He has long-term "tentative diagnoses" of Asperger's and PDD. Incorrect diagnoses and I've never believed the docs. Since my diagnosis I KNOW he has neither. In addition, his IEP at school stated that no one witnessed any autistic-like behaviors last year. He has ADHD, Anxiety disorder-NOS (anxiety from LD), seizure disorder (complex partial) and central sleep apnea.

Regarding medical treatment, what can I expect to happen? Since I'm sick too, we'll need someone to care for us on occasion. Who do I ask? Where do I go? How does a doctor typically approach a child with congenital LD? Does he start out slowly with abx? Will he even be able to enter school this year? I have my doubts. He's taken antibiotics ONCE in 7 yrs. In retrospect (very recent discovery on our part), he took the antibiotics around the time he received immunizations and I stopped nursing him. Right after that we noticed he started spinning, reapeating things over and over and being out of touch sometimes. I just don't know what to expect and I guess I feel helpless.

My heart goes out to you. I can think of nothing more difficult than a sick mom taking care of her sick child. So, so hard.

I'm not able to give you any substantial information that you need, but just want to encourage you until help arrives.

Just having you as his mom is a good predictor of improvement for your son. He's very lucky to have a mom to pursue the right answers.

You'll have to check with your state, but I believe you can refuse immunizations by filling out the proper forms that you object on religious grounds. That's all you have to say.

You'll have to do all the legwork because nobody in the school system is enamored of this practice.

Simply my opinion, but I believe children are given immunizations too young. I also think the 3 in 1 injection (can't remember..., DPT) should not be given as one injection.

My son's 20 now, but I certainly would have done things differently had I known the horrors of immunization.

I just want to give you great hope. There's a mom in Lousiana that had a Downs Syndrome child. She researched & devised a supplemental protocol with amino acids & other things. It became very popular.

Her child's almond-shaped eyes began SLOWLY to look more normal & she began to flourish.

As for getting help: Perhaps you could ask for help from some churches that have women's groups. Sometimes they're looking for people to help.

I always tell folks try a Baptist church because they are organized down to the last
detail. They use to have a "Comittee on Committees." WOW!

Even if you don't attend those churches, they're suppose to exist to serve others.

Just a few ideas. We'll be thinking of you on your hard trip.

The experts will be here soon to help I'm sure.
Take Care,
Jan

My three children were diagnosed with congenital lyme this week. They are 10 months, three and five years old. We will be taking them to Dr. C for the first time next month.

One thing you said really got my attention. You mentioned that your son was on antibiotics around the time you stopped nursing.

As I was in the process of weaning my healthy 16 month old he became very ill.

He was barely able to keep any food down and was in general very ill. The doctor could find nothing wrong with him.

This lasted several months. He would throw up 3-4 times a day. He lost weight and his growth slowed.

About that time he also developed severe allergies so we thought his problems were related to a severe milk allergy. But at 3 he has NO milk allergy.

He appears to be very healthy now but apparently his western blot indicates otherwise.

I am wondering if weaning has something to do with the onset of symptoms in both my son and yours.

I did not notice anything when I weaned my 5 year old but this makes me worry about my 10 month old.

I am very anxcious to hear more about your son. We will be praying for both of you!

You're right about the Baptist churches! I wish there was one close by, but I'll ask the Methodist church. They helped a lot with my Grandmother before she went to the care center.

A sick Mom taking care of her sick child is very, very difficult. Looking on the bright side of things -- I AM his Mom, so love drives me to ensure he receives the best of care no matter what. Somehow, we'll get through this. Unfortunately, everyone seems to think we'll be "cured" and that will be the end of it.

It's been a 20 year nightmare struggling for answers to my own health problems. But realizing your child is sick, and knowing instinctively he has the same (unidentifiable) illness you have . . . I never stopped fighting for what I knew was correct/incorrect about my son. Every day I would repeat over and over to myself, "he is not going to continue suffering like I have." We finally have the magic answer. The answer came late, but at least now we know what we're fighting. There's nothing worse than fighting something nameless, faceless, and seemingly invisible to everyone around you.

At this very moment I'm feeling so angry. Angry at the hundred + doctors I've seen. The diagnoses I've had. I would estimate the insurance money and personal income on medical un-care and prescriptions at over a million dollars. But most of all I'm angry because doctors told me I was healthy. There wasn't anything wrong with me. I could have a baby and the baby would be healthy.

