praying for a miracle

[dcmom]

mom2yo-

 

It does sound like you are seeing improvements.

 

I have 2 girls with pandas. We have found it important to look at behavior patterns weekly, not daily, to see changes. Sometimes when healing, we could see a positive SLOW weekly trend. But, adding those weeks up eventually made a BIG impact.

 

IMHO with pandas, what we see for our girls, is that we clear the infection well enough, but we NEED pretty quick or heavy-hitting immune modulation. I am worried that your pred burst was not high enough and not long enough. I would push Dr B. We have found docs reluctant to do the dosing of steroids needed- but when we do get a HIGH dose- it helps.

 

The other suggestion, and I only skimmed your the thread so forgive me if you are all over this- is therapy. My daughter was 5 when pandas hit, and hit hard with debilitating ocd. She got pex within about 6 mos- and after that ALL ocd just was gone. With my older one, and the younger one later on- we really needed to do some therapy for them to really let go of the ocd. It was like the ocd was gone, but they were still very afraid of feeling those intense fears, so they stuck with the behavior. ERP was MUCH easier after treatment- but it was still key in shedding all of the unwanted behavior quickly. It has taken us a while, but we finally found a therapist that works for us. I will tell you the key is that he is tough. Yes, he is extremely knowledgeable and experienced with ocd- it is a given you need someone like that- but what we had been missing before is someone that really lays it on the line for us, and doesn't give BS excuses any credit.

 

Good luck!

[mom2yo]

I completely understand the anxiety and worry that you will be told your child does not have PANDAS. My DS did not have positive throat cultures or titers. I was very worried, not certain he really had PANDAS. We'd seen so many doctors. Now, we are more than a yr down the road from his diagnosis and he's doing well. Have faith in your gut instinct. Things will get better, just not at a rate at which we'd all like, unfortunately.

Nicklemama,

 

How old is your ds? or how old was he when u started w/ all this? what is the road u've been on to get to this point of doing well?

 

U said u had seem many doctors? was it because ur ds had a geshtalt of issues like my ds over the years and not just the ocd?

 

When i first heard of pandas i got excited. Then with not much improvement with this already 3 month journey, i stared to get depressed but I am trying to crawl out of the rut i have been in, slowly but surely, right?!

 

thx,

mom2yo

[mom2yo]

mom2yo-

 

It does sound like you are seeing improvements.

 

I have 2 girls with pandas. We have found it important to look at behavior patterns weekly, not daily, to see changes. Sometimes when healing, we could see a positive SLOW weekly trend. But, adding those weeks up eventually made a BIG impact.

 

IMHO with pandas, what we see for our girls, is that we clear the infection well enough, but we NEED pretty quick or heavy-hitting immune modulation. I am worried that your pred burst was not high enough and not long enough. I would push Dr B. We have found docs reluctant to do the dosing of steroids needed- but when we do get a HIGH dose- it helps.

 

The other suggestion, and I only skimmed your the thread so forgive me if you are all over this- is therapy. My daughter was 5 when pandas hit, and hit hard with debilitating ocd. She got pex within about 6 mos- and after that ALL ocd just was gone. With my older one, and the younger one later on- we really needed to do some therapy for them to really let go of the ocd. It was like the ocd was gone, but they were still very afraid of feeling those intense fears, so they stuck with the behavior. ERP was MUCH easier after treatment- but it was still key in shedding all of the unwanted behavior quickly. It has taken us a while, but we finally found a therapist that works for us. I will tell you the key is that he is tough. Yes, he is extremely knowledgeable and experienced with ocd- it is a given you need someone like that- but what we had been missing before is someone that really lays it on the line for us, and doesn't give BS excuses any credit.

 

Good luck!

dcmom,

 

thx abt the info on the therapy. I recently was told abt that but while that is s/t i will probably have to do for my ds at some point, first we have a lot of the medical pandas route to take. someone, btw, also told me abt this intensive 3 week program in florida that works on these lingering behaviors in case u or s/o else needs s/t like that, it sounds quite interesting.

 

all the best,

mom2yo

[dcmom]

both of my kids did the intensive program in FL- It was amazing- REALLY helpful in demystifying ocd and erp, really great place!

