I have a 15 yr old daughter who is severely visually impaired, She has a rare eye condition called Achromotopsia, Her 3 yr sister has also inherited it and it has left her nearly completely blind in daylight.. My question or concern is my 15 yr old. At the tender age of 2 she began complaining about her legs aching, doctor after doctor .. we have been given several diagnosis from mild MS to Muscular Skeletol Disorder..with several second and even 3rd opinions ruling out the first diagnosis?? ok now im confused, WHAT IS IT? through the years it has gotten worse, Back in March she tore a cartilage in her wrist.. her wrist constantly swells, she was put in a wrist cast and Ibuprofen for swelling, I took her back to the Doctor a couple weeks ago after listening to my daughters complaints and was a little..well alot concerned, Her arm still has not healed, she has bad flare ups leaving her wrist to swell, Her legs and arms, neck,She has a large knot at the top of her spine,"Im told this isnt normal but again no explanation because an xray came back normal" huh? How? Her shoulders ache constatly sometimes to the point where she struggles just to get out of bed in the mornings, She gets headaches.. I took her to the Dr and demanded some answers, I cant sit back and watch my daughter go through this any more.. The Dr said she suspected Cushings Syndrome and did bloodwork on her, Her cortisol level came back normal today but she wants to see her Monday because her cholosterol level was to high, So now were back to where we started from, Im getting very frusterated because I feel like I am bothering the Dr and as a parent i shouldnt feel this way, But I know something isnt right here, She has even been hospitilized in the past for running a fever of 103 for 11 days straight with again no known cause, Has anyone ever heard of this or can give me pointers, Im determined as a mother to figure this out, Im not over protective and Im not crazy, ok well maybe I am a bit of both :0) I just want to help my daughter and will continue to beat the doors down until I get some answers.. am I wrong for doing this?
I wanted to Thank all of you have responded to me and to let you all know I am reading each and every responce.. To answer a few of yall's questions, I have taken her to a Neurologist a couple times.. She was also referred once for having a grandma seizure when she was 7 ( I think) we had no explanation for it and it was the only one she has ever had to date, We also took her 2 years ago when she lost her complete vision for nearly a week, The school called me one morning telling me she was bumping into the walls and riding the walls as she walked, "well hello she was already visually impaired it didnt take a spoon full of common sence to figure that one out, so I immediately rushed to the school and we took her to the Neuro.. Again no explanation.Since then she continues to have blackouts lasting 30 seconds to a min, sometimes, it has become a part of her life at this point. I thank you all for your encouragement and rest assure I will not give up, I have health problems of my own that I struggle with and If it takes my last breath I will not give up trying to figure this out or advocating for her.. Im learning alot from the responces so please keep thenmm comming..
It could be Fibromyalgia and Chronic Fatigue Syndrome.
You can call me at ###-###-#### and I will tell you details about this disorder because I have it.Doctors don't know much of it.
S. Vilig
K.,
My heart goes out to you!
I would recommend that you try Texas Scottish Rite hospital.
Their services are free.
Victoria
K.,
This is terrible. Have you tried an alternative doctor? Could she be allergic to something she is eating? We have been going to a homeopath for years and he has done wonders with my son with autism. If you are interested , email me and I will give you his name. he is a medical doc too.
L.
Hi K. -
You are doing the right thing as far as trying to get answers for your daughter. Don't stop until you get her the help she needs.
I was in a similar situation as your daughter, although not as severe. I had the fever over a long period of time, then weight gain and then the loss of the use of my legs/hips/hands/wrists. I struggled to get out of bed on my own due to the pain and lack of strength. Doctor after doctor could not identify the true cause. I was told lupus and rheumatoid arthritis while still living in Chicago. Once I moved to Texas, I met with Dr. Kheshgi. She was WONDERFUL in helping me find the cause to my issue. I was diagnosed with fibromyalgia. This may not be what your daughter has, but I feel meeting with Dr. Kheshgi may bring you some answers.
I would like to give you her information as I think her knowledge and bedside manner is superior.
Good luck with your daughters and don't give up your fight!
Here is her information from the united healthcare listing of doctors.
