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Really discouraged - bumped out of PreK


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So, after taking 3 month haitus from PreK to treat Lyme and Pandas, I tried sending DS4 back, only 2 - 1/2 days. Don't know if anyone can relate to this but he couldn't seem to focus, was very impulsive, wouldn't follow directions. He would run and hide under a table when asked to do something, would flop on the floor and lay there and according to his teachers was "out of control" during gym, climbing on bleechers and the stage. He actually bolted and ran out of the gym and into the cafeteria. It was too unsafe to keep him and he was too disruptive, so I had to take him out...until more treatment helps..... SOOOO tired of this! I thought maybe a few hours he could handle.

 

But, something isn't right because when he was home, he just wanted to watch TV. No play at all. Very unlike him. Then started complaining about his feet and knees hurting and headaches...But he's 4, so I'm not sure how much is real???

 

Sorry, had to vent. Not fun getting bumped from PreK!!!

 

darlene

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Darlene,

 

So sorry, huge hug. BUT when he is feeling better this stuff will all remit. My girlfriend had similar issue where her son ran off school grounds in a panic attack and had to be pinned down on the ground to calm him. He had to repeat Kindergarden. Then almost on the verge of being kicked out of kindergarden do to symptoms. I even went to the school to discuss his illness on behalf of my friends family.... we basically begged them to wait until he improved and pass him into first grade. BUT I am happy to say he doing well and up to standard in almost everything except reading and comprehension (has short term memory issues still) and will pass 1st grade.

 

Hang in there. Getting him well is the number one priority. Plus now you don't have to worry so much about what he is being exposed to at school.

 

-Wendy

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Thanks Wendy. Trying to just be relieved I guess that it's only PreK. Actually, early intervention might be giving him some home instructions with a special ed teacher. keeping my fingers crossed. it will still be a challenge to see if he'll even let her teach him anything at home. I can't get him to even focus on letting me read one book to him, although it changes day to day.

 

We're soooo anxious to get to Dr. Jones. 2 more weeks! It just doesn't seem like he's getting the right med combo. We've been at this stand still for the past month.

 

His twin brother (who was alone this weekend) summed our house up: "mom, it's sooo peaceful. there's no screaming." (the Lyme twin was away) How sad is that. :wacko:

 

thanks again.

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If it's any consolation, we saw similar lack of impulse control a few weeks after what I believe was "the" tick bite when my DS was in kindergarten (took another 2.5 yrs to realize this was our root cause). Obviously, attacking the root cause will help everything else. But even with meds, you'll likely see bad times as you do battle. So there are two things I'd work on, with the mind set that this will be something you're dealing with for the next 1-2 years...

 

First, I'd introduce the ideas of CBT/ERP to your son. Name the impulsivity - call it the whacky monster, or the bouncy bug or whatever name seems to resonate. Explain that it's trying to keep all of your son's attention and get him in trouble. Then discuss strategies you're going to use a s a team to get control of the bug. For yourself, you can read Freeing your child from OCD by Tamar Chansky and What to Do When Your Brain Gets Stuck - it's probably over your son's head, but for you, it will give you some ideas on how to build baby steps toward helping your son take control and develop a reward system for every time he's able to control himself. The idea is just to see the behavior as a third party - an enemy, and to put yourself on the same team as your son and together, develop strategies that help him be the boss and in control. You can go to the Dollar store and get lots of small prizes as rewards for when he stays in control, or make coupons for things like staying up late, or an extra dessert, or extra alone time with you.

 

The second thing I'd do is focus on ADHD strategies for when he's supposed to learn something. My son found it very helpful to squeeze a rubber ball while he was reading, or to stand when he was writing, or to take small breaks and walk around the dining room table after writing one sentence of his homework. Some kids find it helpful to chew gum, or suck on a candy. If he's supposed to pay attention while you read him a book, let him drum his hands on his legs or play with a rubber band on his fingers. Doing two things at once seems to help ADHD kids. Every time he meets a goal, celebrate. The more he feels successful, the more it can build on itself.

