For those who were seen by Dr. Latimer....

[fiveam]

and were found to be unlikely candidates for PANDAS, what did Dr. Latimer offer you in terms of dx and/or treatment?

 

Hello.

 

I am new here. I have a 6 yo son w/some behavioral markers for PANDAS. He is in pretty bad health right now and I am desperately trying to figure out why. His biggest health issue is weight loss due to a heightened sense of smell. He has other issues but this one is the scariest. He will literally stop eating if he smells food other than what's on his plate (competing smells) and he will gag if he smells food other than what he would eat (his diet is EXTREMELY limited). A couple of days ago he stopped eating because he said he smelled dog poop outside. We don't have any pets and we have a fenced-in yard. He has also had diarrhea on an almost daily basis for a yr. He has tics, separation anxiety and at least O (OCD). I'm not so sure about "sudden onset".

 

My question is: I have an appt w/Dr. Latimer in April. How many people here have been seen by her and deemed unlikely to have PANDAS and if you were told that your child DIDN'T have PANDAS what help/advice/treatment was recommended by Dr. Latimer? I would like to find a CBT/ERP therapist for my son...will she recommend one or should I be looking for one in the meantime? I have been searching but have come up w/a bunch of dead ends. I live in the NOVA area if anyone has any suggestions.

 

Thank-you for any help!

[LNN]

I mean this in the most positive of ways, not as a criticism. But instead of spending energy on worrying about what the negatives prior to the appointment, I'd put energy into organizing your information so that you can paint a clear, concise picture (this goes for any doctor). Put together a table or list of illnesses and the corresponding symptoms, or lay things out on a calendar, or a chart. List healthy times too (if there've been any). Make note of any significant illnesses in the family or in school during the same time period. Then make copies of any blood work, copies of doctors' records. Make a checklist of the symptoms or behaviors that make you suspect PANDAS. Then organize it in a way that a doctor can glance thru it and get the picture. Show it to someone and ask them if it makes sense. The more prepared you are, the better any evaluation will go.

 

Dr L has a checklist of things she'll ask you about OCD behaviors, tics, severity, etc. She'll also do a neurological exam to look for chorea and other signs of issues. She is very thorough and IMO is interested not necessarily in diagnosing PANDAS but looking uniquely at your child and diagnosing what is going on with each child, PANDAS or otherwise. I know at least one parent felt she made an incorrect diagnosis and got a PANDAS dx from a second opinion. But that doesn't mean she's going to look for reasons to discount PANDAS. Each case is different.

 

Aside from Dr K, she has probably seen more PANDAS patients - and confirmed that diagnosis - than anyone. So I would encourage you to focus on what you can do to help her understand what you feel are the main issues in a short period of time. Try not to tie yourself up in knots over worst case worries and just be as prepared as you can.

 

As for therapists, I would absolutely pursue interviewing therapists now and not waiting. We have had tremendous success with both CBT and ERP. It helps immensely during PANDAS episodes but it also helps in every day life, because it gives the whole family a vocabulary and coping skills for managing worries and feeling empowered. It may not "cure" the OCD, but like antibiotics, it helps make things manageable, and the more you do it, the easier it gets.

 

I would start by going to www.ocfoundation.org and going to the tab to find therapists in your area. Look for a therapist who's a BTI graduate - this means they've completed training from the OCF specifically for ERP. Many doctors tell you they do ERP but the BTI certificate means they've had specific training. You also want to call ahead of time and make sure the therapist has experience with young children and that they're willing to include you in a part of each therapy session - you will need to be trained in how to do ERP at home and participate in whatever plan you come up with for your child. ERP isn't something you do for one hour a week. You have to do it constantly. So the therapist needs to teach you how to be a coach and teach your child how to be the boss of OCD.

 

It sounds like you are doing the right things and planning ahead - both of which help you get a handle on things. Keep going!

[tpotter]

I completely agree with everything you have said. Dr. Latimer spends a lot of time with you, and is very thorough. I know it's very scary about all the symptoms, and I'm sure we have all been there...just trying to find out WHY our kids are so sick (took us 4 years for a dx, and finally started get the RIGHT tx when it was confirmed by Dr. Latimer. But, all that interim time was spent worrying about the symptoms, and what to do.

