but not remission

[JAG10]

The field of medicine has so let down our children and been Outwitted, Outplayed and Outlasted by the Surviving Mighty Microbes.

 

I've heard our lyme friends who say it can just be neuro symptoms, and I'm still getting it all checked out....but my dd has amazing stamina, no fatigue whatsoever (she runs 5Ks and does triathlons), no joint/muscle/aches/pains-nothing like that; it is and always has been for years neuro-psychiatric symptoms.

 

 

oh JAG - that comment makes me cry with its harsh sting of reality!!

 

i see you say you're getting other infections checked out. . . my opinion is it could be both -- other infections could be troubling her immune system but what you SEE is from myco trouble.. . . perhaps she can't kick the myco or it is so troubling for her b/c the other infections exist but in more of a 'silent' existence. so you could be right -- myco is her achillies heel and what you see and other infections enable it to be so.

 

 

Absolutely open to and investigating that possibility. Lord knows she picks up everything she comes across...warts, cold sores, molluscum, all the viruses that leave evidence of their visits. Terrible acne. Interestingly, the lice want nothing to do with her! Every year, someone in her class passes around lice and many of the boys and girls have been infested, but not her, ever. Perhaps the lice are smart enough to sense something is wrong and not hitch their carts to her wagon.

 

Thanks everybody; great discussion!

[nevergiveup]

Jag,, Have you had the igenex test? If you are seeing bouboulis he will probably request the test. Long term abx or ivig, Marshall protocol, pex, all have shown helpful. Keep trying until your gut tells you something is going in the right direction. If your gut says ivig is helpful, do not knee jerk to several comments on this forum. Look at Chemar she is comfortable with her choice and treatment, I am very comfortable with mine, SFmom should change her pen name to "nevergiveup" she is determined to find the cause and cure for her children. Keith and Elizabeth sent me on my way to find my dd's immune deficiency (Thank you). But I am not following as of yet the her road towards lyme. You do not need to justify your decision to this forum. I know you know all info is valuable, but you know your child better than all of us.

[thereishope]

Just wanted to post that I received an email from Diana P stating that whomever told you that statement was mistaken. That was not said at the meeting. She tried to post herself, but was unable. Just wanted to clarify things for correct information.....

 

 

Talk about how these specialist met at NIMH this summer and they appear to be in accord that T and A for PANDAS are recommended

[tpotter]

Nevergiveup...I LOVE your response. And I totally agree. So far, we have found chronic strep, Immune Deficiency, MycoP, Lyme (clinically diagnosed in both my boys...their tests were not 100% conclusive, but they are definitely herxing). One of my boys has the joint pain and some (certainly very significant) neuropsych issues, while the other has almost only neuropsych issues...little to no joint pain. We are going through with IVIG, because my gut feeling is that we need to throw everything we possibly can or we will just keep going in circles.

 

But, as nevergiveup says...we know our kids better than anyone else, and in the end we all need to make our own decisions using the bits and pieces of information each of us gleans from everyone else's posts.

 

Thank you to everyone who has put his/her 2 cents worth in, because this is how this terrible disorder(s) are going to be figured out in the end. We all share ideas, get our doctor's recommendations, and add in our own "gut feelings" or "mother's intuition"...whatever you want to call it, and our children will hopefully all be helped in the end.

[JAG10]

That's fine, it wasn't my intention to imply every child ever associated with a pandas dx needs a T & A; no not standard like that.

 

Kmom- Encourage this particular ENT to contact your pandas doctor who is recommending T&A to share his views on the current science behind that decision for your child. This ENT will tell you that based on his knowledge, he cannot recommend it based on enlarged T & A or snoring or pandas, ect....he cannot recommend it, but he does respect pandas docs and will perform what you need done in a competent and timely manner based on the pandas doc rec.

[kmom]

Thanks everyone for all the good advice. Just so amazing how hard we all have to fight to get our answers, but so worth it. My kids have negative Igenex Lyme and co-inf results but all this nonsense w/ the strep/PANDAS started witin 6 months of returning from camping in Poconos and both kids came home with a ridiculous amount of strange bites on the trunk of their body....no where else on body. I have a picture of the bites and it haunts me every time I look at it so I have an appt in Feb w/ Dr. Jones (fingers crossed I get called b/f then)and also on a wait list w/ Dr. Corson and Dr. Horowitz. I just need LLMD's opinion to rest easier that what I am doing is the best possible treatment. What's the point of multiple IVIG's IF there's another infection lurking.

 

Thanks JAG 10--I am all in favor of T & A for my DS. DD had it done in April. I as a child had major strep issues--Scarlet Fever at age 3, strep all thru grade school to the point I missed a ton of school 2nd grade. And I cried the day I put 2 and 2 together about DD's PANDAS (dx'd b/f DS) b/c I know as a child I had it but never had a name for it...not as severe as my kids. I managed it. But I had the separation anxiety, general anxiety and OCD. My mom always thought I was just shy and super attached. We chucked the anxiety off to me striving to be the good student I was and I was the "worry wart" child where my sister was the one my parents had to stay on top of, less responsible type back then. I hid the OCD amazingly well. My sister recognized it but my parents didn't. When she'd make fun of me or question it, I'd act like she was crazy! This whole process has been eye opening to my mother. We're all so close but she's shocked she never noticed the OCD. She feels terrible....not like much would have been done back then. It was an evenness type of OCD. My sis to this day can describe it well and I remember the details vividly. Interestingly enough, I didn't get my tonsils out till my teens and never put the connetion together about how the PANDAS symptoms diminished. In hindsight, I swear it's b/c the bacterial host was removed. So when Dr. B said to get DS a T & A, I had to agree whole-heartedly. Hoping that becomes a reality soon! BTW, even though I wasn't a severe PANDAS case, I'm living proof you can overcome this and lead a very normal life!

 

Also--quick question on the lice tidbit above. My kids never had lice till this past winter...My DD's best friend got strep--2 days later the start of stubborn strep inf in my DD. Soon after, same best friend also had issues with stubborn lice last school year, most likely was one who passed it onto DD and it was difficult to get rid of and I did everything imaginable b/c I was freaked! Is there any correlation between PANDAS and lice?

[AmySLP]

Kmom-

 

I was so hoping your story was going in the direction that your child did NOT get lice. Wouldn't it be great if, with all we have to deal with already, this would be true-somehow these parasites would not find our kids appealing. I am so paranoid about this-never have experienced it with my girls, but I check everyday when I'm doing there hair determined I will catch it early if present. As if we need another thing to worry about!