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Old 09-16-2008, 03:38 PM - Thread Starter
 
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You poor ladies will be sick of me by the end of the week.


Since looking up my daughters stimming and finding out that it can be a marker for ASD i have been skimming the internet like no tomorrow. I just happened apon a site about yeast over growth.....

My daughter was diagnosed with Bladder reflux when she was 18 months old. She was in the hospital for a bad UTI. Since THAT time over a year ago now she has been on DAILY antibiotics! Fast forward the last year. She's been on the meds every day. She had another bad UTI in July that landed us in the hospital because her body RESISTED the treatment for 4 days. She just had her second proccedure to try and correct her bladder reflux ( non invassive proccedure, a bulking agent is injected to her bladder to try and correct it) this last week. And since then i told my husband i want to take her OFF OF the meds because i am afraid if she gets another UTI we will be dealing with resistance again.

Ok sorry this is kind of all over the place, i feel so....i dont know. So what i have come up with so far ( until the lady to come out to my house calls me to set up a time to get the process started) on what my daughter does or has done for the last year or so is this.

Stimming when excited ( arms and legs go straight and shake)
Goes up on toes when excited
Very fearfull of loud noises, or things that make loud noises
Fearful of being chased of falling
Enjoys watching the ceiling fan and my husbands work
lines up magnets on fridge, loves to stack blocks and crash them down
Scratches at scabs until they bleed
Loves to make up her own words.
I just recently treated her little feet for athletes foot. Yeast related?

Now being new to this i dont know what is normal for a two year old and what is considered a concern. She is my only child. Right now i want to know is if this could of been caused from a yeast over growth?
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Old 09-16-2008, 04:36 PM
 
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There are lots of possibilities here. My own daughter's multiple health problems probably started with antibiotics. The loss of beneficial bacteria in the intestines eventually led to "leaky gut" syndrome which can have multiple manifestations from skin irritations to exacerbating atypical neurology.

I would encourage you to investigate alternative therapies. Daily antibiotics in a tiny body...makes me shudder.
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Old 09-16-2008, 04:52 PM
 
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Athlete's foot IS a fungal infection. And if it goes up north, it's either diaper rash or yeast infection or both. So, yeah, that one is DEFINITE.
I read in Parents, I think, that there are docs trying NOT to use daily antibiotics for persistent UTIs, because supposedly they don't work. And if she's developing resistant infections, that's a bad sign.
The blocks thing is normal two year old stuff. The fan might or might not be - Brendon (my just-turned-two year old) LOVES ceiling fans, but he also might have ASD.
Gotta go... HTH.
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Old 09-16-2008, 07:49 PM
 
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Take a breath.

First, I understand your concern. I have a kiddo who is on the spectrum. By two I was very concerned about him. I do understand. And I know how hard it has to be to know what's typical when you only have one. (I kept looking at my other child, Andrew's twin, at that age and thinking maybe he's got autism too...how would I know since I can only compare him to his brother). He doesn't have autism as it turns out. But he did a lot of weird stuff just like you describe...like many two year olds do. Lots of kids have sensory issues and every single thing you describe is sensory in nature. Autism is bigger than that.

Some autism signs (no child would have all) at two:
1. Does she consistently respond to her name?
2. Does she use non-verbal communication--does she point? Shake her head yes or no? Wave?
3. Does she combine two words in sentences (like "no go" or "more bubbles")?
4. Does she look to you when she's not sure what to do?
5. When you show her a new toy or something new--does she look to you, to toy, back to you?
6. Does she play with toys in a typical way? Are you seeing some pretend play?
7. Can she imitate you?
8. Does she play back and forth games with you?


My point is that while yes autistic kids have sensory issues not all kids with sensory issues have autism by a long shot. And there isn't anything on your list that makes me read it and think autism specifically. There may be more (so my questions above) but almost all of what you mention is very typical at two. And if she's beyond typical in her presentation then she may have some sensory stuff. Lots of kids do. My non-autistic son did/does. He's never had an antibiotic.

http://www.childbrain.com/pddassess.html Here is a link for an assessment for autism. I think two is a bit young for this but look at it because you'll see what types of things are markers. Play around with it and you'll see you have to have quite a few in the different areas to even score mild or possible.

