Next Step?

[Guest guest]

I would add carnaware first, then do an IgG/IgE food panel and start

the gluten-free casein-free diet with all allergens removed as well

after that. The gfcf diet may help him, but often parents do not see

the potential of it because their child is reacting to so many foods

they are eating. So it's worth checking for reactions before starting.

With carnaware we saw positive changes within the 1st two weeks, so I

don't believe it's something that you need a long trial period with

before making other changes.

>

> Our 4.5 year-old son has been diagnosed with both apraxia and ADHD.

> In the year and a half since he was diagnosed with aprxia, he has

> gone from a 20-30 word vocabulary to speaking in sentences, using

> verb teses, using pronouns and prepositions! We attibute this

> success to fish oil supplements and lots of help from SLPs,

> teachers, teacher's aides, OTs, and a great babysitter.

> Approximately eight months ago we began to be aware of serious

> problems with social behavior, attention, and impulsivity. At this

> time, we played with fish oil dosages/brands with some improvement

> but not enough. We have added Focalin and again are seeing

> improvement but still feel there is lots of room for more

> improvement in intelligibleness and behavior. Any suggestions on

> which of the following options to try next?

>

> 1. Fish oil experimentation. We have had different success with

> different brands/doses of fish oil so we could experiment in this

> area more.

> 2. Carn-aware.

> 3. Diet. Which diet?

> 4. Chelation therapy.

> 5. Allergy testing.

>

> We hesitate to change more than one thing at once because if we see

> a change we won't know what caused the change. Therefore, we could

> use help in prioritizing our options. If you are responding based

> on your experience with your child, please include your child's

> diagnosis. Thanks for any help anyone can give us!

>

[Guest guest]

In your situation I would suggest first removing all

dyes, preservatives, artificial flavors and

sweeteners, and other chemicals from your son's diet.

Doing so is pretty cheap, completely harmless and

often very effective for ADHD

behavior. Next, I would add swimming-it's the most

effective

and affordable OT, PT, ST, stress-removing,

endorphin-releasing

activity for these kids that I've ever found. Also,

being in the pool seems to really facilitate

successful social interaction in kids who have a hard

time with this. Third, see if your ped will order

testing for food allergies (including celiac) or refer

you to a pediatric gastroenterologist who will. Try

adding digestive enzymes and probiotics (given

separately). After you observe the results of all

these easy changes, by all means look into chelation

therapy if you can find it/afford it/dare to do it

yourself, and try the gluten free/casein free diet if

you're up to it. I can't comment on the Carnaware

because I've never tried it, although I'm about to.

All this advice is based on no medical qualifications

whatsoever, but I have 3 sons-a 10 yr old with

Asperger's syndrome, an ADHD 7yr old and a severely

apraxic 2.5 yr old. Good luck with whatever you

decide on.

__________________________________________________

[Guest guest]

and ,

Thanks for your response to my question. My son has been on the

Carnaware for two days now. Too early to see it's effect. Read a book

called Children with Starving Brains. It only reinforced my feeling

that diet is very important and since both of you ranked that high as

well, I want to work on that next (if I could just convince my husband!)

Maybe allergy testing can help narrow what we need to eliminate and make

a diet easier to implement.

Swimming has been beneficial for one of my older children and is

something that has been on my list to try with my son. Maybe I can get

him in a class this fall.

Again, thanks for your help!

>

> Our 4.5 year-old son has been diagnosed with both apraxia and ADHD.

> In the year and a half since he was diagnosed with aprxia, he has

> gone from a 20-30 word vocabulary to speaking in sentences, using

> verb teses, using pronouns and prepositions! We attibute this

> success to fish oil supplements and lots of help from SLPs,

> teachers, teacher's aides, OTs, and a great babysitter.

> Approximately eight months ago we began to be aware of serious

> problems with social behavior, attention, and impulsivity. At this

> time, we played with fish oil dosages/brands with some improvement

> but not enough. We have added Focalin and again are seeing

> improvement but still feel there is lots of room for more

> improvement in intelligibleness and behavior. Any suggestions on

> which of the following options to try next?

>

> 1. Fish oil experimentation. We have had different success with

> different brands/doses of fish oil so we could experiment in this

> area more.

> 2. Carn-aware.

> 3. Diet. Which diet?

> 4. Chelation therapy.

> 5. Allergy testing.

>

> We hesitate to change more than one thing at once because if we see

> a change we won't know what caused the change. Therefore, we could

> use help in prioritizing our options. If you are responding based

> on your experience with your child, please include your child's

> diagnosis. Thanks for any help anyone can give us!

>

[Guest guest]

What I did was ask my ped for a referral to the cranio-facial team. They were the ones who wrote the rx for the band. If the ped won't give you the referral then find a new ped.

Also, Cranial Tech does do evals - you could get that and take it with you to the Cranio-facial Drs. That may help speed the process along.

HTH!!!

JEN

Mommy to 4...and 1 more!!!!