Kheshgi, Talat J, MD
ID #: 00001763807 03
5939 HARRY HINES BLVD STE 400
DALLAS, TX 75235
###-###-####
RHEUMATOLOGY
Board Certified
Rheumatology
Graduation Date: 11/30/1983
Gender: Female
Education: RAWALPINDI MEDICAL COLLEGE; RAWALPINDI, PAKISTAN
Hospital Affiliation: Baylor Medical Center at Irving, Baylor Regional Medical Center at Grapevine, Medical Center of Plano, Methodist Charlton Medical Center, Methodist Dallas Medical Center
NO, YOU ARE NOT WRONG!!! YOU, no one else, is the advocate for your child!! I lost my beautiful special needs son a little over 8 years ago and I fought for him tooth and nail from the day he was born to the day he died! I pissed off people, docs included but I could have cared less. I will never forget the day he spent crying and screaming which prompted another trip to the ER (there were many in the 3 1/2 years he was alive). The ER doc was a total JERK and when he couldn't figure why he crying the way he was (and he NEVER cried) he sarcastically said "What, do you want me to x-ray his whole body?" So, I looked him in the eye and said, "Yes, get started." I told him if that's what it would take to solve why my child was in pain then so be it. The most aggravating moment is when that jerk came back in a couple of hours later looking like he had swallowed something bitter and said that we have a problem. My sweet boy had a current fracture of his femur and multiple old fractures in his ribs, wrist and arm. I almost attacked that man for acting the way he did to us. He was born severly disabled, due to a prenatal CMV infection, and by this point we were suspecting he had developed Cushings Syndrome, also but hadn't been able to get into the endocrinologist yet. He was eventually diagnosed with Cushing's and unfortunately that is what led to his decline and eventually death, but only because his brain was already so severely injured due to the CMV. I am NOT saying any of this to scare you! Cushings in an otherwise developmentally, healthy person is pretty easy to treat. I know this response was long but my point is that you should NEVER feel guilty for doing what is necessary for your child, for wanting and DESERVING answers because she wants them and deserves them, too. You keep going until someone gives you the correct diagnosis. All of those symptoms have to mean something and eventually someone is going to figure it all out. In the meantime, you demand that she be kept comfortable. If that means some pain medicine at night so she can sleep and not be so sore in the morning then thats what they need to. You can do this! You are her mother and no one loves her more than you do. You'll find the inner strength to take care of her and even when you are exhausted and frustrated you will find a way to keep going because in the end, no one else will! I wish you both the very best of luck and blessings. Keep us posted here on the site as to how she is doing, esp. to let us know once you get a diagnosis. Take care!
M.
P.S. Has anyone mentioned testing her the vast number of autoimmune disorders such as Fibromyalgia, Lupus, Rheumatoid Arthritis, etc.. I myself have Fibromyalgia and some days my joints hurt so bad and my skin burns and is very sensitive to the slightest touch. I sprained my ankle many years ago and the cartilidge never healed correctly and at random times I can be walking along and have severe pain in that ankle. One other thing I thought of is having her checked for Lymes Disease, it can cause a vast number of problems/symptoms. Just a few suggestions....
I may be way off base here, but has she been tested for autoimmune diseases like fibromyalgia or Lupus? The fact that she has swelling and inflamation sounds like something in that family.
Also, sometimes you can get a negative test with symptoms only to come up positive later. My sister has rumetoid (sp?) arthritis and this happened to her.
Stay diligent Mom!! You are doing the right thing!! I'll keep y'all in my prayers!
K.,
You are not over-reacting. You and your daughter deserves answers. Has her vitamin-D levels been checked? Very important for bone/muscle/immunity. Most, about 85% of Americans are severely deficient,with the most being in the young population. They are even seeing an increased incidence of rickets lately! Also Magnesium is very important. Vitamin D3 is what she should be taking. If she is severely deficient, 5000mg/day for 2 weeks, then down to 2000/day thru the Month of March will be sufficient to get her levels up. The form of Magnesium I recommend is called Natural Calm and you can get it at Whole Foods, Sprouts or the Vitamin Shoppe. I would recommend the one with Calcium. As for her high cholesterol, don't be alarmed. High cholesterol in children shows that there is some injury the body is trying to repair. Cholesterol is the first hormone to the site. If she gets proper nutrition, is not over-weight, this is a very healthy response by the body. But, you have to find out what the underlying cause of injury is. Has she recently (past 3 months)had any vaccinations? Sometimes with the immune response they illicit it can cause the immune system to go into over-drive and cause swelling in joints, fever, etc. As for her spine, it needs to be evaluated by a specialist in the area--a chiropractor. I'm not sure where you live, but I have an office in Plano. I specialize in upper cervical care (www.upcspine.com). The website is a patient run site so you can get a layman's view on the technique I practice. If my office isn't convenient to you, I would be happy to refer you to someone closer to you. I am also able to get bloodwork done if you would prefer everything done at one office. Please contact me directly for any further questions: ____@____.com God Bless and I hope this helps!
