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We applied for our daughter who has Pdd-nos, allergies and it took just under 6 months for the process. With the doctors letter we only stayed at the nursing home 1 day. With this comes medicaid and respite. PrestonSent from my iPhone

Yes, Carolyn. My son has asthma with need of a nebulizer. He has been better these past few months with a new protocol, but we are guardedly optimistic. If we were to stop the protocol, our son's asthma would come back and he would need the nebulizer and other drugs. so I don't know how it is going to work when we come up for renewal. He is still under a doctor's care and has to seen routinely. Again, if we decided to stop the protocol he's on, I have not doubt his symptoms would return.

He qualified under the asthma and the intestinal disorder (NOS) he has chronic, debillitating constipation and has mega-colon. But my understanding is he would have qualified under the asthma alone. I think kids with asthma who do not have nebulizers are less likely to qualify. When you go to the nursing home - this is what we were told, he just had to be there part of two days. It was not bad, and the nurses were very sympathetic and kind to our son. they have to come in every so often and run vitals. We did have to pay for the two full days in the nursing home. I can't remember if insurance reimbursed. Our insurance was so bad I'm thinking they didn't and we scraped the money up somehow.

If things go well, and our son stays healthy, we will gladly trade services for his continued good health, but I think as bad as he was, we will have to keep the nebulizer handy for quite some time just in case. If the FDA were to make any of the supplements he's on available only by prescription (and believe me that is what the drug companies want -they want us all to have to have a prescription before we ca even buy vitamin C) then we might couldnot afford it and then he would once again need the nebulizer and other drugs (that is what the drug companies want: everybody on a host of their drugs for a lifetime).

But the protocol my son is on can actually heal his body. At this point, to what degree I am uncertain. Only the future can tell. My son's situation is different ins some respects. the damage to his immune system makes him over react to many insect bites and he will suffer anaphylaxis, so we have to have a nebulizer in that event along with Epipens. he also cannot fight the bacteria that gets introduced from any insect bite such as a mosquito and he will develop radiating staff from each andevery bite site.

However, my understanding is he did not qualify under his immune disorder, he qualified under the asthma due to need of a nebulizer and he qualified under the intestinal disorder. it is a rather crazy system. IMO most children with autism are very medically and neurologically sick in one form or fashion, and they should all be covered under MDCP.

The government has taken great pains to throw away these children completely: their voices cannot be heard at court for medical damage, they cannot get appropriate educations in public schools, they cannot get the supports and services they need to progress when they are young, their parents are weighted with a very heavy financial burden, and they want us all to be silent and just "disappear."

Get whatever help you can get for your child while it is available. The powers that be would rather deal withour children as adults in the prisons, institutions, and on the streets as the future homeless than do what is right at the right time, so you must help your child any way you can.

We are in the same boat as you. I worry what will happen to my son in the future, and if there will be anything to leave him, it will be the proceeds from the sale of our farm IF we can manage to hang onto it at least. But we have to create a trust for that money to flow into in order to keep him out of an institution if something happens to us.

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I don't know if MDCP covers ABA through the Medicaid program.  Anyone?  I know my son gets PT, OT, and speech through the waiver program.  Through MDCP and the medicaid waiver program we get the above plus respite and it pays for what insurance doesn't cover on medical bills and prescription meds IF we go to medicaid providers.  It does not pay for DAN docs or supplements.

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It doesn't cover aba. PrestonSent from my iPhone

I don't know if MDCP covers ABA through the Medicaid program. Anyone? I know my son gets PT, OT, and speech through the waiver program. Through MDCP and the medicaid waiver program we get the above plus respite and it pays for what insurance doesn't cover on medical bills and prescription meds IF we go to medicaid providers. It does not pay for DAN docs or supplements.

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We applied for rider 28 in 2010 and began receiving services in sept. 2010. Fairly recent and this was through rider 28. PrestonSent from my iPhone

I don't know if they are still allowing Rider 28, but call MDCP and say you want a Rider 28. Then get a docotr's order to go to a nursing home for two days. Once that is done your childis bumped to the top of the list and the waiver will kick in at that time.

yes, the Rider 28 will work for a child with asthma. You need the doctor's order into a nursing home, and it needs to say that due to your child's unique health needs, the child cannot stay a full thirty days. Ours was due to the special diet he had to be on and it would have been difficult for the nursing home to provide it.

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And what is the number for MDCP?

 

We applied for rider 28 in 2010 and began receiving services in sept. 2010. Fairly recent and this was through rider 28. Preston

Sent from my iPhone

 

I don't know if they are still allowing Rider 28, but call MDCP and say you want a Rider 28.  Then get a docotr's order to go to a nursing home for two days.  Once that is done your childis bumped to the top of the list and the waiver will kick in  at that time.

yes, the Rider 28 will work for a child with asthma.  You need the doctor's order into a nursing home, and it needs to say that due to your child's unique health needs, the child cannot stay a full thirty days.  Ours was due to the special diet he had to be on and it would have been difficult for the nursing home to provide it.

