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My Family is Just NOT Getting It...


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They think this is no big deal. "Since ABs take care of it, then I am sure it isn't serious". These are the kinds of things I am hearing from my mother and husband. They think since her symptoms are so mild and transient, that it just isn't something to worry about.

 

Where can I find a list of stories about patients with PANDAS so I can show/copy them for them to read. They don't seem to get that this can get worse and that it isn't so easy to treat or find doctors willing to treat it.

 

VERY frustrated!!!

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Also, just google pandas and strep youtube pandas today show. You will find more than you can imagine. The fact that you are here is a good sign. I would not waste too much time on trying to convince people or regular docs/peds for that matter. Get to a DAN Ped, Integrative Ped or some Pandas literate doctor asap. Inform your self and follow your gut. Good luck and God bless!!!!

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I agree with WD... many of have doubters all around us. You could direct them to this forum, where there are plenty of 'stories' about families struggling through this.

 

Still, I'd focus your energy on your child's needs and finding a doctor who can help. You're overwhelmed enough in this - don't let them distract you from getting the help your child needs.

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I in no way want to minimize the h**l that is PANS. It is serious and should be treated as promptly as humanly possible. But since some of your posts have a sense of panic in them, I want to also say PANS is completely survivable and many kids come out the other side just fine (the parents...well, most of us end up with PTSD - but the kids fare pretty well if they get proper treatment).

 

When I first started learning about Pandas, I woke my husband at 2am, convinced that my son was the first case of encephaltic lethargy in 80 years. That if he didn't get out of bed right then and help me google, my son would be forever lost to us. This did not come to pass. My son is enormously better.

 

So I do support educating your family because it helps to have people who understand and support you. I do encourage you to get to a Pandas doctor or integrative doctor quickly (most of us don't luck out with pediatricians). You will battle plenty of doctors and teachers. It helps to at least have a spouse or parent who gets it. But...since you say you also struggle with anxiety, you should also remind yourself that there are far worse things - cancer, dire poverty, violence - that can keep PANS in perspective. Don't tie yourself up in knots. You are at the beginning of a long and difficult journey. Pace yourself and try not to panic. You are going to need strength and patience and endurance. It is very very hard. But it is also survivable.

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Hi. I asked my family to read the book "saving Sammy" about one family's struggle with PANDAS. This has helped us to know we are not alone with this and what symptoms and behaviors are possible.

I also agree with everyone else to find a PANDAS doctor and not just a pediatrician who may understand it, and mean well, but won't treat. This is just my experience after seeing six ped. Drs. Including pediatric neurologists. Besides, it can't hurt to get a consult and at the very least it will calm your anxiety about it. One of the other posts mentioned four PANDAS docs. I believe Dr K is closest to you if you live in Wisconsin, but not 100 percent sure of that.

Blessings!

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Thank you all very much. I guess I was just discouraged because my husband doesn't really see the need to see a specialist if they are "just going to prescribe antibiotics anyway"...and really, I dont care what others (incl. my mom) think...but I do need him to be with me on this.

 

Yes, I do have a tendency to catastrophize. And I cannot stand the thought of any thing bad happening to her (as i am sure is the case with all moms). But as I move through the day and after an appt with my therapist lol...I am realizing I need to put things into perspective and stop assuming the worst case scenarios. My "what ifs" take over sometimes.

 

I emailed a Dr in Illinois who was recommended on another thread. He watched the video of my daughter and wrote back right away. He charges 250 cash to become a new patient (even tho insurance will cover him) so my husband is VERYYYY leary. Of course she is worth it to us, but we do live paycheck to paycheck pretty much. I did make an appt but couldnt get in until March 9th.

 

My family Doc is ordering all the suggested tests he mentioned in his email and will refer us to whomever we chose.

 

I have a call in to a Dr. at Children's Hospital in Milwaukee (very good place) who is supposedly familiar with PANDAS. I asked the RN HOW familiar she is and asked to have her call me with info about the Dr's experience. If I feel comfortable with her answers, we will try there first. She is a pediatric neurologist.

 

I am thinking I should ask our Dr if she'd be willing to prescribe an AB in the meantime as a few weeks seems to be long to wait without doing anything. Do you agree??

 

Anyway - thanks to all of you. You have been a great help.

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I am lucky that my family has been very supportive, it has been helpful beyond words- however, my daughter's initial onset was fairly debilitating.

 

Frankly, you don't need anyone "with" you. And, you can just ask your husband if he can't be with you, can he please indulge you to do what you think is right for your daughter, because you do not like the look of the research you have done, and just want to be pro active in case "the worst" happens.

