What kind of life can I expect?

[DebC]

Brandy....good to hear! Where are you from?

 

I am from Plano, Texas ( outside of Plano) We just saw my friend who is also my Chiropractor- she is an MD/DC- amazing woman. When I told her about PANDAS- she did research on her own ( love her!) and she agrees 100% that my DS has PANDAS!!! The confirmation is great- It sounds as if I am lucky since it was my Pediatrician's office that first suggested it( another Doctor in the practice thinks it is "likely" too) and this other Dr agrees. Neither will treat it but one will write me a note for the school-so that is a HUGE step forward. My son is not Exacerbated at this time so it is not an issue but next time he is- OUT of scool he goes and no more battles!!!

Where are you from?

Brandy

 

 

Brandy --

 

We are in Plano too!!!

[simplygina]

Since I am a week into this my head is SWIRLING with information, fear and hope.....what does my future look like with my DS?? What does his future look like??? He has always been very active- sports etc.... will he be able to play sports( baseball is his favorite and best) or is that just too much of a risk? Are their kids who attend regular schools or are most home schooled? If he attends regular school do I need a 504plan(I think that is what it is called)? He is a young second grader and I am thinking about having him repeat the grade since we don't know what the next year will bring medical treatment wise? Do any kids live "normal" lives??? If so how long did it take to get your PANDAS under control???

Thanks!!

Brandy

 

I haven't read all the replies but I just want to tell you that my son leads a really normal life. He goes to public school, is on a karate team, does summer camps, has lots of friends that are very accepting of his "quirks" and does well in school with teachers who really like him. Most people don't even know he has issues until I tell them. We just have periods that are harder. I think I'm the one that takes it the hardest of all. I don't believe isolating him is good for him mentally and things have never gotten so bad I've considered doing a specialized education plan for him. We just take it one day at a time. I don't know when or how he'll get "all better", but as long as he is happy I really think that is all that matters. He's 10 now and I can say that for us it started at least when he was 5 but probably earlier than that. Since we started taking abx a month or so ago things have more or less continued to get better so I'm hopeful but I try to not project too much into what will happen in the future because I just don't know. I do think that more is being learned everyday and the more kids that are recognized as having PANDAS the more we will have the experience to find out what works for these kids. Good luck. This board has been a life saver for me.

[bgbarnes]

Since I am a week into this my head is SWIRLING with information, fear and hope.....what does my future look like with my DS?? What does his future look like??? He has always been very active- sports etc.... will he be able to play sports( baseball is his favorite and best) or is that just too much of a risk? Are their kids who attend regular schools or are most home schooled? If he attends regular school do I need a 504plan(I think that is what it is called)? He is a young second grader and I am thinking about having him repeat the grade since we don't know what the next year will bring medical treatment wise? Do any kids live "normal" lives??? If so how long did it take to get your PANDAS under control???

Thanks!!

Brandy

 

I haven't read all the replies but I just want to tell you that my son leads a really normal life. He goes to public school, is on a karate team, does summer camps, has lots of friends that are very accepting of his "quirks" and does well in school with teachers who really like him. Most people don't even know he has issues until I tell them. We just have periods that are harder. I think I'm the one that takes it the hardest of all. I don't believe isolating him is good for him mentally and things have never gotten so bad I've considered doing a specialized education plan for him. We just take it one day at a time. I don't know when or how he'll get "all better", but as long as he is happy I really think that is all that matters. He's 10 now and I can say that for us it started at least when he was 5 but probably earlier than that. Since we started taking abx a month or so ago things have more or less continued to get better so I'm hopeful but I try to not project too much into what will happen in the future because I just don't know. I do think that more is being learned everyday and the more kids that are recognized as having PANDAS the more we will have the experience to find out what works for these kids. Good luck. This board has been a life saver for me.

Thank you- this is exactly what I needed to hear- fear has been running me ragged and I just need to remember walk in faith....( granted my son is on abx right now so it is a lot easier- within 3 days of going off of a traditional 10 day course he started backsliding and I have my sweet son back- so it is easier when the house is at peace!!)

BRandy

[T_Mom]

Brandy--

 

Welcome, and I am sorry you have had to find this forum! ...but it has also been a life-changing resource for our family.

I would say you have to look forward to health once more -- once the right treatment takes hold.

 

Each child reacts differently -- but over all Buster's flowchart (at the top of the forum under helpful threads) is a good place to start and continue-- some of us have had children who, at the start, were rendered completely unfamiliar to us by Pandas, others have had children with very mild symptoms, yet I believe the good news is that treatment is definitely possible and thankfuly it is clearer now to us on this forum then it was 2 years ago--what works!

(well at least clearer to me then it was--others no doubt knew!)

 

Don't be afraid to take the steps necessary to help your child, and take a look at that great flow chart--

Best--T.

Edited April 11, 2010 by T.Mom