 

Yes, it's only pre-k. And as my son got older (and healthier) the impulsivity got much much better. So some of it is just age-related. But helping him learn to be the boss of his own behaviors is a great foundation for any kid, but especially for one who's going to be doing battle with microbes that alter behaviors.

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This probably won't help but these behaviors sound so much like some of my son's - there have been times I could have described the same exact behaviors. Just to let you know that you are not alone. The good thing is that you caught it and are treating it much earlier than us.

 

I was just curious if you got a positive Lyme test and how long you think your son has had Lyme. I think I corresponded with you that we think my son's Lyme is congenital, he is 8 now and he was IGG positive by IGenex criteria.

 

Aidan has never been able to function in a regular classroom so it sounds as if your son is much more functional then mine. I think it is possible that all or some of Aidan's behaviors/ developmental delays may be due to Lyme and it difficult to realize if he had been treated earlier for PANDAS/Lyme he might have had more of a chance. I was going to suggest that you check out the early intervention services in the your area but I reread the posts and noticed that you already did. The special ed preschool in our school district sounds like it would have been great for your son since they have special ed kids but also typical kids.

 

Aidan got kicked out of a Mom's day out program when he was 2 or 3 for biting so we also know what it is like to have a child be kicked out of a program. Of course I couldn't argue - it just devastated me that he was hurting other children like this. The biting always seemed weird to me since it would always seem out of the blue but now I think we have an explanation. He kept doing it until he was in kindergarten and it greatly reduced when we did gluten free/casein free/soy free diet. But we still have behaviors like you are talking about that seem worse at some times than at others and they tolerate it at school since he is in a special ed classroom. I am so hoping that the Lyme treatments will eventually reduce all this. I just wonder how much of this is Lyme and how different Aidan would be if it was caught earlier!

 

Lets hope that all these kids get the healing they deserve!

Elizabeth

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If it's any consolation, we saw similar lack of impulse control a few weeks after what I believe was "the" tick bite when my DS was in kindergarten (took another 2.5 yrs to realize this was our root cause). Obviously, attacking the root cause will help everything else. But even with meds, you'll likely see bad times as you do battle. So there are two things I'd work on, with the mind set that this will be something you're dealing with for the next 1-2 years...

 

First, I'd introduce the ideas of CBT/ERP to your son. Name the impulsivity - call it the whacky monster, or the bouncy bug or whatever name seems to resonate. Explain that it's trying to keep all of your son's attention and get him in trouble. Then discuss strategies you're going to use a s a team to get control of the bug. For yourself, you can read Freeing your child from OCD by Tamar Chansky and What to Do When Your Brain Gets Stuck - it's probably over your son's head, but for you, it will give you some ideas on how to build baby steps toward helping your son take control and develop a reward system for every time he's able to control himself. The idea is just to see the behavior as a third party - an enemy, and to put yourself on the same team as your son and together, develop strategies that help him be the boss and in control. You can go to the Dollar store and get lots of small prizes as rewards for when he stays in control, or make coupons for things like staying up late, or an extra dessert, or extra alone time with you.

 

The second thing I'd do is focus on ADHD strategies for when he's supposed to learn something. My son found it very helpful to squeeze a rubber ball while he was reading, or to stand when he was writing, or to take small breaks and walk around the dining room table after writing one sentence of his homework. Some kids find it helpful to chew gum, or suck on a candy. If he's supposed to pay attention while you read him a book, let him drum his hands on his legs or play with a rubber band on his fingers. Doing two things at once seems to help ADHD kids. Every time he meets a goal, celebrate. The more he feels successful, the more it can build on itself.

 

Yes, it's only pre-k. And as my son got older (and healthier) the impulsivity got much much better. So some of it is just age-related. But helping him learn to be the boss of his own behaviors is a great foundation for any kid, but especially for one who's going to be doing battle with microbes that alter behaviors.