[cobbiemommy]

My DS was deathly ill, literally and I have been where you are now. It has not been an easy road and there have been some major setbacks, especially financially after dealing with the insurance company who doesn't want to deal.

 

DS, showed improvement after five day steroid burst, and incredible improvement after HD IVIg. Then we lost the improvement and he got worse physically, but stayed better mentally. We found out son has borrelia (lyme), bartonella, and babesia. He is incredibly tired right now, for which we are exploring all treatments for fatigue and weight gain, but is not suicidal and his OCD has lessened tremendously.

 

Life will improve, it will take time, money, frustration, and sacrifice on your part and your son's. We think we are in a bad spot, but when we look back to a year or year and a half ago, we realize that we have come a long way!

 

This is a very supportive and incredibly knowledgable group. Let their combined wisdom help you navigate the year ahead.

 

Cobbie

[nicklemama]

My DS had just turned 5 when all this started. He was not diagnosed until he was 6y10m old. That seemed like a long time for a child to be sick but it seems like its a rather short time when you read about the years and years it takes for some kids to finally get the proper diagnosis. Lucky is the child and family who is diagnosed w/in a few months or even w/in a few days or weeks. That does not seem the norm around here.

 

We went dr to dr because we knew something had gone terribly wrong but we just couldn't figure it out and neither could any doctor. Oh, we got all kinds of answers. Poor parenting. Aspergers. Bipolar II. Gifted w/ anxiety. Intermiitent Explosive Disorder. Sensory Processing Disorder. No one EVER pointed out my DS's OCD, not the psychologist, not the psychiatrist, not the therapist nor any other. We were so focused on the explosions and raging that we didn't even realize he had OCD. If we had, we could have had different techniques for dealing w/ him and then avoided many explosions. He had so many different ocd's its a laundry list too long to name but lacking in the typicals like hand washing. He was very hyperactive. Developed sensory issues. Had terrible dreams. Couldn't fall asleep or stay asleep. Had severe separation anxiety. There's more but I think you get the idea.

 

Interestingly, he went to school and behaved himself quite well. His social skills were in the toilet but he's bright and it didn't call alarm until 1st grade. He was diagnosed w/ PANDAS not long after his first grade teacher talked to us about her concerns w/ his social skills.

 

Anyway, when he developed tics 1y and 10months into his illness, I was beside myself. I happened to be watching a rerun of the Mystery Diagnosis episode of Sammy Maloney who has/had PANDAS, not long afteward. That's when I knew. He was diagnosed a few weeks later after I had a consult w/ Dr T.

 

DS was given antibiotics and the blood testing started. He started doing better, slowly but surely. I was so nervous that abx wouldn't work and I'd be told he didn't have PANDAS. After 6 months, he was doing much better but still had many issues to be addressed. We went to Chicago for IVIG this past May. Today, DS is doing better than he has been since just before he turned 5 (knock on wood). He turnes 8 this month and he's a few months past the first anniversary of his PANDAS diagnosis.

 

I'll reiterate, your DS has been sick for a very long time and I do not think you can expect amazing changes in a short period. It may even be that you have to determine if he has other coinfections such as lyme. One step at a time.

[mom2yo]

My DS had just turned 5 when all this started. He was not diagnosed until he was 6y10m old. That seemed like a long time for a child to be sick but it seems like its a rather short time when you read about the years and years it takes for some kids to finally get the proper diagnosis. Lucky is the child and family who is diagnosed w/in a few months or even w/in a few days or weeks. That does not seem the norm around here.

 

We went dr to dr because we knew something had gone terribly wrong but we just couldn't figure it out and neither could any doctor. Oh, we got all kinds of answers. Poor parenting. Aspergers. Bipolar II. Gifted w/ anxiety. Intermiitent Explosive Disorder. Sensory Processing Disorder. No one EVER pointed out my DS's OCD, not the psychologist, not the psychiatrist, not the therapist nor any other. We were so focused on the explosions and raging that we didn't even realize he had OCD. If we had, we could have had different techniques for dealing w/ him and then avoided many explosions. He had so many different ocd's its a laundry list too long to name but lacking in the typicals like hand washing. He was very hyperactive. Developed sensory issues. Had terrible dreams. Couldn't fall asleep or stay asleep. Had severe separation anxiety. There's more but I think you get the idea.

