NUTRIENT LEVEL TESTING - Anyone had it done?

[MamaRabbit]

Hello, I am wondering if anyone has had nutrient level testing done (either themselves or for their little one). We are considering it to help Charlie with his development as research seems to be telling us that there are links between neuro transmitters (messages from the brain) and unhealthy "guts"/insides. We are not expecting a cure for Charlie's development problems but it's basically about helping the body be in peak physical condition so the neuro transmitters can function and process information to the best of its ability. I was thinking perhaps making sure his nutrient levels at their optimum levels may also be important after 2 years on fairly heavy duty medication (Charlie just came off his meds last Saturday - woo hoo!)
:smiliedance:
I don't see it being a risk, as it is medically and scientifically researched but it is an expensive process so I would be interested to hear if anyone found this nutrient level testing successful (whatever the reason be may that you had it done). Even if it was just for general health and well being.

Many thanks, :confused:

[kiwibird27]

Haven't heard of it but am definately interesting in hearing how you go. I know when my daughter is in hospital on TPN (vein fed) she develops well and really grows and thrives, when she is just on milk she still develops but alot more slowly. TPN guarantees her body is getting everything she needs regardless of her underlying metabolic condition

[Lunar]

I will be interested to hear how you go too.

Please, keep us informed on what you fond out and if you choose to go with it, how it goes etc.

:detective:

[MamaRabbit]

Hi. Thanks for replying. I've done quite a bit of research and it seems to make alot of sense. I think they call it biomedical therapy or something like that. We are dealing with qualified Paeds and scientists so it is not hocus pocus herbs and concoctions. If/when we go ahead with the full nutrient test, it is sent to USA for analysis, the Paedatrician then works alongside specialist pharmacists who create the exact nutrients required, at their optimum levels, for Charlie's body so it is quite a science to re-create what the body needs. Apparently when the optimum levels are reached the body processes information very differently.

Anyway I'll keep you posted. It will take a little while to get going but I'll let you know how we get on. We are excited to give it a go anyway.

[jessgray]

:thumbsup: good luck:fingerscrossed:

i've only had my iron and vitamin levels tested by my gp they were blood tests.your reserch sounds very intresting. keep us posted

[Lunar]

May I ask what your son's special needs are?
Not being nosey sorry, but just would like to know if this would be beneficial for my DD1 who has Down Syndrome, and for all my friends children who have various disabilities.

[MamaRabbit]

Hi there - no not nosy at all I've posted elsewhere on the site so I didn't want to bore you with our story if you already knew

Charlie was diagnosed with a seizure related condition called PNH (for short). Having said that, he has not had a seizure for 2 years since the first episode so the seziures are not our concern. I suppose the easy way to put it is that most neurological disorders tend to have development delay associated and as such Charlie has it in all areas - particularly motor. He is very bright and alert, engages with people, seems to know what he wants to do but often can't do it so the messages in his brain aren't doing their job properly.

He has made great gains in the last 12 months since we properly started early intervention in the way of physio, OT, speech and now that he is off medication I'm sure he will improve even more as the drugs did have side effects. His strength and focus has improved considerably since he came off them. I've been told that often kids with delay have varying nutrient levels, so they can only perform to the best that their body will allow, if we get him to optimum level for his body who knows what might be possible. If nothing else at least he will be incredibly healthy :)

We have been talking to the Paed about this testing with a view to specifically helping with his development.

Have a look at this site if you are interested in more: www.mindd.org. The Paed we saw is one of the founding members of this research group and apparently is quite well respected. We've been referred to him by a number of different organisations over the years.

Do you guys do early intervention? We see a group called Lifestart and are trying to get on the waitlist for Conductive Education which I hear is really effective.

[mummyof5]

Hi Elle,
I used lifestart before we moved up to the hunter. They are fantastic. I am really interested in this idea, as Jock's overall health has always been so poor.
Will mention it to the peads when I next see her.
Do you have any idea what the cost is likely to be??

[MamaRabbit]

Hi Kylie,

We were told if we get the full nutrient testing done it is around $1200. It is sent to the USA for analysis. As far as the making up of specific nutrients when the results come back, this is based on the results so I suppose it varies greatly. A compound pharmacist makes up the script (ie, so it is a personalised script made up of exactly what is lacking and not something that can be prescribed off the shelf) which is probably where the cost comes into it. It's very steep!

If you don't get the full testing done to start with I think it is a guessing game, they start you on some nutrients that might be lacking, then they test and try something else - in the long run it might turn out more expensive as the full test gives you the answers up front.

When you run it by your paed, I think it is called Biomedical Therapies, we saw a qualified Paed about it (Dr Underwood). If people don't know much about it they tend to think it is some herbal hocus pocus but from what I understand it is scientifically researched and based on nutrients that make up the body so it can't be all bad surely?? Well my theory is there is no harm in being as healthy as one can possibly be! Charlie, and others with troubles, probably need it more than the rest of us.

I have found loads of links about it: http://www.custommedicine.com.au/brain-function/
A friend of ours knows the pharmacist involved with our case, he works with the Mindd Org that I already sent you, but the above link talks alot about balancing the neurotransmitters and cleansing the digestive system which helps with brain function. I suppose it depends what delays or behaviours are being experienced. I know I don't think clear when I don't look after myself. We are willing to try anything as long as it doesn't harm our little rabbit. Our Paed said all of this can be done with a healthy child but the levels would vary greatly.

We have had Charlie on Cod Liver Oil, Zinc Drink and a Probiotic Powder for the past 2 weeks, perhaps its a coincidence but he just seems brighter and more coordinated which leads me to think if all his levels were at their optimum it might really help him.

