Testify about Naturopath- helpful, waste of money or miracle? Neuromuscular issue...

[warriormom]

I am interested in going to a naturopath for my 4 year old. She has been diagnosed with mild cerebellar ataxia (uncoordinated muscles), mild low tone, sensory issues and a speech delay (1 year). She can run, walk, jump etc. She would just be considered "clumsy" and a weak core. Drs think there is an underlying condition. She has had 1001 blood tests and will have an MRI. Only the ck test came out mildly elevated (120 over normal) which the doctor stated is "not clinically concerning".

 

All of this to say, I am considering taking her to a naturopath to go along side her ped. Neurologist, OT, PT and ST.

 

Can you tell me about your experience? What is your opinion about naturopaths- quack, genius or a help? Any condition that they found before a medical doctor?

 

Thanks!

[sbgrace]

In my experience my son with similar issues (and lots and lots of shrugged shoulders from doctors including a neuro and metabolic team who should have known better) did have an underlying condition. He was diagnosed with a metabolic condition at 3.5. His condition affects mitochondrial function and those aren't screened on newborn screenings. My son did have elevated CK levels.

 

What labs did you have? With mitochondrial issues kids can have normal blood and urine results especially if the body isn't under stress at the time the labs are drawn. Here is a thread I posted on another board about this after my son was diagnosed. My motivation at the time was that I knew there were other kids like mine who were being missed. Many doctors still don't know enough about mitochondrial issues to do even a proper assessment.

 

Our geneticist told me low tone is always chromosomes (other things would show that) or metabolic. It's just that we can't identify all the metabolic conditions yet (that's coming with all the advancements in DNA) and it doesn't always matter. In your daughters case it may well matter. It did for my son. He has benefited from treatment.

 

I can give you a name of an unofficial metabolic test you could have run by a cooperative doctor that might give you very good information and some official metabolic labs I would want run in your situation if they haven't been done. I think that unofficial test you could actually do without a doctor's help if you had to. I think you can get it privately. I don't know if your naturopath sort of targets specific things and treatments or looks broadly. We saw an Integrative Medicine doctor (this is an MD doctor but similar in that they do natural and complimentary medicine) who was very helpful. My son was already diagnosed metabolically at that point but he helped us with other things and I think he would have caught the metabolic signs if we had seen him earlier. Actually, I'm sure he would have.

[sbgrace]

I'm sorry. It double posted on me. But I wanted to add I know you may have already had metabolic labs. But in your situation I would continue in that area unless you've seen someone who really knows mitochondrial stuff particularly. I would still probably pursue it in terms of treatment even then based on what you wrote.

[warriormom]

Thank you!

 

We had a CBC, metabolic panel, ck test, other tests I am not sure of and a microarray genetic test. We will have an MRI in January. What is the name of the unofficial metabolic test? What type of treatment has really helped your child? We will be getting OT, PT and ST. Any advice on how I can help her in this time of waiting?

 

What do you plan on doing for school/homeschool for your 3.5 year old? Any threads or information on how to help a child's development with the challenges that they face?

[warriormom]

:) bump

[I.Dup.]

I think it really, really depends. I would search around for recommendations in your community for a highly rated naturopath. I paid $100 for one to tell me to "eat more vegetables" and I paid her even more for tinctures that she made up that did absolutely NOTHING for me.

 

But another lady in our community that does craniosacral work has been amazingly helpful. I would just ask around.

[sbgrace]

Here are the tests I would want run based on what you described:

 

 

The ones on this site are official metabolic labs that a doctor looking for metabolics/mitochondrial issues would run. Those doctors would run all the labs listed under "metabolic screening in blood and urine (all patients)" when the child has been fasting overnight. If those are clean but mitochondrial is still suspected they would be run again when the child is sick. The doctor who initially ran those labs (Cleveland Clinic) told me if the first two draws (fasting, then illness) were normal he would probably do a trial treatment on my son anyway because he had so many mitochondrial flags. My son's first labs, the fasting ones, were very abnormal so I don't really know how it would have went. The point is they can be normal, especially if the body isn't under stress, even if a child has a mitochondrial or related condition. That's why it's hard to get a good evaluation if you're not seeing someone who knows mitochondrial information.

