I don't think it helped. Ughhh

[melanie]

I don't think the PEX helped at all We are doing an iv tomorrow. I'm so upset. I can't take this.

 

His iPod isn't sinking and his OCD and anger is off the charts.

 

Very discouraged.

 

Melanie

[dcmom]

melanie- give it a little time. Talk to the doc about high dose iv steroids...

[HT's Mom]

Melanie,

First of all, it's only been one day or so, right? I know how frustrating and scary it is to see him like this after all you have been through (watching my son freak out over stupid things like the ipod is maddening, I know!) but try not to panic yet. It takes time to heal. But also, did you mean that you are doing IV tomorrow or IVIG? I can't remember what your plan was from the other posts. If you meant you are doing IVIG next, it will probably help the whole process, but even that can take some time to see improvement. Try to hang in there - you have been so patient and brave, updating us all every step of the way of his pex treatment. We are praying for you.

[peglem]

Oh, Melanie, I'm so sorry to hear this! I wondered about doing PEX while he had an active infection (UTI). I wonder if it made it harder for him to fight that infection and if that is what's causing the problem. Hope the IVIG helps. Saying some xtra fervent prayers for you guys!

[PhillyPA]

Pandas16 - I am at a loss. I can't begin to describe how much your post upset me. Melanie needs encouragement right now. Your posts have gotten progressively cruel. I always tell my sons that their goal with friends should be to bring them up not down. Your post does nothing to calm and encourage a stress out parent. It is down right mean. I don't understand why you would treat a friend that way. If you don't have anything nice to say, don't say anything at all.

 

I highly doubt a neurologist would order PEX for autism.

 

Please, try to be kind. Try not to make fun of people which I have seen you do in the past, to me. Please think before you post.

[tpotter]

Pandas16 - I am at a loss. I can't begin to describe how much your post upset me. Melanie needs encouragement right now. Your posts have gotten progressively cruel. I always tell my sons that their goal with friends should be to bring them up not down. Your post does nothing to calm and encourage a stress out parent. It is down right mean. I don't understand why you would treat a friend that way. If you don't have anything nice to say, don't say anything at all.

 

I highly doubt a neurologist would order PEX for autism.

 

Please, try to be kind. Try not to make fun of people which I have seen you do in the past, to me. Please think before you post.

 

 

I did not mean to be mean at all. I didnt realize taht her son had autism and that's the only reason why I said maybe you are expecting too much. It is important to be hopeful but also realistic. Anger is also seen in autism.

 

 

PANDAS16, with all due respect...Autism is not necessarily just autism. Many of us have kids who have been diagnosed with Autism (one of mine included), and they have gotten better with PEX and IVIG. Both my boys got PEX one time, and it helped for a good 4 -6 months. They have also gotten IVIG, and that has also helped.) My child with "Autism", jumped approximately 6 - 7 years in social skills following IVIG...overnight, and started "getting" things that he previously did not "get." After PEX, he was very calm, inutitive, involved in home and school like never before, and one of his two major OCD issues disappeared.

 

We truly don't know exactly what Autism is, except that it looks like PANDAS. Autism is a set of symptoms, which include: language, social and sensory. Every person with Autism has a different amount of each of these symptoms, and that's why it's called a spectrum. We are finding more and more that some Autism can be treated biomedically. How many of of kids on this forum suddenly lost the ability to speak? How many became "Autistic" overnight? One of the things that many have thought over the years is that it's not uncommon to suddenly get Autism when a child is 18 months old...that's why the whole controversy exists with immunizations (personally, I believe that the immunization may have something to do with an already compromised immune system, but that's a different post.)

 

At any respect, I have to go wake my kids up right now. I know you didn't mean any harm, but please don't assume that Autism is a different disorder. It's really not ncessarily. All the symptoms are similar to encephalitis (sounds remarkably like possible PANDAS...right?)

 

Melanie, now to respond to your post. Please, please give it time. Your son's body and brain need time to respond to this onslaught of healing. Don't give up yet.