He had some problems at birth. Floppy. No cry. Meconium. I know today it wasn't meconium. It was infection from LD. At home he seemed healthy until I stopped breastfeeding him, he had the immunization and took the antibiotics. They all occurred at the same time. If I had to pin one thing down I'd have to say it was the antibiotics. It seemed like he went into a herx like an epileptic goes into status epilepticus. But did the immunization add to the mix? What about introducing cow's milk and food when he had been exclusively breastfed? We stopped immunizing right then. We were fortunate enough (at that time) to have an open-minded pediatrician who waived further immunizatins. I'm with you on re-thinking the way we do immunizations . . . .

I had breast cancer in 1995. I told everyone that was a piece of cake compared to the constant struggle with my invisible illness. I meant every word I said and I still stand by it.

Thanks so much for the encouragement. The timing was perfect.

Vic

I can hardly believe what you just told me about your son when he was 16 months old. That is EXACTLY how things unfolded with our son. We thought he had milk allergies and went to extreme measures to avoid dairy products, but still provide nutritious meals. He vomited out of the blue so many times, but usually as you said, several times in a day. He would seem fine one minute and the next he would be vomiting on the floor, etc. Afterward, he would lay down and sleep -- sometimes for hours. He really did appear to have the flu, but he would wake up, vomit once more, then go about his business as if nothing happened. Once he was up and going again, it was hard even for us to believe how sick he had been earlier in the day! His doctor couldn't find anything wrong either. We decided to monitor his milk intake and it really helped. It felt cruel though because he craved it and would drink milk all day long if we let him. Our son's kindergarten teacher could tell by his actions/emotions when he had milk and she went out of her way to work with us on the milk issue (bless her heart).

Our son was tested for milk allergies as well. Left us scratching our heads when he tested negatively. We took him to Mayo (huge mistake, if you're reading this don't go there) and they told us he had cyclic vomiting syndrome. But, they told us his "growing pains" and severe stomach pain didn't fit in with CVS. They wanted to do an endoscopy/colonoscopy at the same time. We said no. Been there, done that twice myself and gained nothing. He has also had migraine headaches for the past 3 years. I didn't buy the cyclic vomiting business. Babies/Kids/Adults don't vomit without cause. Things just kept piling up one on top of another. He just kept getting weaker and sicker with each passing year. Everything became a puzzle piece for me to examine and try to fit together. I went through years of vomiting (down to 98-99 lbs. initially) for no apparent reason. I would wake up at night and vomit -- I rarely got sick during the day. My son vomits occasionally at night.

I should mention that he's ALWAYS been sensitive to light. He was a very good baby and rarely cried or fussed, but put him in the car and he would howl and cover his eyes until we blocked out the sun.

When I was diagnosed last month, my doctor said he didn't know how much hope to offer me (loved him as a doc but didn't listen to that). However, he said he was going to use the Marshall protocol as he was having very good luck using it with late stage patients. I had heard it mentioned in a support group email a week before my appt. I didn't know anything about how it worked or what was involved. I just said yes, whatever you think is best. I am using the MP and it is working for me. No one would prescribe the MP for a child and I'm not referring to it to promote it. I'm referring to it only because the Vitamin D in milk (I assume) is a trigger to my son. Sunlight is a trigger to both of us. Last summer my son broke out in a rash all over his body from being in the sun. The (not very bright) UIHC initially said they thought he had parvovirus. They called 2 days later and said they were rethinking their parvovirus theory, but didn't offer another one. Go figure! http://my-son.notlong.com He has always been heat intolerant and avoids the sun. It just wears him out (me too).

Almost every doctor I saw for 20 years initially thought I had lupus. Some things about my son (and me) are coming to light (no pun intended) as I type. I feel kind of . . . stupid? because I didn't make the connection until now. I've been on the MP since July 27 so your reply helped me with some more puzzle pieces!

I'll let you know what happens when we get back from MO. In the meantime, take care of yourself and your little ones. You really did help me without even knowing it. Thank you!

Thank you for your prayers. My faith in the Lord is the only explanation as to why I'm still around. If you knew how many times my faith was the only thing preventing me from doing myself in . . . .

Against all humanly odds, I'm still here. I have lost family, friends and many things in my lifetime. I have recently discovered I have gained more than I've lost. Now I have a purpose.

Sorry I didnt return your email, I didnt know who you were until now when I checked the board.

My son was never officially given the diagnosis of PDD, but he was given the diagnosis of Mental Retardation, Autism , developmental delay, etc. he wasnt given the diagnosis of anything that would progress, but what could get better over time.

I knew IMMEDIATELY when they handed him to me that there was something wrong. He just wasnt
"there" in his eyes. He couldnt follow me, I dont know, just in his own world. He couldnt suck out of a bottle ( no muscle tone)

and the child starved, I swear. His formula literally flowed out of his mouth, I had to hold TOWELS under him instead of "burpy towels".