 

I agree with LLM you sound completely panicked, and your dd's symptoms sound very mild. First, you cannot do what you need to do in a panicked state of mind. I concur with LLM in that my kids had a very debilitating onset, and have gone on to thrive. It is a diagnosis we are stuck with, and have to "manage", but they generally live life 95% symptom free. The KEY to that is having a pandas specialist on your speed dial, ready to treat at any sign of an issue. So, I am with you that you need to get to one, the sooner the better. And, I am a little bitter I think, but I would not waste time with a doc unless you have MULTIPLE, POSITIVE references from PANDAS PARENTS that the doc actually TREATS pandas.

 

I know in my own house, I diagnosed my own daughter after reading info (in desperation) online after her overnight onset of ocd (I didn't even know it was ocd at the time). I spent then next two days reading EVERYTHING I could find on pandas, and the next few night crying myself to sleep. My dh DID NOT understand. He was mad, why couldn't I just accept this and move on with our life (after a few days!!!). Men are different. I think three years later and two kids with pandas, he would have been more sympathetic at the outset- but I did all the research, NOT HIM.

 

There are many kids who come on the forum with a mild onset, and go on to be well, without relapse. Let's hope this is your daughter- and you end up looking foolish :) But in the meantime, you can prepare for relapse, without your husband being 100% on board. To be honest, I still lead the charge of taking care of this illness: research, doc appts, therapy, etc- that is just the dynamic in my family. My dh of course is on board now, but would still probably be less proactive than me, however we have settled into a comfortable routine where he can relax because he knows I am on top of it, and I know he generally supports WHATEVER I think the kids need.

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Where can I find a list of stories about patients with PANDAS so I can show/copy them for them to read. They don't seem to get that this can get worse and that it isn't so easy to treat or find doctors willing to treat it.

 

VERY frustrated!!!

 

Here's a Turkish study. These are men that had onset of PANDAS in childhood that went untreated. Their stories are pretty sad, high school not competed, and unemployed.

 

http://www.turkpsikiyatri.com/en/default.aspx?modul=article&id=592

 

Sue Swedo has been asked how PANDAS kids do in adulthood, he answer always seems pretty consistent that they do well...if they are treated.

 

And IMHO, it may be that PANDAS mirrors childhood asthma, with the kids with the milder cases and the cases that are well controlled that tend to outgrow it in adulthood.

 

That is a big concern of mine, untreated PANDAS may lead to a lifetime of mental illness. Dr. Jenike alluded to that in his brief interview on the Anderson Cooper show the other day "if treated with antibiotics, can prevent a life-time of mental illness." http://www.andersoncooper.com/2012/02/10/could-the-illness-in-le-roy-be-pandas/

 

I should add, that it is the mild cases that may be easier to control with just antibiotics. Once PANDAS becomes full-blown it becomes harder to control and then you are looking at IVIG/PEX and a situation where you have difficulty getting back to a true baseline.

 

The number of prior episodes of GABHS infection was the only factor that appeared to predict a more severe, relapsing course of PANDAS. The patients who did not have recurrences had fewer episodes of GABHS prior to PANDAS onset, and those with the most severe and relapsing course had the most episodes of GABHS before the onset of PANDAS. Those with the most recurrences developed more significant behavioral symptoms, which then began to wax and wane. Their OCD symptoms became more chronic and persistent. This result is consistent with the increased incidence and severity of OCD seen with recurrences of Sydenham chorea.19

 

http://archpedi.ama-assn.org/cgi/content/full/156/4/356

Edited by EAMom
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They think this is no big deal. "Since ABs take care of it, then I am sure it isn't serious". These are the kinds of things I am hearing from my mother and husband. They think since her symptoms are so mild and transient, that it just isn't something to worry about.

 

Where can I find a list of stories about patients with PANDAS so I can show/copy them for them to read. They don't seem to get that this can get worse and that it isn't so easy to treat or find doctors willing to treat it.

 

VERY frustrated!!!

 

I do want to add that you are 1 step ahead by just knowing that PANDAS exists. With PANDAS, things can really to spiral out of control very quickly, but it is worse when you don't know what is going on, or don't know that there is a connection between behavior/tics to strep/other illnesses (esp. if your child gets assymptomatic strep!).

 

Here's the story of a child that had untreated strep for 2 mo. (no sore throat). She went from normal kid to kid with severe OCD/bipolar behavior and full-blown anorexia nervosa/acute food refusal in about 6 weeks. (It's my kid-dh wrote the article). http://www.foodsmatter.com/asd_autism/miscellaneous/articles/pandas.html

Edited by EAMom
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I can relate with you on this.

As a matter of fact, I just sent out an e-mail 2 nights ago to my mother, Mother in Law, and Father in Laws. I just feel as if they are skeptical. They wonder why on Earth I would travel to CT, when I have Children's Hospital Boston around the corner.

 

I sent them the PANDAS website, along with some youtube videos, and the link to this forum. I guess I will just have to wait and see if they are intersted enough to read.