 

Thanks. I'll try those. And all this was followed by family members who spent a good weekend with him and were kind of insisting that his oppositional stuff can be controlled with the right discipline. "you just can't give in." :o no sh**!!! Took everything to hold my tongue. So, if he can control is behavior sometimes, then Lyme isn't causing all of this. Huhhhhh! Silly me....and all these months, I just had to put him in more timeouts. Geeez. :huh: I felt like sending my diary of the past 5 months for them to see what I've been dealing with....better get off this topic! Whewww. Breath. :blink:

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This probably won't help but these behaviors sound so much like some of my son's - there have been times I could have described the same exact behaviors. Just to let you know that you are not alone. The good thing is that you caught it and are treating it much earlier than us.

 

I was just curious if you got a positive Lyme test and how long you think your son has had Lyme. I think I corresponded with you that we think my son's Lyme is congenital, he is 8 now and he was IGG positive by IGenex criteria.

 

Aidan has never been able to function in a regular classroom so it sounds as if your son is much more functional then mine. I think it is possible that all or some of Aidan's behaviors/ developmental delays may be due to Lyme and it difficult to realize if he had been treated earlier for PANDAS/Lyme he might have had more of a chance. I was going to suggest that you check out the early intervention services in the your area but I reread the posts and noticed that you already did. The special ed preschool in our school district sounds like it would have been great for your son since they have special ed kids but also typical kids.

 

Aidan got kicked out of a Mom's day out program when he was 2 or 3 for biting so we also know what it is like to have a child be kicked out of a program. Of course I couldn't argue - it just devastated me that he was hurting other children like this. The biting always seemed weird to me since it would always seem out of the blue but now I think we have an explanation. He kept doing it until he was in kindergarten and it greatly reduced when we did gluten free/casein free/soy free diet. But we still have behaviors like you are talking about that seem worse at some times than at others and they tolerate it at school since he is in a special ed classroom. I am so hoping that the Lyme treatments will eventually reduce all this. I just wonder how much of this is Lyme and how different Aidan would be if it was caught earlier!

 

Lets hope that all these kids get the healing they deserve!

Elizabeth

 

Hi there,

 

Thanks, I appreciate it. It's always a relief just to know you're not alone. Yes, Colin tested positive on Igenex. The band revealed he has had it for at least 1 year. He'only been on Lyme treatment (2 antibiotics) for the past 2 months. So, I guess it's still early on. Has Aidan been treated for Lyme for awhile? You know, every child is different, so you never know. Maybe once you get more treatment behind you or change up the treatment a bit, you'll see more improvements. Why do you suspect it's cogenital. Did you have Lyme? Just wondering, because Colin had all those common symptoms from birth....rashes coming and going, fidgety, GERD, difficulty sleeping, difficulty eating, fearless for a 8 month old, lots of ear infections that didn't respond to antibiotics.

 

darlene

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Has Aidan been treated for Lyme for awhile? You know, every child is different, so you never know. Maybe once you get more treatment behind you or change up the treatment a bit, you'll see more improvements. Why do you suspect it's congenital. Did you have Lyme? Just wondering, because Colin had all those common symptoms from birth....rashes coming and going, fidgety, GERD, difficulty sleeping, difficulty eating, fearless for a 8 month old, lots of ear infections that didn't respond to antibiotics.

 

darlene

 

These symptoms you describe here from birth also sound just like Aidan. We did not get symptoms that we were extremely worried about until he was 1 or 1.5 years old (don't a lot of babies have GERD or trouble sleeping?) At 1 or 1.5 we noticed a movement disorder and developmental delays and of course we had no clue to look at PANDAS/Lyme. But looking back there have been issues since birth that I think now were out of the norm. He had reflux almost immediately - still in the hospital and at times it seemed like spasms - not much different than a tic or an uncontrolled movement - a possible precursor to his abnormal movements?. Also the sleeping. He was my third kid and I knew about training them to go to sleep at night. usually when you train them to go to sleep on their own and they can sleep through the night you've got it made (or so I thought). With Aidan we had good sleeping for a period and then all of a sudden it was terrible. We also had frequent infections. I think it is due to all of these issues since birth that we are thinking congenital.

 

We have only been working with the LLMD since Jan. but so far we are still on the antibiotics that we have used as a result of PANDAS but the only change is that we are using both at the same time now - azith and augmentin. We are doing a lot of testing and adding supplements before hitting harder but I do think we have had herxing.

