Discussions By Condition: I cannot get a diagnosis.

My 4 year old has something the doctors cant figure out

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: nessiekools
  • April 15, 2009
  • 11:12 PM

This all started almost a year ago when my then 3- year-old suddenly started to complain of pain when using the bathroom. SHe had been potty trained over a year and was wetting day and night. Her pediatrician was convinced that it was a UTI and sent her home with antibiotics. When the culture came back negative, he told me to bring her back in to get checked out again. Told me she had an over active bladder and had to see a pediatric urologist, 10-month wait!!! In the mean time he prescribed Ditropan to releive the symptoms. Several months later at her checkup, the doctor decided to do an ultrasound and VCUG. Urinalysis shows trace blood. Ultra sound showed inflammation, VCUG was completely normal. Which was a relief since she had hydronephrosis as a baby. The pediatric urologist decided to see her sooner. He made her do a voiding diary and found that when she did make it to the toliet she couldnt hold more than 2 ounces. He prescribed Detrol and sent her home. Over time her teachers at school along with mself started noticing that she suddenly has been VERY clumsy. Falling all the time. Her doctor sent her for a spinal MRI. In the meantime the urologist stops her on Detrol and switches to Enablex along with low dose antibiotics to fight off anything that might be causing her inflammation. Kidney function tests all normal. PVR normal. Complement system normal. She also started complaining of headaches that dont go away along with blurry vision. we do the mri and it is normal. Right now we are waiting for an appointment for a brain MRI. I have been going nuts trying to figure out what this could be.

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  • This all started almost a year ago when my then 3- year-old suddenly started to complain of pain when using the bathroom. SHe had been potty trained over a year and was wetting day and night. Her pediatrician was convinced that it was a UTI and sent her home with antibiotics. When the culture came back negative, he told me to bring her back in to get checked out again. Told me she had an over active bladder and had to see a pediatric urologist, 10-month wait!!! In the mean time he prescribed Ditropan to releive the symptoms. Several months later at her checkup, the doctor decided to do an ultrasound and VCUG. Urinalysis shows trace blood. Ultra sound showed inflammation, VCUG was completely normal. Which was a relief since she had hydronephrosis as a baby. The pediatric urologist decided to see her sooner. He made her do a voiding diary and found that when she did make it to the toliet she couldnt hold more than 2 ounces. He prescribed Detrol and sent her home. Over time her teachers at school along with mself started noticing that she suddenly has been VERY clumsy. Falling all the time. Her doctor sent her for a spinal MRI. In the meantime the urologist stops her on Detrol and switches to Enablex along with low dose antibiotics to fight off anything that might be causing her inflammation. Kidney function tests all normal. PVR normal. Complement system normal. She also started complaining of headaches that dont go away along with blurry vision. we do the mri and it is normal. Right now we are waiting for an appointment for a brain MRI. I have been going nuts trying to figure out what this could be. What is her diet like? What kinds of foods does she eat? How are her stools - how frequent and what is the quality (loose, hard, etc). How much water does she drink and does she drink other beverages? Does she suffer from ezcema or other rashes? How is her sleep? I can't believe the meds she is on - these meds have NEVER been tested for young children! The blurred vision and headaches are a side effect of the enablex...what antibiotic is she on? I can't stand that doctors put young children on antibiotics when there is NO evidence of an infection - this is setting her up for future problems with her immune system!:confused: Please research candida overload - has your daughter been on multiple courses of antibiotics? It is very likely that candida overload is causing her urination issues, and continued antibiotics will make this problems much worse. IME a good gentle candida cleanse may really help - a qualified naturopathic pediatric doc may help you. Please consider a holistic approach to your daughter's problems. Homeopathic remedies may be very effective. I have used homeopathic remedies for both my kids since they were babies and they really work and are not toxic at all. Cantharis is used for urinary problems. At the very least please get your little one on a good quality children's chewable PROBIOTIC to help rebalance her vaginal and intestinal flora. You can find this at any good healthfood store...get the best quality one you can - I like Nature's Plus, and Jarrow brands. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I assume you've had her eyes tested??? with the blurry vision and headaches.. and an eye issue could cause clumbiness too. If so.. I suggest to get a second opinion just to make sure. Just in case these issues are unrelated to the bladder one My own daughter had blurry vision (complaining she couldnt see the blackboard at school) and was getting headaches. I took her to one eye doctor who couldnt work out what was wrong but thought something was.. so she then got sent to a childrens eye doctor. The childrens eye doctor told me she was making it up and she didnt have any eye problem and to ignore her when she said she couldnt see well. My poor child went many years then with an undiagnosed eye issue which affected her ability to do her school work (along with suffering headaches etc etc). She finally was correctly diagnosed (after 5 yrs?) and it turned out she truely couldnt see well. She now wears glasses and dont have any issues any more. So hence im suggesting maybe even getting a second opinion on her eyes. My daughter ended up having to get special help all throu school cause of her eye issue misdiagnoses............ i agree with what the other said about making sure it's not her meds causing the trouble.
