Feeling completely hopeless today

[Stephanie2]

I guess I am trying to draw on the strength of the women on this forum who have been there. It seems like I read so many posts of moms who's child is going backwards, even with prophylactic abx and/or ivig. I mean what is really the cure rate of this illness? I am feeling so hopeless today and I am wondering if I should just cave in and give my child some medication to help with his symptoms (anger, rage, tics) and pull him out of school and find a special needs program for him.

 

Here is where we are at. I am convinced that he has pandas, sudden onset of ocd, tics, rage with positive strep culture, etc. We have been giving him abx off and on since august but I just don't think that the docs are giving him a high enough dose. We have our first appt with Latimer on Oct. 20.

 

I don't know why I am feeling so hopeless, I guess because my child is really backsliding today. Tics, anger, etc. And I guess because I am trying to prepare myself for the worst, that he will never be cured and we just have to learn to live with this (which I'm not sure I have the strength to live with). And also b/c I think maybe my other son may have it (he is 19 months). Maybe b/c we have been dealing with this for so long (over 3 years) that I think it is just too good to be true that maybe it will end someday...

 

Any success stories would be helpful, maybe would give me strength to put one foot in front of the other and just keep moving...

 

Thanks,

 

Stephanie

http://thelight-stephanie.blogspot.com

[amy s]

I remember feeling like you describe. I was in a horrible state when my dd was really bad and it has taken me a long time to feel better. But my dd IS BETTER now. It's been almost a year since her IVIg and she REALLY IS better...and had gotten steadily better since IVIg. It doesn't mean that I am not still living in absolute fear that it could come back, because I do. But it won't ever get that bad again, because I am armed with knowledge this time. THERE IS HOPE!

[Stephanie2]

Wow, I can't imagine living one year without pandas! In the last 3+ years I can only remember about 5- 6 weeks of normalcy. I guess that's why I can't even PICTURE a year of a healthy child and a "functional" home! Thank you so much for your response and congrats!

 

Stephanie

 

I remember feeling like you describe. I was in a horrible state when my dd was really bad and it has taken me a long time to feel better. But my dd IS BETTER now. It's been almost a year since her IVIg and she REALLY IS better...and had gotten steadily better since IVIg. It doesn't mean that I am not still living in absolute fear that it could come back, because I do. But it won't ever get that bad again, because I am armed with knowledge this time. THERE IS HOPE!

[KeithandElizabeth]

I just have to say that I really needed to read your post tonight!!! Thank you so much. We do not hear that often from the people who are doing so well - because they are happily living their lives!! Is your daughter still on antibiotics?

 

I am so happy for you and for your whole family!!!

 

Elizabeth

[thereishope]

Well, my son has been through this 3 times so far. Each episode has been different. Each length of time for recovery has varied. But each time I did get eventually get my son back.This last time, it took 5 months to fully get him back. I know that's short compared to others and I know I am lucky. It's normal to think it won't ever change and this is your new life, but you must somehow find that hope and determination to get your child back. I had moments I turned to my husband and said "If needed, we can always do meds (psych meds),right?". So, you're not alone to ever have that thought. Now, I see that they can sometimes make things worse for PANDAS kids, but I was relieved to always feel I had a fallback. There was always something else to try, if needed.

 

Yesterday, I took my son to have his 6 year old pics taken. I was so nervous. Whe nhe had his 5 year old ones done, he was into a PANDAS epsisode. But that day we didn't know what was going on. We didn't know he had an active strep infection. We didn't knw he had PANDAS. We knew he had OCD out of no where. I look at those pics from a year ago and his eyes look so sad and trapped. I was never able to bring myself to show anyone those photos or put it on the wall. Well, yesterday, we walked into the studio and he did awesome. He posed for the camera, let the photographer touch him to guide him and I have pictures with smiles galore. The difference is unbelievable. I say those pics are PANDAS in pictures. You can see what it was doing to him a year ago and how he is now...RECOVERED. They don't look like the same boy.

