sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
has anyone here seen/had a young child with acid reflux?
we had to rush my 4 year to the ER last night- he was in unbearable pain, but couldn't articulate where it hurt.
a nurse came out to the waitign room to give him tylenol or whatever. 20 minutes later he seemed vastly better. He said about the medicine " it really worked, mommy, i can talk again. my throat is just a little bit clutched up now"
he has said on and off that he has 'stinky breath" after he eats, he largely avoids anything acidic, he tries to describe what seems to be pain from his throat down that definitely seems related to eating.
I've had plenty of acid reflux episodes since Lyme, and that sure is what it sounds like to me. He definitely did have acid reflux for several months when he was an infant. I had fight his ped to try meds, since he was serenely positive that my son "just had colic."
The ped on call last night told me on the phone there was no way that the pain she was hearing could be caused by acid reflux.
?????? I don't agree, but see that i may have another DR struggle on my hands.
Any thoughts?
thanks- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I had acid reflux as a child until adulthood. It is very painful! It did go away for me when I began treating yeast. I took caprylic acid and acidophilus a year before lyme treatment.
I would try large amounts of refrigerated acidophilus & coconut oil(1/4 of a teaspoon, pills are probably too large).
My opinion........ Bb kills the immune system, which then upsets the balance of good bacteria in the stomach and digestive tract, which causes acid reflux. The only thing that made mine get better (and is now completely gone) is treating yeast, and watching diet.
But the foods that used to set it off don't any more as long as my yeast is in check. I can drink coffee and eat tomatoes and other acidic things now as long as I don't have sugar or flour or too many carbs.
As a child I had symptoms of lyme but know one knew at that time. Just little things like shin pain, poor concentration, being shy, (I couldn't talk to people.) constipation and acid reflux.
Six--- There are some symptoms out there that are not on the symptom list that have gotten better for me, and my kids, things like OCD. I guess what I'm saying is, Bb can do more then give you arthitis and headaches. (As I'm sure you know) Sometimes it can be more pychological. And some I always thought were "normal" until they were gone.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
I belong to several Celiac Disease email lists, and I do see from time to time that someone will post about a very young child with reflux that may have some correlation to eating gluten (wheat, oats, rye, barley). Just a thought.
Also, many people with Lyme are also sensitive or intolerant to gluten, so there can be some overlapping of causes.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
replying in backwards order- i think.
Jill, thanks for offering another possibility. I'm pretty sure gluten is not the culprit here.
My little guy has always been a starch fiend. without parental intervention he would live on toast/bread and crackers and mac and cheese, and oatmeal. maybe a banana a week. he has always liked yoghurt. For weeks at a stretch, the above is all that he WOULD eat, and he was fine ( i think?)
Oh, and he has an INTENSE craving for sweets- way more than the love of sugary things friends his age all share.
momof 6- i think tomato sauce was a large part of what happened last night. he has always refused to eat anything with tomatoes- says its too "spicy." last night he had cheese pizza and a salad (that was very unusual) and a huge glass of blueberry smoothie (it had lots of citrus juices in it too)-it was the first time he had actually consented to try one of my smoothies,and he loved it.
45 minutes later he went into the pain zone. (lesson for dilly: kids' bodies are smart- listen to what they're saying).
Lise- i'm glad you learned how to control the reflux. it really is miserable stuff. and i wonder too about the subtle symptoms you mention. so difficult to know for sure, which is part of a parent's problem for sure.
if my son has Lyme, he would have contracted it in utero, or through 3 1/2 years of breastfeeding. he would have had it literally his whole life and not know anything different, so how could he possibly know or explain symptoms?
he is reading fluently at 4 and can count to a thousand. i see him in preschool and he looks more tired than anyone else and yawns a lot, even though he has slept for 9 or 10 hours. He'll never say he's tired, but then, that's a kid for you.
he doesn't have body pain- i don't think- but he is so sensitive to other kids' opinions of him that when he thinks a friend doesn't like him, he'll go in a tail spin for DAYS.
He is afraid of loud noises. He does NOT like bright light. He has odd fears - including of cars, even when he is safely on the front porch he will duck when one goes by.
the scale of whether or not he has active Lyme tips for me one way and then another. but whatever happened last night that had us racing to the ER sure puts a lot of weight onto the side of the scale that says ummm.. something sure is not right here...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Lisi, thank you for the advice. Oddly enough, arthritis and headaches are not my primary symptoms, which could be why I went undiagnosed for so long.
