Not just PANDAS......

[dabel]

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I have been on the fence whether to share this on the Pandas board as I did on the Lyme board. After speaking to someone from this forum today I have decided to post it here also. This is not to start a debate as we have seen take place on the forum from time to time. This is just to share our story in hopes that it can help others so they can find answers sooner than we have. Our quest to "cure" our child started eight and a half long years ago. He has been in and out of the psych ward, to more specialists than I can count, had every type of test run on him that we could think of, been put on psych med's, etc After all of that our son was still debilitated. Seven years in to it we met with one of the big PANDAS doctors who told me that my son's case was so clearly a PANDAS case that it was boring. As it turns out, this is not quite correct. Does he have PANDAS? Yes, he sure does but what is keeping him from making a full and lasting recovery? Please read our experience as it may help you to help your children. Again, this is not to start a debate. I am just sharing to help. This forum is made up of a lot of wonderful people who share a common goal....to heal our children.

 

 

* Group: Members

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* Joined: 21-October 09

 

Posted Yesterday, 02:55 PM

 

Okay. We have all read the rather lengthy thread on all the positive Igenex tests etc. I have to admit that I too have thought about how all of these people can be coming up positive and hopping from the PANDAS board to the Lymes. I think we have to keep in mind that the people who are sending their blood in for testing are not just Joe Blow off of the street. These are people (kids and adults) who are struggling and searching for answers and most have not responded properly or for long term to typical PANDAS treatment. We all want to know what it is that we or our children are battling. Most of us thought we had it figured out. When we got a PANDAS diagnosis we thought....well, it is about time the mystery is finally solved after years of watching our child suffer terribly! So we ventured in to this new world with new found hope for our childs future. Before this there was not much hope as we thought he would not live through his teenage years and we were desperate to help him. We started high dose long term abx, and high dose IVIG. Over about a six month period following hd IVIG God returned our beautiful child to us! He started school this fall for the first time in two years. He even joined the cross country team which was HUGE! He had not been involved in anything for years. His first meet I sat and watched with tears streaming down my face. He was interacting with his team mates, cheering them on, and just being a normal thirteen year old boy. This is what we have wanted. This was all we had wanted. We just wanted him to be able to function as a normal boy. He was doing well in school. There was no fighting every morning to get him there ... heck he was up getting ready in the morning before I went to wake him up. Life was good!!! Then he got a little virus.... nothing major. He missed one day of school but a week later here comes the black cloud again. I quickly panicked and we threw him on a steroid burst to try to head this monster off before it took hold. This did perk him up to a degree but still not good and very temporary. Then we got approved for monthly IVIG and thought this would pull him out....he got worse. I lost my son again! He has had to go stay somewhere else because he can't function within the family and was not here for Thanksgiving or Christmas.

 

 

A specialty lab decided to do a case study on my family because I have four children who have had illness induced changes. This child comes up with chronic gram negative bacterial infection, chronic gram positive bacterial infection, chronic fungal infection, and chronic viral infection. I am a true believer in the fact that at the end of the day it is nice to know what you are battling but the bottom line is most of these kids are battling chronic multiple infections that tax their immune systems. Each bug makes it all the easier for the next bug to set up shop. He has strep that we have not be able to eradicate with long term high dose abx and three IVIG's. Mycoplasma. Lyme. Candida. Etc... We have not tested for co infections yet but I will guarantee you he has those too. My point with all of this is the reason that a lot of these kids are coming up positive is because they are the kids that have not gotten better or did not stay better. Why? Because so much more was going on that needs to be addressed before there is complete healing. I thought I had three and possibly four PANDAS kids. What I have is three possibly four kids with chronic multiple infections....Lyme being one of them. Oh yeah....and I just found out that I have it too. We all present differently.....some can function and some can not. What I know is that all need to be treated with a combination of things to rid them of the combination of bugs that are assaulting their systems. This can be a very serious situation and can be without a doubt in my mind life threatening as is the case with my one son. I pray I can get him better before I loose him!

 

Sorry for the rant or pouring out of thought. Maybe I just had to write.

[mom love]

My goodness. This is a tough road. I am so glad you are getting answers. Do you mind sharing what these tests were exactly and how do they know they are chronic? Not doubting it of course, just wondering is is an IGG verses an IGM. Also how do you find out about fungal infections? Just wanting to know exactly how to get these answers. Blood, stool, urine etc.

 

So what is your first step?

[Megs_Mom]

Hi. Thank you for posting. I am so glad you are finding answers. Pandas is the great mystery answer for some , but I worry abt the children who do not heal. After years here, some children heal right away, and pandas treatment is such a miracle for them. For others, something seem so wrong still. Some kids seem " different" than a typical case, either in presentation, or in relapse. I worry that we could one day be one of those, as our case is well controlled but chronic. I am so grateful that so many of those children are finding answers in confection treatment and pray your son will be better soon. All that really matters is that these kids are able to have normal happy childhoods! You are one of the many hero moms here, who keep fighting and educating, with kindness and humility, and it is so appreciated. I think that humility and doubt have become my constant companions, not in a panicked way, just in a way that hopefully leaves our family open to the possibility of unusual challenges and unusual answers.

[kferricks]

I for one am glad you posted this. We need all the information that we can get; knowledge is the power that is going to help our kids. I will keep in mind your story if down the road I find things are not going as well as I think they are.

[Mary M]

Thank you for sharing. I have wondered if there is more going on in the bodies of so many PANDAS children. Your story certainly confirms that. May you find help and healing...may we all,

Mary

from Michigan

[Stephanie2]

I want to add that maybe some ppl are missing the gut infections that are caused by chronic abx use. My boys deal with the following, reoccuring infections, that if not controlled would land them both in the psych ward as well: klebsiella, clostridia, yeast, and our most recent proteus. I used to think strep was our biggest enemy. I now know that klebsiella will make my 6yo extremely violent, and clostridia takes away all ability to function at all and renders him completely autistic. My 2yo does not have quite the severity of symptoms as my 6yo, but he definitely is affected by them.

 

oh, almost forgot my 2yo has a chronic staph infection (impetigo) that I have to treat 3 times/day. this also contributes to pandas symptoms (and pandas contributes to the staph infection as the tics/compulsions are aimed at the impetigo soars).