 

Just try to find the strength.I pray you will soon be writing your success story to someone.

[smartyjones]

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

 

A friend sent this to me about a month ago - it just made me cry - I don't want to dance in the rain!

 

But it is raining so we all best dance together!

 

 

When my first son was 12 days overdue (and 9lbs 9 oz - thank you very much!), I had acunpuncture to induce labor. The acupuncturist was a very wise woman who had previously been a midwife. I don't think I'll ever forget when she told me, "you have the strength with you of all the woman who have gone before you in this".

 

You really do have all the strength of all the parents who have gone before and are here now with you!

 

~Kathy

[chrisw]

Hi Stephanie,

My son had IVIG with Dr. K in April of this year. He runs between 85-95% better than before IVIG, depending on the day and if he has been exposed to things at school. Life is good right now and he is much happier. He takes 500mg. of Augmentin daily (he is now 10yrs. old) and is SO MUCH easier to live with. I have faith that he will continue to get better and eventually grow out of it. You are in my thoughts. Hang in there.

Christie

[Stephanie2]

Oh, Vicki I can so relate to the pictures!! When my son was 3, at the end of the year the teacher gave each of us pictures of our child of different events that occured throughout the school year. Can you believe that my son was not smiling in ANY of the 15 pictures that we got back? In fact, he was crying in 3 of them. At the time I did not know what was wrong with my child. I showed the pictures to him and I said, "you look so sad in all of your pictures! do you think you should smile when people take your picture?". Ever since that day he has plastered on a smile for the camera b/c it really affected him to see himself like that. But ya know what? His new smiles for the camera are not the happy, innocent smiles of a 5 year old. They are fake smiles of a boy who is trying to be strong, trying to be normal. I can't wait for the day when his smile is genuine (we have had some of those days recently, but they don't last long)...

 

Thanks for the encouragement!

Stephanie

 

Well, my son has been through this 3 times so far. Each episode has been different. Each length of time for recovery has varied. But each time I did get eventually get my son back.This last time, it took 5 months to fully get him back. I know that's short compared to others and I know I am lucky. It's normal to think it won't ever change and this is your new life, but you must somehow find that hope and determination to get your child back. I had moments I turned to my husband and said "If needed, we can always do meds (psych meds),right?". So, you're not alone to ever have that thought. Now, I see that they can sometimes make things worse for PANDAS kids, but I was relieved to always feel I had a fallback. There was always something else to try, if needed.

 

Yesterday, I took my son to have his 6 year old pics taken. I was so nervous. Whe nhe had his 5 year old ones done, he was into a PANDAS epsisode. But that day we didn't know what was going on. We didn't know he had an active strep infection. We didn't knw he had PANDAS. We knew he had OCD out of no where. I look at those pics from a year ago and his eyes look so sad and trapped. I was never able to bring myself to show anyone those photos or put it on the wall. Well, yesterday, we walked into the studio and he did awesome. He posed for the camera, let the photographer touch him to guide him and I have pictures with smiles galore. The difference is unbelievable. I say those pics are PANDAS in pictures. You can see what it was doing to him a year ago and how he is now...RECOVERED. They don't look like the same boy.

 

Just try to find the strength.I pray you will soon be writing your success story to someone.

[michele]