Years ago I suffered from some symptoms and I went to doctor after doctor looking for a reason. After trying on and off for about 5 years, I finally saw a very caring neurologist who diagnosed my problem and I had surgery on my spinal cord to correct the problem within a few months. That was 11 years ago. What I learned from my experience is to be persistent. Keep going to to doctors for 2nd, 3rd, 4th, etc opinions until you get an answer and treatment that helps. I, also, learned that even though some doctors cared and wanted to help, they just didn't have the knowledge or expertise to help me. You are the only advocate your daughter has and she is counting on you, so continue to help her any way you can. Good luck!
K.,
I don't blame you one bit for being frustrated. A Mom's job is to protect their kids and that's hard when you don't know what is going on.
Are you sticking with the same doctor? I have to assume you have seen some specialists, but it sounds like another opinion is in order. How about a rheumatologist?
I'm betting you are NOT over-protective, and absolutely you are NOT bothering the doctor. Intellectually you know the doctor is employed by you. Try to keep that in mind.
And NO, you are NOT wrong....I'd suggest you keep knocking on those doors until you feel like you are getting somewhere. You just haven't found the right doctor yet.
Last, you are helping your daughter just by being her advocate and loving her. Do your best, but know some things are out of our control. Your love is the most important thing your daughter needs and it sounds like she has it.
Hang in there!
P.
I know it is really a LOT to suggest, but I highly suggest checking to see if insurance would cover a visit to the Mayo clinic. You'll have travel expenses too, but they will very likely be able to give you the answers you need. My mother finally made the trip after doctors were recommending amputation for her leg problems and the Mayo clinic gave her a complete work up- spent an entire day with her, found the issues, changed her meds- and voila- no more leg pains and no more leg braces for my mother. They also found she had an unknown allergy causing her other problems. It was worthwhile.
HI K.,
I can sympathize with you. My suggestion is take her to the Dr when she has a flare up, so they can see exactly what is going on and don't ever feel like you are bothering a doctor. That is there job, seek specialist after specialist even if you are not sure they are the correct specialist. It took my kids ENT to determine what type of migraines my son was having and not the neurlogist, so you just never know. Hang in there.
R.
Your not wrong as far as I'm concerned. Has anyone thought about possible Fibromyalgia? It may not be the whole answer, but it could be part. I know with mine I hurt like your daughter does....I seem to injure my joints easly, and the problems never seem to heal. I sprang my ankle and thought that was all it was...but the swelling is always there unless i am totally off of it....there is now arthritis in the ankle so bad they could see it easly on the x-rays. I don't sleep well or for long periods of times tho i am so tired i can't see straigt. there are times i run a temp tho it's never been that high. I also bruise very easy, and the bruises are very painful. And i'm either constipated or running full blast there is never a happy medium. There are several different things the dr's can do to help the problem, but it is like ms at times but not much helps me. I do take magnisum and b-12 injections once a week. and that helps me keep walking, i tried the Lyricia but it didn't do much. Now am on Cymbalta....I can tell a little difference with it, but not as much as i wish. I have more bad days now than good, but i won't give in to it and keep going because i have to much to do with the rest of my life. Attitude, and outlook is part of the ability to keep going. I don't know if this is the answer for you....but it's worth checking into to make sure it isn't that. Good luck and i hope you find her a little relief Sincerely ____@____.com
Sounds like you might need to try some alternative ways of healing- Do you go to a chiropractor? What about a kineseologist (they do muscle testing). Sounds like she needs magnesium for the sore muscles and lots of vitamin B. As a mom you are the person responsible for finding the right medical help for your children. I encourage you to do some research on the internet and in your area for someone that will use the body's way of healing itself instead of filling it full of medicine that are counter productive to the bodies healing technique. No you are not crazy- when our kids are sick and we have not answers it brings out the mama bear in us....which is good if you can point that determination in the right direction! I'll pray God gives you the wisdom and leads you to the right people/places!
Every watch the show Missed Diagnosis? I think that's the name. Some times you have to be very loud about getting your child some answers. Have you gone to specialist? Endochronologist? I've never heard of those exact symptoms but keep speaking up for her. Don't let the doctors tell you to give up. Keep seeking help.