Yeast won't cause autism. Do you want to test for yeast or treat and see what happens? I can give you information either way.

Since she has all those antibiotics in her history I would want some good probiotics in her. Florastor is good for yeast and the antibiotics she takes cannot kill it. So it would be my top recomendation for her given the antibiotics usage.

MamaLuvsYa and ShadowLark, using antibiotics for kidney or bladder reflux isn't the same as using it for a bunch of UTI's or ear infections. Antibiotics are over-used in our country when they aren't needed but that doesn't mean they are never needed or aren't used wisely in some situations. OP, try posting a thread about the antibiotics for the bladder reflux and the resistance issues. I think others here may be able to give you "been there done that" thoughts. I do know that at least for kidney reflux the continuous antibiotics effectiveness is being questioned and there are maybe alternatives. I'll look up bladder. Resistance is a concern anytime with antibiotics. The problem in my research is actually biofilms that protect the bacteria. I don't know exactly how to handle it though.

edited to add: here's a link but I'm confused by kidney vs. bladder reflux so not sure it is pertinant. http://www.medscape.com/viewarticle/562433

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Old 09-16-2008, 08:39 PM
 
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I'd, as usual, second what Grace said, and also add that if you look on the internet for yeast overgrowth, you will find thousands of nonscientific websites blaming it for every condition from A-Z.

So I'm very skeptical when I hear yeast being blamed for a condition, particularly behavioral ones. However, it makes perfect sense to try to avoid the resistance, and to help her body replace normal bacteria killed by the antibiotics through supplements. Make sure you choose one that has a variety of flora, not just acidophilus.

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Old 09-16-2008, 09:00 PM
 
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You might find this thread in the Allergies forum useful and also this one in the nutrition forum, both have a lot of info on yeast.

t
 
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Old 09-16-2008, 09:04 PM - Thread Starter
 
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Grace, thank you. Thank you!

There is to much information and not enough guidence in this area for parents. You log onto the internet and you could self diagnose your child with 10 different things with one symptom.

She has bladder reflux. Not kidney reflux. Either way we have pulled her from her antibiotic just for the simple reason of the resistance that she showed with her last UTI. Thank you for the suggesting a good probiotic, i will for sure check that out!!

I took the test on that website and the score at the bottom had said "101 Moderate PDD?" PDD? She will be three in a few months so i dont know if that will alter the scoring?
The lady from Early steps finally called me back and she will be coming to see my daughter next week Tuesday.
What can you do for your child that has a sensory issue? Do children get diagnosed with such things?

Please excuse my many questions, and i thank you ladies for you answers and patience. I am new to all of this and i am just trying to find things that i can do to help my precious baby girl.
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Old 09-16-2008, 09:12 PM
 
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Originally Posted by Graces_Mommy View Post
Grace, thank you. Thank you!

There is to much information and not enough guidence in this area for parents. You log onto the internet and you could self diagnose your child with 10 different things with one symptom.

She has bladder reflux. Not kidney reflux. Either way we have pulled her from her antibiotic just for the simple reason of the resistance that she showed with her last UTI. Thank you for the suggesting a good probiotic, i will for sure check that out!!

I took the test on that website and the score at the bottom had said "101 Moderate PDD?" PDD? She will be three in a few months so i dont know if that will alter the scoring?
The lady from Early steps finally called me back and she will be coming to see my daughter next week Tuesday.
What can you do for your child that has a sensory issue? Do children get diagnosed with such things?

Please excuse my many questions, and i thank you ladies for you answers and patience. I am new to all of this and i am just trying to find things that i can do to help my precious baby girl.
If you've pulled her off the antibiotics Klaire labs make really good and potent probiotics too. I really like the florastor for yeast though and as I said on antibiotics it is especially good because it survives the antibiotics.

