seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have a 6 yr old daughter that was generally pretty health except for a few issues. She has unexplained chronic constipation almost since birth. She has been through ENDLESS tests (colonoscopy, barium enema, rectal biopsy, anal manometry, and more). All NORMAL. Still not bowel potty trained. Says she can't 'feel' it coming out, but all tests show she has normal nerve sensations.
Also has a very minor Atrial Septal Defect. She sees a cardiologist and all is fine. No surgery needed. No enlarging of the hole in the heart.
Also was born with hypotonia - low muscle tone - not severe, but she was delayed with her gross motor skill and fine motor skill development. She first walked at 20 months. She has always made forward progress with most things except potty training, but definitely behind her peers.
Also she gets very frustrated easily. Kind of immature I believe.
Well, now the last week all hell has broken loose. She has had to stay home from school the last 2 days due to severe fatigue. She's having scary episodes.
She will say out of nowhere her stomach hurts or 'feels funny' and she is shaking. I can't see it happening. She also says during these episodes her feet or legs are cold. They don't feel cold to my touch. She'll instantly get extremely sleepy and has went from totally normal to dead sleep in 30 sec - 1 min. She sleeps for an hour and then seems OK. These are happening 1-2x a day.
I'm very concerned. My life is ruined by my illness. She was extremely happy and energetic. What the hell could happen in a week. Docs have run flu swab, CBC, CMP, Uric Acid, CRP, thyroid, ultrasound of abdomen, abdominal x-rays - all totally normal. No fever, no ear infection, no sore throat. DAMN, this sounds familiar. All normal with me too constantly.
I feel like taking my head and just pounding it on a brick wall. I'm fed up. Can't take anymore bad stuff. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
hope you get some answers. Prayers for your little one.
Posts: 707 | From Colorado | Registered: Jul 2010
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kidsgotlyme
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Member # 23691
posted
I'm so sorry seek. It sure sounds like something is very wrong and probably has been for a while.
Were you sick when she was conceived? Just thinking out loud here. Could she have congenital lyme?
Praying for your family.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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glm1111
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Seek,
I am soooo sorry to hear this about your daughter.
Within the past year, my grandaughter, became very fatigued chronically after not recovering from a virus that my other 2 grandchildren had and recovered from just fine. The faitgue was bad enough to keep her out of school.
My daughter-in law put her on a gluten free diet and although it took several mos, the reports I get are she is just fine and back at school.
My DIL is very familiar with Lyme, but for some reason didn't get her tested to the best of my knowledge.
I have suspected she had Lyme yrs ago because of a lazy eye and some other symptoms. I had to muzzle myself from saying she might have parasites,
At any rate, maybe your daughter is allergic to gluten, or something else and an elimination diet might be worth a shot...
Just an added thought because you know I can't help myself....has she been tested for parasites?
Anyway, just throwing out some thoughts for you. I am sure this has to be so upsetting to say the least.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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karenl
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Seek,
so sorry but have again to ask the mold question. It must be something what makes you sick and also the child and this is since many years.
Maybe you better move before your wife gets sick - you have elevated mold levels. Also you could do a urine test for mold at a Texas lab. Elaine just had a serious mold issue and did testing, pm her for the testing.
If you do not want this test then do the S test. Blood can be drawn at your doc and sent in, then your doc can talk to S.
Gael is right, parasite treatment never hurts anybody. After some days you know if you have them because you would react to f.e. humaworm. Just get started.
Then there are the labs which test for viruses.
You need to get a plan.
Hope so much you find help.
Posts: 1834 | From US | Registered: Oct 2008
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jackie51
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posted
I am so sorry for you and your daughter. My 8 yr old has the chronic constipation. While she isn't sensitive to gluten, at least not yet, she can not do artificial colors, hfcs or artificial sweeteners.