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What kind of nursing home? Do you get to stay there with the child?

 

We applied for our daughter who has Pdd-nos, allergies and it took just under 6 months for the process.  With the doctors letter we only stayed at the nursing home 1 day.  With this comes medicaid and respite. Preston

Sent from my iPhone

 

Yes, Carolyn.  My son has asthma with need of a nebulizer.  He has been better these past few months with a new protocol, but we are guardedly optimistic.  If we were to stop the protocol, our son's asthma would come back and he would need the nebulizer and other drugs.  so I don't know how it is going to work when we come up for renewal.  He is still under a doctor's care and has to seen routinely.  Again, if we decided to stop the protocol he's on, I have not doubt his symptoms would return. 

He qualified under the asthma and the intestinal disorder (NOS) he has chronic, debillitating constipation and has mega-colon.  But my understanding is he would have qualified under the asthma alone.  I think kids with asthma who do not have nebulizers are less likely to qualify.  When you go to the nursing home - this is what we were told, he just had to be there part of two days. It was not bad, and the nurses were very sympathetic and kind to our son.  they have to come in every so often and run vitals.  We did have to pay for the two full days in the nursing home.  I can't remember if insurance reimbursed.  Our insurance was so bad I'm thinking they didn't and we scraped the money up somehow.

If things go well, and our son stays healthy, we will gladly trade services for his continued good health, but I think as bad as he was, we will have to keep the nebulizer handy for quite some time just in case.  If the FDA were to make any of the supplements he's on available only by prescription (and believe me that is what the drug companies want -they want us all to have to have a prescription before we ca even buy vitamin C) then we might couldnot afford it and then he would once again need the nebulizer and other drugs (that is what the drug companies want: everybody on a host of their drugs for a lifetime).

But the protocol my son is on can actually heal his body.  At this point, to what degree I am uncertain.  Only the future can tell.  My son's situation is different ins some respects.  the damage to his immune system makes him over react to many insect bites and he will suffer anaphylaxis, so we have to have a nebulizer in that event along with Epipens.  he also cannot fight the bacteria that gets introduced from any insect bite such as a mosquito and he will develop radiating staff from each andevery bite site.

However, my understanding is he did not qualify under his immune disorder, he qualified under the asthma due to need of a nebulizer and he qualified under the intestinal disorder.  it is a rather crazy system.  IMO most children with autism are very medically and neurologically sick in one form or fashion, and they should all be covered under MDCP.

The government has taken great pains to throw away these children completely: their voices cannot be heard at court for medical damage, they cannot get appropriate educations in public schools, they cannot get the supports and services they need to progress when they are young, their parents are weighted with a very heavy financial burden, and they want us all to be silent and just " disappear. "

Get whatever help you can get for your child while it is available.  The powers that be would rather deal withour children as adults in the prisons, institutions, and on the streets as the future homeless than do what is right at the right time, so you must help your child any way you can.

We are in the same boat as you.  I worry what will happen to my son in the future, and if there will be anything to leave him, it will be the proceeds from the sale of our farm IF we can manage to hang onto it at least.  But we have to create a trust for that money to flow into  in order to keep him out of an institution if something happens to us.

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No no nebulizer. Sorry she also has developmental delay, constipation and oral dysphasia. PrestonSent from my iPhone

Wow! She got accepted to MDCP with Pdd-NOS and allergies? does she use a nebulizer?

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1- PrestonSent from my iPhone

And what is the number for MDCP?

We applied for rider 28 in 2010 and began receiving services in sept. 2010. Fairly recent and this was through rider 28. Preston

Sent from my iPhone

I don't know if they are still allowing Rider 28, but call MDCP and say you want a Rider 28. Then get a docotr's order to go to a nursing home for two days. Once that is done your childis bumped to the top of the list and the waiver will kick in at that time.

yes, the Rider 28 will work for a child with asthma. You need the doctor's order into a nursing home, and it needs to say that due to your child's unique health needs, the child cannot stay a full thirty days. Ours was due to the special diet he had to be on and it would have been difficult for the nursing home to provide it.

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You have to find a nursing home that takes children, participates with Mdcp requirements. My case worker gave me a list of nursing homes but the list is ever changing. We stayed with our daughter in the same room at shady acres nursing home in newton tx. PrestonSent from my iPhone

What kind of nursing home? Do you get to stay there with the child?

