regression in age appropriate behavior/ Lyme Disease

[harpazo_hope]

I'm just going to copy and paste my post in the Tourette's forum.

 

I have taken my son to his doctor, and will be making an appointment with another. My son has been acting very strange. At first I thought it was a tic, but it's taking over him. He talks like a toddler, and he's almost 14. He'll repeat things like an excited three year old... "I'm happy! I got a new game! I'm very happy, it's new! It's not broken!" And he'll tell me the same things over and over. It's similar to a tic in that way, but it's affecting the way he communicates with me more and more each day. If he wants to know what is for dinner, he'll talk to me in this way. My younger son says he sounds so innocent like a little kid and it makes him feel sorry for his brother.

 

Has anyone seen anything like this? Maybe it's his Lyme disease. It's scaring me.

 

I was kindly directed here. I am wondering if anyone else could give me advice. My son has been on antibiotics and herbal supplements for Lyme disease for almost a year now. When I took him into be tested he was also tested for strep which came back negative.

 

Right before this all began, we were all having horrible seasonal allergies.

 

Anyway, I don't know exactly what I'm asking you all now... I guess I'd just like to know that everything is OK and someone knows what's probably going on.

Edited April 28, 2010 by Chemar

[harpazo_hope]

Could a mod change the subject of this thread for me to something that reflects my sons symptoms?

[Chemar]

Hi

glad you have posted here as there really is a possibility you are seeing symptoms of either a co-infection or maybe related directly to what the Lyme infection has already done.

 

I am hoping lyme mom will see your post as well as the other parents here who deal with Lyme

 

what would you like changed in the title of your thread? I can do that for you

[harpazo_hope]

Hi

glad you have posted here as there really is a possibility you are seeing symptoms of either a co-infection or maybe related directly to what the Lyme infection has already done.

 

I am hoping lyme mom will see your post as well as the other parents here who deal with Lyme

 

what would you like changed in the title of your thread? I can do that for you

 

 

Thanks, how about what you called it - regression in age appropriate behavior/ Lyme.

[Chemar]

all done

 

I know I have read other accounts here by PANDAS parents of this regression in behavior during exacerbations,to that of a more "baby" phase, along with the continuous "reporting" of all they are doing(I touched my nose with my finger, I touched the carpet with my toe, etc) and repeating things over and over...... and saw it in my son as well during one of his worst tourettic OCD flares

[lyme_mom]

Hi

glad you have posted here as there really is a possibility you are seeing symptoms of either a co-infection or maybe related directly to what the Lyme infection has already done.

 

I am hoping lyme mom will see your post as well as the other parents here who deal with Lyme

 

what would you like changed in the title of your thread? I can do that for you

 

Does your son have Lyme Disease? If so it can cause any kind of change in the body. Bartonella and Babesia, common co-infections, also can cause psychiatric symptoms/changes in a person. Feel free to pm me with any questions you have b/c I do not really understand the background to your question.

 

Lyme Mom

[Suzan]

I don't know if this will be of help since my daughter is only 7 and she regresses pretty far.... but she has PANDAS and in her episodes, she will regress to a thumb sucker, baby talker or non-verbal kid. She will refuse to walk, want to be held all the time and cry for her bottle. So far, it always turns out she has strep, BUT, she does not get strep in her throat. Luckily we had a doc who knew that girls could get strep in the vagina and this is how we found out about PANDAS. So for your son, maybe he has strep lurking elsewhere in his body?

 

Have you had his ASO and AntiDNASE titers tested? I hardly know why I ask since my dd's titers are always normal even after documented strep.

 

I know how scary it can be. My heart goes out to your family!

 

Susan

[harpazo_hope]

I don't know if this will be of help since my daughter is only 7 and she regresses pretty far.... but she has PANDAS and in her episodes, she will regress to a thumb sucker, baby talker or non-verbal kid. She will refuse to walk, want to be held all the time and cry for her bottle. So far, it always turns out she has strep, BUT, she does not get strep in her throat. Luckily we had a doc who knew that girls could get strep in the vagina and this is how we found out about PANDAS. So for your son, maybe he has strep lurking elsewhere in his body?

 

Have you had his ASO and AntiDNASE titers tested? I hardly know why I ask since my dd's titers are always normal even after documented strep.

 

I know how scary it can be. My heart goes out to your family!

