adkmom
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Posts posted by adkmom
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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.
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Yes. My PANDAS dd8 is positive for Bartonella. My nonPANDAS son was borderline/questionnable for Bartonella.
We are still waiting on IgeneX Western Blot for both. But the Bartonella results are enough to make us consult with an LLMD.
It's unbelievable how many of these children with Pandas also have Lyme or co-infections. She your daughter was strictly OCD behaviors, right? Curious, because myself and some other moms are sharing their stories with media for May's Lyme Awareness month.
Did she seem to have any other Bartonella symptoms?
Glad you got some answers, though.
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Dr. Jeanne Hubbuch of Newton?
I got her name from one of the Lyme organizations. I am going to try to get an appointment, but was hoping to get feedback from anyone here.
If you have seen her, please PM me.
Dr. B referred us to Dr. J. in CT, but the drives are getting really difficult...
Thanks,
Kara
Hey Kara,
We've spoken a few times. Did you get a Lyme positive result?
Darlen
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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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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."
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. 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. -
Kristy,
don't have any advice but thinkin about you. Hope you feel better.
We see Jones next week. can't wait!darlene
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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.
thanks again.
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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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Has anyone ever had to appeal their insurance rejection for Igenex? If so, just wondering how and what you said in the appeal letter.
Kara - I'll try the letter of necessity you mentioned. We were rejected by BCBC because the lab is out of network. 100% out of pocket! And we need to have our 2nd twin tested!!
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:angry:Kathy,
just wondering, did the doc in Albany start this? and why this med? wondering if it might benefit my little guy.
thanks.
sorry to hear it's a rough treatment
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The more I think about it, it makes so much sense. God forbid, a year from now, symptoms appear and we didn't get him tested. I'd feel horrible, like I paid all this attention to his brother and not him. (although his "symptoms" are so mild compared to Colin's.)
thanks everyone.
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Diddo what Laura said! Every little bit seems to help and you're always giving valuable information. Colin was already infected with Lyme and had his first Pandas exaccerbation after his 4 year vacinnation. Wendy - how do you change up treatment for Bartonella? We suspect Colin has it but still waiting to see Dr. Jones to get on the right treatment plan?
Still waiting for peace in my house
Again, many thanks.
darlene
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Just an update from Dr. B on the whole 2 weeks of raspy voice and exacerbation of symptoms. In case it helps anyone in the future...
Dr. B was absolutely right during our visit. The raspy voice he suspected was from post-nasal drip (he couldn't confirm looking in his throat though). He was congested and he suspected sinus infection. (hence the exacerbation of symptoms and raspy voice) Treated with 4 day of steroid (which he said was okay per Dr. J even with Lyme) and Mucinex. Wouldn't you know. The raspy voice disappeared. symptoms worsened though, I think, b/c of steroid. So, we cut it short 1 day. But back to a clear voice.
just fyi...for anyone else with similar situation.
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Thanks for everyone's thoughts. It's so hard not to watch for every little sign and wonder. I think we will get him tested.
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Anyone have this as a symptom of Lyme for their child? Sudden onset, peeing and pooping in his pants. Non-Lyme child.
thanks.
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Can anyone share their thoughts? I'm a bit Lyme paranoid already but not sure now what to think. DS4 has Pandas/Lyme. Now his twin brother has some odd symptoms (or maybe their just stages...???)
About 6 months ago - changed personlity. went from sweet child to sporadic anger. (thought he was jealous of his brother)
Recently, had several daytime peeing accidents (while playing in his own home), then #2 accidents, several this past week during the day. Today, he had a #2 accident at school. Never even tried to go into the bathroom. He's developed sudden constipation problems.
Last night, ice cold hands. that passed. Then red hot ear. That passed.
Gets easily frustrated at home.But now, getting "very frustrated" at school according to his teacher....only when he can't identify numbers.
She said he doesn't know 1-5. But at home, he knows every single number??!
He's not had separation anxiety, but has been hiding outside his PreK door, acting shy. Fine once he gets inside.