 

Right now...just take a deep breath, have a glass of wine (if you can and like it :-), and make up the list like LLM suggested. That written list will keep you focused, and better able to answer the questions that Dr. Latimer asks. Also, if there are any behaviors that sometimes happen, but other times don't, consider taking a video. I did, and pictures speak a 1000 words!

 

Good luck.

 

 

 

 

 

I mean this in the most positive of ways, not as a criticism. But instead of spending energy on worrying about what the negatives prior to the appointment, I'd put energy into organizing your information so that you can paint a clear, concise picture (this goes for any doctor). Put together a table or list of illnesses and the corresponding symptoms, or lay things out on a calendar, or a chart. List healthy times too (if there've been any). Make note of any significant illnesses in the family or in school during the same time period. Then make copies of any blood work, copies of doctors' records. Make a checklist of the symptoms or behaviors that make you suspect PANDAS. Then organize it in a way that a doctor can glance thru it and get the picture. Show it to someone and ask them if it makes sense. The more prepared you are, the better any evaluation will go.

 

Dr L has a checklist of things she'll ask you about OCD behaviors, tics, severity, etc. She'll also do a neurological exam to look for chorea and other signs of issues. She is very thorough and IMO is interested not necessarily in diagnosing PANDAS but looking uniquely at your child and diagnosing what is going on with each child, PANDAS or otherwise. I know at least one parent felt she made an incorrect diagnosis and got a PANDAS dx from a second opinion. But that doesn't mean she's going to look for reasons to discount PANDAS. Each case is different.

 

Aside from Dr K, she has probably seen more PANDAS patients - and confirmed that diagnosis - than anyone. So I would encourage you to focus on what you can do to help her understand what you feel are the main issues in a short period of time. Try not to tie yourself up in knots over worst case worries and just be as prepared as you can.

 

As for therapists, I would absolutely pursue interviewing therapists now and not waiting. We have had tremendous success with both CBT and ERP. It helps immensely during PANDAS episodes but it also helps in every day life, because it gives the whole family a vocabulary and coping skills for managing worries and feeling empowered. It may not "cure" the OCD, but like antibiotics, it helps make things manageable, and the more you do it, the easier it gets.

 

I would start by going to www.ocfoundation.org and going to the tab to find therapists in your area. Look for a therapist who's a BTI graduate - this means they've completed training from the OCF specifically for ERP. Many doctors tell you they do ERP but the BTI certificate means they've had specific training. You also want to call ahead of time and make sure the therapist has experience with young children and that they're willing to include you in a part of each therapy session - you will need to be trained in how to do ERP at home and participate in whatever plan you come up with for your child. ERP isn't something you do for one hour a week. You have to do it constantly. So the therapist needs to teach you how to be a coach and teach your child how to be the boss of OCD.

 

It sounds like you are doing the right things and planning ahead - both of which help you get a handle on things. Keep going!

[thereishope]

I have not seen Dr Latimer so I can't give an opinion on that. But what I can say is if you think you'd eventually go down the therapy path, research that now. Some therapists (not all) will have a long waiting list. Originally, we went with one therapist that got us in fast, and I soon realized why she was able to get us in fast. She was horrible. Then I went to another one. I was first put on a waiting list then I eventually got an appointment. From the first call for an appt to the first actual appt, I waited maybe 4 or 5 months! And that was with us being considered an "emergency". Psychologists and therapist often have a limit on how many patients they have or how many new patients they can take. So, I would say call around now and find out ow it is around you.

 

Also, speak to the thearpist, if you can, prior to appt to make sure they know what PANDAS is. I called around and found over numerous therapists that didn't know what PANDAS was. One even admitted to googling it while I was on the phone with them.

Edited April 10, 2010 by Vickie

[mom md]

Your case is very interesting and am am so glad you are seeing Dr. Latimer. She has been a neurologist for over 25 years and has seen it all, One of our biggest reasons for seeing her was to answer the question, what else could this be? You will be in good hands.

[Suzan]

While making your list of medical and symptom history, since you are unsure of sudden onset, be sure to look back into infancy to see if there may be a strep connection very young. This can muddy the sudden onset picture if your child had this from a very early age.

 

HUGS! I am sorry your son is so sick. My dd had intense smell sensitivity when she was younger and it was difficult although hers did not affect her eating so it was not as dangerous for her.

