Help!

[Guest guest]

Kody now 3 1/2 month

After your help to find a doctor in S-California we have a pile

of problems coming on to us:

We went to Dr. King in Tarzana on April 21st covered by our

Insurance (healthnet Med Group University California Irvine) as

getting a second Opinion.

That day we had a very good impression of the Doctor and he said

that Kody will need only 6 cast to be corrected.

We went that day ahead and let him do the first cast on our cost

(since we drove 1 1/2 hours to get there).

The doctors assistent called the Medical Group to ask if they can be

single contracted with the doctor in Tarzana for this case.

The people from the doctors office said that this should not be a

problem and that they are sure they will do it. The result should

have

be there on the following Friday which it wasen't (What a surprise).

Anyway Kody left this cast on for 2 weeks (What a waste of time) and

still the medical group didn't make a descision. Finally we went

ahead and had the cast change on our own expense. The medical group

denied on 5/6/04. And I went ahead to do an expedited appeal with the

Healthinsurance. They already told me it's not going to be considered

expedited. So it can take up to thirty days!! In that time he would

be basically done with the casting!

When we went to change the cast the second time it seemed like Kody

was in pain when the doctor manipulated the foot. So we are not

even sure anymore if Dr. king is completely sure what he is doing.

(His dad went with him, but when I saw the foot I was shocked to see

which angle the doctor put the foot in)

My question to all of this is: Is it worth it?

How much would the whole thing cost (casting, shoes etc...)

If we have doubts with the doctor what can we do?

Could we bring the Ponseti Protocol to another orthopedic and ask

him to follow it? Would he be able to perform a good job without ever

being in Iowa with Dr. Ponseti?

should we just give up and let them do the conventional way?

I'm from Germany and I don't know this system very well but

maybe somebody could give me an advice/ encouragement?!

Thanks a lot

and Kody 2/1/04

[Guest guest]

it is possible, even with a Ponseti technique, etc., that the cast(s) were

applied improperly; perhaps too tight, or maybe a wad of batting is pressing in

to a spot making it sore. Have you checked his toes? Are they of good color

and circulation? If he is as inconsolable as you say you might consider taking

him to the ER or something and having the casts removed. Dr. Ponseti himself

(with helpers of course) applied one cast too tight to my baby last year and he

was definately in pain. You know your baby better than anyone, what do you

think? Is something wrong? If you think so, then better safe than sorry.

Another time years ago my other son had cast issues, the dr. said it was the

rash he had on his face making him cry. (new born baby rash) We knew it was

more serious than that, we weren't idiots but evidently that dr. was cuz we took

the cast off at home later than everning and found my baby's leg was all purple

and swollen up something terible.

s.

Help!

My six day old son was just casted bilaterally by a Ponseti-approved

doctor. He is very uncomfortable but not in pain. However, we are

having trouble soothing him with the usual methods and he is pretty

unconsolable at times. Did you veterans deal wihth this and if so,

what did you do? Will he just have to get used to it? Will he

eventually? It's breaking our hearts to see him so unhappy.

Thanks in advance for your advice.

Gratefully

Antoinette Hewitt

[Guest guest]

Hi Antoinette,

Congratulations on your new little guy! Zoe got her cast when she was

8 days old and was pretty fussy all day. I think she was trying to

move her little leg around (bend knees) and was not able to, which

upset her. We used Tylenol for the 1st 2 days and held her pretty

much all day, after that she was fine with each and every cast. She

did not get upset again when they changed them either. Zoe also

seemed to calm down when she was swaddled.

I hope this helps. It will get better!

Louisa

6-27-99

Zoe 2-22-04 RCF

> My six day old son was just casted bilaterally by a Ponseti-

approved

> doctor. He is very uncomfortable but not in pain. However, we

are

> having trouble soothing him with the usual methods and he is pretty

> unconsolable at times. Did you veterans deal wihth this and if so,

> what did you do? Will he just have to get used to it? Will he

> eventually? It's breaking our hearts to see him so unhappy.

>

> Thanks in advance for your advice.

>

> Gratefully

>

> Antoinette Hewitt

[Guest guest]

Hey, if you weren't guilty and panic stricken you wouldn't be a mom! LOL!

We've all be there done that and I reckon we'll do it again. Glad to hear he's

feeling better. My son liked to be swaddled real tight, then he wasn't tempted

to move his legs and discover he couldn't.

Thanks so much, he is much better this evening and has slept and

eaten so I think I uttered the words of a panicked, guilt-stricken,

first time mom. He cries out a bit in his sleep but I think he is

just remembering the most recent experience. He is sure to miss

bending his legs but I am hopeful that the worst is over.

I will keep your advice in mind and watch him closely.