Has she been tested for juvenile arthritis?
Did they refer you to any specialists? I think you have some valid concerns and would do the same thing in your shoes. I don't have any physicians to refer; however, you may want to ask around. Kind of sounds like juvinile arthritis; however, I don't really know. Definetley need some sort of specialist.
I would take her to a doctor who specializes in diseases (rare ones). I watched a show fairly recently where the family had a similar situation with their child. After years of wrong diagnosis' they found out that their child had an extremely rare disease. I don't think it was deadly but there is something that can be taken for the symptoms. If I remember correctly, the lump on the spine was one of the dead give aways....I think it was "Mystery Diagnosis". See if you can find the episode on the website. I think it's a Discovery channel. I am so sorry your granddaughter is to go through this. Good Luck!
Have any of the Dr's thought about Lupus? or Fibromyalgia? A lot of her symptom's sound like my fibromyalgia. And no you are not wrong in wanting to know what is wrong with your daughter. You keep on going mom...someone will find out what is wrong. Unfortunately so many of these diseases have the same symptoms and have no defintive tests, that it makes it hard to diagnose. Good Luck and my prayers are with you.
I just wanted you to know that your daughter and you will be in my prayers. What a precious daughter you have, she is lucky to have a Mom that will not give up! Keep after the doctors to get some answers, I am a firm believer in our (Mother's)intuition... you said you know something is wrong... so, don't give up! I know the Mommas here will have some great advice and we can send lots of prayers up! Best wishes!
Don't stop fighting for your daughter until someone figures this out. I know this is a stretch and I am no doctor, but I saw a rare brain condition on extreme make-over home edition that is very hard to diagnose. The condition is such that there is an abnormality in the skull that causes the brain to grow out of the skull and into the spine. Some of the symptoms you are describing match some of their symptoms. I don't remember the name, and tried to look it up with no luck. I do remember that since it is so rare, that it is extremely hard to diagnose. Eye problems, extremely sore legs, sholders, back and neck were some of their symptoms. Symptoms get worse as the child grows because more of the brian is being affected. I will be praying for you and your family. Never give up... an answer will come.
I don't know how mobile you are, how far you are willing to travel, but there is a wonderful doctor in Greenville, SC who was the answer to our prayers for our daughter. His name is Dr. Robert G. Swartz and he's just about the greatest diagnostician I've ever heard about. People from all over the US go to him. You can Google "Dr. Swartz in Greenville, SC" and it will pull up his website. Also, www.piedmotpmr.com, I think is the clinic website. If it were my daughter (and it was), I would take her to him. Other than that, I'd look into gluten intolerance. That does strange things to the body, organs, etc. Doctors never look at that, though. Good luck.
Has she been to a pediatric rheumatologist? My daughter was hospitalized before her second birthday with a 104 fever and swelling around her joints. They thought she had some weird virus and quarantined us. After many tests, they said they thought it was juvenile arthritis and referred us to Scottish Rite. We were fortunate because some kids go years and years before getting a diagnosis. She's five now and has eye involvement (iritis) too.
I don't know if this is what your daughter has, but you should get her into a pediatric rheumatologist just to rule it out. The only issue is that there are only a small number of them in Dallas - Children's Hospital and Scottish Rite.
Definitely look into it - you are NOT wrong to get to the bottom of it. Even though we have a diagnosis, I'm still trying to figure out what is the cause. My daughter also has food allergies, environmental allergies and asthma so I'm trying to find a connection even though doctors tell me there isn't one. As a parent, it's only natural to want to figure out what's going on and how to get it under control!
Good luck!
Hi K.,
I noticed that one of the other ladies mentioned Lupus as a possibility. It was one of the first things that popped into my mind when you described her pain. It certainly wouldn't hurt to get that possibility checked out. I would contact a rheumatologist. They can test for Lupus as well as Rheumatoid Arthritis, and a number of other conditions that could be causing her pain.