Remember these diseases hit the kids very differently and they also get the stuff that is running around the schools. Some of this stuff we don't get. Be sure she gets a strep titer and maybe she even needs a mono test. Sounds like she has the 3 B's.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Carol in PA
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posted
She will say out of nowhere her stomach hurts or 'feels funny' and she is shaking. I can't see it happening. She'll instantly get extremely sleepy and has went from totally normal to dead sleep in 30 sec - 1 min. She sleeps for an hour and then seems OK. These are happening 1-2x a day.
====
I wonder if she's having some kind of migraine. A migraine headache can have abdominal discomfort along with it, or some people just have "abdominal migraines."
The shaking that she feels might be the internal tremors that many of us have?
If this is migraine activity, then supplementing magnesium may help.
I have had migraines where my head didn't hurt much at all, but my low abdomen was killing me. Sometimes a low dose of Dilantin helps. Sometimes a dose of cayenne pepper works.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Abxnomore
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I'm sorry to hear his too but I would get her to Dr. J and someone else in the meantime until you can get her in to see him.
Much of what you described sounds very much like childhood Lyme. I have a friend who described many of the same things you did and her son had it. He has made tremendous strides, even potty trained, since seeing Dr. J. He is in school an prior to that he had no attention span. He had delayed developmental markers all fine now with continuing treatment.
My own daughter had a personality change at around five years old. I took her to a therapist. Little did I know that I passed lyme and babs on to her from birth.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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I, too , have a 6 year old daughter, and she is a complex case.
The way you described her in the past, I would say could be nutritional issues, with gluten possibly being an underlying problem. Gluten can cause constipation instead of diarrhea. Dairy could also be a source of constipation.
Have you ever read the book Special Needs Kids Eat Right? It changed our lives.
The new issues, I think, could be Lyme or something else. The first time I remember getting really sick in a specific way, I was in college, and I would be overcome with exhaustion and fall asleep. No test (that they did in the 90's) came up with anything.
Low tone/not "feeling it" could be sensory processing disorder - something with complex underpinnings that can be corrected with dietary supplements + dietary changes + occupational therapy.
My non-medical guess is that she had some chronic underlying issues, and that made her vulnerable to something new.
I hope you find some answers!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
Do you think she has bell's palsy of the gut (gastroperisis)? I'm praying for you all.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
So sorry to hear, would you consider taking her to the Romeo, MI doctor? I worry about my daughter getting this 24/7
Posts: 128 | From MICHIGAN | Registered: May 2008
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nefferdun
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I am really sorry she is having so much trouble. I agree taking her to DR. J would be a good idea to rule out congenital lyme and also get his expert opinion about what else to check for. You must be very worried.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Brussels
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Doesn't it sound like lyme?
But the good point is that most kids react very well and FASTER to treatment, whatever you choose to do.
Please keep on going. I was also sick with chornic lyme and had to take care of my 1 year old who also caught lyme and the nightmare lasted 4 years. Now it's all past and it does worth to fight and keep heads up!
She's healthy now and a happy girl.
Sending you a big hug. Never forget that kids improve much faster and easier than adults!!
Posts: 6199 | From Brussels | Registered: Oct 2007
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jackie51
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posted
Does this sound at all familiar? My daughter says her stomach feels hungry but her mouth doesn't. It scares her. Sometimes so much if she has food in her mouth, we have to get it out for her.
She also gets food cravings. She will only eat one thing, until she is sick of it. We've done chicken pot pie, breakfast lunch and dinner. She has just gotten sick of chicken fried rice.
She absolutely has to have something so badly she is asking for it many meals in advance. Can bring on a panic attack because she's afraid she will starve to death if she doesn't get it.
Than, all of a sudden, can't eat it, can't touch it.
So very odd. Hasn't always been this way. Has always been constipated, though with the antibiotics this is better. Also takes fiber gummies.
So very challenging. Hard to wrap my head around.
Do you have a bio-energetic tester that you trust?