 

Susan

[Phasmid]

prolonged diarrhea... get a stool test for Clostridium difficile; my son recovered nearly overnight after being treated for C. diff.

my story is on here somewhere

 

 

Hello.

 

I am new here. I have a 6 yo son w/some behavioral markers for PANDAS. He is in pretty bad health right now and I am desperately trying to figure out why. His biggest health issue is weight loss due to a heightened sense of smell. He has other issues but this one is the scariest. He will literally stop eating if he smells food other than what's on his plate (competing smells) and he will gag if he smells food other than what he would eat (his diet is EXTREMELY limited). A couple of days ago he stopped eating because he said he smelled dog poop outside. We don't have any pets and we have a fenced-in yard. He has also had diarrhea on an almost daily basis for a yr. He has tics, separation anxiety and at least O (OCD). I'm not so sure about "sudden onset".

 

My question is: I have an appt w/Dr. Latimer in April. How many people here have been seen by her and deemed unlikely to have PANDAS and if you were told that your child DIDN'T have PANDAS what help/advice/treatment was recommended by Dr. Latimer? I would like to find a CBT/ERP therapist for my son...will she recommend one or should I be looking for one in the meantime? I have been searching but have come up w/a bunch of dead ends. I live in the NOVA area if anyone has any suggestions.

 

Thank-you for any help!

[matis_mom]

prolonged diarrhea... get a stool test for Clostridium difficile; my son recovered nearly overnight after being treated for C. diff.

Looking at your post I would say while you wait to see Dr. Latimer, do all you can to get to the reason for the diahrrea. My son had strep in his gut. If you could do a comprehensive stool analysis, plus the usual bloodwork, that would probably be a big part of the puzzle. You can see by reading this forum any day that our children have different issues, and have found them out in different ways.

Dr. Latimer is excellent, we see her too, but when we saw her for the first time, we already had a lot of labs we brought along, and I think that really helps.

One way or the other, I would strongly encourage you to get the to the bottom of the GI issue, and definitely start some probiotics if your child is not already on them.

 

All the best in your quest, and keep asking any questions you may have. There is always going to be someone in this forum whose been through it and can help you out!

Edited April 10, 2010 by mati's mom

[fiveam]

You know what?! I had the same exact thought last night. My 3rd child (my son was second) was born at 26 weeks...just 1.5lbs and after 3 mos in the NICU she was sent home. She had chronic diarrhea and lived w/it for 6 mos before it was dx'd as C. diff! BUT I think I hadn't really considered it before now for my son because the diarrhea was so....well, different. Both foul smelling but I *think* C. diff has a smell unique to it...and it's kind of greenish. My son has frequent bms that are very often just clear liquid (sorry if TMI) or really bad smelling, mucousy, poops. I'd be surprised if it were C. diff but I guess it's possible...we have a GI appt this coming thurs. I will search for your post and I thank-you so much for your input.

 

 

 

prolonged diarrhea... get a stool test for Clostridium difficile; my son recovered nearly overnight after being treated for C. diff.

my story is on here somewhere

 

 

Hello.

 

I am new here. I have a 6 yo son w/some behavioral markers for PANDAS. He is in pretty bad health right now and I am desperately trying to figure out why. His biggest health issue is weight loss due to a heightened sense of smell. He has other issues but this one is the scariest. He will literally stop eating if he smells food other than what's on his plate (competing smells) and he will gag if he smells food other than what he would eat (his diet is EXTREMELY limited). A couple of days ago he stopped eating because he said he smelled dog poop outside. We don't have any pets and we have a fenced-in yard. He has also had diarrhea on an almost daily basis for a yr. He has tics, separation anxiety and at least O (OCD). I'm not so sure about "sudden onset".

 

My question is: I have an appt w/Dr. Latimer in April. How many people here have been seen by her and deemed unlikely to have PANDAS and if you were told that your child DIDN'T have PANDAS what help/advice/treatment was recommended by Dr. Latimer? I would like to find a CBT/ERP therapist for my son...will she recommend one or should I be looking for one in the meantime? I have been searching but have come up w/a bunch of dead ends. I live in the NOVA area if anyone has any suggestions.

 

Thank-you for any help!