The other thing I would suggest... Another neurologist. If she's having "black outs that last for about 30 seconds" that could be seizures. I was diagnosed with juvenile epilepsy when I was 13 and had seizures that I would describe in that same way. I had what are called Petit Mal seizures. (Grand Mal are the convulsive type.) I could be in mid-sentence and have a seizure. To me, it would be a black out. I wouldn't remember anything about the seizure or what I had been talking about or what I was doing before the seizure. Sometimes, other people wouldn't even notice. Really the only time anyone else noticed I had a seizure was if my head dropped back which it did on occasion or if they were looking at my eyes. My Mom said she noticed this sort of "glazed-over, glassy" appearance of my eyes when she would witness a seizure. I think she definitely needs bloodwork and an EEG and CATscan. A neurologist should do all of that. If not, find one who will. If they find that she is having seizures, they can also try to determine if it is epilepsy or if she could be having them for some other reason.
Good Luck and keep doing what you're doing. You're doing the right thing by searching for the answer for your daughter.
I agree with Tina about testing for autoimmune disease. The best place to go is Scottish Rite-Dr. Lynn Punaro or Dr. Virginia Pascual.
Good luck.
You are a wonderful mother and you are doing the right thing although it's hard. Keep doing it! Look up everything you can online and keep asking questions!!!! If this doctor isn't helping or you feel that he is only doing this because you ask and not because he's concerned, find another docter. If he really is concerned with what is going on with your daughter there should be no problem with doing everything possible to find out what is going on.
I'm sorry I can't point you in any direction for this but I just wanted to let you know that I really admire your courage and determination to help your daughter! She has a great mom! Keep at it and you will find what you are looking for!!!
God bless you and your family!
~C.
I'm sorry for all your pain. and and as a Mom beating the doors down is exactly what I would do. I'm sorry I've never heard of this I would like to pray for her if I can. I have heard of allergys to food reacting bad to the body giving migraines I would also maybe contact MD Anderson in Houston they have a Web site for questions and answers. They just saved my great nephew. My heart goes out to you all.
Check out:
Jigglin' George's
673 Hwy 165, Bldg. 20
Branson, MO
1-866-617-7621
This machine heals from the inside out .... no drugs, no side effects, safe for small children to old, OLD folks. It really works!!
These are good Christian people who started out wanting to help their family. You will be amazed!
Good luck!
C.
Good luck.
K....as a mother we have to fight for our kids...if we don't no one will! I don't have any experience with health problems with my kids, but my husband has been having some problems and the dr has been making him feel stupid...the dr can't figure out what is wrong with him, so I think the dr gets to the point where they can't figure it out so they start trying to get you to go away. So, I do understand how challenging it can be. I would find a new dr. Best of luck and keep trying...you will figure it out.
Hi K.!
That sounds a lot like what happened to me as a kid, and I was finally diagnosed with rheumatoid arthritis. They can do blood work and x-rays to see if she has it, but it will require a specialist. It seems to go undiagnosed for years before somebody figures out what it is, which is odd, because it shows up in bloodwork. I think doctors just don't tend to think of testing for it.
Best of luck!
Teri
Hi K.,
I know this sounds crazy but can it be parasites? I was watching show on TV and it's unbelievable what these creatures can do to our bodies. Just an idea...
Please keep researching and the answer will come,
R.
Since her wrist seems to be the most noticeable problem at the moment have you tried Scottish Rite to get the wrist fixed? Or to have it at least looked at? They have a great hand clinic and a lot of experience with hand/wrist/arm deformities/injuries. You could at least try to get one problem sorta out first and maybe they would have some ideas as to why the wrist isn't healing well and could refer you to someone else if they think another reason is the cause of the the other problems she's experiencing including her wrist not healing properly. That's about all I can think of in the advice department. It's hard when you know something is wrong but you can't figure it out. Scottish Rite might be able to look at her legs too since they are quite painful. They do a lot of orthopaedic work there. Unfortunately when the labs come out normal it's confusing...something's going on but nothing is showing up...very agitating. Good luck!:)
Oh, my gosh, NOOOO you're not wrong for doing this!!!!!! CLEARLY there's something wrong and your daughter deserves your dedication to getting to the bottom of it!!!!!! I don't know where you live, but I live in Bedford and can recommend some great health care practitioners in the Northwest, TX area. (I'm a rep who works with some MD's and DO's and several accupuncturists, massage therapists, chiropractors, pharmacists and nutritionists, among others. My territory is Fort Worth and most of the northwest area of TX. However, I do know a great Naturopathic Doctor in Garland. Check out his ____@____.com's awesome! There's also an MD in Grapevine with whom I work. His name is Dr. Kotsanis and his website is www.wellnessandaesthetics.com. Based on all that you've tried and the fact that your daughter is still suffering, it's my hope that you're open to less traditional methods of helping her, especially considering that many traditional methods are just about putting a band-aid on an issue rather than finding the cause and fixing it! PLEASE don't hesitate to contact me if you'd like more information. I'm not interested in selling you anything, so please don't be intimidated by the fact that I'm in sales. I provide health care professionals with tests that are typically covered by insurance; thus, I've had exposure to numerous health care professionals in the last year. The amount of knowledge they have is astounding! What many of them do should be considered traditional medicine, while what many who work within the traditional industry do should probably be a last-case option. Again, please let me know if you'd like more information. I wish you the BEST of luck!
