Feeling completely hopeless today

[L Haven]

<<When my daughter was at her worst, I just tried to help her get as much joy from her day as possible.>>

 

dcmom, this really, really helped me today as we spent another day out of school. Thanks :-)

 

Lena

[Stephanie2]

Michele,

I am sorry about the very long journey you have been on. My 3 years seems to pale in comparison...and 4 kids, wow! Anyway, when I read your story I couldn't help but think that maybe a DAN doctor would be of help to you. They explore SO MANY avenues, not just pandas; diet, nutritional deficiencies, food sensitivities, leaky gut, yeast, and many different underlying bacterial/viral problems (lyme, etc.). I mean for example, these antibiotics have been helping my child with his pandas but they are creating a real problem with yeast which is causing a whole new set of behavioral symptoms. My child was not placed on the spectrum, but he came close. Pandas is not our only problem, we also have gluten intolerance (possibly celiac), vit D, vit B12 and zinc deficiencies, yeast and clostridia. I have now cleared all of my son's problems except the strep and yeast (we had yeast under control until the darn antibiotics). The DAN doctor has done wonders for us, but you have to get a good one... Just something to think about. I can't even imagine you adding one more appt to your schedule. I feel the same way, while my friends are hanging out at the playground, we are in waiting rooms...

 

Best of luck and I will be following your story!

Stephanie

 

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

[Stephanie2]

Bronxmom, I hope you don't take this the wrong way but boy did I get a good laugh out of your school picture description! The group picture...running from a giant boulder...priceless!! Wow, that will make for a good story one day! LOL! I am still laughing! I guess it's so funny b/c I really, really get it!!

 

Stephanie

 

 

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.

[Stephanie2]

I enjoyed reading your blog...I can so relate to how you feel about hanging out with "normal" families. As time goes on I get so envious of the ease at which other families move from school to the soccor field, to birthday parties, etc. No meltdowns, tantrums, no sensory overload, etc...I can not even relate to this as my child has been sick from the beginning (abrupt change at the age of 20 months with positive strep 4 months later...). Also, it is so embarrassing to never really have it all together (both of my kids have special needs so I haven't had it "all together" for a long time now)! Luckily, I have a dear friend who has a boy my son's age who is on the spectrum (well he was until he met his DAN doctor, now unbelievably he has passed my son right up at the moment). She is my only friend who I really feel comfortable hanging out with b/c I know whe doesn't judge me when my child is acting off or weird. She really gets it and I don't have to explain...

 

Stephanie

 

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/

[Iowamom]

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.

Michele-

 

Your story sounds so much like ours. Our 10 yo son just had IVIG with Dr. K on F/S. We & Dr. K believe he is an early onset PANDAS that has been mis-dx'd for years. He's an Alphabet kid. If you are seeing a new Psychiatrist you might inquire about the use of Namenda. They are using it for PDD traits, and are having very encouraging results. We just added it to the Risperdal 3 weeks ago. We were seeing good results--finally a drug combo that has worked a bit. Dr. K is inclined to think that is less about the medicine and more about a waning period. There are psychs here in the central IA area having very good results. Yes, it is an Alzheimers drug. It happens to be an antagonist to glutamate receptors. Glutamate is an abundant neurotransmitter in the brain. No, I don't want my boy on these drugs any longer than necessary--the alternative we were getting to is him not being able to live here. That bad. He is such a sweet, considerate, fun creative kid--when he is operating on all cylinders. Just wanted to pass this med info along, since these two drugs have helped all 5 of us live under the same roof, in relative harmony. These docs here have been using it for about 5 years. Any good psych should be aware of it. SSRI's bombed. Abilify & Seroquel were worthless.

 

Praying you and others get relief. We are very bumpy post IVIG right now.

 

Dawn

[michele]

Dawn

Thanks for your thoughtful post. Yes you are right they are alphabet kids with a bit of everything. Did they ever try to tell you he was schiz or bipolar? Just wondering since meds have not worked for us either if that possibility may be upcoming? I know what you mean about operating on full cylinders. He just can't stay calm and his thoughts are erratic. here are times when he is calm and loving and he relaxes and it is right after he gets the clonidine at night! We have tried Abilify, Celexa, Adderall, Strattera, and Zoloft, and Concerta. He just doesn't do well on these SSRI meds or stimulants. I am glad we are changing from the CNS psych to the actual psych this week. I will mention your med Namenda.

