Children with atypical/behaviorial symptoms

[adkmom]

Hi everyone,

 

Am I alone or is it fairly common for children with Lyme to present with more cognitive or behavioral type symtoms? We never saw a rash, tick bite or even recall flu-like illness (maybe presented like an ear infection, since we had lots of those) and was treated but disappeared. Even dd4's fatigue was intermittent and mixed with high bursts of ADHD behavior.

 

Instead, in order of how they presented: inability to focus, impulsivity, hyperactivity, difficulty following directions, oppositional, mild fears (OCD?)not wanting to sleep alone because of monsters, complaints about bugs being in his room.... (abrupt, jerky movements throughout the night even while asleep), THEN periodic fatigue, feet pain, several headaches.

 

Am I alone...any others see more behaviorial, less "physical" symptoms initially???

 

I'm working on articles for several newspapers for May's Lyme Awareness Month.

 

thanks guys... lovin these things.

 

 

darlene

[Suzan]

I am wondering if it's different for children with congenital lyme than those bitten by a tick but I don't know. My children first presented with sensory processing disorder, OCD, fears, separation anxiety, etc. developing int o PANDAS. dd9 developed her pain when she was round 5 and muscle twitches started age 7 and dd8 has seizures (age 3) and an extra heartbeat (age 4).

 

Susan

Edited February 13, 2011 by Suzan

[adkmom]

I am wondering if it's different for children with congenital lyme than those bitten by a tick but I don't know. My children first presented with sensory processing disorder, OCD, fears, separation anxiety, etc. developing int o PANDAS. dd9 developed her pain when she was round 5 and muscle twitches started age 7 and dd8 has seizures (age 3) and an extra heartbeat (age 4).

 

Susan

 

Susan,

 

Was your child born with Lyme? Was the sensory processing more a symptom of Lyme or Pandas? Or maybe we don't know?

My dd4 started too with sensory processing (forgot that one), then adhd, fears..and same course as your child. Diagnosed Pandas in Nov., 2 weeks later, diagnosed with Lyme.

 

darlene

[Suzan]

Susan,

 

Was your child born with Lyme? Was the sensory processing more a symptom of Lyme or Pandas? Or maybe we don't know?

My dd4 started too with sensory processing (forgot that one), then adhd, fears..and same course as your child. Diagnosed Pandas in Nov., 2 weeks later, diagnosed with Lyme.

 

darlene

 

Yes, I believe they were both born with lyme as I have been diagnosed with lyme too. Both my girls got strep early 12-16 months and had ear, sinus, chest infections one right after the other. Sensory processing diagnosed around ages 3 and 4. Lots of weird symptoms and hard times until our diagnosis of pandas at ages 7 and 8 and now we have discovered lyme at ages 8 and 9. I don't know what is from pandas or from lyme. My hope is that treating the lyme will treat the pandas.

 

Susan

[momcap]

Yes! My DS7 presented as behavioural/psychological, and was treated as such by doctors all along. I kept insisting something physical was going on because of the severity of his leg pains (docs said growing pains), and a variety of never-ending all-over pain complaints. (Which were also dismissed as psychological.) He would be diagnosed bipolar and drugged right now, if I hadn't started researching for myself.

 

DS's presentation: sensory, anxiety, mood lability, ODD, pain, PANDAS. He also has bouts of severe ADHD. Last spring he started having chest pain attacks, and that is what finally motivated me to figure it out since the doctors couldn't or wouldn't. It was not until a couple of months of rotating antibiotics that he got hit with many more physical symptoms. We do not have a lyme diagnosis yet. We're waiting to see the LLMD. I think it's congenital lyme - I tested positive and figure I've had it since 9th grade.

[aidansmom]

Our most pronounced symptoms in our 8 year old are behavioral/cognitive perhaps because these are the most distressing to me as far as him functioning in the world. I guess I can't be sure that they all can be attributed to Lyme but I am hoping and that they can be resolved with treatment which we ar just starting. We have ADHD, aggressiveness, ODD, can't follow instructions, sensory issues, anxiety and he is way below age level academically but we think he may be actually really smart. He has had issues like this since an Early age so we are thinking congenital Lyme.

 

He also has had frequent infections including strep, high strep titers and his behavior that waxes and wanes (although baseline isn't so great either but way better then when he is not feeling well) and improvement with the gluten free, casein free, soy free diet (which out LLMD says is very common in Lyme patients),

Elizabeth

[laure]

I have read that cognitive and behavior changes are quite often the ONLY symptom of lyme in children. Much more common than with adults. My daughter only has these symptoms, nothing physical. Even as she improves, nothing physical is changing, except those things cognitively affecting her physical performance (ie: she is much more aggressive in sports now, understands where she is supposed to be and what she is supposed to be doing on the ice, field, etc.).

[matis_mom]

Darlene,

Your description sounds just like my daughter, and her main problem is Bartonella. Look it up. The treatment is slightly different than for Lyme. My daugher is doing better, but still not completely healed.

[adkmom]

Darlene,

Your description sounds just like my daughter, and her main problem is Bartonella. Look it up. The treatment is slightly different than for Lyme. My daugher is doing better, but still not completely healed.