    taniaaust1 2267 Replies Flag this Response
  • She is a very healthy eater... loves vegetables and meat. Never eats junk... she occasionally has a 7up. We dont allow her to have caffeine... so chocolate is something she doesnt eat...except at grandma's where my rules dont apply. Her stools are regular(daily+) and firm but not hard. As for Rashes, she does have strange patches in her elbow. Also has dry skin behind her ears that Ive been putting neosporin on for several months, the skin peels off and bleeds. Sleeping has never been an issue, when she looks at the clock and sees its almost 8, she tries to use the bathroom, brushes her teeth and goes off to bed. Doesnt wake till 7 am. As for infections, she has NEVER had a positive test for any type of infection...that also includes she has never had an ear infection, strep throat or respritory infection. being on antibiotics for over 4 months, doesnt seem like a good idea. I stopped giving those a few weeks ago. I do still give her ENablex to help with the bladder inflammation. It could help so it doesnt keep contracting for no reason. I agree about the meds causing the blurred vision. The headaches have been around since before the new meds. I have always ignored it because Ive always thought she is just being dramatic. I new they were serious after I took her to see Hannah Montana, she wanted to leave because her head hurt. For a 4 year old to leave her favorite icon, I know it's for real. When i told the doctor about the blurred vison, she looked in the back of her eyes, insisting she has to have a MRI of her brain. I still want to take her to the optometrist, just in case. She hates to chew things...is there a probiotic you could recommend that she could swallow. Thank you for all you help
    nessiekools 4 Replies Flag this Response
  • She is a very healthy eater... loves vegetables and meat. Never eats junk... she occasionally has a 7up. We dont allow her to have caffeine... so chocolate is something she doesnt eat...except at grandma's where my rules dont apply. Her stools are regular(daily+) and firm but not hard. As for Rashes, she does have strange patches in her elbow. Also has dry skin behind her ears that Ive been putting neosporin on for several months, the skin peels off and bleeds. Sleeping has never been an issue, when she looks at the clock and sees its almost 8, she tries to use the bathroom, brushes her teeth and goes off to bed. Doesnt wake till 7 am. As for infections, she has NEVER had a positive test for any type of infection...that also includes she has never had an ear infection, strep throat or respritory infection. being on antibiotics for over 4 months, doesnt seem like a good idea. I stopped giving those a few weeks ago. I do still give her ENablex to help with the bladder inflammation. It could help so it doesnt keep contracting for no reason. I agree about the meds causing the blurred vision. The headaches have been around since before the new meds. I have always ignored it because Ive always thought she is just being dramatic. I new they were serious after I took her to see Hannah Montana, she wanted to leave because her head hurt. For a 4 year old to leave her favorite icon, I know it's for real. When i told the doctor about the blurred vison, she looked in the back of her eyes, insisting she has to have a MRI of her brain. I still want to take her to the optometrist, just in case. She hates to chew things...is there a probiotic you could recommend that she could swallow. Thank you for all you help You can find a liquid probiotic in the refrigerated section of your local healthfood store, if you have one. I think American Health is a brand I have used in the past. Glad to hear she hasn't been on too many antibiotics and it doesn't sound like she has food allergies, although the rashes could point in that direction. If she consumes a lot of dairy in the form of cheese and milk this may be an issue... Candida may still be an issue, but most doctors don't look for this or believe it is a problem in children. A good website to look at is www.candidasupport.org for info on candida...I like their product, Threelac, but please know I am not affiliated with this site in any way, and just use it for informative purposes. Please try colloidal silver to use topically for her rashes. It is incredibly helpful for fungal/bacterial/microbial skin disorders. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • As for Rashes, she does have strange patches in her elbow. Also has dry skin behind her ears that Ive been putting neosporin on for several months, the skin peels off and bleeds. sounds like she has mild eczema too, those two places are common places to get it. http://www.patient.co.uk/showdoc/27000768/
    taniaaust1 2267 Replies Flag this Response
  • After rereading my original post, I realized I forgot 2 important facts. She was diagnosed with hypotonia or low muscle tone when she was 2. I got the good: "Let's see how she does" line. Also, she lost her deep tendon reflex in her knee. That lead to the spinal MRI. As for towers or Electro Hypersensitivity. I read the links. The symptoms seem so broad. We dont have WIFI nor and towers near us. A doctor looked at her rashes once, said it was eczema and told me to put intense lotion on it. Never helped.