 

Interestingly, he went to school and behaved himself quite well. His social skills were in the toilet but he's bright and it didn't call alarm until 1st grade. He was diagnosed w/ PANDAS not long after his first grade teacher talked to us about her concerns w/ his social skills.

 

Anyway, when he developed tics 1y and 10months into his illness, I was beside myself. I happened to be watching a rerun of the Mystery Diagnosis episode of Sammy Maloney who has/had PANDAS, not long afteward. That's when I knew. He was diagnosed a few weeks later after I had a consult w/ Dr T.

 

DS was given antibiotics and the blood testing started. He started doing better, slowly but surely. I was so nervous that abx wouldn't work and I'd be told he didn't have PANDAS. After 6 months, he was doing much better but still had many issues to be addressed. We went to Chicago for IVIG this past May. Today, DS is doing better than he has been since just before he turned 5 (knock on wood). He turnes 8 this month and he's a few months past the first anniversary of his PANDAS diagnosis.

 

I'll reiterate, your DS has been sick for a very long time and I do not think you can expect amazing changes in a short period. It may even be that you have to determine if he has other coinfections such as lyme. One step at a time.

All i have to say is WOW! I really have a lot more to say, but that is the first thing that comes to mind...WOW! It truly is unbelieveble that our kids can be walking around for so long with all their behaviors and "stuff", one can go from one specialist to another (us trying many, many things over the years!) and no doctor ever telling us that our kids have ocd. So, nicklemama, i totally hear u on that!

 

Our ds is also not the typical hand washer, has rages, explosions, seonsory issues, attentional issues,and learning issues. To name a few of the ocd behaviors, he goes around touching everything, keeps his things orderly in such a way, goes crazy when anyone goes in his room, yells at my dd's whenever any of them sing or even hum, repeats himself a lot asking the same thing over and over (which i always had thought was either processing issues or the attentional issue), and my laundry list can go on as well.

 

My ds has been like this for a long, long time. He's never quite fit the mold with anything, and nothing else has ever worked. So when i first heard about pandas a few months ago, i got hopeful and said oh, maybe that's why nothing's ever worked. I know that if this is it, that it will be a process, and will most likely take a while. I can handle that, although i know it won't be easy. I just still don't know for sure that this is it. i got into a bad rut this past week, and today i am slowly but surely climbing my way out of it....It's not easy especialy as i am also dealing with my youngest dd10 who sees s/o for her anxieties, and i really think she may have ocd too (also not in typical manner but she has obsessive thoughts and fears)...It's been crazy for us here lately, and so i let myself get down.

 

I truly thank you and every sinlge person who has taken the time to share with me. This forum has been so helpful and supportive these past few days, and it is has given me hope, strength, and i am going to get back to being the warrior mother that i need to be!

 

thank you to all of u,

mom2yo

[PowPow]

I am interested to hear sbout your son touching everything. The first OCD symptom that exploded for my child was that she had to rub everything anyone else touched. Clothing, skin, papers, door handles, hair, anything. She would do this for over 20 hours a day. She also would go nuts whenever anyone enters her room- screaming, even throwing things. It was like a wild animal protecting their cave. I was unable to empty the dryer; when she heard it buzz and I would go to it- she would scream and chase me because she knew I was touching the clothes. We could never put anything away- she would rage if we touched stuff. It was not contamination- just that whatever we touched something she had to rub. I get chills just hearing the word rub now. She used to yell and cry "I have to rub" over and over. Those were maddening days.

[Stephanie2]

I didn't read the replies, so maybe this has been mentioned. But my first thought regarding the steroids is that the initial improvement proves it is pandas (or some type of brain inflammation) and then the backslide might have to do with the side effects from the steroids. My sons usually end up in steroid-induced psychosis around day 4 or 5. Not pretty.

 

Also, steroids can decrease the function of the immune system, and we all know these boys need a properly funcitioning immune system to remain "sane".