I just don't know what to do about the kids ... various ones show various symptoms and they have all had ticks in addition to being exposed through me ... only one has symptoms that cause any real trouble and I'm taking her to my LLMD next week ... as far as the others ... to treat or not to treat???
Sometimes it's hard to figure out what to do.
Dilly, I guess we're in the same boat on this one.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Dilly - my youngest child was dx with gastric reflux after having gastric dumping tests done at a children's hospital. They put him on Prevacid which he took for a month or so.
In the meantime, his tests had come back from Igenex and he was lyme+ along with everyone else in my family. I started making kefir from real grains and my youngest really likes it.
After a few weeks of drinking kefir, our doctor told me to either give him the kefir or the prevacid but not both - so I stopped the prevacid. Its been well over a year and he has been fine with the reflux.
When he had reflux he would get up at night crying and grabbing at his chest and throat. It was very scary for him and us. For him, reflux has been a symptom of LD.
Dilly and Six - Its really hard when kids are involved because they are, in general, very resilent and don't express health problems well. We only get an idea that something is wrong when it gets to the point we can observe it or it becomes a medical emergency.
My husband and I agree, that if I wouldn't have been bitten we may have never come to know that the rest of our family had lyme disease and coinfections.
elle
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Elle-
thanks for your input. why did the doc ask you to choose between kefir and his med??
plus six: it does sound we're in the same boat. hope you don't run into too many rapids on your ride...
i figure even if my DS does have Lyme, we'll survive. He will and I will too. My husband is my maion source of inspiration.
He developed leukemia in his 40's. He had a 5% chance of surviving. every person he was in the hospital with who had the same form of leukemia died within 2 years of disease onset.
he NEVER considered the possibility of dying, even when he came within inches several times. and slowly but surely he kept on living and now is all the way back.
i've felt a lot of things since Lyme, but never self-pity. And if our son has it too, that's just one more battle to fight and win...
dilly
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Beverly
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Member # 1271
posted
Hi sometimesdilly,
I hope your son feels better.
This is from the leading pediatric lyme specialist....
The Children of Lyme Disease Dr. J., MD Pediatrician, Private Practice, New Haven, CT
Current research indicates that the Lyme disease bacteria, Borrelia burgdorferi, can be transmitted within hours after an infected tick attachment. Failure of parents and teachers to recognize Lyme disease early in its course can result in a child developing a chronic difficult to treat infection in the brain, eyes, joints, heart and elsewhere in the body.
In my experience treating 7,000+ children birth to 18 with Lyme disease, 50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school.
They are tired, wilt easily, have dark circles under their eyes and are sick. Lyme disease has a profound negative impact on a child's life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work.
Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease.
Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.
Although Lyme is usually transmitted by Ixodes scapularis (deer) and Amblyomma americanum (lone star) ticks, it can also be transmitted in utero and through breast milk. These children, frequently floppy with poor muscle tone, are irritable and ill early in their lives with frequent fevers, increased incidence of ear and throat infections, pneumonia, joint and body pain. They have gastroesophageal reflux, small windpipes (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities, and psychiatric problems.
All respond to months or years of continuous antibiotic therapy.
When Lyme disease is a possible diagnosis, the children should be evaluated by a Lyme knowledgeable physician who will continue antibiotic therapy until all Lyme symptoms resolve. In most circumstances, Ixodes scapularis tick attachment should be treated with one month of antibiotic therapy.
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dilly you said .. "Oh, and he has an INTENSE craving for sweets- way more than the love of sugary things friends his age all share."
Get him off sugar, yeast and flour and see if he gets better. Sweets will make the acid reflux worse. Get him to take acidophilus & coconut oil. This will help relieve the sugar cravings.
My son used to eat a candy bar every morning for breakfast (before work) I gave him caprylic acid(an ingrediant in coconut oil) one night before he went to bed, and the next day he came home from work amazed that he walked right by the candy isle and bought beef jerky. He said "The candy just looked gross to me"
(Oh, BTW he had severe acid reflux and doesn't anymore.)
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi dilly,
I am sorry to hear about your son's visit to the ER, glad to hear that he felt better soon after tylenol.
Sounds like you got some great advice here. The kefir sounds promising, and perhaps the reason why elle's doc told her to chose between kefir and anti-reflux meds (prevacid) is because they interact, or cancel each other out? Don't know.
I remember one poster here recommended pine nut oil for acid reflux, and then another lymenetter said she tried it with great results.
I remembered it because my husband has awful reflux, and it has been on my list to buy and try for a long time (will get around to it soon!)
Here is that post, below, from about 7 months ago, in case it helps. When I try it I will let you know! Hope your little one continues to feel well!