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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WPinVA
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posted
Hi there - I know how you feel. As sick as we can get, it's always 10x worse when your child is sick. It sounds like she's had a lot of tests already but have they done a strep test? Strep can present with stomach pain as an early symptom.
posted
Definitely consider getting a lyme/babs test ASAP. My 9 year old was having similar issues - at birth, failure to thrive; GI issues as an infant. Changes around 4 years old - sensory issues/awareness/personality.
FInally tested last month after going to all the "specialists" - positive for both lyme AND babesia.
Another thing to rule out is persistent strep - test for ASO - antistreptolysin and dNaseB.
Hope this is helpful.
Good luck to you.
Posts: 348 | From NJ | Registered: Sep 2011
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posted
Her symptoms are very much like mine and I tested positive for lyme. I passed lyme to my children during pregnancy. I had it 6 years before showing any symptom. I would get her tested!
Posts: 137 | From Illinois | Registered: Jan 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
THanks so much everyone. I'm exhausted tonight, but I will be posting responses very soon. I appreciate the concerns/advice as always.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
SeeK PLEASE go to Umdf.org...These are classic symptoms of Mitochondrial disease. On their sites is a place to search answers from some of the top pediatric Mitochondrial drs.. Their are only a few genetic centers that can diagnose this and DNA genetic tests pick it up at 100 % and can tell which kind so they can treat. Lyme can be a trigger...Hope this helps.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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quote:Originally posted by sk8ter: SeeK PLEASE go to Umdf.org...These are classic symptoms of Mitochondrial disease. On their sites is a place to search answers from some of the top pediatric Mitochondrial drs.. Their are only a few genetic centers that can diagnose this and DNA genetic tests pick it up at 100 % and can tell which kind so they can treat. Lyme can be a trigger...Hope this helps.
- I agree this is a possibilty. Also what Carol said..."I am thinking along the same lines as Carol -- maybe migraines or seizures." (abdominal migraines) .. or Lyme, etc.
and ditto on the Gluten. It can cause neurological problems along with the GI troubles. Elimination diet is the best "first" route.
Prayers and hugs to you and your family!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Another possibility to consider would be blood sugar issues. Juvenile diabetes often shows up around her age. And a hypoglycemic event can trigger the sudden falling asleep episodes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
So many things to consider... but where you are both sick in the same home... wouldn't you think it is environmental?
My dog was sick, I was sick, my son was sick... then my husband and my daughter were sick.
We all didn't have the same symptoms... far from it.
My husband had chest pains.
My dog was lame... wouldn't get up to eat.
My daughter had nosebleeds, followed by severe headaches and constant behavior problems.
I had dyslexia and confusion.
My son had seizures, trouble balancing, ringing of the ears, stomach problems, endless pain and trouble sleeping.
Bottom line... WE HAD MOLD... hidden behind the walls... unable to see or smell... toxic mold.
There is a urine mycotoxin test that you can do for $250... or you can test a white cloth for mycotoxins for around the same ammount.
PM me if you want the to contact the lab that does this testing.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Glad someone mentioned glucose. I have similar events when my levels get out of wack. That tremors, stomach feeling funny and falling asleep happen to me when I am not controlling well.
I also get migraines, ones with headache pain and the intestinal ones as well. Could be, but glucose runs first to me.
Posts: 12 | From Conowingo, MD | Registered: Oct 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, it would be hard to respond to all the comments, but I will generalize.
My daughter continues to have issues, but today has been better thank goodness. Yesterday we were very scared. She was walking to the dinner table and coughed funny a few times and then dropped to her knees. She looked very scared and cried uncontrollably for 20 min or so afterwards.
She then got very tired and fell asleep. Her personality seemed different - super cranky. That's the first time that happened. All her other episodes involved the cold feet or shaking comment followed by overwhelming fatigue out of nowhere. Only a few times has she commented on her stomach bothering her.
We have been through the ringer so far. Took her to urgent care last Thurs, reg pediatrician on Sat, and ER sat night on advice of pediatrician.