 

From those what i would definitely want run are the Plasma Acylcarnitine analysis from that list and I'd run a coq10 level as well. If you run all those you'd have the basic metabolic labs but it would be hard for the average doctor to interpret what they mean. The non-official lab is this Metametrix Organix Comprehensive Our doctor (the Integrative Medicine MD/not the geneticists we saw) ordered this so our insurance reimbursed us. I'd expect a naturopath could order it but I don't know how insurance works with them/in Indiana they aren't covered. Anyway, you can order it on your own here as Organix Comprehensive Profile--Metametrix KIT. It's a urine test. It's expensive that way unfortunately but for my son it caught the metabolic/mitochondrial issues genetics had already diagnosed (with a lot more blood, urine, and expense).

 

In your case, though, it might be better to see someone who knows mito if you can. I don't know all the doctors who are good with it. The UMDF.org foundation can give you names of doctors who "do" mito if you contact them. We saw doctors in Cleveland and Indianapolis. I know there is a really good one in Houston Texas as well though we haven't seen her. I want to say she may do records consults on labs another doctor ran though I'm not certain of that. I know there are more though I'm not familiar with them. The UMDF would know who is nearest.

 

My son was diagnosed at 3.5. He's 8 now. He has had a lot of challenges. We did OT, PT, Speech, etc. like you're doing through early intervention. But when he reached 3 and the school system took over the program there was just not very good services. So I worked with him at home. We have also done private therapies as needed. I just tailor what we do with where his weaknesses are. In addition to the physical stuff he has developmental things (particularly atypical autism spectrum) so a lot of what worked for him would be different than your daughter I'd expect. However, the treatments for mitochondrial issues have helped him a great deal. You may find the same with your daughter.

[gardenmom5]

not all naturopaths are created equal (where their experience lies.) find one who specializes in the areas/related your dd is having issues in.

 

I take my diagnosed aspie/spd/?odd?/?add?/capd? (the ? are things the medical school teams said were maybe's) son to a ND who specializes in those issues.

 

his ND did far more detailed blood work than any other dr I or my son have ever been to. He's made amazing progress with her. more often he seems more NT than ASD. we've done three rounds of detailed bloodwork, and now it is looking like he has a hereditary genetic mutation that directly affects neurotransmitter/enzyme/vitamin absorption/production/utilization. It is treatable, sort of like a diabetic taking insulin. another son tested positive for the mutation, so we know it's in our family.

[GoVanGogh]

This is a timely post for me.

I have no experience with neuropaths, but our child was recently diagnosed with mild cerebellar ataxia and dystonia. We just started OT/PT for muscular control issues. He was in speech years ago, though I don't know if that was related to the cerebellum isuses. His case is very mild and his symptoms are so scattered that we have had a horrible time getting a doctor to take our concerns seriously. We are now on the right track, but I think we still only have pieces of the puzzle figured out.

I am leaving our long-time pediatrician, partly because I am frustrated with him over this but mainly so we can go to a doctor connected with a large children's hospital. I am hoping our new pediatriican will have more contacts and resources available.

 

What do you plan on doing for school/homeschool for your 3.5 year old? Any threads or information on how to help a child's development with the challenges that they face?

My child is much older.

On one hand, it may be good that we are late in diagnosing because we have never held him back. We knew what things he excelled at and focused on those while trudging along, working on his weaknesses.

I do now need to make some major changes in our homeschooling and I am overwhelmed at the thought. (Was waiting to start my own thread until after the boards moved over.)

Some of the things we are looking into are tai'chi and yoga. I don't know that yoga is good for low tone, though. We are also doing light weight training. I have worked on my child's hands for years with home ec projects - kneading bread, moving thickened jello from one bowl to another with a turkey baster, using a piping bag to frost cookies, etc.

[GoVanGogh]

double post

[warriormom]

Any good or bad experiences with naturopaths working with a neurological issues?