 

I have not been diagnosed with Lyme but I don't think it is out of the question as I have had some symptoms that I think could be Lyme and have had numerous tick bites (years ago but they were so common place for me and I never was worried about Lyme to really document when and where) I have also lived in many states and traveled to many places. I am also worried about my whole family (husband and other 2 kids) as I see symptoms that could be attributed to Lyme in all of us. I keep debating on testing the whole family and I think there are many reasons that I have not done it yet including:

-trying to figure out who to ask to order the tests - I am not sure who would do it locally without thinking I am crazy, does anyone know if LLMDs will generally order tests for other family members that are not currently being seen by them.

- doubt about whether the symptoms I see are actually possible Lyme or am I overreacting

-We are so caught up with Aidan and taking care of his needs/treatments that I am not sure I am ready to delve into the possibility of us all possibly needing treatment

-In comparison our symptoms don't seem that bad - is it worth it to think about it in the whole family or will controlling stress help us more now

- the fear of positive results - will I have to go through treatment with others? will it be costly? will treatment stir things up and make something that is currently manageable worse?

...but positive results could support the possibility of congenital Lyme for Aidan.

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Has Aidan been treated for Lyme for awhile? You know, every child is different, so you never know. Maybe once you get more treatment behind you or change up the treatment a bit, you'll see more improvements. Why do you suspect it's congenital. Did you have Lyme? Just wondering, because Colin had all those common symptoms from birth....rashes coming and going, fidgety, GERD, difficulty sleeping, difficulty eating, fearless for a 8 month old, lots of ear infections that didn't respond to antibiotics.

 

darlene

 

These symptoms you describe here from birth also sound just like Aidan. We did not get symptoms that we were extremely worried about until he was 1 or 1.5 years old (don't a lot of babies have GERD or trouble sleeping?) At 1 or 1.5 we noticed a movement disorder and developmental delays and of course we had no clue to look at PANDAS/Lyme. But looking back there have been issues since birth that I think now were out of the norm. He had reflux almost immediately - still in the hospital and at times it seemed like spasms - not much different than a tic or an uncontrolled movement - a possible precursor to his abnormal movements?. Also the sleeping. He was my third kid and I knew about training them to go to sleep at night. usually when you train them to go to sleep on their own and they can sleep through the night you've got it made (or so I thought). With Aidan we had good sleeping for a period and then all of a sudden it was terrible. We also had frequent infections. I think it is due to all of these issues since birth that we are thinking congenital.

 

We have only been working with the LLMD since Jan. but so far we are still on the antibiotics that we have used as a result of PANDAS but the only change is that we are using both at the same time now - azith and augmentin. We are doing a lot of testing and adding supplements before hitting harder but I do think we have had herxing.

 

I have not been diagnosed with Lyme but I don't think it is out of the question as I have had some symptoms that I think could be Lyme and have had numerous tick bites (years ago but they were so common place for me and I never was worried about Lyme to really document when and where) I have also lived in many states and traveled to many places. I am also worried about my whole family (husband and other 2 kids) as I see symptoms that could be attributed to Lyme in all of us. I keep debating on testing the whole family and I think there are many reasons that I have not done it yet including:

-trying to figure out who to ask to order the tests - I am not sure who would do it locally without thinking I am crazy, does anyone know if LLMDs will generally order tests for other family members that are not currently being seen by them.

- doubt about whether the symptoms I see are actually possible Lyme or am I overreacting

-We are so caught up with Aidan and taking care of his needs/treatments that I am not sure I am ready to delve into the possibility of us all possibly needing treatment

-In comparison our symptoms don't seem that bad - is it worth it to think about it in the whole family or will controlling stress help us more now

- the fear of positive results - will I have to go through treatment with others? will it be costly? will treatment stir things up and make something that is currently manageable worse?

...but positive results could support the possibility of congenital Lyme for Aidan.