We applied for our daughter who has Pdd-nos, allergies and it took just under 6 months for the process. With the doctors letter we only stayed at the nursing home 1 day. With this comes medicaid and respite. Preston

Sent from my iPhone

Yes, Carolyn. My son has asthma with need of a nebulizer. He has been better these past few months with a new protocol, but we are guardedly optimistic. If we were to stop the protocol, our son's asthma would come back and he would need the nebulizer and other drugs. so I don't know how it is going to work when we come up for renewal. He is still under a doctor's care and has to seen routinely. Again, if we decided to stop the protocol he's on, I have not doubt his symptoms would return.

He qualified under the asthma and the intestinal disorder (NOS) he has chronic, debillitating constipation and has mega-colon. But my understanding is he would have qualified under the asthma alone. I think kids with asthma who do not have nebulizers are less likely to qualify. When you go to the nursing home - this is what we were told, he just had to be there part of two days. It was not bad, and the nurses were very sympathetic and kind to our son. they have to come in every so often and run vitals. We did have to pay for the two full days in the nursing home. I can't remember if insurance reimbursed. Our insurance was so bad I'm thinking they didn't and we scraped the money up somehow.

If things go well, and our son stays healthy, we will gladly trade services for his continued good health, but I think as bad as he was, we will have to keep the nebulizer handy for quite some time just in case. If the FDA were to make any of the supplements he's on available only by prescription (and believe me that is what the drug companies want -they want us all to have to have a prescription before we ca even buy vitamin C) then we might couldnot afford it and then he would once again need the nebulizer and other drugs (that is what the drug companies want: everybody on a host of their drugs for a lifetime).

But the protocol my son is on can actually heal his body. At this point, to what degree I am uncertain. Only the future can tell. My son's situation is different ins some respects. the damage to his immune system makes him over react to many insect bites and he will suffer anaphylaxis, so we have to have a nebulizer in that event along with Epipens. he also cannot fight the bacteria that gets introduced from any insect bite such as a mosquito and he will develop radiating staff from each andevery bite site.

However, my understanding is he did not qualify under his immune disorder, he qualified under the asthma due to need of a nebulizer and he qualified under the intestinal disorder. it is a rather crazy system. IMO most children with autism are very medically and neurologically sick in one form or fashion, and they should all be covered under MDCP.

The government has taken great pains to throw away these children completely: their voices cannot be heard at court for medical damage, they cannot get appropriate educations in public schools, they cannot get the supports and services they need to progress when they are young, their parents are weighted with a very heavy financial burden, and they want us all to be silent and just "disappear."

Get whatever help you can get for your child while it is available. The powers that be would rather deal withour children as adults in the prisons, institutions, and on the streets as the future homeless than do what is right at the right time, so you must help your child any way you can.

We are in the same boat as you. I worry what will happen to my son in the future, and if there will be anything to leave him, it will be the proceeds from the sale of our farm IF we can manage to hang onto it at least. But we have to create a trust for that money to flow into in order to keep him out of an institution if something happens to us.

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Wow, that is good to hear, so maybe even if his asthma stays better, he will still qualify under having autism and severe allergies as he has to have an Epipen with him at all times?  I hope.We got on in January of 2009 but I knew nothing then and didn't begin to use the waiver until the end of '09 for doctor visits and prescriptions.  I only found a really good respite worker a couple of months ago, and we started using the waiver for speech, PT, and OT last September when we started home schooling, so really this has benefited us only a short while.

It helped out in a major way when last September our son got strep and staph at the same time.  He needed a special antibiotic to cover both bacteria.  The pharmacist told me insurance would not cover a tier one med.  It was one little bottle, and my son had to have it.  I said, " How much will it be? " and the pharmacist said, " Between 500 and 600 dollars!  I almost started to cry (this is how we went broke over the years paying out of pocket for emergency every two weeks at a 500 deductible and paying for tier one meds he needed)  Then I remembered we ahd the waiver and I had the medicaid card in my purse.  What a lifesaver that was!

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From my understanding autism and mental retardation are not covered diagnosis, it is the other issues/diagnosis that Mdcp defines as medically dependent. Some examples that Mdcp recognizes are seizures, dev delay, allergies, speech impairment, constipation, stomach issues. PrestonSent from my iPhone

Wow, that is good to hear, so maybe even if his asthma stays better, he will still qualify under having autism and severe allergies as he has to have an Epipen with him at all times? I hope.We got on in January of 2009 but I knew nothing then and didn't begin to use the waiver until the end of '09 for doctor visits and prescriptions. I only found a really good respite worker a couple of months ago, and we started using the waiver for speech, PT, and OT last September when we started home schooling, so really this has benefited us only a short while.

It helped out in a major way when last September our son got strep and staph at the same time. He needed a special antibiotic to cover both bacteria. The pharmacist told me insurance would not cover a tier one med. It was one little bottle, and my son had to have it. I said, "How much will it be?" and the pharmacist said, "Between 500 and 600 dollars! I almost started to cry (this is how we went broke over the years paying out of pocket for emergency every two weeks at a 500 deductible and paying for tier one meds he needed) Then I remembered we ahd the waiver and I had the medicaid card in my purse. What a lifesaver that was!

