What kind of life can I expect?

[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

[DebC]

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

 

 

There is definitely hope! Our daughter was diagnosed a year ago this past January after waking up consumed with OCD fears. She was in the second grade as well. We kept her in school the whole time and had a plan worked out with the school counselors to keep her there. She had a free pass to see them any time she needed help with her fears during the day. At the beginning, that meant she might be in their offices 4 times in a day or more. Dropping her off each morning was a struggle as she would cry to be allowed to stay at home where I could ease her fears, however, we wanted to maintain her schedule as normal and have her keep up with her studies and remain in the same class with her friends. I would hold it together until she was out of the car and then would sob all the way home, but deep down inside, I knew I was doing what was right for her. We treated with antibiotics and between that and time, the basal ganglia swelling gradually decreased. Her visits to the school counselors gradually declined until she didn't need to see them anymore. We also began CBT (cognitive behavioral therapy) with a wonderful child psychologist. This gave our daughter the tools to deal with her fears. By April, she was doing quite well. At her worst, she had extreme separation anxiety along with the OCD. I went to every activity with her and she continued to function. I would sit right outside the door of her dance class so that if she needed encouragement, she could look out and see me smile and urge her on. Granted, she wasn't herself, but it kept her among her friends who were very supportive and loving. By the end of April, she didn't need this encouragement anymore. During the summer, when there was little exposure to illness, she was her normal self and I saw no symptoms. She entered third grade in the fall and in October had a mild exacerbation after flu mist and strep exposure from her brother (both in a week and a half time frame). This exacerbation was obsessive straightening, so was more manageable than the fears that consumed her last January. Any time she was exposed to strep, I called her ENT who would put her on Augmentin to protect her from catching it. Her teacher is great about calling me anytime there is strep in her classroom or any of the third grade rooms. Any time I saw her behaviors increase, I would call our ENT and he would again prescribe Augmentin. I find that in our daughter's case, she has been able to lead a very "normal" life. She has a few more hurdles to overcome than the average child, but is happy and has a great attitude. As for me, I worry quite a bit about the next episode and if/when it will occur. However, I continue to research and keep up on the latest information so that if/when it occurs, I will know where to turn and how to proceed. Our daughter lives a very happy, fulfilling life! She played soccer in the fall, takes 3 dance classes a week (ballet & jazz), danced in The Nutcracker, attends Brownies, and her church Tweener group. It's hard to let her out there among all the germs, but in our case, it is what is best for her. She loves her "normal" life and routine. There is still much happiness with a PANDAS child, it is just peppered with more worries and effort.

 

Hang in there! I know how overwhelming everything is at the early stages of diagnosis when you are thrashing about and looking for answers. We are all here to support you and cheer you along this path.

[thereishope]

My son went from very low point of being non-functional to eventually being "normal" again. This is the reason why it absolutely drives me crazy if someone says PANDAS is controversial or doesn't exist! Then for God's sake how do you explain my son??!!

[kcdc3]

He can absolutely live a normal life. My dd has had PANDAS for 4 years, officially diagnosed last year. During the time that we couldn't find a doc to diagnose, she was quite non-functional. Even during those times, she was still in school....her grades were barely getting by but at least she was there. It was stressful for her, but it forced her to deal with the OCD. When we finally found a doc to listen to us and who would treat, she has gotten better. She is involved in drama and singing. Not too long ago she was cast and played in Cinderella with the Theatre here. Last quarter at school she made the A/B honor roll, she is playing soccer and this past Sunday sang a solo in church in front of 500 plus people. There is hope!!!

[MomWithOCDSon]

As Deb and Vickie have said, yes, there's LOTS of hope! There's frustration, confusion and aggravation aplenty, as well, but the hope prevails!

 

My DS is 13 and, we think, has been suffering from PANDAS for probably 10 years; unfortunately, we didn't know what it was or what to do about it until very recently, so you are very wise and fortunate to have caught it so early! You go, girl!

 

Yes, he will play sports again. Yes, he can go to a regular school. Yes, he can and will do all the things he did before . . . it will just take some time to get back there.

 

A "Reader's Digest" version of our story. DS had constant ear infections from about 14 months until we had tubes inserted in his ear drums at 3; we think this was the beginning of strep in his life, though he's always been asymptomatic except for the pain/pressure in his ears during that period. He had a number of atypical behaviors for a 2, 3 and 4 year-old, and at 6 was diagnosed with OCD. It was mostly mild and controllable, with a significant and debilitating bump at 7 (he forgot how to read, cried all the time, etc.) and then the latest and greatest exacerbation last spring, at 12. He completely fell apart; his OCD went off the charts, he was a babbling ball of anxiety, had panic attacks, could not sleep, we had to withdraw him from school and home school him for a period, etc. That's what ultimately brought us to PANDAS.

 

He's always been in the public school system and generally done very well. In 3rd grade, the school actually suggested a 504 Plan for him so that he could take the state standardized testing untimed (helps him, helps them in terms of likely better score outcome). After this last exacerbation, we knew he was going to need more accommodations in the school setting, primarily for handling his anxiety and OCD issues. The school actually suggested moving the plan up to an Individualized Education Program (IEP) which not only gets him accommodations in terms of untimed testing, extra time for tests and assignments, reduced homework volume, more time between classes without being marked tardy, alternative assignments when a given assignment overstresses him, etc., it also gives him a case worker on site who helps him navigate the school day when we can't be there, and a weekly visit with the school social worker to talk through any issues he wants to discuss. He's intellectually gifted and participates in the school gifted program, too, so the IEP helps him when the homework load overall just gets to be too much for him.