Stephanie I know how you feel. Everyday is a challenge. I spend most of my days on the phone with Dr's or going to appointments and I have 4 kids. It just feels like we will never get this figured out. It is so frustrating and depressing. I know how you feel when you think maybe the baby could have it too. I spent the last year with my 2 year old in early intervention and 3 therapies when I noticed signs of dev delays. I think I may have overreacted but with my 7 yr olds neuro history I had to do everything possible right away. Her speech has really improved. She still has sensory issues but she is getting better. Her low tone is improving in her feet. My son on the other hand is 7 yrs into this and is not showing much improvement with the mood symptoms since he had PANDAS at age 1 after strep. He used to get better inbetween but not anymore. He now has behaviors and tics and compulsions daily. We seem to be the only ones here who didn't get improvement from Dr. Latimer. She gave the steroids but they didn't help because of his anxiety and rage getting worse. We have seen so many different Dr's and she was the best one who knows the most on PANDAS and she didn't offer us much hope other then meds. I pray you find better success. It seems we have every PANDAS symptom but still we have to realize he is not getting better since he now seems Aspergers and OCD and Tourettes also. I am feeling so overwhelmed because the rest of my family and kids are suffering too. I am now taking them all to therapy since they are 10, and 13 and this is rough on them to see their brother act up so much. I think I will have to turn to respite care through MRDD for him at times since he doesn't transition well and possibly meds for myself since I feel very stressed and my parents are leaving for Florida for the winter and they are my only help. I just am praying we see improvement soon since we are using Risperdal now and seeing a different psych next week who may be able to try meds for the comorbid symptoms like OCD, anxiety and ADD. We have home visits through MRDD with a behaviorist. It is all so much! I am here for you. I read your blog. That is a good outlet for your stress! Good work.

 

Michele

I guess I am trying to draw on the strength of the women on this forum who have been there. It seems like I read so many posts of moms who's child is going backwards, even with prophylactic abx and/or ivig. I mean what is really the cure rate of this illness? I am feeling so hopeless today and I am wondering if I should just cave in and give my child some medication to help with his symptoms (anger, rage, tics) and pull him out of school and find a special needs program for him.

 

Here is where we are at. I am convinced that he has pandas, sudden onset of ocd, tics, rage with positive strep culture, etc. We have been giving him abx off and on since august but I just don't think that the docs are giving him a high enough dose. We have our first appt with Latimer on Oct. 20.

 

I don't know why I am feeling so hopeless, I guess because my child is really backsliding today. Tics, anger, etc. And I guess because I am trying to prepare myself for the worst, that he will never be cured and we just have to learn to live with this (which I'm not sure I have the strength to live with). And also b/c I think maybe my other son may have it (he is 19 months). Maybe b/c we have been dealing with this for so long (over 3 years) that I think it is just too good to be true that maybe it will end someday...

 

Any success stories would be helpful, maybe would give me strength to put one foot in front of the other and just keep moving...

 

Thanks,

 

Stephanie

http://thelight-stephanie.blogspot.com

Oh, Vicki I can so relate to the pictures!! When my son was 3, at the end of the year the teacher gave each of us pictures of our child of different events that occured throughout the school year. Can you believe that my son was not smiling in ANY of the 15 pictures that we got back? In fact, he was crying in 3 of them. At the time I did not know what was wrong with my child. I showed the pictures to him and I said, "you look so sad in all of your pictures! do you think you should smile when people take your picture?". Ever since that day he has plastered on a smile for the camera b/c it really affected him to see himself like that. But ya know what? His new smiles for the camera are not the happy, innocent smiles of a 5 year old. They are fake smiles of a boy who is trying to be strong, trying to be normal. I can't wait for the day when his smile is genuine (we have had some of those days recently, but they don't last long)...

 

Thanks for the encouragement!

Stephanie

 

Well, my son has been through this 3 times so far. Each episode has been different. Each length of time for recovery has varied. But each time I did get eventually get my son back.This last time, it took 5 months to fully get him back. I know that's short compared to others and I know I am lucky. It's normal to think it won't ever change and this is your new life, but you must somehow find that hope and determination to get your child back. I had moments I turned to my husband and said "If needed, we can always do meds (psych meds),right?". So, you're not alone to ever have that thought. Now, I see that they can sometimes make things worse for PANDAS kids, but I was relieved to always feel I had a fallback. There was always something else to try, if needed.