 

Susan

 

 

Thanks... this does help. I'm sorry your daughter is ill. I guess I just wanted to know others' experiences, and whatever advice that might come with it. I don't know what I need really... I just feel desperate. I have never heard of anything like this before. He had been tested for strep titers (or whatever they test when PANDAS is suspected.) Nothing was abnormal. He has been on antibiotics for nearly a year though, and many months of diflucan for yeast/fungus.

 

Is it possible a child could regress and never come back?

[Suzan]

Thanks... this does help. I'm sorry your daughter is ill. I guess I just wanted to know others' experiences, and whatever advice that might come with it. I don't know what I need really... I just feel desperate. I have never heard of anything like this before. He had been tested for strep titers (or whatever they test when PANDAS is suspected.) Nothing was abnormal. He has been on antibiotics for nearly a year though, and many months of diflucan for yeast/fungus.

 

Is it possible a child could regress and never come back?

 

I think he will come back! Don't give up hope! What antibiotics and what dose is he on? Also, where do you live? Can you (if you have not already) seen one the big PANDAS docs?

 

I just started my daughters on this probiotic for yeast and I think it is really great. http://www.symbionforlife.com/index.html

 

Susan

[harpazo_hope]

Thanks... this does help. I'm sorry your daughter is ill. I guess I just wanted to know others' experiences, and whatever advice that might come with it. I don't know what I need really... I just feel desperate. I have never heard of anything like this before. He had been tested for strep titers (or whatever they test when PANDAS is suspected.) Nothing was abnormal. He has been on antibiotics for nearly a year though, and many months of diflucan for yeast/fungus.

 

Is it possible a child could regress and never come back?

 

I think he will come back! Don't give up hope! What antibiotics and what dose is he on? Also, where do you live? Can you (if you have not already) seen one the big PANDAS docs?

 

I just started my daughters on this probiotic for yeast and I think it is really great. http://www.symbionforlife.com/index.html

 

Susan

 

 

He's on 500mg of amoxy three times a day, and just started bactrim twice a day but I can't see what mg. the HUGE horse pills are.

 

I'm in Utah, and don't know about any of the PANDAS doctors. My doctor is willing to look into different protocols though. He has treated other children with PANDAS, and does vitamin IVs in his office. He's a little new to Lyme, but like I said... open to new ideas as long as he doesn't find them dangerous. He didn't think co-infections were a problem in the west, but I asked for an antibiotic that works on bartonella and he gave us bactrim. He is also very big on yeast treatment. He believes that yeast plays a large role in Lyme.

[lyme_mom]

Thanks... this does help. I'm sorry your daughter is ill. I guess I just wanted to know others' experiences, and whatever advice that might come with it. I don't know what I need really... I just feel desperate. I have never heard of anything like this before. He had been tested for strep titers (or whatever they test when PANDAS is suspected.) Nothing was abnormal. He has been on antibiotics for nearly a year though, and many months of diflucan for yeast/fungus.

 

Is it possible a child could regress and never come back?

 

I think he will come back! Don't give up hope! What antibiotics and what dose is he on? Also, where do you live? Can you (if you have not already) seen one the big PANDAS docs?

 

I just started my daughters on this probiotic for yeast and I think it is really great. http://www.symbionforlife.com/index.html

 

Susan

 

 

He's on 500mg of amoxy three times a day, and just started bactrim twice a day but I can't see what mg. the HUGE horse pills are.

 

I'm in Utah, and don't know about any of the PANDAS doctors. My doctor is willing to look into different protocols though. He has treated other children with PANDAS, and does vitamin IVs in his office. He's a little new to Lyme, but like I said... open to new ideas as long as he doesn't find them dangerous. He didn't think co-infections were a problem in the west, but I asked for an antibiotic that works on bartonella and he gave us bactrim. He is also very big on yeast treatment. He believes that yeast plays a large role in Lyme.

 

Hi. Thats great that he is open-minded and offers vitamin ivs because they are very helpful for lyme disease treatment. However, if your doctor does not think that there is a problem with co-infections in the West I would think that he is not up on the latest lyme information and you should get a second opinion from an ilads-trained lyme specialist. Just go to ilads.org and email the contact person, Barbara Buchman, and ask her for a doctor near you. That way you can be sure you are treating the right infections (or as sure as one can be). Did his symptoms begin before the Bactrim started? I assume so. There are some specific symptoms that can be red flags for bartonella such as sore soles of the feet and calf pain. Babesia symptoms are thigh cramps, nightsweats, fatigue, etc. Also be on the lookout for any rashes b/c bartonella causes stretchmark rashes sometimes. The tests are not reliable for these infections (just like lyme). They miss more than they find. There is considerable overlap between these infections but they are diagnosed based on symptoms. I think Bactrim kills Babesia too. It sounds like you have a holistically oriented doctor who would be willing to work with a lyme expert. Good luck!