    nessiekools 4 Replies Flag this Response
  • There is very likely an association here between the former hypotonia and the pelvic floor muscles which largely control bladder tone. I would doubt that it's an overactive bladder as much as it is a weak bladder. I would also ask whether there has been any weight gain and any difficulty with behavior or cognitive function. The onset and gradual resolution of hypotonia, recent onset of clumsiness, changes in vision that accompany her enuresis would make me suspect that this might be a genetic disorder, depending upon your response. When you say that she complains of blurry vision, precisely how does she explain this to you? Is there any evidence of esotropia, an eye that seems to turn inward. In other words, I want to be certain of her understanding of the term blurry. Certain conditions can cause visual symptoms, the nature of which may be difficult for such a young child to accurately describe. Tell me a little more about her development, whether she seems delayed or is alternatively very engaging and learning at an age-appropriate level. I believe that there may be a connection here depending upon your response that would suggest the need for genetic tests. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • I have visited this forum on occasion and after reading all the responses by the same people over and over about yeast and pro this and pro that, and the cell phone thing - that just takes the cake. It seems like there are doctors on here that try to help but you have to sift through all the nonsense to find it. These people with all their cracked up ideas need to get out of town and let the doctors help these people. I know I wouldn't give my kid one solitary thing being recommended by these people and I think a lot more of my children than to play around with junk thinking it will cure them.This is a good place to visit and I like reading the questions but these people answering need to know this isnt a health food forum but people who are sick or have kids that are sick. So go somewhere else with all that junk about eating this or that and rubbing stuff all over you thinking it will help.Dont make things worse. Im sure your nice people and such but you need to stop saying things to people that are not medical like as if they can chew a bunch of herbs and it will cure them. Donna
    Anonymous 42789 Replies Flag this Response
  • JCottle... I may have mislead you to think that the hypotonia is resolved. She was diagnosed through a developmental pediatrician she went to see when she was suspected of having autism. The muscle tone has always been an issue, just never thought that it could be of any importance to her bladder problems. Makayla describes her vision as "the words look like I keep shaking my head and it wont stop" She is very articulate and intellegent. She is very anti social with kids at school. Will not play with anyone, mostly sits by herself. She also did loose almost 5 lbs. when this started. I have been giving her pediasure daily, under her docs approval. Her behavior has not changed much. She is a little odd, what 4 yo isnt? She is very sensitive to everything. Crying if her toys dont lay perfectly in their bin, jacket hood not laying flat. She also has a problem with pulling out her hair since she was a baby. She now says that it makes it feel good. Along with her odd rocking of her pelvis. A stint of RTA was suspected as a baby because of low levels of bicarb and a positive anion gap. What ever that means. But it never panned out to be anything i guess. thank you for the info on the genetic test posibility. Which would you think it could be, or more of a general need to get tested?