[fiveam]

Thank-you both for your input! I'm not really looking for the worst case it's just that my records and my mind are fuzzy. When my son started going downhill he was about 2.5. This was the same time my 3rd child was born at 26 weeks after I'd been on bedrest for months. My eldest was being evaluated for asperger's and going through a major violent period and we moved state. Just after we moved my son fell off a chair and was unable to walk the next day. I have some records but not much...I can do a rough timetable for certain events but I couldn't for the life of me say exactly when my kids caught colds or had fevers. My son did have RSV at 4 mos and the odd "cold" but I don't ever remember him having a sore throat. What started as an oral aversion due to sensory issues seems to have blossomed into the most incredible olfactory acuity over the past I'd say 6 mos. The thing is that I don't think my son has EVER been typical it just seems like certain things have been replaced by others. I never would have thought OCD until about 9 mos ago when he developed a fear of swallowing foreign objects. Anyway I'll have a couple of venti cappucinos w/whipped cream on top (works like wine for me:) and I will take your advice.

 

Thank-you both for your support and advice and LLM, not negative at all...just realistic and rational...thank-you!

 

 

I completely agree with everything you have said. Dr. Latimer spends a lot of time with you, and is very thorough. I know it's very scary about all the symptoms, and I'm sure we have all been there...just trying to find out WHY our kids are so sick (took us 4 years for a dx, and finally started get the RIGHT tx when it was confirmed by Dr. Latimer. But, all that interim time was spent worrying about the symptoms, and what to do.

 

Right now...just take a deep breath, have a glass of wine (if you can and like it :-), and make up the list like LLM suggested. That written list will keep you focused, and better able to answer the questions that Dr. Latimer asks. Also, if there are any behaviors that sometimes happen, but other times don't, consider taking a video. I did, and pictures speak a 1000 words!

 

Good luck.

 

 

 

 

 

I mean this in the most positive of ways, not as a criticism. But instead of spending energy on worrying about what the negatives prior to the appointment, I'd put energy into organizing your information so that you can paint a clear, concise picture (this goes for any doctor). Put together a table or list of illnesses and the corresponding symptoms, or lay things out on a calendar, or a chart. List healthy times too (if there've been any). Make note of any significant illnesses in the family or in school during the same time period. Then make copies of any blood work, copies of doctors' records. Make a checklist of the symptoms or behaviors that make you suspect PANDAS. Then organize it in a way that a doctor can glance thru it and get the picture. Show it to someone and ask them if it makes sense. The more prepared you are, the better any evaluation will go.

 

Dr L has a checklist of things she'll ask you about OCD behaviors, tics, severity, etc. She'll also do a neurological exam to look for chorea and other signs of issues. She is very thorough and IMO is interested not necessarily in diagnosing PANDAS but looking uniquely at your child and diagnosing what is going on with each child, PANDAS or otherwise. I know at least one parent felt she made an incorrect diagnosis and got a PANDAS dx from a second opinion. But that doesn't mean she's going to look for reasons to discount PANDAS. Each case is different.

 

Aside from Dr K, she has probably seen more PANDAS patients - and confirmed that diagnosis - than anyone. So I would encourage you to focus on what you can do to help her understand what you feel are the main issues in a short period of time. Try not to tie yourself up in knots over worst case worries and just be as prepared as you can.

 

As for therapists, I would absolutely pursue interviewing therapists now and not waiting. We have had tremendous success with both CBT and ERP. It helps immensely during PANDAS episodes but it also helps in every day life, because it gives the whole family a vocabulary and coping skills for managing worries and feeling empowered. It may not "cure" the OCD, but like antibiotics, it helps make things manageable, and the more you do it, the easier it gets.

 

I would start by going to www.ocfoundation.org and going to the tab to find therapists in your area. Look for a therapist who's a BTI graduate - this means they've completed training from the OCF specifically for ERP. Many doctors tell you they do ERP but the BTI certificate means they've had specific training. You also want to call ahead of time and make sure the therapist has experience with young children and that they're willing to include you in a part of each therapy session - you will need to be trained in how to do ERP at home and participate in whatever plan you come up with for your child. ERP isn't something you do for one hour a week. You have to do it constantly. So the therapist needs to teach you how to be a coach and teach your child how to be the boss of OCD.

 

It sounds like you are doing the right things and planning ahead - both of which help you get a handle on things. Keep going!