[PhillyPA]

It doesn't matter if I agree or not. What matters is your timing. It is an important social skill. If someone is going through a difficult time you don't say what you said in your post.

 

If you don't get it, you don't get it. I can't explain social skills to someone who doesn't understand. If you feel your post was encouraging then you just don't get it.

 

Perhaps it is your pandas flaring. If so, I wish you the best.

 

I certainly don't want to argue with you. I know that you will just put me down which is your M.O. lately. I don't need it.

[PowPow]

MELANIE!!

PLEASE DO NOT panic yet!

 

Both of my children had pex. One saw results at 5 days. The other did not see results until 4- 5 weeks. I know you are dying inside, but please, dear.. try to hold out a little longer.

My 4-5 week improved child- she remained improved for only a few weeks. she repeated pex recently and we are seeing improvments now- going into week 3.

Go ahead into other treatments, too-- namenda, IVIG, whatever-- but please know that it takes time.

Our doctor told me that another PANDAS researcher said that it takes 21 days for the basal ganglia to "calm" after the plasmapheresis. I have no idea if this is "written" anywhere- but it helped me put thing in perspective.

[eljomom]

Melanie-I am just so sad for you rigt now. Mother to mother- I'm just going to say it.....this sucks! I talked for hours last night with a dear friend who just went through breast cancer . I am a cancer survivor myself. We talked about it all. Two things stood out. One is that noone ever just says it like it is. Which truly is- it sucks! Period. She said she would get texts from (well-meaning) people saying things like "make it a fantastic day!" and she said she would get so angry. And my friend is actualy one of the most positive people I know. Which sort of leads into the second thing- unless you have lived it-actually walked in the shoes- you just don't get it. And you aren't always so en encouraged by people who don't truly get it.

So...this leads me to pandas16 and her reply to Melanie. First-yes. She gets it from the "having lived it" side of things. HOWEVER!!!!! SHE IS NOT a MOMMA!!!!! Period. So in hat respect, she doesn't get it. Heck, my husband doesn't even get it. I might also add that pandas16 is young and that tends to lend people to sometimes speak in ways more mature adults might not.

In any case Melanie- my heart is absolutely breaking for you, and I wish I had some way to encourage you. I truly pray that things will settle. It had to be super stressful to go through pex....and maybe once he is home and in a regular routine again he will settle. I think what pandas16 meant to say is to try to weed out what might be from autism and what is from pandas (not an eAsy task I am guessing) and see if the pandas symptoms start to improve. I will pray for Danny and his body and you and your broken heart.

[LNN]

Melanie,

It was 4 weeks before we could say that pex helped. Before then, we saw ups and downs, improvements in some symptoms, worsening in others, that would change every few days. It was a roller coaster - it's working! Oh, no, it's not. It is! No, it's not. Very flash point anger, then calm. A burst of tics, then quiet. You just won't know for awhile. And with IVIG right after, we'll that's something some of us tried to get but couldn't. So you're a pioneer on this trail.

 

Hang in there and have faith. If it helps, awesome. If it falls short of expectations, we'll be here to help you with next steps. But it's too soon to get discouraged.

Keeping you in my thoughts,

Laura

[PhillyPA]

Pandas16- I see that you have edited your post and softened it. Thank you.

[PhillyPA]

You did make things quite clear in your PM. I suppose you are right. I am a "horrid woman".

 

 

Edited for punctuation....

Edited November 17, 2011 by PhillyPA

[JAG10]