 

Elizabeth,

 

I've had all the same questions. I'm concerned his twin brother is showing some symptoms but I am TOTALLY Lyme paranoid at this point. Never thought of it would happen to my little guy, when he got it he was only 2 or 3. But I too am not sure about cogenital or not. I never had symptoms until after my pregnancy. And they're mild, so right now, we're focusing on testing for his brother. Strange you mention the movement thing...I always called Colin my wiggle worm, because he was always scrunching up and moving like he was in discomfort. I felt terrible for him and would feed him only a little at a time. He was also EXTREME active for a infant. But, his twin never had any of those behaviors. So, if it was cogenital, I would think both would have displayed something in infancy. But who knows. This things seem so illusive and confusing. :blink:

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I have not been diagnosed with Lyme but I don't think it is out of the question as I have had some symptoms that I think could be Lyme and have had numerous tick bites (years ago but they were so common place for me and I never was worried about Lyme to really document when and where) I have also lived in many states and traveled to many places. I am also worried about my whole family (husband and other 2 kids) as I see symptoms that could be attributed to Lyme in all of us. I keep debating on testing the whole family and I think there are many reasons that I have not done it yet including:

-trying to figure out who to ask to order the tests - I am not sure who would do it locally without thinking I am crazy, does anyone know if LLMDs will generally order tests for other family members that are not currently being seen by them.

- doubt about whether the symptoms I see are actually possible Lyme or am I overreacting

-We are so caught up with Aidan and taking care of his needs/treatments that I am not sure I am ready to delve into the possibility of us all possibly needing treatment

-In comparison our symptoms don't seem that bad - is it worth it to think about it in the whole family or will controlling stress help us more now

- the fear of positive results - will I have to go through treatment with others? will it be costly? will treatment stir things up and make something that is currently manageable worse?

...but positive results could support the possibility of congenital Lyme for Aidan.

 

I was just reading through this thread and I think you're reading my mind. ^_^ I also think my child has congenital lyme. We treated for PANDAS and had a remarkable positive response to antibiotics. But when we switched to high dose abx all heck broke loose. DS7 has all of the same behaviours and symptoms you both mentioned. At present he is only going to school for an hour and a half each day (grade 2), and barely holding it together. I also see symptoms in my whole family. I have all the same reasons for why I haven't done anything more about that yet. Especially finding a doctor who won't think I'm crazy. DS7 has been able to control himself for extended periods of time, especially with other family members. It makes it so difficult to explain. When DS tested negative for lyme I was shocked, so I tested myself - IgM positive by CDC and IGeneX & IgG negative, but with 4 bands. So we've been waiting for DS to see an LLMD. I keep telling myself that I'm just waiting to see the Infectious Diseases Doctor first, to see if it really is lyme, before I decide what to do for everyone else. Then, if it really is lyme I need to do something for the whole family. We are just so focused on DS7 because his every moment is a crisis. But DS5 and DH are getting worse, and DS4 is ALWAYS sick. I'm so tired. :( LLMD on April 5th, I'm counting the minutes...

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You so read my mind with the family thing! I even have to bite my tongue with my husband. While DS4 was with him and his family over the weekend, there were no major episodes. A screaming incident that lasted a few minutes. But according to them, if he can control it and knows that he's doing something wrong...then it's strictly a discipline thing. they don't seem to understand that yes, you need to discipline (except when your dealing with a real exacerbation, it won't work!) but there still is an illness CAUSING IT! So even my husband falls into it at times. Seems better with others but not so good at home (and I'm a stay at home mom) mmmmmm....so must be my lack of discipline :huh: I've decided you can't explain the effects of Lyme and Pandas to everyone. It's so confusing and so much attention and energy has to be positively directed at the child who is sick. But, gosh....read a freakin info. on Lyme at least before passing judgement!!!

 

Sorry...family thing hit a nerve.

 

Anyways, keep us posted on your visit. Are you seeing LLMD in US or Canada?

