Am I foolish to think that my daughter is going to get better?

[BeeRae22]

I had a depressing thought today.... I am starting to wonder, at 6 months into this journey, am I a complete fool to think that my daughter is going to get better? I want her back. I want our regular lives back so bad. I don't want this new normal. Am I supposed to feel great full that she's still going to school? That she still has friends? Because, maybe next year she won't?

 

Having a bad day

[MissionMama]

I hear you. I am for sure Debbie Downer as of late. Our world crashed 10/25/13 and am desperate for the health and functionality we once had....knowing there are families with it much worse, I feel weak for feeling so hopeless.

 

How's that for offering encouragement?? Ha. Ha. Hang in there....!!

 

Kristi

[nicklemama]

I do not think its foolish thought. It just takes a long time, especially if your child was not diagnosed and treated right away. My son was 5 when it started. Took a year to diagnose. Treated with abx and IVIG. Found lyme a year ago and started treating that and now he's doing great. Its a long road to getting better for most. You have to dig around and find what works for your child. One size does not fit all as far as PANS is concerned.

[WorriedDADNMOM]

Absolutely don't give up. It is not foolish and many of us on here completely understand the shear hopelessness one might feel regarding Pandas/Pans. However, your child can and will get better. Keep fighting and get a good Pandas/Pans doc on board. The fact that she is still in school and has friends are very good signs.

 

We worry everyday...and with each strep encounter and flare, however small it may be, we wonder when it will be IF and WHEN we will be past this. It is a crappy hand to be dealt for sure, but I refuse, as long I have money to pay for supplements, and not have to go the mainstream route with docs, I feel like we can manage it.

[911RN]

I had a depressing thought today.... I am starting to wonder, at 6 months into this journey, am I a complete fool to think that my daughter is going to get better? I want her back. I want our regular lives back so bad. I don't want this new normal. Am I supposed to feel great full that she's still going to school? That she still has friends? Because, maybe next year she won't?

 

Having a bad day

My child has always gone to school. I think there are extremes to the disease process. The ones that don't go to school are likely the minority not the majority. Nobody likes the "new normal." I have been in a new normal for 10 years. I don't like it, will never like it but I have made peace with it. If not, it will drive you craaazy! My son is better. Is he the child I had before-no. Do I give up hope- NO!! I His potential is unknown at this point. His unknown potential gives me more hope than being the fool that thinks I can unturn the clock and have the child back I once had. Look forward, not back. All you can do.

 

Hugs for the bad day....have had many myself.

[Rachel]

Never Ever Give Up. My son has been sick since December 2010 and has not been able to go back to school. However, I have not given up hope and neither has he. He wants to go back to school even if it means being in a wheel chair. However, with a comprimised immune system this is not possible at this time. His doctor has told us that it is going to be a long haul. My son just had his first IVIG treatment 2 weeks ago and will be going through another one in 2 weeks. He goes to school online and skypes with family and friends. This is not much of a social life but it's the best I can do for him. His big brother chose to do online schooling also so he could stay home and try to keep little brother's spirits up. There is a 3 year age difference between them. Life does not always work out the way you think it should. Be thankful for the small victories and positive attitudes. All I can tell you is to hang in there and Never Ever Give Up!

[bigmighty]

It took 16 1/2 months to get DS back to functional. Now he has been in a good place (with only a few setbacks) for two whole years. It is a struggle, but all of your efforts will pay off. Sorry it is not instantaneous and that there is so much trial and error involved. But there is a wealth of information available to you. Just keep gathering information and trying things that make the most sense for your situation. Eventually, you will hit on the right specialists and best recipe for success for your DD's situation. Sending virtual hugs. Hang in there.

[LNN]

Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.

 

It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.

 

I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.

 

I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help

Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)

http://www.lifebuzz.com/8-things/#!LfOA7

[pr40]

what is really, really, really difficult when you have a child with PANDAS is that you also have to fight this with a little help of medical professionals.

beerea22, have you tried contacting dr sweedo and asking for help?