[harpazo_hope]

Hi. Thats great that he is open-minded and offers vitamin ivs because they are very helpful for lyme disease treatment. However, if your doctor does not think that there is a problem with co-infections in the West I would think that he is not up on the latest lyme information and you should get a second opinion from an ilads-trained lyme specialist. Just go to ilads.org and email the contact person, Barbara Buchman, and ask her for a doctor near you. That way you can be sure you are treating the right infections (or as sure as one can be). Did his symptoms begin before the Bactrim started? I assume so. There are some specific symptoms that can be red flags for bartonella such as sore soles of the feet and calf pain. Babesia symptoms are thigh cramps, nightsweats, fatigue, etc. Also be on the lookout for any rashes b/c bartonella causes stretchmark rashes sometimes. The tests are not reliable for these infections (just like lyme). They miss more than they find. There is considerable overlap between these infections but they are diagnosed based on symptoms. I think Bactrim kills Babesia too. It sounds like you have a holistically oriented doctor who would be willing to work with a lyme expert. Good luck!

 

 

Thanks... I know he needs more training, but there's not a lot in Utah. A couple naturopaths and my doctor. One of the naturopaths is in a neurologists office and uses antibiotics but it's getting pretty close to code words and secret handshakes to book an appointment with this person from what I've heard. And I have the only almost lyme literate MD in the state, and yes...he is holistically oriented. I guess people come from all over the country to see him. He is very humble about his knowledge of Lyme, and says he's continuing to learn more.

 

I was thinking about seeing Dr.K in Washington but this would be way over our budget. I am interested in his KPU protocol. Before these latest symptoms hit, I was planning on trying and getting my son on disability compensation. There are several neighborhood kids on disability for ADD. Maybe when things calm down a bit around here I will look into it. It would sure help get my son the help he needs.

 

Several posts on lyme boards pointed to bartonella for motor tics, and my symptom of myoclonic muscle jerking. When I look at symptoms though, babesia fits my son and I better. My husband is the only one in the family with the telltale symptoms of bartonella. My instincts keep having me look at mycoplasma, herpes, chlamydia pneumonia, bartonella, and babesia. I was hospitalized with pneumonia after being bit by a tic so anything related to pneumonia raises my eyebrow. I think it will be wise to try one at a time so we know which one helps. I will be rifing for bartonella every day. I am getting discouraged with antibiotics. They have helped me quite a bit, but they don't seem to be doing anything for my son.

 

One last question. Is it normal for this behavior to come and go throughout the day? That is what has been happening. He'll be mostly himself much of the day, with maybe a small hint of some personality change, but then for a few hours in the late morning and early evening he will talk like a baby and behave very strangely. It started with just a few small episodes every day, but these episodes lasted longer and longer, and now there are 2 or 3 episodes a day.

[lyme_mom]

Hi. Thats great that he is open-minded and offers vitamin ivs because they are very helpful for lyme disease treatment. However, if your doctor does not think that there is a problem with co-infections in the West I would think that he is not up on the latest lyme information and you should get a second opinion from an ilads-trained lyme specialist. Just go to ilads.org and email the contact person, Barbara Buchman, and ask her for a doctor near you. That way you can be sure you are treating the right infections (or as sure as one can be). Did his symptoms begin before the Bactrim started? I assume so. There are some specific symptoms that can be red flags for bartonella such as sore soles of the feet and calf pain. Babesia symptoms are thigh cramps, nightsweats, fatigue, etc. Also be on the lookout for any rashes b/c bartonella causes stretchmark rashes sometimes. The tests are not reliable for these infections (just like lyme). They miss more than they find. There is considerable overlap between these infections but they are diagnosed based on symptoms. I think Bactrim kills Babesia too. It sounds like you have a holistically oriented doctor who would be willing to work with a lyme expert. Good luck!

 

 

Thanks... I know he needs more training, but there's not a lot in Utah. A couple naturopaths and my doctor. One of the naturopaths is in a neurologists office and uses antibiotics but it's getting pretty close to code words and secret handshakes to book an appointment with this person from what I've heard. And I have the only almost lyme literate MD in the state, and yes...he is holistically oriented. I guess people come from all over the country to see him. He is very humble about his knowledge of Lyme, and says he's continuing to learn more.