 

I know Dr. K was not for these meds and tries to wean them before or after IVIG but I just think our kids can't function without them because of the chemical inbalance. Did he try to talk you off them? There is a another mom here whose child is not doing well after he took her off meds. I just don't think it is realistic that they will just recover that fast to pull them off on anti psychs. I have done a phone consult qith Dr. K but haven't gone in person yet. Do you think he IVIG will cure your son from needing meds altogether? How was your experience with IVIG and how is it going now?

 

Dr. Latimer wanted us to do the study at NIMH for Rizuole and anxiety disorders. It is a real distance for us and I didn't know about the uncertainty of the placebo and effects. Plus you can't change any meds during the sudy and we have been having alot of med issues. It may be an Alzheimer med also. Does your son need any med for focus or impulse control?

 

I am glad to see you here and I will follow your story!

Stephanie,

We did go the DAN! route and tried the diet and supplements for awhile. I just was torn with the medical Dr's telling me one thing and questioning my motives. I just gave up on it probably too soon.

 

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.

Michele-

 

Your story sounds so much like ours. Our 10 yo son just had IVIG with Dr. K on F/S. We & Dr. K believe he is an early onset PANDAS that has been mis-dx'd for years. He's an Alphabet kid. If you are seeing a new Psychiatrist you might inquire about the use of Namenda. They are using it for PDD traits, and are having very encouraging results. We just added it to the Risperdal 3 weeks ago. We were seeing good results--finally a drug combo that has worked a bit. Dr. K is inclined to think that is less about the medicine and more about a waning period. There are psychs here in the central IA area having very good results. Yes, it is an Alzheimers drug. It happens to be an antagonist to glutamate receptors. Glutamate is an abundant neurotransmitter in the brain. No, I don't want my boy on these drugs any longer than necessary--the alternative we were getting to is him not being able to live here. That bad. He is such a sweet, considerate, fun creative kid--when he is operating on all cylinders. Just wanted to pass this med info along, since these two drugs have helped all 5 of us live under the same roof, in relative harmony. These docs here have been using it for about 5 years. Any good psych should be aware of it. SSRI's bombed. Abilify & Seroquel were worthless.

 

Praying you and others get relief. We are very bumpy post IVIG right now.

 

Dawn

[Debbie1]

Stephanie,

 

I am so sorry you are going through such a hard time right now. I think we all know how you are feeling.

 

I have two children with PANDAS that went misdiagnosed for a few years. One year ago, solely do to the wonderful people on this forum, we went for throat cultures and bloodwork and found out that they really have PANDAS. In the past year they have had an unbelievable transformation. We had six symptom free months with one child, close to eight with the other. We recently had a relapse after known exposure to strep, but it is no where near as bad as it was and we will never let it get that bad again.

 

Rest assured, you are in the right place. You have the best support group you could have right here. You know what is wrong with your child, and now that you know, you can begin the road to recovery.

 

This illness can be draining. I have been told many times to make sure to take care of myself as I care for my sick children. It is hard to find time for yourself when caring for an ill child, but it is so important. If another family member can help and give you a break for a little while, take advantage of it. Listen to some inspirational music (I am partial to the music from Les Miserables - I always loved that show!), find inspirational books. They will give you the strength to keep fighting for your child.

 

Debbie

[mom md]

I am so glad you are seeing Dr. Latimer. We saw her in May and did PEX July 6th. My son had rapid improvement and I barely, if any, see any signs of PANDAS now. He is not only "normal" now but really doing wonderful. I too had some very dark days but hang in there. I truly believe relief will be there soon. Dr.Latimer really understands the disease and is wonderful. Good luck!!!!....by the way, your boys are beautiful.

[bronxmom2]

Bronxmom, I hope you don't take this the wrong way but boy did I get a good laugh out of your school picture description! The group picture...running from a giant boulder...priceless!! Wow, that will make for a good story one day! LOL! I am still laughing! I guess it's so funny b/c I really, really get it!!

 

Stephanie

 

No, that's why I posted it... I wanted to make you laugh!