S. King
Just a follow up thought - I haven't finished reading the responses, but someone mentioned Scottish Rite and I had to jump in and echo the advice: try to get her in to Scottish Rite. It sounds like she's got something that will need attention for a long time - you want to get her in to SR before she turns 18. They can get help for the rest of their life once they've been seen at SR.
Hope you guys can figure out what's wrong!
Hi K.,
I have no medical advice/insight. But I do want to encourage you that you are not wrong for being your daughter's advocate. Keep trying, keep looking keeping researching. You will find an answer. If doctors get irrated, oh well. That's their problem, not yours.
I would recommend to do medical research on the internet. Keep doing posts like this, including on blog spots or yahoo answers.
I don't know if you have a faith in God. But prayer can be an amazing source of strength and comfort to you. Blessings to you, and keep us posted!
Look at food allergies IgE and food sensitivies IgG testing. Milk and wheat are common culprits. But your daughters issues may be more severe. Do look into chronic lyme. You'll have to find a LLMD, lyme literate MD, of which there are few. I know a few people treating their autistic kids for lyme and can probably get a Dr. name.
K.,
I applaud you for standing up for your daughter. I have had problems with my health on and off for my whole life. Mostly I was just told that I was a hypochondriac. When I was 17 a doctor diagnosed me with rheumatoid arthritis.
Finally, when I was 45, they discovered that I was having strokes. Since I had no risk factors, doctors began to look for a reason in earnest. I was sent to an immunologist who ran more than 30 tests on my immune system. The very last one, which was forgotten at first was a hit. It is a gene defect called HLA B-27. It is linked with psoriatic arthritis (similar to rhuematoid arthritis but only effects one joint at a time -like the wrist), ulcerative colitis, Sjogrin's disease, and about 100 other auto-immune diseases. These diseases are very difficult to diagnose. Many of the diseases associated with this gene have been featured on Mystery Diagnosis: they are notoriously hard to diagnose. Good Luck!
Jen
hi K., after reading your post, i feel for your frustration. justa couple of questions for you. did your daughter get all of her vaccinations? how is her digestion and bowel habits? it sounds like allery or her body being toxic. unfortunately some answers come from different sources besides western medicine. i would likely request you look at nutition and a way to detoxify your daughter. a lot of diseases can be traced back to nutrional deficienes we have based on the typical western diet. which is high in processed food and additives. keep on searching the answers are there for you.
I do not have any experience with the symptoms your daughter is suffering; however, I definitely think you need to try another doctor. It sounds like the one you have been seeing just does not have the knowledge or experience with your daughter's condition. As a mother, you know your daughter the best. It's obvious your daughter has a condition that has not yet been diagnosed, so don't stop pursuing the correct diagnosis until you get it. Good luck....you're an awesome mom! :-)
This may be something completely out of left field and may not even relate to your daughters symptoms, but a distant family member just revealed to the entire family that she was 'finally' diangnosed with Dystonia. I have never heard of this illness until her explaining and us reading up on it. As a child she would always complain that she was in pain and that her muscles hurt. It was hard for her to explain to the doctors and after being tested for a million illnesses and getting older, a dr finally listened and thought outside the box. I don't have all the details, but it is one of those problems that no one thinks of.
You are the voice for your children...keep on beating down doors. I pray that you find your answers.
You are doing the right thing by pushing for an answer. I would like to suggest as I noticed some other had, that you take her to a rheumatologist. There is a good one in Dallas, Dr. Diane Petrone, at the Arthritis Center of Texas. You and your daughter are in my prayers.
what type of doctors have you taken her to? not all docs are equal.....