 

darlene

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I've had all the same questions. I'm concerned his twin brother is showing some symptoms but I am TOTALLY Lyme paranoid at this point. Never thought of it would happen to my little guy, when he got it he was only 2 or 3. But I too am not sure about co genital or not. I never had symptoms until after my pregnancy. And they're mild, so right now, we're focusing on testing for his brother. Strange you mention the movement thing...I always called Colin my wiggle worm, because he was always scrunching up and moving like he was in discomfort. I felt terrible for him and would feed him only a little at a time. He was also EXTREME active for a infant. But, his twin never had any of those behaviors. So, if it was co genital, I would think both would have displayed something in infancy. But who knows. This things seem so illusive and confusing. :blink:

 

Yes Aidan was so wiggly - I think he rolled over very early but it wasn't like it was something intentional that he had done he was just so squirmy it happened. Also my 2 other kids sat up (barely) for their 6 month picture at their baptism but Aidan could not - I really thou gt he was strong enough too he just could sit still enough to hold it.

 

It took me a while to really think about it but it is interesting about your twins with one having similar symptoms as my son from infancy (that I am thinking may be attributable to Lyme) while the other one did not have these symptoms. So, does it mean that the symptoms from infancy are not really symptoms of Lyme? Or could one of your twins have got Lyme from you congenitally but not the other? Or did they both get it and it is more actively attacking one twin over the other? Or did it make infect a certain part of the body in one twin but not the other(such as the brain since there are neurobehavioral symptoms)?

 

It does seem to affect some people more than others. I also think that from stories I have read that it can be in your system and not really have a big affect until all of sudden you have the symptoms often brought on by some other trauma or stress (or maybe some never get much symptoms at all). Or some may have one type of symptom at one time and another at another time. I guess that is what I see in my other children - like the 2 years ago my son Sam got stomach aches and felt dizzy and it seemed to be worse once a week. He missed school every Thursday for a few weeks in a row, He also had one incident of a racing heart at that time. The doctor never found a reason for it and it eventually stopped. But now I am thinking - was that Lyme?

 

I am curious if your twins are identical or fraternal. This could be really interesting to a researcher if these symptoms do turn out to be from Lyme!

Elizabeth

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You so read my mind with the family thing! I even have to bite my tongue with my husband. While DS4 was with him and his family over the weekend, there were no major episodes. A screaming incident that lasted a few minutes. But according to them, if he can control it and knows that he's doing something wrong...then it's strictly a discipline thing. they don't seem to understand that yes, you need to discipline (except when your dealing with a real exacerbation, it won't work!) but there still is an illness CAUSING IT! So even my husband falls into it at times. Seems better with others but not so good at home (and I'm a stay at home mom) mmmmmm....so must be my lack of discipline :huh: I've decided you can't explain the effects of Lyme and Pandas to everyone. It's so confusing and so much attention and energy has to be positively directed at the child who is sick. But, gosh....read a freakin info. on Lyme at least before passing judgement!!!

 

Sorry...family thing hit a nerve.

 

Anyways, keep us posted on your visit. Are you seeing LLMD in US or Canada?

 

darlene

 

I had this same discussion with my Mom last night. Yes, DS7 can hold it together for a while, but it takes every bit of effort he can possibly muster. And the explosion of symptoms afterwards makes it hardly worth the while. When he was 4-5, he did well in school for an entire year, but he would start screaming at the top of his lungs after the bus dropped him off, while still walking up the driveway! The rest of each day was nightmare. He would always save his worst for me, and only had serious rages when DH was at work. I started to seriously wonder if I was the problem! But DS couldn't hold it together forever and when he was 6 he could no longer cope at school, and he raged in front of DH, and now he doesn't function well anywhere except at my parents' house. I had to video some rage episodes before my parents really understood what we were dealing with, and how I was attempting to handle it. He's had several rages at school now too, and all of a sudden the psychiatrist and therapist started taking it seriously. I wanted to scream - this is what I have been dealing with all along and I've been asking for help for years!! But I was just thankful to finally get some help and to have DH finally on board.

 

I'm taking DS7 to see an LLMD in Toronto, recommended by the Canadian Lyme Society. I know that IF he has lyme there is no magic fix and treatment is long and there will be herxing. And I don't know how much of the psych stuff is caused by lyme and if it will be reversible and how much damage is done by patterns learned, etc. He's been this way since birth, so I don't even know what lies underneath the illness. But we've seen glimpses of a happy, delightful boy when we first tried antibiotics. It was amazing and gives me hope. I'm feeling more hopeful than I have in a very long time. I will post an update after we see the LLMD on Tuesday.