They were concerned about possible Intussusception based on an x-ray/ultrasound of abdomen. Within 2 min, the ER doc said no way it can be that. Our pediatrician is very nice, but always leading us on wild goosechases. The specialist always immediately says their suspicion is way off. It gets frustrating.
We're also paying careful attention to when these episodes occur to make sure there is no mental component. We have noticed they happen more often when she is asked to do something she doesn't want. Her teacher noticed this as well. However, I do not believe anyone can self-induce sleep in 1 minutes purposely so I'm real keep on getting to the bottom of it all.
Well what can I say....
- Glucose always fine on spot reading tests - no signs of diabetes
- I am male so me passing congenital Lyme is VERY unlikely unless I passed it to my wife who passed it to my daughter IF you even believe that's possible to do. My wife is healthy. However my daughter has had many, many mosquito bites that swelled up. She reacts strongly to bug bites.
- Regarding mitochondrial illnesses, I was tested very thoroughly by a world expert 3 yrs ago. I went through every test including the gold standard deep muscle biopsy. They could not find it. This does not mean an undetectable form doesn't exist they can't find yet. I have many symptoms in line with these illnesses, but not on a severe basis as some. Also the likelihood of a male passing it is negligible. Females are the ones who pass most genes my expert said.
Also when she was young, she went through some testing - not extensive like me - that did not show any signs of these illnesses. Not ruling it out though.
- Possible seizures - YES, could be, but again doesn't completely fit any type I can find. However, I called her neuro and they are going to do a 24 hr EEG outpatient to see what comes up if anything. I think definitely worth checking into. She has no head pain, headaches, sensitivity to light, etc.
- Parasites??? Why not really? Anything can happen. My wife will NEVER buy into this and treat that. She thinks it's BS. Same with Lyme/TBIs. She said she will not subject her to that treatment and doesn't want her child 'taken away' due to doing freakish things.
Karen, I sure could buy into the mold problem. My wife doesn't think it's a real issue. Well, the last 2 days it went from sunny and decent weather to damp and rainy. My life has turned to hell. My blood pressure jumped off the charts from 135/85 to 160-170/105. My heart is pounding for no reason. Legs got super weak. Head messed up and much more. Horrible anxiety out of nowhere. My eyes are so blurry I can't see straight. Something is WAY wrong. The mold inspector swore my house with within normal limits and no risks existed based on the two air test samples taken and visual inspection. My basement smells TERRIBLE on wet days though.
Maybe my home is built over a UFO site? lol. All I know is I'm in trouble. My health is so messed up. I see no way out of this. Can't function to any degree at all out of the home and as soon as I stand upright for anytime, my system goes crazy. Of course they say I don't have POTS or anything like it.
I'm just a 'medical mystery'. I DO NOT want my daughter being one too. I pray this goes away for her.
Thanks everyone.
Jackie, what exact stuff was your child allergic to? I really think this is some component of her issues? Certain food colors? Certain other stuff? My daughter tried eliminating milk, but it didn't help much. She has tested negative on all aspects for Celiac Disease so it seems out. She has never undergone any official allergy testing.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Celiac testing is not great, especially for kids. There are many, many false negatives. You can do Enterolab (stool sample, so not invasive) or an elimination diet.
Traditional allergy testing will only show IgE mediated allergies (hives, anaphalaxis, etc), and not intolerances which contribute to gut/brain issues.
I wish you all the best!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Seek--I'm so sorry your wife is not on board with TBI's. I understand the struggle as my spouse has been slow to learn and/or understand.
We all went through energetic testing and this child was sensitive to the items I listed above. it makes sense, because her problems are neuro. We've only had one episode of what you're explaining--the panic attack and then full exhaustion. Fortunately, at this point we were already treating for high strep titer.
it sounds like you have some work ahead. Get some dehumidifiers for the basement. If the moisture is gone, the mold will die. Get some lysol spray and spray when you can. Watch out for chemical sensitivity. When you spray in the bathroom, turn on the fan. This will help kill any mold in the fan too.