 

We started abx in October, and he started going back to school in November. We put him back in, one class at a time, until he'd built up to a whole day. He's doing really well now, even though there continue to be bumps along the way. The key is to not get too discouraged by the bumps and keep moving forward because the successes and good days do build on one another. A year ago this time, I never would've believed we'd be in the positive place we now find ourselves, and if it can happen for us, it can happen for anyone!

 

You'll be okay . . . keep the faith!

[peglem]

I'd just like to add that after going through something like this "normal" and "ordinary" become very precious and sweet- you will never take it for granted again.

[MomWithOCDSon]

I'd just like to add that after going through something like this "normal" and "ordinary" become very precious and sweet- you will never take it for granted again.

Amen to that!

[thereishope]

Agree!!! I still smile every time time he ASKS to go outside, plays with his sister, raves about school, learning and friendship. etc. Things others may never pause at.

 

 

I'd just like to add that after going through something like this "normal" and "ordinary" become very precious and sweet- you will never take it for granted again.

[tapiash]

He can absolutely live a normal life. My dd has had PANDAS for 4 years, officially diagnosed last year. During the time that we couldn't find a doc to diagnose, she was quite non-functional. Even during those times, she was still in school....her grades were barely getting by but at least she was there. It was stressful for her, but it forced her to deal with the OCD. When we finally found a doc to listen to us and who would treat, she has gotten better. She is involved in drama and singing. Not too long ago she was cast and played in Cinderella with the Theatre here. Last quarter at school she made the A/B honor roll, she is playing soccer and this past Sunday sang a solo in church in front of 500 plus people. There is hope!!!

PLEASE let me know what doctor helped you!! I livbe in NM and we have nothing. I have been searching for a parent who has a child with symtoms similiar symtoms. His blood work is all negative but I think his strep infection was last year. He was treated. Shortly after that little by liitle behaviors increased, ocd, and then this year after a flu mist vaccine his symptoms went off the wall.

[airial95]

My guy is still young (2 1/2) and we haven't had to deal with real school yet - just day care, but we've focused on trying to keep his life as normal as possible. Even continuing our normal weekend outings (he gets to pick one weekend, his sister the next) even though they're sometimes very stressful and we feel like we've got a ticking time bomb. Now that he's progressing so well on the abx, we've found that continuing to try to treat him "normal" - not excluding him or rearranging his schedule to accomodate his episodes, has helped him a bit. He likes to tell me how much of a "big boy" and "good boy" he was at school, or on Tumblebus, or wherever. His eyes glow with pride when he has a good day and I think that keeping him in his favoite activities and outings gave him some sort of solace from the craziness I know he was fighting with in his little head.

 

Sounds silly I know, but we felt it was important, and so did our Dr. We just made sure all of his teachers knew about his issues and triggers and gave some tips (whatever few we had - usually just make sure he can't hurt himself or others and let him be) to deal with him if he got difficult.

[LNN]

I'd just like to add that after going through something like this "normal" and "ordinary" become very precious and sweet- you will never take it for granted again.

Amen to that!

 

You will eventually see "normal" again and enjoy periods of remission and/or cure. But you could also come out of it with something else, just as sweet as the appreciation for "ordinary." Kids who have to grow up quickly due to tragedy or struggles, kids who learn they aren't like other kids for whatever reason - can develop an inner strength and wisdom. For awhile, both my son and I went thru a period of mourning. it wasn't fair he was being robbed of a care-free childhood. But then we spent some time talking about a girl in his school who will be in a wheelchair for life. The school had just gotten a new playscape and it was the focus of great fanfare. My son was feeling sorry for himself - it wasn't "fair" that he had to have PANDAS. But we talked about how it wasn't "fair" that Helen could only watch the other kids enjoy the playscape and how she'd trade places with my son in a heartbeat.

 

It took awhile, but I think he now understands that there are a lot of people who are worse off than him and that if you look carefully, there can be gifts that come with the hard times. He also enjoys it when I tell him that PANDAS kids have better memories than other kids, that they are braver, that they often have close families who can talk about hard things, that thanks to ERP, he knows how to be the boss of his feelings and thoughts way better than many adults...He's achieved so much not just in spite of PANDAS but also because of it.

 

Believe me, I'd happily not have PANDAS in our lives. But since it's here, we have found some unique things to be grateful for.

[tired mom]

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

[/quote

 

It is so overwhelming to take everything in at once. Take it a day at a time and give yourself time to think. Once you find the right treatment everything will fall into place and you will be on the bench cheering your son on as he hits a homerun!!!!Stay positive...

[bgbarnes]

Thank you all for your replies! I really needed to hear the positive that it WILL GET BETTER!!!! Had some good news today- I had my ds tested for strep ( quick and long) and the quick came back negative ( but I could have told you it would because of the change in behavior- the 20 million dollar question is is it REALLY gone and for how long) I also was able to talk to my normal pediatrician ( not the one who suggested PANDAS- that was her partner) and they have had a PANDAS patient before so they BELIEVE and she thinks it makes a lot of sense for my DS. Have an appt with an allergist/immunologist that has the Cunningham test on Tuesday so maybe I will get some answers sooner vs later!!!

THANK YOU THANK YOU!!!

Brandy

[P_Mom]

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

[bgbarnes]

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