 

I am like you as well. My daughter's symptoms are fairly "mild", as compared to others, but hey, I still react. And with a lot of emotion. But when it's your kid, and you know something is wrong, there is no wat to under react, in my opinion. No one knows your child like you know them. If you see a change, keep pursuing until you find an answer that you truly believe in.

 

Hang in there.

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I am like you as well. My daughter's symptoms are fairly "mild", as compared to others, but hey, I still react. And with a lot of emotion. But when it's your kid, and you know something is wrong, there is no wat to under react, in my opinion. No one knows your child like you know them. If you see a change, keep pursuing until you find an answer that you truly believe in.

 

 

 

Your comments make me think of the "big question"...how many kids out there with untreated "mild" PANDAS(bear in mind that most of these kids are undiagnosed/misdiagnosed/flying under the radar) end up with doing just fine? Maybe some of these "mild" kids are okay because they get a course of antibiotics for some other reason, or the next strain of strep never comes along which sends them into a full-blown PANDAS tailspin?

 

There really aren't numbers, because so many PANDAS kids aren't diagnosed (esp. the mild ones). Even the PANDAS docs don't know this...by the time they travel to Swedo or Dr. K., or Dr.Latimer, they are severe.

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I am like you as well. My daughter's symptoms are fairly "mild", as compared to others, but hey, I still react. And with a lot of emotion. But when it's your kid, and you know something is wrong, there is no wat to under react, in my opinion. No one knows your child like you know them. If you see a change, keep pursuing until you find an answer that you truly believe in.

 

 

 

Your comments make me think of the "big question"...how many kids out there with untreated "mild" PANDAS(bear in mind that most of these kids are undiagnosed/misdiagnosed/flying under the radar) end up with doing just fine? Maybe some of these "mild" kids are okay because they get a course of antibiotics for some other reason, or the next strain of strep never comes along which sends them into a full-blown PANDAS tailspin?

 

There really aren't numbers, because so many PANDAS kids aren't diagnosed (esp. the mild ones). Even the PANDAS docs don't know this...by the time they travel to Swedo or Dr. K., or Dr.Latimer, they are severe.

 

So do you believe that all mild cases turn severe eventually??

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Your comments make me think of the "big question"...how many kids out there with untreated "mild" PANDAS(bear in mind that most of these kids are undiagnosed/misdiagnosed/flying under the radar) end up with doing just fine? Maybe some of these "mild" kids are okay because they get a course of antibiotics for some other reason, or the next strain of strep never comes along which sends them into a full-blown PANDAS tailspin?

 

There really aren't numbers, because so many PANDAS kids aren't diagnosed (esp. the mild ones). Even the PANDAS docs don't know this...by the time they travel to Swedo or Dr. K., or Dr.Latimer, they are severe.

I think there are a lot! It's just my gut feeling. I think my other 3 kids have all had some symptoms from infections...but it's just never enough (and long enough) to jump into "treatment". I think the vitamins, l-tryptophan and especially fish oil really help keep things in check....and of course Motrin.

 

Prior to knowing about PANDAS, I would have just considered these types of symptoms that my kids have as "phases" -- normal childhood things -- or that genetic propensity to anxiety.

Edited by Kayanne
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I am like you as well. My daughter's symptoms are fairly "mild", as compared to others, but hey, I still react. And with a lot of emotion. But when it's your kid, and you know something is wrong, there is no wat to under react, in my opinion. No one knows your child like you know them. If you see a change, keep pursuing until you find an answer that you truly believe in.

 

 

 

Your comments make me think of the "big question"...how many kids out there with untreated "mild" PANDAS(bear in mind that most of these kids are undiagnosed/misdiagnosed/flying under the radar) end up with doing just fine? Maybe some of these "mild" kids are okay because they get a course of antibiotics for some other reason, or the next strain of strep never comes along which sends them into a full-blown PANDAS tailspin?

 

There really aren't numbers, because so many PANDAS kids aren't diagnosed (esp. the mild ones). Even the PANDAS docs don't know this...by the time they travel to Swedo or Dr. K., or Dr.Latimer, they are severe.

 

So do you believe that all mild cases turn severe eventually??

 

My guess is that a lot of mild cases do just fine. It just isn't known. Those mild undiagnosed cases, you wouldn't hear about and probably aren't diagnosed, so you just don't know. It probably helps matter if they aren't exposed to more strep infections or other infectious triggers to help them "tip over the edge" into a severe PANDAS state. I would also be careful of vaccines at this point...since that is another thing which MIGHT tip a mild PANDAS kid over the edge.

 

So much isn't studied re PANDAS (doesn't help that so many PANDAS kids aren't officially diagnosed)...and it also isn't known if these mild untreated cases are going to be more prone to OCD or depression or other psych. problems as adults, or if they completely outgrow PANDAS.

Edited by EAMom
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