posted
I have a 4 and 5 year old who have had Lyme and co-infections for the past 2.5 years. They started antibiotics around 4 months after being infected and are still on loads of medication. I'm writing because I need some help creating two different lists: 1) A list of possible future problems either child may have (as it is my son lost all of his speech when he got infected at age two and has been in speech therapy 5x/wk -- we are playing the waiting game to see about other developmental delays). The list should include problems that are small, like diarrhea or big like kidney damage or severe allergic reactions to a drug or developmental delays. As sobering as this will be to read, it is important. 2) The second list is of possible future expenses. Everything from obvious ones like lab work, doc appts, speech therapy etc., to more obscure ones like the cost of eating gluten free, possible tutoring, possible long-term problems that lead to spending money, etc.
If you all could simply tell me what you have been dealing with (or resources where I might find this information) and costs I may not be expecting, I would really appreciate it.
posted
I don't know that anyone can really answer your questions. With Lyme and Co. (other infections) there is just NO way to predict what is going to be down the road. It could be every bit of what you used as examples (and just about anything/everything else that *could* go wrong or be a problem).... or it could be nothing at all.
I think pretty much any and all medical, physchiatric, mental, emotional, developmental, behavioral, learning, speech, etc problem or delay or symptom *could* potentially be a result of Lyme and associated diseases.
So really, the list is already out there. The list is simply EVERYTHING and/or ANYTHING. I don't think anyone could possibly list every single potential problem or cost that *could* come up in the future.
And while this is true for everyone, whether they have Lyme or not, I don't think you can even say "ok, but the most likely suspects would be..." for Lyme. It's just too unpredictable.
Personally, I am a congenital Lyme patient, as are my 11 and 12 yo kids, and we have encountered every single thing you mentioned, with the exception of eating gluten-free, and more. While we didn't have (thus far) to deal with a gluten-free diet, at one point I had to fix 3 seperate meals at once, and occasionally 4, to accomodate all the different restrictions necessary.
My kids have had to have growth hormone replaced...ADHD meds...anti-pyschotic meds...asthma meds... They have dealt with severe, chronic diarrhea, weight loss, failure to thrive, frequent eye infections, numbness, tingling, memory issues, auditory processing issues, extreme anxiety, extreme rage...
We just buried my grandmother. She had a VERY odd and unexpected reaction to ONE DOSE of a blood pressure medicine which ended up killing her kidneys. She was dead within 48hr of taking that tiny little pill. My mother and I feel that the infections she likely carried (specifically LYME and associated infections) were responsible for the strange response to the medication.
Thing is we believe my GRANDMOTHER was born with Lyme as well. This is based on several different reasons. Suffice it to say there is sufficient evidence to believe it is highly probably that she was infected at least since a child.
I tell you that because, if I extend out beyond myself and my children, we find even more problems and issues. My grandmother had 10 pregnancies...six live births (the other 4, we believe were victims of Lyme miscarriages/stillbirths). In order to not lose those six children, she had to take shots (I don't know what of) every day while she was pregnant. Of course that didn't guarantee anything. I believe at least one of the 4 lost pregnancies she received the same medication.
Those 6 kids went on to have 16 grandkids, and of those 16 grandkids, there are now 16 (and one in the oven) great-grandkids. Within this relatively small group of people (albeit all related) we have pretty much covered the entire gamut of health problems.
You mentioned kidney damage. Absolutely. One of my uncles had to have a kidney transplant just last year. Docs "have no idea" why his one kidney was basically useless before birth and then the other cratered... they have no explanation. He just went in for a physical a couple of years ago and found out he was in severe kidney failure, started dialysis, and got put on the transplant list. BOOM, out of the blue.
Still on the kidneys, my mother, unlike her little brother, has known since she was a child that she has "kidney problems". She suffered from a bout of severe "inexplicable" kidney disease as a kid and has had problems with them trying to shut down periodically ever since. She (so far) has always managed to get them working again by using brewers yeast, but they are definitely damaged.