Hi K., I'm sorry for my late response but I think she should see a rheumatologist. I was experiencing simmular symptoms & was diagnosed with fibromyalgia, Osteo arthritis as well as rheumatoid arthritis. It is extremely painful & until I learned how to live with it I was unable to get up & down from my chair, bed or anywhere without help. I actually went down for several months. I'm am now on total disability but After several months of steroids I realized that it is something I have to live with but was able to get back to a fairly normal life. I know several little children & young people that suffer with these deseases I pray that it isn't what she has but there is help with medication. Take her medical records with you. They can find this with blood test. They may be able to tell from the ones she has already had. If you are in Denton or close, Dr. Johnathan Reyes is wonderful. I went to several others but he is so caring and compasinate much more than anyone else I found. I pray that isn't what she has but you should give him a try. ###-###-#### 4308 Mesa Dr. Suite A Denton
I don't have any answers for what is going on with your daughter, but I will tell you this - don't give up on getting an answer and don't let yourself think you are crazy or paranoid. I know doctors have a way of making you feel that way, but you know what is best for your children. I have a daughter with a heart transplant, and therefore has a super low immune system. Her doctor's office must think I'm crazy for how often I bring her in and often it is nothing, and often I feel paranoid - but that's my child. It sounds like there is obsiously something going on - I wouldn't give up.
Try the orthopedic specialists at Scottish Rite. This sounds like a bone, joint, tendon problem?? Maybe it's just out of the pediatrician's scope. Hopefully she will admit it and refer you on!
Hello K.,
I know this response is very late. sorry to hear your daughter has to go thru all of this. Know first hand what it's like to get answers. I listen to a christian radio channel. The word fm 100.7. Every Tuesday and Thursday there are this doctors on there. They talk about how everything relates to a nerve. They have helped many people in various area. I don't remember there names. If possible try to tune in. Don't know exact time they come on either. Im always in my car listening. Any thing is worth a shot at this point. Good luck and may God bless you and your daughter. She is in my prayers.
D. S.
Dear K.,
Good for you for searching for answers! I am a Certified Thai Yoga Practitioner. This work is wonderful for relieving pain, reducing swelling, increasing range of motion, improving muscle tone, and generally feeling better. I have worked with severely ill people (recovering from brain surgery, taking chemo, cerebral palsy, MS) and seen their symptoms improve. I also know of many holistic practitioners in Fort Worth.
You can read more about me and about Thai Yoga at my website.
www.yogapotential.com
You can contact me from the site. If you are interested, let me know.
Peace, Joy, Love, and Light,
M.
Hi K., I want to encourage you to not give up. My daughter is 12 and she had an undiagnosed medical condition until she was 8 years old. We have gotten a diagnosis and she was the 31st person in the world to have her disorder and the only one in the US when we got it. There are now 5 kids with it in the US. A practical suggestion I would give you is to get a small notebook or index cards and write down everything weird or not normal the date it happened etc... This way when you look at you can start seeing if maybe there's a pattern or a trigger for the pain. Also, you can pull it out and have it for the Doctor. Keep on it. I dragged my daughter to the doctor every time she would fall over because I knew what was going on with her was related to protein and I would make them draw her blood. Finally we got a flag on our blood work. It was slight but it caught their attention. Enough to do more intensive blood work. We were then referred to Cook's in Fort Worth who referred us to Texas Children's in Houston and the doctor there just happened to be consulting with a Doctor in Switzerland on what turned out to be what was wrong with may daughter. So keep looking, Keep knocking on Doors, keep asking questions. Our molecular Genetics doc in Houston tells us all the time they are discovering new things about the human body all the time. SO I will be praying for you to find an answer. But persevere. Also, know that you are not alone Many people walk and have walked where your walking. If you ever want to talk send me an email and I'll send you my number. Be blessed and keep knocking on doors. We must be strong for our kids.
K.,
I am so sorry for your daughters' eye problems, and for your 15 year old daughter's aches and pains all over her body. I feel for you, oh my god. You have a LOT to deal with, and it would also break my heart if one of my kids was suffering.
Here are my thoughts: whenever I don't get enough milk/dairy, my leg hurts. Is your daughter drinking enough milk? If not, make sure she is (preferably milk without the rBST hormone - I buy Springdale milk at Kroger - one gallon is only $1.99).
If milk/dairy doen't solve the problem, then I suggest finding new doctors. What kind of doctors are you taking your daughter to? Are they specialists? I would take her to many different kinds of specialists until you find a competent one who can give your daughter a proper diagnosis. Best of luck to you!!!