Moderate PDD...did she score "points" in three areas? Age shouldn't matter. Scoring moderate there definitely puts her in the maybe autism camp. Given her score I'm assuming there are issues beyond the sensory stuff. Autism isn't the end of the world. It can feel like it at first but it isn't.

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Old 09-16-2008, 11:17 PM - Thread Starter
 
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I dont know what she scored in each section, i just filled it out and looked at the score at the end.

I dont feel at all that it would be the end of the world if she were to get "labeled" mildly autisic. She's still my baby girl to me

I just want to be able to guide her to the best of my ability. Just like any other loving parent. Thank you again so much for the suggestions on the probiotics. And thanks again for being so patient with my newness. I really appreciate it.
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Old 09-16-2008, 11:37 PM
 
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Yes, you can get a diagnosis of Sensory Processing Disorder but it's not in the DMSV, as far as I know, and is not a technical medical definition. The autism spectrum is so wide that the districts I worked in had a category for "autism-like condition" which covered Autism, Asperger's Syndrome, PDD, PDD-NOS, and SPD with communication delay.

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Old 09-17-2008, 12:08 AM
 
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I thought I might chime in about the reflux. I'm also a little confused, about the difference b/w bladder and kidney reflux, but you might want to look at this thread, it has some links to medical studies about using probiotics instead of abx in treating kidney reflux.

HTH
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Old 09-17-2008, 10:28 AM - Thread Starter
 
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Thank you for that link about abx. I will for sure read it. I dont know much about kidney reflux, but with bladder reflux its where there is an under devolped "valve" that always urine to be sucked up, or flow back up instead of empting out of the bladder completly like it should.

Thank you for telling me about what can be diagnosed. I will be curious to see what the lady from Early steps suggests.
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Old 09-17-2008, 10:35 AM
 
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I dont feel at all that it would be the end of the world if she were to get "labeled" mildly autisic. She's still my baby girl to me
You are way ahead of where I was emotionally at the start of our journey! Yay!

On the diagnosis thing. In my experience EI itself and the therapists were not able to assess for diagnosis of anything. I did have therapists tell me no way Andrew was autistic but they weren't qualified and really shouldn't have spoken on the subject (and they were wrong as it turns out). But legally EI isn't able to actually diagnose. A good OT though should be able to tell you if there are sensory issues. EI did send us to a psychologist for an autism assessment where we got our diagnosis. I don't know where your head is exactly on all this but I just didn't want you to expect that EI would be able to tell you yes/no as far as diagnosis stuff.

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Old 09-17-2008, 11:38 AM
 
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Thank you for telling me about what can be diagnosed. I will be curious to see what the lady from Early steps suggests.
We've been down the same road, we saw the Early Intervention program first. I will tell you what I wish someone had told me at the time I was getting the EI program going for my son- go ahead and schedule an appt. with a developmental pediatrician or university program who can do a diagnostic evaluation. There is often a long waiting period to see a dev. ped. or other specialist who can actually diagnose the issue.

State EI programs can't diagnose any condition, the just determine if there is a delay and provide minimal therapies such as speech and occupational therapy once a week. You NEED a diagnosis to get more/ more frequent services for your child. If she is diagnosed with autism you can apply for SSI for her and then she gets on medicaid regardless of your income so you don't have to worry about going broke to pay for services for her. Just a little BTDT advice.

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Old 09-17-2008, 11:54 AM
 
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I just want to tell you how awesome I think you're doing! :

I think, no matter what the result is on the autism or the yeast or whatever, you're doing GREAT because you aren't leaving any stone unturned. Good for you! (And good for your girly! )

We're on a similar journey -- our dd is having some health issues and she has an appt w/ an alternative doc this week. She's very excited and REALLY looking fwd to it. After she is seen, we'll get dh, ds1, me, and ds2 in to be seen, as well.

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Old 09-17-2008, 11:56 AM
 
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If she is diagnosed with autism you can apply for SSI for her and then she gets on medicaid regardless of your income so you don't have to worry about going broke to pay for services for her. Just a little BTDT advice.
I need more info on this. Please feel free to PM me on the SSI & medicaid ESPECIALLY.