My little Charlie is having a small op at the end of Feb to investigate his reflux and digestion so we've decided to get the testing done after that if all goes okay there.

I'm happy to keep you posted on his progress once we get the ball rolling. At least then you will have a real life case to decide upon.

Hope all this info helps....it's not easy finding all this info, it's not like these doctors need to advertise so I like to at least let people know what their options are so they can make up their own minds.

[mummyof5]

Thanks Elle. I had a really good look at the site after I posted to you, and am going to run it by hubbie when he is next home. It was suspected in the early stages that Jock has a metabolic condition of some sort, and he was tested for everything they could think of, but nothing married up. He would have high levels of one thing, but not of another, or not high enough to be specifically any particular disorder. However, the Professor did say to us, that they know more about metabolics than they are able to test for, so he may not ever get a diagnosis, even though he is pretty sure that Jock has a disorder of some sort IYKWIM:confused: .
But, he is also being tested for Fragile x syndrome (note to self, ring peads ofce tomorrow to see if results are back:) ), and he has alot of the behaviours for it, but is not a big lump of a kids like xer's usually are, and has other problems with his gut, so i find myself wondering if he could have both???? Could life be that cruel? Which then makes me wonder if I am accidently poisoning him by feeding him things I should'nt, or not feeding him things I should....it's doing my head in!:banghead:
Needless to say, when i saw that program i thought it might just do him some good. I will be very interested to se how you go.
All the best for little Charlie's op in Feb too.:)

[MamaRabbit]

Hiya, just an update. We have finally bitten the bullet....checked the bank account....and booked our test. They express post a kit & instructions out to us, which we should get tomorrow, we then do the urine test at home (a very concentrated early morning pee) then take it to the pathologist and get a blood test done (a 12 hour fasting test) - it then gets sent to the USA and the results sent to the Paed in around 20 days. I am so curious to hear what the report has to say. Apparently it is quite a lengthy and detailed analysis.

After speaking with the diagnostics chap today he said some of the nutrients will be diet related (too much/not enough), but many of the essential nutrients, plasmas, fatty acids, vitamins, nutrients etc...etc... are ones that the body makes on it's own (or in many cases where illness/delays are concerned the body has trouble making these on its own).

It's all fascinating stuff. I'll keep you posted in a month or so when we get the results.

[MamaRabbit]

Okay...an update on our biomedical therapy for anyone interested.

We received the results back today from a complete nutrient profile. We are yet to truly understand and make sense of the report (17 pages) with an additional 5 pages. The Paed could only tell us so much in the 45 mins we were there. I can however see at a glance that Charlie's body is really high (optium levels) in some areas and very much lacking in other areas. The report also breaks down some key areas of possible illness (red markers so to speak) and graphs the combination of nutrients, fatty acids, plasmas etc that contribute to a disorder, deficiency or illness of types...if that makes sense?? Some areas of the graph are very scientific and specific to particular disorders such as Autism and others are as simple as the body's ability to detoxify or how susceptible it is to fatigue. I'm learning as we go along so it is all new to me.

So the next step is to have a truly individual script made up of exactly what his body requires. All going to plan we should see some improvements in his general health and well being within 6 weeks, if something doesn't agree with him we will see it sooner than that.

It is a bit of a process, start slow, see how he goes, how his body absorbs the lacking nutrients and as we progress we can add other components to the mix. For example we have been prescribed a "base" script made up of all the core elements. If this goes okay we add the amino acids required etc..etc.. that way the body has a chance to absorb everything properly.

Who knows how we will get on, it's interesting none the less and I can't see it doing any harm to Charlie's body given we are only introducing things the body is made up of. I've heard good things about it from parents of children with different conditions and needs. From what I understand the "gut" is the key for seizure control, learning, development (alot of neurological and behavioural issues). Nothing ventured...nothing gained....if nothing else at least we can cross it off the list so we are not leaving any stone unturned.

I'm not expecting miracles, although Charlie's general behaviour is very good, any shift or change in development, learning ability, concentration, digestive health etc would be noticed no matter how small. This combined with all the other early intervention I do might help during these first 5 years of life where I am hoping to give him the best start he can get.

I know it will be a little costly but if we don't see any changes or improvements within 12 months at least we can say we gave it a shot.

If anyone has any experience with this form of therapy (positive or negative) I would love to hear about it.

Hope everyone is keeping well.

[Can I?]

Hiya

I don't really have any experience with the biomedical stuff, but know several people who have tried it for their autistic kids. A couple of them rave about it, and the others found it did little. I guess it just depends on the child and the disorder.

While we haven't tried the whole assessment thing, I have found that diet and nutrition make a HUGE difference to our DS. His behavioural problems are totally controllable with diet and supplements which has made a major difference to our lives. His clarity of thought seems to be so much better also which means his development is going ahead in leaps and bounds.

I am wishing you all the luck in the world, that your little guy reacts well to the treatment and that it helps him to reach his full potential :fingerscrossed::fingerscrossed:

[MamaRabbit]

Thanks for your well wishes CanI? It does seem to make sense. Nothing lost in giving it a shot anyway.

Today we received our first script - I suppose it is like an intense multivitamin. It is in a powder form and is made up of things like Vitamin A, C, D, E, B1, 2, 3, 6, 12, Folic acid, Biotin, Pantothenic Acid, Magnesium, Selentium, Manganese, Chronium - levels of which are to suit DS. It cost me $250 for a 3 month supply (twice per day).

So let the countdown begin, if all goes to plan we should see some improvements in health in the first 6 weeks. After which we will introduce the amino acids missing to try and complete the picture.+