Testing on young children

[colleendonny]

I have a few questions that I am looking for some help on.

 

My DD5 (PANDAS) had a few indeterminates for Lyme through IgeneX. She also has a positive IgG for ehrlichiosis and is being treated by a PANDAS doctor and an LLMD. LLMD also started her on A-bart.

 

But my questions are about my other kids.

 

We just had my DS2 tested by Dr. B for possible PANDAS, and Lyme and CO. We will most likely test him for just Lyme also through IgeneX. He had a known tick bite last September. I never treated him for it. (If only I knew then what I do now!) Questionable symptoms I see in him are sensitivity to light and seldomly dilated pupils. ( He was sensitive to light before the tick bite). Brought him to the eye doctor and everything was normal. He has awful emotional libality, (which could be typical 2 year old behavior). When DD5 had sudden onset back in October, I did notice some separation anxiety from him at night, although not extreme. But again, separation anxiety in a 2 year old can also be normal. A few weeks ago he strated to stutter. He never had a stutter before. He also gets frequent bellyaches and his belly is often hard and descended. We are seeing a GI specialist next week and Dr. B is testing him for Celiacs. We should hopefully get his results back soon from Dr. B.

 

Now I also have a DD 10 months. Back in December she had her 6 month checkup. She had all of her vax prior and I walked in the office that day planning to refuse any vax. But me pedi talked me into getting the PCV13. Afew weeks later she started to shake her head from side to side as if saying no. I brought her to the pedi and he thought it was nothing. But we did a 1/2 hour partially asleep EEG. It was normal. She was also cutting a few teeth at the time and I read some babies shake their head from the pain.

 

A month after she was sitting in her high chair and I looked over and her eyes were glazed and she was doing a slow blink while her head was slowly bobbing. It looked as if she were trying to keep herself conscious. The episode lasted about 2 minutes with a period of about 10 minutes of slight confusion afterwads. We took an ambulance to the hospital and there were no more episodes there. Met with a neurologist a few weeks later and there was no EEG ordered and said to call if anything happened again. On Easter and the day after I noticed 2 more episodes of the same activity but only lasting less that 15 seconds.

 

So I called to make a follow up, but it isn't until June. Anyway, Saturday night, at dinner in her high chair, she did another episode that lasted 10 seconds and another quick one right after. Then again 4 more times when we got home. It was 6 episodes within 2 1/2 hours. So I called Childrens Boston and they said to bring her in. We stayed overnight Saturday and Sunday. She had an EEG moniter on her from 11am Saturday until 2pm Sunday. There were no abnormalities. She also started the head shaking, after stopping for a while, a few weeks back with an ear infection. She did a quick episode where her eyes and head went down (a little different than the episodes on Sat night) and still, the EEG showed no abnormalities. And after watching her closely the past two day I see her sometimes with a blink that lasts longer than it should and sometimes her head dropping.

 

So, now I am wondering if she could have Lyme..or maybe PANDAS? I had Dr. B test me for Lyme and TBI's last week and haven't received any results yet.

 

I will probably test myself for Lyme through IgeneX as well. I have no strange symptoms whatsoever though...but I guess stranger things have happened.

 

I will have my husband checked by Dr. B as well at our next appt. in June and maybe through IgeneX.

 

So my questions are:

Is my 10 month old too young to check for Lyme and Co?

Would she still have my antibodies?

I am still nursing very frequently, so I am guessing she definitely has my antibodies.

Do you all think Lyme can be transmitted through semen? I think some suggest it, but others don't think it is... My husband has Raynaud's, where your hand and feet lose circulation, especially in the cold.

 

Thanks for your ideas.

[NancyD]

She definitely could have Lyme and/or PANDAS. She should be tested -- she's not too young. I would have the entire family tested including your husband.

[colleendonny]

Thanks Nancy,

I added her into our appt. With Dr. B for the end of June and will bring her along to Kayleighs LLMD appt at the end of the.month.

You don't think her blood work could be misinterpreted because of her age? Her pedi said babies will not be tested for Hep C until 18 months because of the antinodies...

[colleendonny]

Our pedi actually tested hee today for Lyme after what has been going on with the seizure like episodes. Now she has a fever of unknown origin that was as high as 104 last night.

 

He is testing through Imugen. We won't have the results for about 1 week.

I still haven't got my results yet.

[philamom]

I agree with NancyD. I wonder if you could get in a phone consult with Dr. J (at least for your 10 month old). Not sure the cost of it.

 

Sending prayers!

[Familyof5]

Do all those things but also look around your home for mold. The symptoms you are describing are very similar to what my three children experienced. If your husband has Raynouds, that is an autoimmune condition frequently caused by mold. He may have passed on the "mold susceptible" gene to your children. If four family members are displaying strange chronic illness symptoms, it could be the result of the environment you are living in. Check out this website for more information...this doctor also treats lyme disease as well:

 

survivingmold.com

[philamom]

Do all those things but also look around your home for mold. The symptoms you are describing are very similar to what my three children experienced. If your husband has Raynouds, that is an autoimmune condition frequently caused by mold. He may have passed on the "mold susceptible" gene to your children. If four family members are displaying strange chronic illness symptoms, it could be the result of the environment you are living in. Check out this website for more information...this doctor also treats lyme disease as well:

 

survivingmold.com

I've had Raynauds 20+ years - never heard of the mold connection. hmmm

[911RN]

Do all those things but also look around your home for mold. The symptoms you are describing are very similar to what my three children experienced. If your husband has Raynouds, that is an autoimmune condition frequently caused by mold. He may have passed on the "mold susceptible" gene to your children. If four family members are displaying strange chronic illness symptoms, it could be the result of the environment you are living in. Check out this website for more information...this doctor also treats lyme disease as well:

 

survivingmold.com

I've had Raynauds 20+ years - never heard of the mold connection. hmmm

 

 

My husband is the same- Raynauds for as long as I can remember- never knew or ever heard of mold connection??

[Orion]

He is testing through Imugen. We won't have the results for about 1 week.

I still haven't got my results yet.

 

Unfortunately, Imugen is no better than Quest or LabCorp, but insurance will cover it, and hopefully the test will yield some clues.

 

Make sure you get a copy of any results...even if the Elisa is negative. (sometimes the report will read that a positive is >.90, and your result was .83 - but you wouldn't know that if you didn't get a copy of the results.) If the Elisa is positive, then they will run the Western Blot, which may be negative, with the report then stating that the entire test was negative. It is very helpful to know which, if any, bands on the Western Blot are actually positive (or "Reactive").

 

This is assuming that the Doc didn't just bypass the Elisa entirely, and requested the lab to run only the Western Blot.