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Old 09-17-2008, 01:51 PM
 
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Just to clear up some confusion here. It's called vesicoureteral reflux and is urine refluxing backwards from the bladder back towards the kidneys. Prophylactic antibiotics are almost always prescribed because of the very high risk of dangerous kidney infections occurring. The goal is to keep the kidneys functioning long-term.

http://www.mayoclinic.com/health/ves...reflux/DS00999

I am not up-to-date on the research for it though and there may be newer research suggesting that the daily antibiotics are not helpful. I wanted to ask if your doctor knows you stopped the antibiotics; its unclear from your posts if that was a joint decision or one you made unilaterally. I can definitely understand your concerns about the daily antibiotics, but if you haven't discussed it with your doctor I really think you need to. If you have already discussed it them just ignore me.

Probiotics are always very important when taking antibiotics so the advice you've gotten from other mamas here is great and will give you a good start towards rebuilding your daughter's healthy gut flora.

This whole special needs mama thing can really suck sometimes can't it? Especially when you think that what is helping with one problem may be creating another problem.
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Old 09-17-2008, 02:09 PM
 
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We've been down the same road, we saw the Early Intervention program first. I will tell you what I wish someone had told me at the time I was getting the EI program going for my son- go ahead and schedule an appt. with a developmental pediatrician or university program who can do a diagnostic evaluation. There is often a long waiting period to see a dev. ped. or other specialist who can actually diagnose the issue.

State EI programs can't diagnose any condition, the just determine if there is a delay and provide minimal therapies such as speech and occupational therapy once a week. You NEED a diagnosis to get more/ more frequent services for your child. If she is diagnosed with autism you can apply for SSI for her and then she gets on medicaid regardless of your income so you don't have to worry about going broke to pay for services for her. Just a little BTDT advice.

This is true but there are income guidelines for Medicaid even if your child is considered disabled through SSI. The income guidelines are much, much higher and I'm sure we'll never reach them but they are there. I know people who get Medicaid through disability but they do pay because they make quite a bit of money.

Also, under the age of 3 if your child has qualified through developmental delays to receive services through EI you do not need a diagnosis to continue or receive more services. Not under age 3. Once they're in they're in and it's up to the supervisor to reassess the child's needs and determine if they need more services than they're getting.

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Old 09-17-2008, 03:06 PM
 
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I can definitely understand your concerns about the daily antibiotics, but if you haven't discussed it with your doctor I really think you need to. If you have already discussed it them just ignore me.
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Old 09-17-2008, 03:47 PM - Thread Starter
 
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I am not up-to-date on the research for it though and there may be newer research suggesting that the daily antibiotics are not helpful. I wanted to ask if your doctor knows you stopped the antibiotics; its unclear from your posts if that was a joint decision or one you made unilaterally. I can definitely understand your concerns about the daily antibiotics, but if you haven't discussed it with your doctor I really think you need to. If you have already discussed it them just ignore me.

Probiotics are always very important when taking antibiotics so the advice you've gotten from other mamas here is great and will give you a good start towards rebuilding your daughter's healthy gut flora.

This whole special needs mama thing can really suck sometimes can't it? Especially when you think that what is helping with one problem may be creating another problem.

No we have not talked with her Urologist on the matter. I put a phone call into his office and he is unreachable until monday morning, meaning on vacation. I left a message of concerns with his nurse telling them i felt the meds will do her more harm than good because of her reisistence she has buildt up. Meaning if she were to get anouther UTI i would prefer for it to be treated easily at home instead of a week in the hospital on double meds via iv. I have a feeling that he will go against the grain with this on me. Hopefully i am wrong.

I appreciate you girls letting me know that Early steps or EI will not be able to diagnose her! This is good to know. I am un clear though, will the people that they refer me too ( if needed) be able to diagnose her, or is this a person i need to seek out on my own? If i need to seek out my own therapist what good is EI? If they cant diagnose, but they can send her to specialist that cant diagnose either? Or do i need my own specialist to diagnose her and then tell the EI about it to get her coverage?