 

FWIW, we have had tremendous success with classical homeopathy. My boys are not on antibiotics anymore and are much more stable than ever before.

[mom2yo]

I am interested to hear sbout your son touching everything. The first OCD symptom that exploded for my child was that she had to rub everything anyone else touched. Clothing, skin, papers, door handles, hair, anything. She would do this for over 20 hours a day. She also would go nuts whenever anyone enters her room- screaming, even throwing things. It was like a wild animal protecting their cave. I was unable to empty the dryer; when she heard it buzz and I would go to it- she would scream and chase me because she knew I was touching the clothes. We could never put anything away- she would rage if we touched stuff. It was not contamination- just that whatever we touched something she had to rub. I get chills just hearing the word rub now. She used to yell and cry "I have to rub" over and over. Those were maddening days.

My ds touches everything arbitrarily. He'll run his fingers over anything and everything and do it for a few seconds in oh such a way...can be s/t on the table, moldings, top of chairs, the bottom of a soda bottle or the salt and pepper shaker...you name it. Although it's bad and obvious, he controls himself more outside the house, but i'll notice him doing it. It's the screaming and rages that are beyond difficult.....

[hootie]

I have not read the full thread so I don't know if this has been said before...

 

steroids are a "test" to see if inflammation is present due to PANDAS/PITANS. It is not meant to "cure" the beast, although

sometimes the problem does go away from the steroids. Steroids can also cause the infection to flair more since it interferes

with the workings of the immune system.

 

The question I would ask the doc is...since this has occurred, what is the next step (different antibiotic, IVIG)?

 

I throw out a different idea (there are various threads on this already)...try homeopathy! My son got over PANDAS without

steroids or long term antibiotics (had zithromax but no improvement, has had reactions to amoxicillin and ceftin in the past)

and we have not used IVIG. Homeopathy took away his PANDAS 100% as far as I can tell (and what he tells me).

 

Good luck!!! It sounds like you have found the right place to hang out to find information to help your child (young adult).

[mom2yo]

I have not read the full thread so I don't know if this has been said before...

 

steroids are a "test" to see if inflammation is present due to PANDAS/PITANS. It is not meant to "cure" the beast, although

sometimes the problem does go away from the steroids. Steroids can also cause the infection to flair more since it interferes

with the workings of the immune system.

 

The question I would ask the doc is...since this has occurred, what is the next step (different antibiotic, IVIG)?

 

I throw out a different idea (there are various threads on this already)...try homeopathy! My son got over PANDAS without

steroids or long term antibiotics (had zithromax but no improvement, has had reactions to amoxicillin and ceftin in the past)

and we have not used IVIG. Homeopathy took away his PANDAS 100% as far as I can tell (and what he tells me).

 

Good luck!!! It sounds like you have found the right place to hang out to find information to help your child (young adult).

What excatly is homeopathy? (i know it means doing the non medical approaches, but in this case, what does it mean, what does it entail?)

[hootie]

Check out these...

 

Http://nccam.nih.gov/health/homeopathy

 

Http://homeopathic.org click on the blue and white box on the right side that says "what is homeopathy"

 

Let me know if you need more info.

[Stephanie2]

I used to think "homeopathy" referred to "all things alternative" but that is a misconception that most people have. Under the umbrella of "alternative medicine", homeopathy is one of many forms of medicine (there is also traditional chinese medicine, accupuncture, herbs/ayurvedic, integrative medicine, chiropractic, and the list goes on and on). I have done almost all of them at one time or another for my pandas/autism boys, including conventional medicine (antibitoics, IVIG, steroids, ibuprofen, tons of anti-inflammatory supplements, etc.) and NOTHING has even come CLOSE to what "classical homeopathy" has done, not only for my boys, but for my husband and I. I do not exaggerate when I say that between the 4 of us we had about 25 different health problems in this house. ALL of them have either gone away or are being managed very well. Life-changing! The goal of homeopathy (unlike some other forms of medicine, even other alternative medicines) is to cure the condition and prevent new ones. With that said, for some reason, homeopathy is usually the last resort for most (as it was for me) and I don't get it. For the record, we do classical homeopathy...there are other forms of homeopathy out there of which I have no experience.

 

Hope that helps!