From llama warrior last year:
I had SEVERE GERD, for several years. I was in my 20s, and had not yet been made aware that I had late-stage Lyme.
Fast forward: I had and was healed of severe Lyme, but the acid reflux disease remained.
I bought this stuff and tried it, thinking I had nothing to lose. Within like 5 days, my reflux was GONE.
Its been a few months now, and Im off all meds. I had been on my 4th med, had had 2 endocsopies by the age of 30, and was ready to get surgery to get rid of this nasty problem.
I do not work for these people! I am just sharing somethiing that really, really worked for me! I was so glad! I was preparing for surgery, at the age of (at that time) 31.
Now I can drink a can of tomato soup and still not get the reflux. Its GREAT!
Tbe stuff was costing me around $25-$30 a month, for a month's supply, but man was it worth it.
I just wanted to post this here, for all those who also suffer as I did with the darned GERD nightmare.
-llamawarrior
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posted
Dilly, sounds like you have a great attitude ... I feel the same way.
I guess after we have this child tested we will better be able to decide what to do with the others. My LLMD said that if they're having no symptoms, then there is no need for testing ... but as was mentioned here, I was that resilient child ... there's just no clear answer.
My two older teenagers don't even want to be tested ... I guess there's no sense in testing them if they won't comply with the treatment anyway.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wanted to add that I had both of my children tested...
My five year old who is pretty symptomatic...
My four year old who does complain of a sore throat every once in a while
As well as some joint pain once or twice.
Daughter had positive results via Igenex...
Just received son's results...not good.
I tested them to make sure I wasn't missing anything.
I don't want them to have this become a chronic issue for them.....
They have a chance to beat this....cure vs. remission.
I say, if you can afford it, test your children.
My neighbor's son was one band shy of CDC positive both IgM and IgG.
He complains only of occasional headaches but does have lots of sinus issues.
Why take a chance?
Although I am overwhelmed right now with the idea my whole family,
Husband, children and myself with Lyme...
I will never regret testing them....although I was praying for different results.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I agree with all the above posts about the possibility of the pain being acid reflux, and the possible causes.
In addition, reflux can sometimes be a result of compression to the cervical spine during the birth process. When this is the case, it almost always comes in conjunction with chronic ear infections.
This condition can be corrected by a skilled cranio sacral therapist who has training and experience with pediatrics. I have sucessfully treated this condition many times in children.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Beverly-
thanks for your reply. I've read through that information before, but what i see is not black and white like what is listed there but gray.
my son started walking at 9 months, is reading at 4. no developmental delays, no baggy eyes, no difficulty concentrating, and was born with his eyes wide open and they've stayed wide. just little things, and a deep down instinct on my part that something is wrong.
not shrieking panic-time wrong, just... i see a young boy who used to be completely secure and extraodinarily happy turning slowly into someone who is neither. maybe it is because i am so sick and he is very aware and sensitive to that? or maybe because he is sick and getting sicker? Just impossible to know when kids are this young and the person trying to figure it out is so compromised mentally.
bejoy- thanks. two questions- would i have known about spine compression problem during birth? i don;t remember if i said this already, but the birth of my son was fast and "easy." no medical intervention of any kind was required. i think i pushed for all of 20-30 minutes.
my son HAS had multiple ear infection, though. i have asked his ped more than once- is this normal? and the answer has been yes.
he's 4 and has had 4-5 ear infections severe enough to warrant abx. given that he was breastfed for so long, i have thought his early succeptibility to ear infections was unusual ( the 1st came at about 1 year old, when 90-95 percent of his diet was breastmilk).
geneal-
i have a script from my son's ped to go get his blood drawn and sent to Ignenex. My son's pediatrician - so very excellent in every other respect, does not believe whatsoever that my son has Lyme. he is a Johns Hopkins med school graduate who has 100% faith in Johns Hopkins infectious disease specialists.
if he weren't such a great ped to my son i would dump him. he is also very sympathetic to me, even believes i have chronic Lyme, but just does NOT believe my son could have contracted it in utero, much less through breastmilk. trying to wrestle with everything to figure out what is real and what is understandable fear is difficult enough, eh? even without having to fight through neurolyme fog to do so, please be kind to yourself...
i am babbling. very tired and herxing. what i'm trying to say is that based on what i've thought to be the best advice available (dr. F), i have not believed in having him treated unless he is symptomatic,and it will be impossible to convince anyone where i am that he IS symptomatic even if that becomes clearer than it is right now.