Any thoughts? I'm now terrified we have a 2nd child with Lyme!! We're seeing Dr. B in 2 weeks, who I'm sure will say have him tested.
Do you think he needs more symptoms to have it? Would really appreciate anyone's experiences/thoughts.
HAAAAA!!!!!
Thanks everyone.
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Jen,
It certainly sounds like PANDAS. But so did ours. My little guy was classic, positive strep, all the symptoms. The Pandas doc did not even think he had Lyme, except that he had bouts of fatigue, although they only lasted an hour or two. he was never laid up in bed with extreme fatigue. And complained on and off about his feet hurting, so he had the joint pain. We thought that was a PANDAS symptom, but now realize it's probably related to the Lyme. So, I could't emphasize more how important ruling out Lyme and co-infections is. Bartonella's classic symptom I've learned is thoughts of harming oneself, which sounds like your guy had at one point. I'm not saying he has Lyme. But, we were shocked when our ds4 came back positive and thank god we caught it. It's good you have Dr. L. Also, if you post on the Lyme board, you'll get a ton of feedback on your situation I'm sure. Remember: Lyme testing through labs like LabCorp or Quest are useless. You need to test through a specialized lab, like Igenex. Most peds know nothing about this. But our son tested negative twice through Quest, then clearly positive through Igenex.
don't know how you're doing it with 2 having Pandas??? whewww.
darlene
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None of the docs have mentioned having Lyme tests done? Your twins seem so similar to my one twin dx with pandas but tested positive for Lyme and starting to suspect Bartonella. The antibiotic worked at reducing his tics but within time symtpoms would emerge again. not until the lyme treatment started that we saw more sustained progress..although we have a long ways to go.
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Kmom - Thanks so much for sharing all that! I'll try giving you a call in the next few days. Your info. gave me some hope. Colin is still struggling with not being able to focus, aggression, opposition. Doesn't seem like much, but when it goes on every day it's exhausting! as I know you can all relate to. I don't think "outsiders" understand that. Glad you're all out there to talk to.
The only treatment we're doing is the 2 antibiotics and ordered some supplements. We have appt. Dr. J end of May. I'm hanging on
darlene
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Don't have much for suggestions but am thinking about you. Hang in there. Dr. Bovenzi will at least can get you started on the right path. I know she consults with Dr. Jones. Can't recall, did you say your son has bartonella?
darlene
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I'm sending our ds4 back to preK for a bit. Can anyone suggest any articles that explains the symptoms of Lyme in children that teachers could easily understand? They said they've never seen it in children and didn't understand any of the behavioral & cognitive symptoms. Add that to PANDAS and they're completely lost.
thanks.
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We just found out he also was infected with Lyme while in VT. And had it since he was at least 3. \.
adkmom -- what are you basing that on? was that when symptoms began? and i love VT too -- i went to UVM!
He tested positive on 31? so had it for over a year and those years we were living in VT. Unless, he got it in upstate NY when he was even younger.
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Jen,
What part of Vermont are you in? What a coincidence. We were in Rutland until 6 months ago. And we have twins, both boys. 4 1/2. One twin has been diagnosed with Pandas after strep exacerbated symtpoms set in, motor tic and other behavioral problems. We just found out he also was infected with Lyme while in VT. And had it since he was at least 3. Like all the moms here, would strongly urge you to see a Pandas specialist as well as Lyme specialist. As we've all discovered, the more time we lose in proper treatment, the more difficult the symptoms are to get rid of. I think all of us can't stress that enough.
darlene
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My son will be 3 next month and I noticed his Autism getting worse after his vaccinations so I went to a natropath and she did nutritional microscopy and andvised me to find a lyme literate pediatric doctor as she detected spirochetes in his live blood draw. I am awaiting the igenex test results and he is on ABX for almost 2 months. This is all new and I should have the results in a few weeks.
What state are you in?
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. 
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. 
We see Jones next week. can't wait!
Really discouraged - bumped out of PreK
in PANS / PANDAS (Lyme included)
Posted
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
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