He had to have surgery for his eyes ( strabismus) , poor muscle control in there, and I just went through so much with him taking him here, running him there.

It wasnt until he was 16 months darn old that is pediatrician finally agreed there was someting wrong. Really? He still couldnt sit up, was making no sounds, SCREAMED CONSTANTLY ( VERY indicitative of something neurological going on) , he had infantile acne, his stomach swelled constantly ( lots of food allergies). he was just MISERABLE. Lets not forget to mention the 10000 ear infections

he had and the three sets of tubes he needed in his ears- until they figured out that yeast was in his blood and once they treated that, his ear infections have NOT come back.

He has a mix of lyme, babesia and the same strain of yeast mommy has that is linked to autism ( candida arabinose). I did the GFCF diet on him for a while

but I got him having some severe die off and was scared that some idiot duck was going to call child services on me for not feeding my kid handfuls of garbage, and doing this on my own.

If you have more suggestions, you can ask. Richy though was not diagnosed with PDD, just other garbage basket diagnosises one right after the other.

I once asked them "how can a child that is mentally retarded " do the following"

Richy put that in the trash, then put the milk in the fridge, and then come here, But NOT be able to say a freaking word.

Ridiculous.

So glad to know that you lean on the Lord for support. He has taken me through many adversities and will take us through this as well.

SC is my daughter. Both my children, 3 grandchildren, son-in-law and I have Lyme. We don't really know how long we have been infected. Your son's battle with Lyme does sound so similar to that of my grandson.

May God richly bless you & your son. By the way, Dr. C is a christian. I feel really fortunate to have a knowledgeable, christian doctor. He was the answer to a prayer.

sorry I missed your phone cal...you can call me at work you know.

Kent

Glad to see that my post was of some help to you. Your post realy helped to put a lot of pieces together for me.

The way you described your son's vomiting and sleeping you could have been talking about my son.

When he would suddenly start vomiting we just thought he must have gotten something with milk at church or somewhere.

I never thought his "milk allergy" could be anything more than that. We too went to great lengths to eliminate all milk from his diet. I even eliminated it from my diet until he was weaned.

Also what you said about your son craving milk. My son could live on milk alone! We have to limit him and bribe him to drink other thinks. He is the same way with cheese.

You stated that the kindergarten teacher could tell when he had milk. How did it affect him? We let our little guy have dairy regularly now so I am not sure if it has any affect on him.

Another thing you mentioned in your first post was worrying about school. We have decided to homeschool our children.

This year we are doing kindergarten with our 5 year old and letting our 3 year old work along.

We chose homeschool for various reasons before the kids were diagnosed. I think this will be very beneficial for those days when he just does not feel like going to school. We can make it up on a Saturday or maybe do extra work on the good days if needed.

It will be much easier than explaining to a school that he will not be in attendance that day because he just does not feel like it or he has brain fog and can't concentrate today.

I know this may not be an option for you but if it is I would highly recommend it.

Thanks for sharing the picture of your son. He is adorable!

SC

Both kids born with it. My daughter is now 7. My son 9. I am happy to take calls from new "Congenital Lyme" Moms. I can tell you what to expect - at least a lot of it.

Dr. J cured my daughter. It took about 4 years of orals - but cured now.

My son, who is mildly autistic - was almost cured after 4 1/2 years of orals. But DYFS (Division of Youth & Family Services in NJ) have decided it is better to say "chronic Lyme" doesn't exist - so my son is regressing into a moderately severe autistic state. Sorry for blurting this out in self-pity! But, my insurance company has paid every penny of my kids Lyme treatment, they weren't complaining, my son was almost cured, and now "I can't treat him". They said, "My son just has severe psychiatric disorders".

Anyway, I can answer some questions for you. Email me or call me, Congenital Lyme Moms, for some good tips and answers. Send me an email first if you wish.

I am so sorry for the problems that you are having with DYFS. How can this be happening?

Your child deserves to have adequate treatment, and the DYFS should be out trying to protect the children that are being abused rather than interfering where the parents are fighting for adequate care. My heart goes out to you, your family, and your little one.

As long as we, lyme patients, sit back and take what they dish out, this will continue. (I am not implying that is what you are doing. I know there is strength in numbers and a single voice crying in the wildenerness goes unheard).

As the old cliche' goes, "the squeaking wheel gets the grease." That would more accurately read, "the squeaking WHEELS get the grease."

The Lyme community must unite and make our voices heard.