Since your wife is not into killing parasites, feed your daughter foods that parasites don't like. Pineapple, pumpkin seeds (raw), coconut oil (almond joys or mounds come to mind).
If you aren't already disinfecting toothbrushes with Hydrogen peroxide, you should start. Also, eliminate artificial coloring/sweeteners from toothpaste & shampoos. Use detergent/laundry sheets that are color/fragrant free. This is more just to reduce the environmental load than anything.
You probably already know about everything I mentioned. Good luck. I know how hard this is.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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tick battler
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Member # 21113
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Seek - please consider getting her to an LLMD. It sounds very much like lyme to me. As you know, it is very, very common for entire families to become infected due to similar environment and similar genes. Lyme would be the FIRST thing I would look for, based on the symptoms you describe. My children had many of the same symptoms.
If you do get a diagnosis, you might consider starting with herbs....in my experience they work better than abx (if you take the right ones) and are much less toxic. You might get her evaluated with an EDS machine since it was so helpful for you recently. Cheaper and probably more accurate than blood work, if you are with the right practitioner.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Abxnomore
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posted
I agree. Have her tested and worked up for lyme ASAP. You well know how differently this illness can manifest in everyone and from what you described it sounds very familiar to me, as to how it manifest in children.
I would not delay and that does not mean not to explore other avenues but certainly, after what you have been through and already know about his illness, you don't want to miss a early opportunity to treat her if she should have it.
The jury is not out if it can be passed via semen but there is much evidence that it can. But even still, she could have been unknowingly bitten just as a zillion other people have.
It seems that your daughter needs immediate and urgent help. If your wife is not big on certain ideas that it's up to you to get your daughter help and the testing she needs, including Lyme.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Seek- I have not been here in a long time. Was diagnosed with Ehlers Danlos Syndrome which led to the explanation for most of my issues. Cranio-cervical instability, mild Chiari malformation- but enough to block csf flow, cervical stenosis only visible on upright mri with flexion and extension and also a tethered spinal cord and neurogenic bladder. Also, a rotational neck CT that shows my C1 vertebrae dislocated off my C2 when I turn my head left!!
I PM'd you. Please read.
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
She was walking to the dinner table and coughed funny a few times and then dropped to her knees. She looked very scared and cried uncontrollably for 20 min or so afterwards.
Chiari can cause a cough headache. I get them from coughing, crying, sneezing too much- any exertion.
Posts: 819 | From East Coast | Registered: Apr 2009
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Dogsandcats
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Member # 28544
posted
Kitty-
What is a "neurogenic bladder"
thanks...
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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I really feel for you. I have a 6 year old daughter and I can only imagine the worry you are going through.
MY lyme symptoms sound just like your daughter's. Shaky, weird feeling, and then the IMMEDIATE need to sleep. I actually had a bartonella co-infection that really screwed up my GI system. 2 months of levoquin cleared the GI stuff up. I think your little one is too young for levoquin (they prescribe something else for children), but it sounds like lyme that was possibly passed to her in utero?
Posts: 42 | From Virginia | Registered: Aug 2011
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ktkdommer
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posted
My son in 4th grade was diagnosed with "abdominal migraines" or cyclic vomiting syndrome. There is lots of uncontrollable vomiting with that.
My son's behavior changes overnight following a virus. Every virus in fact he changed a bit. The nuero thing was huge and happened quickly.
He also had gastoparesis or freezing of the stomach. It was frozen until 3 months into Lyme treatment. Now it is normal. He took a med for myasthenias gravis to get it working.
My son has dysautonomia. When the CNS deregulates, anything can go wrong. My son would have a similar need to sleep after an over response to something minor caused by his anxiety. It was the surge of dopamine or whatever that brought it on. It wiped him out. Not as fast as your daughter though. He had his catecholamine levels tested or the fight or flight responses.
All my son's scopes, x-rays and labs were normal for 4 years until IgeneX.
I'm sorry that you are going through this with such a young daughter. I hope you get answers soon.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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