 

Yesterday, I took my son to have his 6 year old pics taken. I was so nervous. Whe nhe had his 5 year old ones done, he was into a PANDAS epsisode. But that day we didn't know what was going on. We didn't know he had an active strep infection. We didn't knw he had PANDAS. We knew he had OCD out of no where. I look at those pics from a year ago and his eyes look so sad and trapped. I was never able to bring myself to show anyone those photos or put it on the wall. Well, yesterday, we walked into the studio and he did awesome. He posed for the camera, let the photographer touch him to guide him and I have pictures with smiles galore. The difference is unbelievable. I say those pics are PANDAS in pictures. You can see what it was doing to him a year ago and how he is now...RECOVERED. They don't look like the same boy.

 

Just try to find the strength.I pray you will soon be writing your success story to someone.

[dcmom]

Hi Stephanie-

 

I am sorry you and your son are suffering now. Hopefully, you can begin on a journey of healing with Dr Latimer. She is really great!

 

Have you done the Cunningham test for anti neruonal antibodies? She likes to see that, so you may want to consider having it done before you see her, if you can.

 

I am sure you will be able to get the proper antibiotics, plus a steroid burst, which should help your son.

 

It is so hard to wait, I know. When my daughter was at her worst, I just tried to help her get as much joy from her day as possible. (she may not be able to get dressed, go to school, etc. but maybe we could bake together or paint...) Try to share as much joy in the little things, that you can, while you wait for your appt.

 

Eileen

[FallingApart]

Stephanie,

 

I just looked at your blog and see that you and I seem to be in the same situation. I have a 2 and a 3 year old. I have also just recently started a blog and am wondering if you might gain anything from reading it. Our family has done IVIG 2 times for my 3 year old and we have had good results. But I also feel the same excruciating fear and despair that you do. http://pandasmom.wordpress.com/

[amy s]

Hi, I wanted to respond regarding photographs. We felt the same way with my child. She was so ill looking in all her photos in 1st and 2nd grade. She really wasn't healthy appearing until several months post IVIg (probably 5-6 months or so).

 

Just last month we took her in and while getting family photos taken, we got her individual photo done as well and when I saw the photo I sobbed. It looked like my little girl with a genuine human being look on her face. Her eyes were CLEAR (pupils still a bit large, though!) and bright and she didn't look completely... well, ....sick.

 

THERE IS HOPE!!!

[peglem]

There was a three year period there where I still can't look at photos of my daughter without being very sad...how could I not see how sick she was, and remembering ABA during that time (it was a miserable failure- my child is a Lovas flunky)...well, she's not well yet, but never, never want to go back to that time of quiet desperation that not only destroyed my hope, but made me afraid to hope.

 

Thanks to all of you here...I've got some hope again, well...guarded hope. You've helped me find out what to do when it seemed like nothing I did helped. Thank you for that truly amazing gift!

[bronxmom2]

I have to share my school picture story too... last year my son was in his first over-the-top PANDAS episode for his first grade picture. (We also did not know what was happening) He insisted on wearing a jacket and tie (I should have known something was up) because he'd decided to pretend that he was Doctor Jones, as in... Indiana Jones when he's a professor. To do this he made a maniacal face, tilted his head to the side, raised one eyebrow wildly, made a crooked grin... his eyes look all crazed, his tie's askew, his face is red, his hair's standing on end.... hands down the worst school picture ever taken.

 

But it did make me laugh in one of my darkest hours.

 

For the group picture, he appears to be pretending to run from a giant boulder.

 

The rest of the class is just standing there, smiling sweetly.

[L Haven]

Hi Stephanie-

 

I am sorry you and your son are suffering now. Hopefully, you can begin on a journey of healing with Dr Latimer. She is really great!

 

Have you done the Cunningham test for anti neruonal antibodies? She likes to see that, so you may want to consider having it done before you see her, if you can.

 

I am sure you will be able to get the proper antibiotics, plus a steroid burst, which should help your son.

 

It is so hard to wait, I know. When my daughter was at her worst, I just tried to help her get as much joy from her day as possible. (she may not be able to get dressed, go to school, etc. but maybe we could bake together or paint...) Try to share as much joy in the little things, that you can, while you wait for your appt.

 

Eileen