We also have lots of thyroid issues in this "Lymed" family. Lots of skin conditions...strange reactions to sunlight or hot water (swelling or hives). Lots of 'mysterious' chronic back pain, or knee pain, or fill-in-the-blank pain. Partial paralysis in a few people for periods of time...with my mother following an antibiotic injection!
Bell's Palsy, extreme mood swings, fake memories...yes, fake memories. At least two members of this (BIG, btw) Lyme family have what they honestly believe to be memories...they truly believe they are remembering... of things that never happened. Verified by the rest of the family.
Curious swollen glands, strange moles. Difficulties in learning altogether, dyslexia, difficulties in learning in one particular area... problems with fface recognition, problems with spatial relationships (knowing where you are in proximity to other things)... ear-ringing, loss of vision, continuously watering eyes, hiccups that last HOURS, seizures, extreme and very ODD reactions to medications...reactions that "just never happen...this med doesn't cause that"...
excessive scarring, to the point of literally binding intestines together with bands of scar tissue... paralysis of the gastrointestinal system... stiffening of the fascia (hard to explain, but basically a membrane that exists between your skin and all your 'innerds') to the extent that it could not be brought back together to be stitched back up after surgery...
bleeding problems, blood clots, weak blood vessels, varicose veins, bundles of veins that shouldn't be there!
Heart arrythmias, tachycardia, heart attacks, heart failure (with no known cause), leaky valves, hypercoagulation (basically what I call 'pudding blood')...
childhood arthritis severe enough to keep the kid from being able to walk, nightmares, hearing and smelling things that aren't there (auditory and olfactory hallucinations, migraine headaches, persistent headaches (I'm talking months and YEARS long headaches, here...completely unresponsive to even narcotics)...
deficiencies requiring supplementation in various vitamins and minerals that "shouldn't" be a problem... cramping that can not be controlled even with meds... extreme resistance to meds such that people have actually been cognizant during surgery or 'sedation', though no one knew at the time because they were also paralyzed. (it figures the paralyzing meds would work, but not the anethesizing/sedating ones...)
balance problems, horrible fatigue of course, problems walking because of problems with either the nervous system or the inner ear or with the legs...muscles/joint/bone pain...
frequent ear infections (a cousin of mine had such problems with this as an infant and was on antibiotics so much, she became deaf. Whether it was a case of "just too much" or a reaction to just one of the meds, we don't know)
skeletal deformities... I have a brother with kyphosis. That's like scoliosis only the curvature is from front to back instead of side to side.
WAY too many mysterious skin reactions and rashes to even begin to think about... all 3 of my younger brothers have the bartonella stretch marks, for a start...
fevers, vomiting in cycles (like for 2 days every 4wks, for example), low bone density and so thus higher chance for fractures...
frequent nosebleeds, gall bladder problems, need for ostomies (that I *know* of at least one colostomy and one ileostomy)... liver problems/illnesses with no known cause... nightsweats, chills (these likely due to babesiosis), inability to regulate body temperature (which can/has caused hypo- and hyper- thermia in our family)...
We have had quite a number of boys born with their tongues 'tied down' severely enough to impair their ability to even nurse! We've had one boy (one of the tongue-tied, incidentally) born with absolutely NO gag reflex. It is simply a miracle that he survived the first 2yr! (This happens to be my youngest brother...one of us older kids or mom or dad had to perform the Heimlich on him as an infant up to 10+ times a day at times!)
The girls... well, there's not many of us compared to the boys, but more than half of us have had severe difficulties with either fertility, pregnancy, or breastfeeding... also other 'female' problems.
extra expenses to accodomate supplements, dr visits, testing, treatment of associated problems and injuries (like the broken bones...I know one little girl with Lyme who in one year broke a toe, a foot, a finger, an arm, and her back...all in situations that "should not have caused a fracture"
expenses for private tutors, for rehabilitative equipment and medical supplies (everything from needles to wheelchairs, shower seats to orthopedic shoes), step stools and other 'height-challenged' aids, and quite possibly (we'll know in another 6mo when my daughter has 'run out of growing time') special accomodations in order to be able to drive safely!