[MaryAW]

Dr. Swedo said that our children will outgrow PANDAS. I asked her when, and she said by their early 20's. From the message boards, it seems as though some outgrow it sooner than that. With PANS, they do not know for sure, but I feel like my daughter after 2 1/2 years now is getting better from PANS. What we as parents have to do is minimize the "collateral damage" from the disease by providing our children with the best care possible. Minimize exposure to strep and other serious illnesses, strengthen their immune system by raising their vitamin D levels and giving high quality probiotics. Supplement with high quality Omega 3's to reduce inflammation. Find a great CBT therapist. Read up on the illness here at Latitudes or

Beth Maloney's book, "Childhood Interrupted: The Complete Guide to PANDAS and PANS." Most of all, love them and be kind and patient

[beeskneesmommy]

My son was dx at age 2.5. In retrospect I know that the onset was around 18 months and that he was getting Strep as an infant! We battled this beast hard. I cannot tell you how many nights I crept into his room in tears and whispered for him to "come back". Those days were very, very dark. I went thru some pretty devastating depression, but kept going because I had to. I would not be satisfied with less than getting him back. Fully. There were times when I felt the way that you are now...many times. I remember hope waning away and crying myself to sleep for the "loss" of my sweet boy, so many nights. Here we are, at age 7. It's been hard work, lots of research and the help of some wonderful specialists and PANDAS friends. However, he is well. He has been well consistently for almost a year. There have been some minor, and I mean minor concerns since last August, but nothing that has affected his daily life. This is the first allergy season that he has managed without significant flare. He is bright, articulate, getting great scores at school, happy, and fully engaged in sports, friendships and life. he is NORMAL!

 

The biggest pieces of advice that I can give: Get with a specialist, or 2 ASAP. Test for infection so you can target with the appropriate abx. Do not look upon this as 1 cause, 1 cure. rather, consider several angles and pieces of the puzzle. Ask for help, anywhere you can get it. We have all been there and we are willing to help in the areas that we know how!

 

Hang in there and know that you are NOT alone!

 

May love and warmth and comfort come to you tonight.

 

Kath

Edited May 9, 2014 by beeskneesmommy

[SSS]

Really nice posts, and

 

LLM, your writing is absolutely brilliant, as usual, with your wise insightful perspective.

[mar]

Beerae22 things will get better!! I have had so many of those days trust me where I just wanted to curl up or I just felt this is the rest of my life. It is not get back into it and you have to keep living and have that strong attitude. My mAin deal was with ds and when dd would not go to first gradewithin two weeks of screaming and crying and me dragging her out of car and what not. Basically things will pass . It is a struggle but do not give up. Help in he way you can and don't be hard on yourself .

[Broo100]

Looking back, my brother had Pandas growing up. Weird tics all that came and went. OCD. Add. You name it. He just outgrew it and is now a big boss at a multinational corporation. I think about him every time I get worried about my ds. I feel that, at least, my son has tools and support that my brother never had (like this board!).

[smartyjones]

we are about 5.5 years from when I ever first heard the word "PANDAS". we were fairly lucky - it was about a month or so after my son's bizarre behaviors started. likely sometime - 6-12 months, like you beerae22 - after that a friend posted on facebook (not related to me, just in general)

Life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain. - Anonymous, more recently attributed to Vivian Greene

I remember crying and crying and crying and thinking - I don't WANT to learn to dance, I just want it to STOP f-in' raining.

and after some time of wallowing in that, a voice spoke in my head that said, "too bad, honey, it's raining and it's raining hard - so you better learn to dance or you're just going to be wet."

 

Marianne Williamson once said when she gives advice, sometimes people say to her, "well, that's easy for you to say - you are not in this." and she says, "yes, it is - that's why I'm saying it"

I want to say some things in that manner. I don't want to sound harsh - I know how you are feeling, because I've felt it -- I just don't feel it anymore. I'm on the other side and I know you will get there too. you just need to keep going in where you are now -- don't stop now - you'll be stuck where you are.

 

yes, beerae, I know you want your life back and do not want where you are now. unfortunately, that is not where you are . so - yes, you are supposed to be grateful that she is in school and that she has friends -- NOT because she may not have that next year, but because those are wonderful things to be grateful about.

 

it's funny how relative things are -- I recently did some work at my kids school with a very sweet 3rd grade boy who has behavioral issues, tricholomania, tics - and that's what I know in a few hours. and all I thought was - I hope his parents know how disregulated his immune system is and are working on healing it. I left that day feeling grateful that although it's been h**l and I NEVER would have chosen it, I know how troubled my son's entire system was, I know how we got him back on track and I have plans in place to keep him healthy and what to do when/if he slips. I know what he needs and how to work with him and it was NOT the level V school incompetent school officials tried to tell me it was 2 years ago. how many kids there also should not be there but no body knows it?

 

you may find it helpful to use the Buddhist practice of seeing what there is to be grateful about what you are loathing at this minute. the times I have been able to do that - it's been bizarre -- it's like it just crumbles away -- maybe not the problem but the helplessness and despair.

 

and no, you are not foolish - she will get better -- it just likely will not be on your time schedule. good luck