Is this curable?

[LovingMJ]

At the moment I am so overwhelmed with information...my head is going to explode!

 

I had a crying breakdown an hour ago !!

 

If he does have pandas...will have to live lime this for the rest of his life? Will he have to take antibiotics for the rest of his life?

 

Please explain this like you are talking to a 5year old. I am so confused. Everything that I am trying to process...I have to in turn explain it to my husband and I am not understanding everything.

 

Thank you all in advance... All of you ladies are wonderful and if you were infront of me I would hug you all!!

[coco]

Hi LovingMJ, hug back at you. yes, all of these moms and dads on the forum are awesome. And we all have had exploding heads. In fact, mine has exploded on more than one occasion! Seriously, you will help your child through this. It is a journey, no doubt, but follow the lead of a good doctor who believes in Pandas, trust your gut and try not to agonize. There is hope and many children have recovered! Read the pandasnetwork site until you know it like that back of your hand, check in with all of the folks here and know help and a hug is a click away!

 

Coco

[sf_mom]

Honestly, nobody knows yet but there is hope.

 

Our son is 5.75 and seems to be about 98% recovered from sudden on-set at end of June. We were very aggressive in treatment. He had IVIG in September, has been on a high dose of antibiotic that is now just being lowered after about 8 weeks, he is receiving a second round of IVIG next week and we will continue with antibiotics until PANDAS is a distant memory. Because its looks like it might be Rheumatic Fever or a similar resilient bacteria the recommended guideline currently is a daily antibiotic until they are 20 to 25. My father-in-law is a Urologist and says the main issue with long term antibiotic is yeast over growth so many kids take a probiotic daily. Some kids do outgrow PANDAs at puberty. BUT some do not... You will need to be vigilant with your child. Its like any other disease that requires daily attention. Left untreated there are much greater risks.

 

I'd like to recommend a book 'Saving Sammy' The Boy Who Caught OCD. Its a story about a boy who at 12 had a sudden onset and was on a very high dose of antibiotic for an extended period of time. He is now attending college and doing well. Let your husband read it too. Its not as overwhelming as what you've been exposed to here.

 

We've all been in your position and KNOW how overwhelming it all seems... Trust me, you'll become an expert real quick as you will be your son's only advocate.

 

I've been angry, I've been sad, I've cried, I've been obsessed with trying to understanding, I'm sick of Dr.'s office and now I might have a younger son with this disease too.

 

Hang in there.... as your son gets better you'll feel better.

 

-Wendy

[thereishope]

I live life different now. I used to plan so much in advance and nothing really came as a surprise. Now, I live life in short moments. That's how I keep my sanity. When he's sick, I concentrate on getting him better. When he's well, I live for the moment. I don't know what he'll be like a year from now, or even tomorrow. I just can't do that to myself. I live in enough fear as is.But, the good news is, he IS doing well right now. I have a little boy who is strep free, no OCD, no rages, nothing like that. It is so important to believe all will be well. That you will have your child again. You need that driving force.

 

Is there a cure? There's debate about that and different opions. Even on this forum. I believe it is not curable. If you want to use the word "cure", maybe I would agree that a child can be cured from the current behavioral symptoms, but even then, there is no guarantee. Nor is there a definite path that one can follow that will ensure improvement will happen. Each child is different. You can take the advice and experience from others and begin to find out what will work for your own child.

 

I see it that PANDAS can go into remission. The behvaiorial changes can/may go away, your child can be free of strep, the child appears....normal. However, I think that the possiblity is always there for it to resurface if all the wrong cards fall into place again. You wouldn't have to prevent strep to the degree we do if it was cured. When I explain it to my family and others who I think won't listen to my full explanation, I conpare it to an allergy. If a child is severly allergic to peanuts, they need to avoid peanuts. If they don't eat peanuts, they appear fine. But the second they consume one, the allergic reaction happens all over again.

 

I do hope and pray that he will hit that magical age of puberty and it will go away. As for that, I guess I will just have to wait and see. I have a while for that. he just turned 6.

[Megs_Mom]

I'm so sorry you feel so overwhelmed. It is really a tough road. But one with so much hope. I think about the lack of resouces even 10 years ago, and cannot imagine how parents coped. I remember when we were in the early stages of this, and I did not know how to help my daughter. My mind ran to the future - how would she babysit, date, have teen friends, drive, raise a child.... It was a part of the grieving process. I was overwhelmed and panicked. I can only tell you that this stage will pass. Soon you will know so much and be confident in demanding the best possible care for your child. And hopefully, like so many of us here, your child will reach a remission because you have been his advocate.

 

And then you will be where our family is - trying to balance hearts that are full of joy for every day of a normal childhood, with our own fears of what the future may bring. After having at least 3 episodes of severe and debilitating OCD and Panic, our dd8 is just a cheerful happy little kid. She has a tiny bit remaining - maybe 3% - but it does not stop her from doing anything. And in the meantime, people are working on this disease - it is starting to gain momentum. There is plenty of hope for the future.

 

We try to find humor in our lives. We try to educate and help others. We, like so many others here, have choosen to make our families struggle known to others. And we try to keep our PPTSD (parental pandas traumatic stress disorder!!!) down to a minimum, and just live every day with what we are given. Being a mom of a special needs child - whatever that need is - is a very different experience. It gives you a level of compassion for others that is unique.

 

Let us know how we can help!!!

[Kayanne]

It gives you a level of compassion for others that is unique.

This is so true! And it give me and my DH a real sense of gratitude that our child had been returned to us, when so many others are still struggling with this and other things like Autism--that they may not see a recovery...

 

During our phone consult with Dr. Latimer in Sept, we were thanking her for all that she has done, and she said that treating PANDAS children is "gratifying" to her because they do get better.

 

My Daughter doesn't like taking her pen vk twice a day, and she said to me once, "When will I be normal and not have to take medicine?" I tried to explain to her that many, many people take medicine every day...

 

She is only 6 yrs old, but my DH and I feel that she pulled out of her episode with more compassion, empathy, and strength. We actually feel that she is a better child because of it.

 

Now, do I live in FEAR that this will happen again?...absolutely.

 

It is my belief that there is no real cure, just VERY GOOD ways to manage it. My uncle was 10yrs old when he had Rhumatic Fever, he spent a long time in two hospitals. He said that he overheard the nurses say, "That (insert last name) boy probably won't make it", about himself. He made a full recovery, and took penicillian for 20 years without any bowel issues or side effects.

 

The prognosis for these children is very good....here is a very positive thread:

 

http://www.latitudes.org/forums/index.php?...ic=5315&hl=

 

~Karen

[T_Mom]

Welcome and I am sorry you have had to find this forum--

 

YES they can get better--if it is Ps.

 

You may not know it is Ps until you see a course of exacerbations and subsequent responses to treatments.

 

Read: Dr. K's site -- it is clear and easy to follow. www.webpediatrics.com

 

Read: www.pandasnetwork.com LOADS of good info. there--

 

Find a doctor who treats and try antibiotics would be the first thing I tell anyone. Go from there as necessary.

Let us know specific questions along the way and people will share their experiences--

Again, welcome.