Thanks again, I truly appreciate it.

---

[Guest guest]

Hey ,

Maybe you should call Dr Bock's practice?

Jodi

[Guest guest]

Carol-

The link you provided regarding the B12 deficiency only works if you are

a member of the group. Can you tell in a nutshell how you knew you were

low in B12?

Also, I'm curious. How long before you would say the SCD allowed your

Crohn's to be manageable and you were free of most symptoms?

Thanks for your advice.

Wife of Fred, UC 03/06, SCD 04/21/09

Attachment: vcard [not shown]

[Guest guest]

Hi , I copy & pasted the B12 info. I had about

8 symptoms! I was on the SCD for at least 2 years before my symptoms ceased.

But I had inadvertently been taking illegals in my vitamins and

anti-inflammatory. The pain and the worst of the D subsided right away on the

SCD. Only got rid of the D when I stopped the supplements with the illegals in

them. No more D. Also, note that there are no legal sub-lingual (under the

tongue) B12. Shots are recommended. I got my 1st one through my

doctor along with a script for B12 serum & needles. It’s not hard to

inject yourself, I do it in my thigh. I did 1,000mcg (equals 1 cc) once a week

for about 7 weeks, then every 2 weeks for a few weeks. I’m still at once

every 2 weeks.

Carol

CD 21 yrs

SCD 4.5 yrs

If

you are a typical person and do not have intestinal disease you likely do not

have this problem. It is rare. Many doctors will miss you!

Normal folk are most vulnerable to vitamin b12 deficiency if you've vegan and

don't use the available dietary supplements containing vitamin b12. Infants

breast-feeding from vegan mothers can also be at risk. Vitamin b12

supplements are generally regarded as safe because there are few known

adverse effects of overdose.

The

main symptom that arises from vitamin b12 deficiency is a type of anemia that

causes you to feel tired, weak and lethargic. You might also feel nauseous,

constipated and become very flatulent (gas). You may also lose your appetite

and suffer weight loss.

More

severe cases can give vitamin b12 deficiency symptoms, which include:

Burning sensation of the tongue

Numbness or tingling in the hands or feet

Insomnia

Loss of memory

Dizziness

Lack of balance

Depression

Digestive problems

Dizziness

Liver enlargement

Eye problems

Headaches

Mental Illness and Hallucinations

Inflamed tongue

Breathing difficulties

Loss of memory

Palpitations

Neurological damage

Worsening of autistic symptoms

Tinnitus or ringing in the ears

Vitamin

b12 is commonly found in animal products like eggs, dairy, fish, meat and

animal organs. B12 is rarely found in vegetables, which is why vegetarians

and especially vegans who don't eat dairy products or meat, are especially at

risk. If you fall into this category then you should consider using vitamin

supplements containing b12. The problem is, only the injections and

nasal sprays will be best absorbed. The gut does not absorb the vitamin

B12 taken orally that well. Most sublingual preparations are not SCD

compliant and contain illegal sugars and starches.

It's

also important to realize that the operation of vitamin b12 is dependent on

sufficient quantities of other vitamins being present in your body so you

should take care to get a balanced diet to avoid vitamin b12 deficiency

symptoms. This is why a good B complex and a good multi-vitamin is

needed. Just taking b12 alone is not a good idea.

Remember:

Elaine G recognized that this is a big concern with those of us who have a

" Vicious cycle " . She tells us that we need to have blood

serum levels that are at a " high normal " . Many doctors do not

realize that even borderline deficiency can cause significant problems.

They may see that it is in range at a " low normal " and think that

this is adequate when it is simply not.

I

also suggest that one does not take their vitamins before having these

tests. One could get a false negative, when in reality you are truly

suffering from this. I know...my doctor originally missed me! I

took my B's before the test. I had to advocate for myself telling her

and insisting that she give me B12. I finally got my GI doctor to help

me. This is when my mental health began to improve and that horrible

burning in my mouth (especially at night) vanished. My energy improved

too. I only had to do this therapy for 9 months. Now that my

gut is healed I am not having the symptoms any more of B12 deficiency.

So I know now that my good gut bugs are making adequate amounts now, and that

I am able to utilize it.

Hope

this helps others!

God

Bless every ones healing journey!

Antoinette

and my family of Silly Yaks

(SCD 2/06)

Tue Jun 12, 2007 9:24 pm

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BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of

Hussey

Carol-

The link you provided regarding the B12 deficiency only works if you are

a member of the group. Can you tell in a nutshell how you knew you were

low in B12?

Also, I'm curious. How long before you would say the SCD allowed your

Crohn's to be manageable and you were free of most symptoms?

Thanks for your advice.

Wife of Fred, UC 03/06, SCD 04/21/09