Luli - Tort/Plagio - Hanger Band - CA

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

A

quick reintro: My name is Theresa, I have three boys, my youngest () is

a little over 5 months old. Paddy started with plagio,

but with the repo, it is turning into brachy. My date to decide if I want to

band or not (or at least see the specialist) is 6 months. The plagio is getting

better, the brachy is worse. It’s looking like my pediatrician is not

going to be supportive of banding. So my question is, for those of you who had

to take matters in your own hands: what do you do next?

I need to know, do I go to another pediatrician,

looking for a referral; or do I go straight to Cranial Technologies? (There is

one an hour and a half from me).

Another quick question: what are the

reasons you give to band other than cosmetic reasons?

Thanks to everyone for reading (and

hopefully replying!) to this! I feel so lost and I HATE to go against my

doctor, but I don’t want my sweet baby’s head to be so oddly shaped

for the rest of his life!

Theresa

[Guest guest]

Hi Theresa, Welcome again! Remember that it is our job as parents to advocate for our kiddos....so a second opinion is warranted whenever we are not in agreement or just not sure with our physicians recommendation. I went to Cranial Tech for a consult while I was back east visiting family just to get an opinion and I found it truly helpful. We are not able to go through Cranial Tech because there isn't an office near where we live but the consult visit was the deciding factor for us in choosing to band our son. Be persistent in finding out all of the information. Cranial Tech will help you with your doctor or you can look for another doc in your area. From my experience repositioning did not work after 6months or so because our son became too active during the daytime and when he was sleeping too. Good luck! You will find lots of helpful information here within this group. mom to cole- 7 1/2 months tort/plagio ...waiting on STARbandTheresa Heckaman <theresaheckaman@...> wrote: A quick reintro: My name is Theresa, I have three boys, my youngest () is a little over 5

months old. Paddy started with plagio, but with the repo, it is turning into brachy. My date to decide if I want to band or not (or at least see the specialist) is 6 months. The plagio is getting better, the brachy is worse. It’s looking like my pediatrician is not going to be supportive of banding. So my question is, for those of you who had to take matters in your own hands: what do you do next? I need to know, do I go to another pediatrician, looking for a referral; or do I go straight to Cranial Technologies? (There is one an hour and a half from me). Another quick question: what are the reasons you give to band other than cosmetic reasons? Thanks to everyone for reading (and hopefully replying!) to this! I feel so lost and I HATE to go against my doctor, but I don’t want my sweet baby’s head to be so oddly shaped for the rest of his life! Theresa

[Guest guest]

We're in the same boat as you right now, and although I can't tell you what to do, I can say that if you don't agree with your ped, you need to get a second opinion. Go to CT and see what they say. It's not going to HURT anything for you to get the opinion of people who do this for a living. As mentioned in another email, we are our children's greatest advocate. No one else can do it but us. Just wanted to let you know you're not alone. Candace, AZ mommy to Tiernan, 3.5 mos tort, plagioTheresa Heckaman <theresaheckaman@...> wrote: A quick reintro: My name is Theresa, I have three boys, my youngest () is a little over 5 months old. Paddy started with plagio, but with the repo, it is turning into brachy. My date to decide if I want to band or not (or at least see the specialist) is 6 months. The plagio is getting better, the brachy is worse. It’s looking like my pediatrician is not going to be supportive of banding. So my question is, for those of you who had to take matters in your own hands: what do you do next? I need to know, do I go to another pediatrician, looking for a referral; or do I go straight to Cranial Technologies? (There is one an hour and a half from me). Another quick question: what are the reasons you give to band other than cosmetic reasons? Thanks

to everyone for reading (and hopefully replying!) to this! I feel so lost and I HATE to go against my doctor, but I don’t want my sweet baby’s head to be so oddly shaped for the rest of his life! Theresa

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi Jo,

At 5 weeks it is still early days but all the same...

Your ferritin level is VERY low and will be impacting on your body's

ability to absorb/make use of the thyroxine. See if you can get your

GP to prescribe a liquid iron supplement, eg-galfer syrup, as that

is much more efficiently absorbed than iron pills and won't cause

constipation.

Also, 25 mcg thyroxine is a low starting dose. Did your doctor have

a specific reason for starting you so low? Even if your iron levels

were normal, you would probably see little dramatic improvement on

just 25mcg thyroxine.

I'd be inclined to ask for a doseage raise to 50mcg and, of course,

let your doctor know if you start feeling overmedicated. If all goes

well, then it will become clearer later whether you need further

doseage increases.

From my own experience, my iron absorbtion ability improved

noticeably AFTER I started taking thyroxine. It was almost as if the

poor thyroid function had added to the low iron situation rather

than the other way round. For that reason, I would be reluctant to

abandon the thryoxine until your ferritin levels improve. Work on

them both at the same time and see what happens. Also I think you

need to take your iron and thyroxine at different ends of the day.

Certainly take the iron with vitamin C.

I think there was something on this board recently that vitamin C

also improves the absorbtion of thyroxine.

What sort of dose of vitamin C would other forum members suggest

here?

Other forum members would be able to advise if your non-improvement

could be due to adrenal insufficency as well.

With your low ferritin level are you having problems with hair loss

at all? Just curious.

