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Question about raising a kid with PANDAS, Lyme anything abnormal


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Guest pandas16

I know this question really can’t be answered publically, as it’s kind of “messed up” to ask, but I genuinely don’t mean it in a messed up way. I’m just thinking of my future and trying to figure things out, whether or not I want kids etc. So if you had known that your children were going to have PANDAS, that you would have to deal with IEPS, specialists, psychiatrists, psych drugs, bullies, fears of never having a normal child etc... Would you have still had your “PANDAS” kid? Have they been more of a burden than a joy? How has your life changed? How has your marriage changed? How hard is it to raise someone with PANDAS? I turned out okay for the moment. (Finished school, have a degree, have friends, have a job, have a boyfriend) but I have an abnormal amount of determination and great parents. Like I said, I really don’t mean this question in a messed up way although I know it comes off that way. I’m just trying to think of my future.

 

Kids with the disease most likely read this forum so it would probably be best to PM me as I don’t want anyone to be hurt reading answers but I really would like to know the parent perspective? Please just PM me if you do have regrets that way no ones feelings would be hurt. That's not my goal here.

Edited by pandas16
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I'm going to answer here, because I don't think my answer will offend anybody and anybody who is able to come here and read is miles ahead of my child in functioning.

 

First of all, I've raised 3 "normal" children before my disabled one and I'd like to point out that parenting is a challenge-period.

 

I can't say what I would have done if I'd known in advance that my fourth child would have the difficulties that she has. I would have had no idea what the blessings are, so would have only had the negatives in front of me.

If I had it to do all over again, knowing what I know now, I wouldn't choose to not have my daughter. Its hard to explain. The challenges are often overwhelming and I've had to make great sacrifices-but this particular journey has strengthened my capacity to love and my ability to face adversity with courage and determination. My faith has also greatly increased.

 

In my case, becoming a strong team for the good of our child has made our marriage better, but i know that's not always the case for others. That is probably largely dependent on the individual personalities in the marriage. I used to worry about what this kind of life was doing to my daughter's 3 older siblings because, truly our whole family has been formed and shaped by the needs of the youngest. But, what I see in their young adulthoods is that the struggles faced growing up with this have given them much the same gifts as it gave me. They have amazing compassion for others and are confident in their abilities to face and overcome adversity.

 

For what its worth, I think your own experiences w/ PANDAS have made you uniquely qualified to be hugely successful raising a child, PANDAS or not.

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Thanks for answering. I know that I asked personal questions so I wasn't sure how many responses I would get which is understandable. I think I could prevent PANDAS with all that I know now but a part of me just doesn't want to deal with it. PERIOD. No more children's hospitals, no more pediatricians, no more doctors except my own. Originally, I thought of adopting a kid with PANDAS because I think environment is equally as important as genetics. Why bring a PANDAS kid here if I could just save one sort of mentality? As in my case, my genes clearly suck but I had a good structured environment and turned out okay. The stronger part of me feels like I could get my kid fix at school as a teacher and borrow my sisters kids every now and then if I get bored. I'm not sure. I watched my own sickness change my family dynamics.

But, all of your experiences and family experiences shape the family dynamics and who the individuals become. That's the nature of life. You are a product of your genes and your experiences in life. There is no way to know who you'd be right now had you not experienced PANDAS. You and your family would be different people, maybe better, maybe worse. The trick is to grow from every experience in a positive direction- and you seem to have a knack for doing that!

 

A part of me just doesn't want to deal with PANDAS anymore, either!

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Hi pandas16. I don't think I've ever responded to one of your posts before, but I have read about you on here over the years.

 

You raise some thought provoking points. Points I don't even like to bring to the front of my brain! However, still very interesting.

 

I have to preface my answer by saying that my dd is doing perfect currently. And she has been for quite some time. Her pandas was a sudden onset type and was very exorcist like and that lasted for about 15 months of time prior to get getting ivig, and then she got better over the next year. She is now turning 10 this month. This all started for her 4 years ago, so she was quite young and I feel now she is healed (although I don't ever say cured).

 

My dd illness completely changed everything about our family, my outlook on life, my emotional reserves and financial reserves (!). But now that she (and our family) is healed, we are BACK and stronger than ever, smarter than ever and more determined than ever to enjoy our life to the fullest and NEVER EVER take for granted being healthy. Seeing healthy children (her but also complete strangers at times!) playing brings me to tears now just being so happy that they are so lucky and able to actually play as children are supposed to do! Or even seeing children walking into a school building, same thing!

 

My oldest dd is 25 now. I know the thought of having a pandas child will weigh on her mind when she is in that stage of her life; we've talked about it. I hope it doesn't deter her from having children. People in general go through horrible tragedies every day and thankfully it doesn't keep the human race from pressing on. But it sure did kick my butt for a while there and so too my dd's. So I do understand the question. If you had asked me during the middle of the experience a few years ago, it may have been a different answer. But after my pandas dd healed, I began to heal and once momma is ok the rest of the family is too. I would definately do it all over again!