What link am i missing here?

Sbgrace: thank you for the comment, although between us mommies it seems to be getting harder and more overwhelming as i go. You laides sure have been a great support though Bless you girls!
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Old 09-17-2008, 07:11 PM
 
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The EI missing link: In most states EI provides an assessment of development. If the child is delayed a certain percent in one area or, usually, a different (lower) percents in two or more areas they receive services. Those services are therapy. So in Indiana for example where we live if a child has a 2 standard deviation delay in speech they receive speech therapy for free. Or if the child is one standard deviation in speech and one standard deviation in gross motor they receive speech therapy and physical therapy. Standard deviation is how far they are behind where a typical child is developmentally at their age.

The percents you have to be delayed to qualify and the services available will vary by state. Some states offer less than others. But therapy is what you receive. You shouldn't have to seek out a therapist if your daughter qualifies for therapy.

What an EI therapist can't (shouldn't) do is assess for something like autism. That's only because it is out of his/her expertise. They aren't qualified to assess it so to try to do that on their part is not ethical or helpful. It would be like this: a speech therapist can see a speech issue and suspect there might be a hearing problem. He or she of course is not an audiologist and can't actually diagnose a hearing loss. But she could refer you to an audiologist for assessment.

What, at least in some states, EI can do when a parent is concerned about autism is refer to someone who is qualified to assess. My son started early intervention at 6 months. At 2.5 they did a parent questionnaire for autism at my request. He had enough "red flags" that they sent him and paid for an assessment at our Children's Hospital by a psychologist specializing in autism. That's where he received his diagnosis. We did a private assessment too prior to that and also afterward just to verify the diagnosis.

In your place and given your daughter's age I would ask about this type of assessment at the beginning if you are interested in having autism looked at. If you are mostly concerned about sensory issues OT alone should be able to give you an assessement of sensory integration. She/he is qualified to do that type of assessment!

Around 2.5 here they start the process to transfer a child to the school system at age 3. We did get services right up to the day my son turned three. But I don't think all states run it the same way. I just mention since your daughter is so close to three years old. At three in most areas the schools take over. So get what you can out of EI as far as assessments while it's still available.

Hey I think that link I found on alternatives (and failure rates of daily antibiotics) was on that type of reflux. I just saw you can't view it clicking the link but I think the research might be really helpful as you approach the urologist. Go to goggle.com and type in bladder reflux +antibiotic resistance. It was the first hit--a medscape research article (published in urology journal) about the rates of failure of daily antibiotics, the problems of resistance, and alternatives with high success rates.

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Old 09-18-2008, 12:40 AM - Thread Starter
 
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Ok wow, yes that makes much more sense. That is much clearer!

I feel so "armed" with all of the information that you ladies have shared with me. I feel alot more prepared ( well as much as i can be) for Tuesday than i did two days ago.

Sbgrace thank you SO much for all of you input and all of the information concerning the abx. I am off to google that right now and get it ready for my daughters urologist. You girls are such a blessing!:
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Old 09-18-2008, 04:21 PM
 
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You mentioned your daughter had a surgery, was that a deflux injection? If so, you have much stronger case against abx. Some uros continue prophylaxis until after another VCUG, but b/c of the success rates, a lot of doctors will let you stop the abx, especially with a history of resistant infection.

I have some deflux/abx links somewhere, if I find them I'll pass them on.
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Old 09-19-2008, 10:29 AM - Thread Starter
 
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Yup, deflux is what she had about a week and a half ago. It was her second one actually. She started out with a grade 4,( out of 5) her first deflux brought it down to a 3, and in december we will find out what this one did for her. I am assuming it will at least bring it down to a 2.

That is the point i made with my husband, this last deflux surely will bring it down another level which in turn will help keep away UTI's that much more. That and her resistance she buildt up i feel pretty confident in telling the urologist that Abx just arent for us anymore. They are only harming her having a resistance.

I would appreciate any links you have. Thank you!
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