Hope this helps,

Tracey

>

> I've been on a trial 25mg of levothyroxine for about 5 weeks, but

I

> actually feel worse than I did before I started it! In

particular,

> for the last 2-3 weeks I've been very tired and lethargic, and my

> brain is so fogged that I can't really think straight at work (not

> unusual, but especially bad at the moment). Basal temp seems to be

> holding at around 36.5 most days (range is 35.9 to 36.9).

>

> Would low iron stop me absorbing the thyroxine? Iron-related

results

> from last blood test in June (prior to treatment) are:

> serum ferritin 7.4 (range 15-300) - guess this is pretty low

> serum TIBC 84 (range 41-77)

> serum iron level 14 (7-26) - this is normal though!

> unsaturated iron binding capacity 70 (20-62)

> mean corpusc. haemoglobin 25.9 (27-3)

>

> I am also thinking that my adrenal levels may be low, but not sure

> how to check this - any ideas?

>

> I am seeing my GP again tomorrow, but am not due to have blood

tests

> for another couple of weeks. Should I ask for an iron supplement

and

> an increase in thyroxine to 50 or 75mg? Anything else?

>

> Thank you for any suggestions you can give.

>

> -Jo

[Guest guest]

Hi Jo

It's great that you have now been diagnosed officially and that yes, you can get all your prescriptions for anything for the rest of your life free of prescription charge. Take some high dose Vitamin C such as 3/4000 mgs with your 'orrible iron supplement and that will help to stop constipation. Not at all surprised that she doesn't believe there is an adrenal problem - they are not taught about the conneciton within the NHS because they don't believe there is one, but there is and a very big connection. if your adrenals are low, no amount of thyroid hormone replacement is going to work, because your adrenals have to be in a healthy state first. Go to our website www.tpa-uk.org.uk click on Hypothyroidism in the Menu - click on 'Associated Conditions' and then click on 'Adrenals' and click on the first article that appears on the page which Dr peatfield wrote on the thyroid/Adrenal connection and you will understand why this is so important. You might have to go down this road on your ow - but we are here to help you.

luv - Sheila

I came out of my GP appt with a repeat thyroxine prescription - which I am free to take more of (i.e. 50 rather than 25), and also one for an iron solution - though she reckons it's vile and will probably cause constipation anyway She thought that adrenal deficiency was very unlikely, so we've not checked anything down that route. We'll re-test thyroid function in a couple of weeks as previously planned. One more thing: I can now get a prescription medical exemption certificate - guess that means I am "officially" hypothyroid - as well as saving some dosh, of course.No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.5/1569 - Release Date: 23/07/2008 13:31

[Guest guest]

Sheila, how would I go about obtaining the adrenal supplements? The

Nutri ones seem to be only available to medical practitioners.

Also, how would I decide which one I would need? I'm a bit nervous of

self-medicating!

-Jo

[Guest guest]

Hi Jo, that's good news :-) What is the iron solution? Galfer? Did she

try to give you ferrous suplhate? Do you get constipated normally? Iron

has the opposite effect on me. Why does she think that adrenals are ok?

Do you think they are? Ruth x

>

> Apologies for replying to my own post, but I guess it was the easiest

> way to give an update without starting a new thread.

>

> I came out of my GP appt with a repeat thyroxine prescription - which

I

> am free to take more of (i.e. 50 rather than 25), and also one for an

> iron solution - though she reckons it's vile and will probably cause

> constipation anyway She thought that adrenal deficiency was very

> unlikely, so we've not checked anything down that route. We'll re-

> test thyroid function in a couple of weeks as previously planned.

>

> One more thing: I can now get a prescription medical exemption

> certificate - guess that means I am " officially " hypothyroid - as

well

> as saving some dosh, of course.

>

[Guest guest]

Hi Ruth,

Hmm, it's not galfer, and I don't think it's ferrous sulphate, but I

can't check right now because the prescription's at the chemist.

I've had IBS issues in the past and I know the effect that iron has

on others in my family so would expect it to be similar for me.

The reason my GP thinks it's not an adrenal issue is that I am not

ill enough. It's true I'm doing a full-time job (although finding it

increasingly difficult to concentrate enough) and also manage to

exercise several times a week - although that does make me exhausted -

so that's seen as functioning " normally " , I guess.

However, my opinion is that I've probably had untreated

hypothyroidism for a long time - maybe as long as 20-25 years on and

off - and my adrenals are more than likely run down. I don't think I

have ever had a " normal " level of energy and tiredness, for more than

a few weeks in that time. Anyway, I did the adrenal questionnaire

from the tpa site yesterday and answered 32 of the questions which

seems to be the lower limit for a diagnosis, but haven't totted up

all the scores yet.

I had a look on yournutritionshop (found that site after I replied to

Sheila), and might get some NAE, but I want to run it past my GP

before taking it, though. Could it be prescribed, do you know?

Thanks,

-Jo

>

> Hi Jo, that's good news :-) What is the iron solution? Galfer? Did

she

> try to give you ferrous suplhate? Do you get constipated normally?

Iron

> has the opposite effect on me. Why does she think that adrenals are

ok?

> Do you think they are? Ruth x