P16- What is going on with you??? When someone consistently gets soooo offended at the crossover of PANDAS dx and characteristics of Autism (which is all it is: a cluster of symptoms with no known etiology) it screams of self-consciousness. How many parents have to get on this board and tell you....my child had ASD until pandas treatment alleviated all/most symptoms, my child could have been dx'd with ASD if evaluated at their worst symptom presentation, but now they do not, ect., ect.???? Just because it isn't YOUR experience, does not mean it is not so. Nobody is claiming the two conditions are one in the same: we are talking the brain here, it's very complicated (there are soooo many factors you are failing to consider in your conclusions!) and people are going to be impacted differently! BUT... PANDAS and ASD characteristics are not mutually exclusive either, that seems pretty obvious to anyone who has been hanging around here as long as we have. My dds have never raged or displayed characteristics of ODD, but I don't jump on ever post denouncing that association. The fact that you feel compelled to repeatedly reject any association between ASD and PANDAS is indicative of a narrow, narcissistic perspective. Many, many people keep telling you this; some politely, some bluntly, but you are not getting the message either way. You have a lot to contribute here, but consider stepping outside your world and acknowledge that you and your experience are not the sum total of PANDAS.

 

PhillyPA- Please don't leave; take a break, but don't leave. Your child's story is proof that this is true.

 

Hang in there Melanie.

[MomWithOCDSon]

P16- What is going on with you??? When someone consistently gets soooo offended at the crossover of PANDAS dx and characteristics of Autism (which is all it is: a cluster of symptoms with no known etiology) it screams of self-consciousness. How many parents have to get on this board and tell you....my child had ASD until pandas treatment alleviated all/most symptoms, my child could have been dx'd with ASD if evaluated at their worst symptom presentation, but now they do not, ect., ect.???? Just because it isn't YOUR experience, does not mean it is not so. Nobody is claiming the two conditions are one in the same: we are talking the brain here, it's very complicated (there are soooo many factors you are failing to consider in your conclusions!) and people are going to be impacted differently! BUT... PANDAS and ASD characteristics are not mutually exclusive either, that seems pretty obvious to anyone who has been hanging around here as long as we have. My dds have never raged or displayed characteristics of ODD, but I don't jump on ever post denouncing that association. The fact that you feel compelled to repeatedly reject any association between ASD and PANDAS is indicative of a narrow, narcissistic perspective. Many, many people keep telling you this; some politely, some bluntly, but you are not getting the message either way. You have a lot to contribute here, but consider stepping outside your world and acknowledge that you and your experience are not the sum total of PANDAS.

 

PhillyPA- Please don't leave; take a break, but don't leave. Your child's story is proof that this is true.

 

Hang in there Melanie.

 

PhillyPA -- I will echo JAG's post . . . don't leave! We need you here!

 

Pandas16 -- You really do appear to have a strong reaction to any cross-reference of PANDAs and autism; it's beginning to seem a little bit like Lady Macbeth -- "Methinks she doth protest too much." I have posted here at least 3 times, in direct response to some of your anti-autism-PANDAS-connection posts, links which illustrate that 1) autism can have its roots in auto-immune issues, just like PANDAS/Pitands, and 2) that at least one documented case of "autism" was, in fact, "cured" via the same methods many PANDAS sufferers use: antibiotics and supplementation (www.stopcallingitautism.com). Somehow, you've conveniently ignored those posts and links. Add that to the multiple experiences posted here, as noted by JAG, of kids incorrectly diagnosed with ASD who are miraculously "cured" of their ASD behaviors by PANDAS treatment, and there appears to be very good reason to explore the relationship.

 

I'm not going anywhere, but this will be my last post on this particular topic as it appears I'm posting to a brick wall where you're concerned. Since you appear to have everything so clearly defined and figured out, and you know definitively what is PANDAS and what is autism, I hope you'll offer your services to the researchers and doctors and organizations that are still struggling mightily to help our kids. And yes, that was scarcasm.

 

Back to the important stuff --

 

Melanie, hang in! You and Danny have been through a lot in the 2+ years I've been in this forum, and I know this is just another bump that you will cover over, through or around. Laura's given you her PEX experience, so don't give up hope. We're here for you!

[philamom]

PhillyPA- You're a strong & amazing mama, please don't let someone discourage you from posting. Many here (including me) look forward to reading your posts - and this is from someone who respectfully disagrees with some of them :-) KEEP POSTING MAMA!!!

 

Melanie- you've been around to know to be patient and try to offer Danny all the support and love he needs right now. Sending prayers your way!! We're all thinking of you!

Edited November 16, 2011 by philamom