I could keep going, but I think you probably have the idea by now. =) Really all you can do is seek and obtain the best treatment you can possibly find and afford and then handle problems and expenses as they come along. They will come, and they will be unexpected. That's just the nature of this beast we are all fighting. =(
Posts: 155 | From Texas | Registered: Oct 2007
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posted
oh, and I suppose since I thought of them, I should also mention severely low blood pressure, 'backwards' blood pressure (I forget the actual term), black-outs/fainting episodes, and a couple of family members have been standing up just fine one minute and literally with no warning fall completely backwards, flat on their back, with no idea what happened...
Posts: 155 | From Texas | Registered: Oct 2007
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Rami, Children with developmental delay often need more than just a gluten free diet. Often, they also need a casein free diet -- ie, free of milk products. This is not the same problem as lactose intolerance -- ie, the lack of digestive enzymes for the milk sugar, lactose -- which is better known than casein intolerance. Instead, casein is the protein found in milk and milk products.
The reason is that casein is a small protein molecule which can cause an opiod-like reaction in the brain, just as gluten can do, in these children.
While your son's problems might not be classified as strict autism, they might fit in with the classification of "autistic spectrum disorder" (ASD). If you do a search for autism and ASD, you can find lots of info about dietary advice.
There are a lot of resources out there about diets which omit both milk and gluten. For example, "Cooking for Isaiah" by Silvana Nardone is a new book on the market which is available at a discount price at Sam's Club right now or through Amazon. There are many other similar allergy free resources available on the internet also.
I have described under another topic how Lyme can set one up for gluten intolerance, especially if there is a genetic predisposition for celiac, which occurs in 40% of the American population. Here's the link to one of those posts so that I don't have to copy the same material again here. (Scroll down to find my two posts under that topic.)
In a somewhat different direction related to pediatric Lyme, you might be interested in one of the talks at the recent ILADS conference given by an ILADS pediatrician, Dr. A.C. Here's the link to how you can obtain a copy of that talk if you are interested. It was the next to last talk in the list for Friday, at the link below. (BTW, in her talk, she mentions the need for a gluten free diet also although I don't recall if she said anything about similar problems with casein.)
You can count your blessings that you live in California where there are a number of excellent LLMDs who are free to treat according to ILADS guidelines. You would be in a "mell of a hess" if you lived in a different state where physicians are persecuted by their state medical boards for treating Lyme aggressively. That fact alone means that your children's chances for a complete recovery are much better than they would be otherwise. So try not to dwell too much on the negative aspects of things and try to concentrate instead on the possibility of a successful outcome with adequate therapy for all of the co-infections which can accompany Lyme disease.
Some of the horror stories that you'll run into (examples posted above) don't have to happen anymore nowadays if you seek help from a really good LLMD. Our daughter's case is a prime example. She contracted Lyme in early childhood at age 8 before anyone knew anything about Lyme. It took 25 years to be diagnosed and another 10 years to recognize the co-infections and to treat those adequately, but she is fully recovered now, at long last.
Miracles are indeed possible, so try not to despair. Instead, focus on a positive outcome, and try to avoid fear-based thinking which can sink your boat. Stay positive and pro-active. Your children are lucky to have you as their mom.
Posts: 4563 | From TX | Registered: Sep 2002
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Have you purchased the Lyme Times Children's Edition yet?
I lost mine and haven't bought another one, so I can't refer back to it now, but as I recall, it was chock full of great information. It is a special edition of their publication, and you can buy just that issue.
Have your children seen any progress yet from antibiotics? With 2 1/2 years of treatment, my guess is that by now, they should at least be seeing progress. If not, you may need to evaluate why exactly antibiotics aren't helping. So it may be time to take a step back, mix some things up, etc. Only your LLMD could give you advise on that.
I don't have children, so I can't advise too much. I have heard that children with "Lyme-induced autism," meaning children that actually have symptoms caused by infection, generally do make eye contact, while children who have regular autism, generally will not make eye contact. I heard that in a speech by the pediatrican Dr. J, on Youtube.
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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