 

I was thinking about seeing Dr.K in Washington but this would be way over our budget. I am interested in his KPU protocol. Before these latest symptoms hit, I was planning on trying and getting my son on disability compensation. There are several neighborhood kids on disability for ADD. Maybe when things calm down a bit around here I will look into it. It would sure help get my son the help he needs.

 

Several posts on lyme boards pointed to bartonella for motor tics, and my symptom of myoclonic muscle jerking. When I look at symptoms though, babesia fits my son and I better. My husband is the only one in the family with the telltale symptoms of bartonella. My instincts keep having me look at mycoplasma, herpes, chlamydia pneumonia, bartonella, and babesia. I was hospitalized with pneumonia after being bit by a tic so anything related to pneumonia raises my eyebrow. I think it will be wise to try one at a time so we know which one helps. I will be rifing for bartonella every day. I am getting discouraged with antibiotics. They have helped me quite a bit, but they don't seem to be doing anything for my son.

 

One last question. Is it normal for this behavior to come and go throughout the day? That is what has been happening. He'll be mostly himself much of the day, with maybe a small hint of some personality change, but then for a few hours in the late morning and early evening he will talk like a baby and behave very strangely. It started with just a few small episodes every day, but these episodes lasted longer and longer, and now there are 2 or 3 episodes a day.

 

Wow-sounds like you have your hands full. This is very common with lyme-to have the whole family infected in one form or another. There are so many things that affect someone's treatment-toxicities like heavy metal, ability to detox the dead lyme, etc. I also tried energetic testing to see if the antibiotics are working or are stressing the body. It seems to work and certainly doesn't hurt.

I think these things affect each person differently. Joint pain comes and goes so there is no reason why other symptoms cannot come and go throughout the day. Why don't you ask your doctor to call Dr. Charles Ray Jones and see what he thinks? He cannot talk to you but he freely offers his advice to other doctors who are trying to figure out how to treat lyme disease. He is a saint and he advised our llmd when my son was first diagnosed with Lyme Disease. If you need the number pm me.

[thereishope]

Welcome to the PANDAS/PITAND forum. On Dr K's website he states...

 

http://www.webpediatrics.com/pandas.html

 

“Certain cases of Anorexia nervosa…, psychotic symptoms following the Lyme disease and at least some cases of Autistic Spectrum Disorders have all been linked to an infectious agent and their pathophysiology appears compatible with PANDAS and PITAND syndromes.”

 

Allergies can affect PANDAS and cause symptoms to worsen. So, I would think that may be the case with Lyme too? When my PANDAS son's allergies hit last year, they really casued his PANDAS to worsen. Once I started him on allergy meds, it took a few days for the allergies to calm then I saw his PANDAS calming too. But one has to be cautious with allergy meds. Every child reacts diffrently. Some do well on Claritin, some on Benadryl, some on Zyrtec. Just be watchful. The only one I've seen red flagged not take on here is Singulair.

Edited April 29, 2010 by Vickie

[Stephanie2]

I haven't read all the responses but have a few things to add...

 

You asked if a child could regress and not come back. I believe there is a condition along the autistic spectrum called Childhood Disintegrative Disorder where they completely regress back to babyhood, lose speech, etc. never to obtain it again. However, I believe that starts in the younger years and is extremely uncommon. I seriously doubt you have anything like that going on.

 

As far as PANDAS, my 5 yo regresses and does babytalk during exacerbations and it drives me nuts!!!!! He will speak in one or two word sentences and then get mad if I don't know what he wants, etc...

 

Remember that many do not get a rise on the strep titers. One of my boys does get a rise and the other does not, even right after positive throat culture. One of my boys had strep show up in his stool culture the same week of his first ever pandas exacerbation. So if you really want to find strep, you have to investigate! but then again there is always the Cunningham Test (which I am sure has been mentioned above) and there is also just clinical history (waxing and waning, abrupt onset, etc.). Also, something to know is that the first "pandas exacerbation" is always brought on by strep, but after that anything that activates the immune system can cause pandas symptoms. I used to go around town chasing down a positive strep culture in my boys when they went downhill, now I just have the doc call in a prescription for an increased dose in antibiotics when things really flare.

 

Stephanie