Vermont- i can't remember what you wrote, only that as usual, you've been there for me. Thank you so much for that- til June....
dilly
[ 18. May 2007, 01:08 AM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
quoting dilly,
He is afraid of loud noises. He does NOT like bright light. He has odd fears - including of cars, even when he is safely on the front porch he will duck when one goes by.
dilly, my worst problems of lyme have been lights, glare, reflections, and loud noises/sounds!
how about a pair o NOIR, no infra red sunglasses for his painful eyes.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.
I wanted to give some insight on what I went through with my twin sons when they were born..... (I did not know they had lyme , nor I either)
They were born 5 weeks early, and were ok, they left the hospital on their due date. I took them to all their doctor visits, and the doctors were not concerned about anything.... they were growing basically normally(just smaller then most). They walked at 11- 12 months which was normal, they talked at the right time. So I didn't have any great concerns, but there was always something I felt wasn't right.
As they grew I would notice things that I thought were not normal.... Things like shyness, no awareness of their surroundings, and they used to rock together and hum (all the time) it was almost like they were mildly autistic. (at age 2-4)
At age 5 I decided to homeschool them, because I felt they were not like other kids. (innocence, I used to call it)
They never had the dark circle under their eyes or walked on their tip toes(like most kids with lyme) I don't remember if their ears turned red though. But they were afraid of loud noises and cover their ears. They would be aslo deathly afraid of bees and other flying insects.
As they got older maybe 10, they didn't learn as quickly as other kids, but we took it slow.. One of the twins had a very difficult time in math.
I got them into karate and they were ok, but complained of some joint pain, I thought the instructor just worked them too hard. But other things were happening that I thought were not normal.....
They both developed OCD, one of them would wash his hands non stop, if he touched the frig door he would have to wash his hands. The other twin would not go into a store and pay for anything, or order food at a fast food place.
The other thing that I thought was not normal... They both would baricade the bathroom door when they used the toilet. I would ask them why, and they would say "I think someone can see me".
Neither of them could be around strangers, or answer the phone.
As they got even older (16) they didn't want to drive a car or leave the house.
When they were 18, things finally changed for the better!!! I found out I had lyme, and started looking at all thier symptoms differently. I had them tested and they were both positive!
They have been on abx for almost 3 years now, and they are different people.
One of the twins will sing on stage in front of people(when he was younger he wouldn't even tell me if he liked music) The changes in them are astonishing.
I just wish I would have caught this disease earlier, so they didn't have to suffer as much growing up.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi again,
Well lots of great information and suggestions above, that is Lymenet for you. I hope something helps your child.
My son was born sick, he did have developmental delay in certain areas, he walked at about 12 months which was normal, but always on his tip toes. He did not speak unitl later and when he did talk no one could understand him.
He was always very irritable, he had jaundice at birth, eczema, heat intolerance, croup, fevers and had autistic behaviors. Then he was bit again in 2001.
After he was bit he had blood and mucus in his stools, he developed a heart murmur and had to see a pediatric cardiologist, he was in alot of pain, leg pain, joint pain and headaches, insomnia, poor appettie, could not read until age 9, severe fatigue, high anxiety, eye problems, noise and light sensitivity, auditory hallucinations, mood swings, and low frustration level/attention span.
He also had vomiting spells, but my son only vomited with a headache. He frequently told me his chest hurt, but I figured out it was his heart murmur that got much better with treatment.
I would like to add that my son is almost 90% better with treatment, he is not the same child, thanks to Dr. Jones.
I hope you find something that helps your child, keep us posted.
[ 18. May 2007, 07:25 PM: Message edited by: Beverly ]
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Beverly- Thanks again. I'm sorry to hear how much your son suffered before getting better. I cannot imagine how difficult it was for both of you.
Your son's story reminds me how fortunate we are that my son does not seem to be in pain. It also makes me focus on the fact that the flip side of the subtlety of his possible symptoms hopefully means that if he does have Lyme, he has a good chance of healing completely.
Betty- thanks for the sunglasses suggestion. I'll check into whether or not they have for young children. The sun in the eyes thing is huge for him- especially in the car when he can't escape it since he's so buckled up and in.
Lisi- I'm incredibly grateful for the time you keep taking to help. Your last message, about your twins' experience, resonated all the way through for me. And, hearing that account, my husband heard symptoms that are so like what our son is experiencing that for the first time, he really believes our guy may have Lyme. He's an incredibly supportive husband, but he clearly has thought all along that i am too worried. Not any more.
Now that he is 100% convinced of the need for Ignenex testing, the testing WILL get done, even if I start to zig and zag and duck, which is what i've done in the past.
Monday. Blood draw.
hugs to you all, dilly
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