 

And I agree wholeheartedly with your comment about saving positive energy for your child. We're going to need it!

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I've had all the same questions. I'm concerned his twin brother is showing some symptoms but I am TOTALLY Lyme paranoid at this point. Never thought of it would happen to my little guy, when he got it he was only 2 or 3. But I too am not sure about co genital or not. I never had symptoms until after my pregnancy. And they're mild, so right now, we're focusing on testing for his brother. Strange you mention the movement thing...I always called Colin my wiggle worm, because he was always scrunching up and moving like he was in discomfort. I felt terrible for him and would feed him only a little at a time. He was also EXTREME active for a infant. But, his twin never had any of those behaviors. So, if it was co genital, I would think both would have displayed something in infancy. But who knows. This things seem so illusive and confusing. :blink:

 

Yes Aidan was so wiggly - I think he rolled over very early but it wasn't like it was something intentional that he had done he was just so squirmy it happened. Also my 2 other kids sat up (barely) for their 6 month picture at their baptism but Aidan could not - I really thou gt he was strong enough too he just could sit still enough to hold it.

 

It took me a while to really think about it but it is interesting about your twins with one having similar symptoms as my son from infancy (that I am thinking may be attributable to Lyme) while the other one did not have these symptoms. So, does it mean that the symptoms from infancy are not really symptoms of Lyme? Or could one of your twins have got Lyme from you congenitally but not the other? Or did they both get it and it is more actively attacking one twin over the other? Or did it make infect a certain part of the body in one twin but not the other(such as the brain since there are neurobehavioral symptoms)?

 

It does seem to affect some people more than others. I also think that from stories I have read that it can be in your system and not really have a big affect until all of sudden you have the symptoms often brought on by some other trauma or stress (or maybe some never get much symptoms at all). Or some may have one type of symptom at one time and another at another time. I guess that is what I see in my other children - like the 2 years ago my son Sam got stomach aches and felt dizzy and it seemed to be worse once a week. He missed school every Thursday for a few weeks in a row, He also had one incident of a racing heart at that time. The doctor never found a reason for it and it eventually stopped. But now I am thinking - was that Lyme?

 

I am curious if your twins are identical or fraternal. This could be really interesting to a researcher if these symptoms do turn out to be from Lyme!

Elizabeth

 

They're both boys and fraternal. So, they're very different in many ways. We still have to have his brother tested for Lyme.

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But according to them, if he can control it and knows that he's doing something wrong...then it's strictly a discipline thing. they don't seem to understand that yes, you need to discipline (except when your dealing with a real exacerbation, it won't work!) but there still is an illness CAUSING IT! So even my husband falls into it at times. Seems better with others but not so good at home (and I'm a stay at home mom) mmmmmm....so must be my lack of discipline

 

 

So if it is your discipline - why did he have such a hard time at school as in your original post? Do they have an issue with discipline also?

 

For us these behaviors wax and wane also so he can hold it together in one instance but not at another time.

 

My son was about your son's age when I told a neurologist that I think there is something more that we are missing that was causing some of his behavior. His response was "Do they have trouble with him at school?" At the time I said "No" and that was because he seemed to be better at school and teachers seemed to be able to get him to do more than I could. But in hindsight he did have problems with the behaviors at school and they have gotten more obvious as he gets older. I think he was implying that it was my parenting. I overall liked this doctor and I don't think that he was really trying to criticize me because it was obvious that Aidan was not an easy child to parent. The thing that bothered me is that is that I had a gut feeling that I think was valid that wasn't really listened to. When we went away from this doctor my husband really liked him (and I did too) but I said that I didn't feel right about that one thing so we never went back although it was a least a year before I started looking into stuff outside of traditional medicine. Ironically I saw the same doctor on Larry King Live when Jenny McCarthy was on. He was taking the opposing side from Jenny and her doctors about vaccines. So there was Jenny's doctor, this neuro doctor, the head of the AAP speaking on vaccines and lastly there was a pediatric doctor that wasn't necessarily anti vaccine but she said we really need to listen to the mothers and what they are saying about these children and I said "Bingo!".

Elizabeth

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