 

Hi there,

 

I kept saying DD!!, meant DS4..anyways, the LLMD said it sounds like he has Bartonella as well (no talk of self harm though and no cough that I thought were always present with Bartonella) But I thought the treatment was the same. He's on Azithro and Omnicef. Is it usually a different antibiotic for that? Does your daughter also have Lyme? What state are you in? So, your daughter presented mostly with neuro/psych symptoms?

 

thanks.

 

darlene

[matis_mom]

Darlene,

Your description sounds just like my daughter, and her main problem is Bartonella. Look it up. The treatment is slightly different than for Lyme. My daugher is doing better, but still not completely healed.

 

Hi there,

 

I kept saying DD!!, meant DS4..anyways, the LLMD said it sounds like he has Bartonella as well (no talk of self harm though and no cough that I thought were always present with Bartonella) But I thought the treatment was the same. He's on Azithro and Omnicef. Is it usually a different antibiotic for that? Does your daughter also have Lyme? What state are you in? So, your daughter presented mostly with neuro/psych symptoms?

 

thanks.

 

darlene

My daughter presented mostly with irrational fears, cognitive inability (only with Math, strange... concepts she had already mastered brought her to tears... she could still "do it" but somehow could not completely "grasp it", hard to describe), very emotional, and at times kind of regressed (as in, she is 10 and was acting more like a 5 or 6yo!) We think she has Lyme too, but all her bloodwork is absolutely normal, we are only going by symptoms. She did Augmentin, Bicillin shots, then she did Augmentin/Rifampin-Zithromax combo, now we are on Augmentin+Zithromax daily plus going after parasites... The only physical symptoms for her are tiredness, and she had a few episodes of headaches (very distinct, sharp pain behind the eye), and a bit of foot pain. I took her to a natural practitioner I trust just to confirm we are headed in the right direction and she confirmed through muscle testing, it's Bartonella, but she only testing weak for in in the nervous system. Sounds wacko, I know, but it works. She adjusted her for that and we have 5 awesome days with NO symptoms... alas it did not hold, but hopefully she will continue to make progress.

I'm in VA

[Fixit]

ok..jumping in...

the cough????

ds said today..that the last 2 days...i am using his words,as when i tried to correct them he wanted to be sure i use his words (maybe i shouldn't have told him my sister worked in a gp office and was told to reliegh message exactly and not change the words, as when you do it might change the meaning)

anyway...his breathe is LACKING...and then he has to cough, to sort of clear the air, then he is fine???

my son presents with TS ..that is it...the cough coinsides with 2 weeks from Bicillan shot..and we had started the hd aug/zith combo the next day?

Any thoughts?

 

ps..i have not seen or heard the cough..i assume it is spuratic

4:30...it stopped..i asked if still happening...he said no...so some on thurs and some on friday

Edited February 19, 2011 by Fixit

[ptcgirl]

Reading this post is like a window into my dd life. At 7 she developed PANDAS (severe OCD, some tics, extreme separation anxiety, strange hand shaking chorea, etc). Lots of Zoloft, antibiotics, CBT and it helped a little. Removed her tonsils a few years later and she was 9 months without ANY symptoms. All came back. Now Igenex test shows Lyme (wasn't tested before so don't know how long it has been there). Back on Zoloft, Augmentin, Zithromax... Seems to get worse after a few weeks into treatment. I don't know what to do anymore. LLMD says that IV antibiotics were probably why she went 9 months symptom free (part of the tonsillectomy). She is now 11 and we've been at this for so long.... Really wish there was some magic pill to make her well again. I look back at the 9 months without symptoms and mourn. Frustating....

[philamom]

Reading this post is like a window into my dd life. At 7 she developed PANDAS (severe OCD, some tics, extreme separation anxiety, strange hand shaking chorea, etc). Lots of Zoloft, antibiotics, CBT and it helped a little. Removed her tonsils a few years later and she was 9 months without ANY symptoms. All came back. Now Igenex test shows Lyme (wasn't tested before so don't know how long it has been there). Back on Zoloft, Augmentin, Zithromax... Seems to get worse after a few weeks into treatment. I don't know what to do anymore. LLMD says that IV antibiotics were probably why she went 9 months symptom free (part of the tonsillectomy). She is now 11 and we've been at this for so long.... Really wish there was some magic pill to make her well again. I look back at the 9 months without symptoms and mourn. Frustating....

ptcigrl- My daughter had her first major notable onset of PANDAS symptoms (mixed bag) at age 5. She also went into remission. Then at age 7, came her 4th episode, which we've been treating since. (She also had minor symptoms since age 2 with sinus infections, but they always went away with abx treatment). She is now 9 1/2. In July, we discovered Lyme and in Sept she started treatment with a combo of abx.

I am wondering if your daughter's llmd is going to add a cyst buster into the combo. Also, is she going to be treated for co-infections. Bartonella is known for causing behavoral symptoms. We have seen positive trends with a combo of abx.

[Fixit]

i don't get it either...if you see my other posts...ds has lost so much ground once we started abx combo...and my ds had his tonisls out in sept...and did better after that..but not to full remission...i didn't even think about the iv abx!?!?!?!..he was also on hd clyndamycin post ta for about a month...