    nessiekools 4 Replies Flag this Response
  • JCottle... I may have mislead you to think that the hypotonia is resolved. She was diagnosed through a developmental pediatrician she went to see when she was suspected of having autism. The muscle tone has always been an issue, just never thought that it could be of any importance to her bladder problems. Makayla describes her vision as "the words look like I keep shaking my head and it wont stop" She is very articulate and intellegent. She is very anti social with kids at school. Will not play with anyone, mostly sits by herself. She also did loose almost 5 lbs. when this started. I have been giving her pediasure daily, under her docs approval. Her behavior has not changed much. She is a little odd, what 4 yo isnt? She is very sensitive to everything. Crying if her toys dont lay perfectly in their bin, jacket hood not laying flat. She also has a problem with pulling out her hair since she was a baby. She now says that it makes it feel good. Along with her odd rocking of her pelvis. A stint of RTA was suspected as a baby because of low levels of bicarb and a positive anion gap. What ever that means. But it never panned out to be anything i guess. thank you for the info on the genetic test posibility. Which would you think it could be, or more of a general need to get tested? Ive been studying up on Autism lately as my doctor believes I have a form of that (Asperger's). From my recent research on it.. im sure I read that in little ones.. hypotonia is common in autism. the other things you say she does certainly sounds like she may have autism. (and something else on top?) Clumbiness is a sign of autism too. Tony Attwood is one of the world experts on Asperger's and he's got a great book out which talks about all this. (I cant currently share the name of it cause i have it on loan to someone). And so is the other behavioural issues you spoke about. If it is Asperger's, it usually improves as child gets older.. thou ive read at some websites about some getting worst. (so new clumbsy symptom could be due to it.. things like stress can make it worst for a while.. hence starting school etc). It is recommended that these children have therapy from a young age as they can have much trouble adjusting to the "normal" world and associating with people etc. They are "hard wired" differently.. .have a different way of thinking than normals... Austistic children tend to be more sensitive to meds than normal children. Maybe there are some other things which are more common in Autistic children?? so maybe a specialist in Autism could help??? I suggest you take her to see one anyway for the Autism.
    taniaaust1 2267 Replies Flag this Response
  • Austistic children tend to be more sensitive to meds than normal children. And more sensitive to foods and chemicals as well.DOM
    acuann 3080 Replies Flag this Response
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  • Have you checked out for Autism or maybe Asperger's Syndrome?
    Anasthasia 22 Replies Flag this Response
  • There is very likely an association here between the former hypotonia and the pelvic floor muscles which largely control bladder tone. I would doubt that it's an overactive bladder as much as it is a weak bladder. I would also ask whether there has been any weight gain and any difficulty with behavior or cognitive function. The onset and gradual resolution of hypotonia, recent onset of clumsiness, changes in vision that accompany her enuresis would make me suspect that this might be a genetic disorder, depending upon your response. When you say that she complains of blurry vision, precisely how does she explain this to you? Is there any evidence of esotropia, an eye that seems to turn inward. In other words, I want to be certain of her understanding of the term blurry. Certain conditions can cause visual symptoms, the nature of which may be difficult for such a young child to accurately describe. Tell me a little more about her development, whether she seems delayed or is alternatively very engaging and learning at an age-appropriate level. I believe that there may be a connection here depending upon your response that would suggest the need for genetic tests. Best regards, J Cottle, MD A new development in my daughters bizarre symptoms. She is finally going to see a genetics doctor. It is strongly suspected that she has a rare form of dystonia (Segawa's). After seeing about 15 doctors in the last couple of months, she was finally referred to Vanderbilt Neurology, where the diagnosis was suspected. No real test for it, other than try out the meds, doing a LP and DNA test. Will know more soon, thank you J Cottle for the info.
    nessiekools 4 Replies
    • November 4, 2009
    • 10:42 PM
    • 0
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  • Take your daughter to an Environment Doctor, that is the only thing that helped my son. Google Environment Doctor in your area, they are few and far between. The one I took my son to, was Dr. Robbins in Boca Raton Florida, he is a miracle worker. My son is now 13 and wouldn't be with me without him!
    Anonymous 42789 Replies
    • November 5, 2009
    • 00:07 AM
    • 0
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