 

 

Good luck.

 

regards,

amy s

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I didn't read your whole post but I can say that up until now yes they have been more of a burden than a joy (they each have/had multiple special needs), I have been more of a nurse than a mom, my marriage has many times reached rock bottom and it still remains to be seen if it will recover, and we are close to broke due to medical expenses and lost wages. Now that things are better I am finally seeing what the joy of parenthood is all about for the first time, so I guess I have to say that if I had to do it all over again, yes I would have had my boys. I love them both deeply.

 

With all that said, I do think that you are in a position to prevent or reduce the severity of any pandas or disability your children may have: clean water (no fluoride, chlorine, etc.), organic food (as much as can be afforded), non-toxic environment (including minimizing or not vaccinating while pregnant or the children), keeping EMFs in the house low, add supplements to support the immune system right from birth, and not to mention an infant can be given a homeopathic remedy to help prevent issues. I would suggest going to Dr. Mercola's website and signing up for his newsletters, he does a tremendous job of bringing to light what is healthy and what is harmful.http://www.mercola.com

 

Also, the homeopath that we discussed just posted the following on a question and answer session pertaining to pregnancy, passing down disease. If you can wrap your mind around homeopathy, this is a very interesting concept (BTW, I'm pretty sure this person had me in mind when answering this one!):

 

 

Question:

 

Does homeopathy resolve inherited family disease or patterns of behavior? If I got pregnant, would it help to get treated homeopathically to prevent patterns of disease being passed on?

 

Answer:

 

The answer to this question is –absolutely yes – we do seek to do that. We very much take into consideration the family patterns of disease – or miasms – in homeopathy. That is one of the greatest things about it – it can actually strengthen the family line generation after generation. Patterns of illness get passed down through generations, and if they are not ‘healed’ by the body or instead are in some way ‘suppressed’ – the pattern of illness gets can be passed on in a chronic or even more ‘concentrated’ way to the next generation.

 

 

For example, one pattern that I sometimes see in cases is: The ‘Grandparents generation’ was abusive, alcoholic, depressed and neglectful to their children creating an unsafe household for a child to grow up in. Out of that household comes the ‘Parents generation’ - these parents manage to survive their childhoods, get to college and they start to get depressed as a result of their upbringing, their physical health starts to worsen. They then take pharmaceutical drugs to suppress those feelings – like antidepressants, as well as drugs to suppress any feelings of pain, and may have taken these drugs during pregnancy. The next generation of kids – our patients – have an inherited pattern that is even more concentrated – with a very specific pattern of grief or anger or insecurity that can be linked back generations. The toxicity in the environment that these kids receive just serves to exaggerate the pattern even more.

Edited by Stephanie2
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I'll bite on this because I have a different perspective. We adopted our DS. Yes, I would do it all over again. I have no regrets. I love him. He has brought such joy to us. He has also brought us to the depths of sadness and near hopelessness. He went undiagnosed for nearly 2yrs. He also was an exorcist presentation w/ lots of raging. There were times when I wondered why on earth we had brought this to our lives. However, our love for him gave us the strength to continue to search for answers to his behaviors. Abx and then IVIG have brought him (and us) much needed relief. It has taught us many lessons in how much strength we have to persevere when things are very bleak. It has made for some extreme stress in our lives but we keep trudging on in the belief that we will all get through this.

 

We were married for more than 20yrs before our DS came along. We have weathered many things but I have to say, I hope this is the worst of it!

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I'll bite on this, too.

 

I think it is virtually impossible to ever, ever regret having a child that is here in your life- that love is unreproducable, and has to be experienced to fully understand, IMO. It is the very best of living. It is so beautiful.

 

I am done having children, but knowing what I know today, well.... Autism would scare me, with 1 in 67 boys, 1 in 90 children being born today who will be dx'd with it- but if I knew what I know now, I would do many things different to try and stave that off- do the vaccination schedule completely different, etc. (None of my children have autism)

 

And today, realizing I have Lyme disease, and that it can be passed through the placenta and breastfeeding, and after watching the movie 'Cure Unknown' where it showed a woman who went through her own Lyme treatment, felt much better, but still had a child that tested positive for Lyme....well, I don't know. Knowing that I had Lyme, I honestly can't say whether I would have had more than 1 child.

Hoped I'm not judged for that, but that's how I feel right now.

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Pandas16, if you are like most woman, you will be married/deeply in love, and baby fever will hit you.

When that happens, babies happen :-) It is pretty powerful (or at least in my case)

Seems to be Mother Nature's way to make sure the species procreate.

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