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MDCP # is

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 8:47 AMSubject: Re: Texana Services

And what is the number for MDCP?

We applied for rider 28 in 2010 and began receiving services in sept. 2010. Fairly recent and this was through rider 28. Preston

Sent from my iPhone

I don't know if they are still allowing Rider 28, but call MDCP and say you want a Rider 28. Then get a docotr's order to go to a nursing home for two days. Once that is done your childis bumped to the top of the list and the waiver will kick in at that time.yes, the Rider 28 will work for a child with asthma. You need the doctor's order into a nursing home, and it needs to say that due to your child's unique health needs, the child cannot stay a full thirty days. Ours was due to the special diet he had to be on and it would have been difficult for the nursing home to provide it.

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That still helps as he still has life threatening allergies and constipation -- the constipation and mega-colon are under control with treatment.  I have his last x-rays from last fall of his colon.  It was shocking.  a large portion of his colon is so huge.  Does anyone know what can be done about this?  I do worry about it.  I mean he has only been symptom free of asthma for about five weeks, so a Lot more time needs to go by before one could say he doesn't have it anymore.  We are just optimistic about what has helped this at this point.

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Ok, so I don't know if this helps, and this is just something they automatically do, but they put us on both lists when we called about CLASS. I did not mention that she has Asthma or anything else.... We could probably get a diagnosis of developmental delays, and fine motor delays in specific, she is also sensory, although I am sure that wouldn't qualify her. She stays pretty healthy except in the winter, and both her and I struggle all winter long!!!!!

Carolyn

To: "Texas-Autism-Advocacy " <Texas-Autism-Advocacy >Sent: Friday, May 13, 2011 9:12 AMSubject: Re: Texana Services

From my understanding autism and mental retardation are not covered diagnosis, it is the other issues/diagnosis that Mdcp defines as medically dependent. Some examples that Mdcp recognizes are seizures, dev delay, allergies, speech impairment, constipation, stomach issues. Preston

Sent from my iPhone

Wow, that is good to hear, so maybe even if his asthma stays better, he will still qualify under having autism and severe allergies as he has to have an Epipen with him at all times? I hope.We got on in January of 2009 but I knew nothing then and didn't begin to use the waiver until the end of '09 for doctor visits and prescriptions. I only found a really good respite worker a couple of months ago, and we started using the waiver for speech, PT, and OT last September when we started home schooling, so really this has benefited us only a short while.It helped out in a major way when last September our son got strep and staph at the same time. He needed a special antibiotic to cover both bacteria. The pharmacist told me insurance would not cover a tier one med. It was one little bottle, and my son had to have it. I said, "How much will it be?" and the pharmacist said, "Between 500 and 600

dollars! I almost started to cry (this is how we went broke over the years paying out of pocket for emergency every two weeks at a 500 deductible and paying for tier one meds he needed) Then I remembered we ahd the waiver and I had the medicaid card in my purse. What a lifesaver that was!

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Yes I would still apply for rider 28. When Mdcp makes an appt with you, you will need to haves list of all prescription medications and medical diagnosis for the Mdcp nurse. With Mdcp staff shortages just like most state agencies you will need to be persistent or else they will take their time. My 6 months should of only taken 3 months. PrestonSent from my iPhone

Ok, so I don't know if this helps, and this is just something they automatically do, but they put us on both lists when we called about CLASS. I did not mention that she has Asthma or anything else.... We could probably get a diagnosis of developmental delays, and fine motor delays in specific, she is also sensory, although I am sure that wouldn't qualify her. She stays pretty healthy except in the winter, and both her and I struggle all winter long!!!!!

Carolyn

To: "Texas-Autism-Advocacy " <Texas-Autism-Advocacy >Sent: Friday, May 13, 2011 9:12 AMSubject: Re: Texana Services

From my understanding autism and mental retardation are not covered diagnosis, it is the other issues/diagnosis that Mdcp defines as medically dependent. Some examples that Mdcp recognizes are seizures, dev delay, allergies, speech impairment, constipation, stomach issues. Preston

Sent from my iPhone

Wow, that is good to hear, so maybe even if his asthma stays better, he will still qualify under having autism and severe allergies as he has to have an Epipen with him at all times? I hope.We got on in January of 2009 but I knew nothing then and didn't begin to use the waiver until the end of '09 for doctor visits and prescriptions. I only found a really good respite worker a couple of months ago, and we started using the waiver for speech, PT, and OT last September when we started home schooling, so really this has benefited us only a short while.It helped out in a major way when last September our son got strep and staph at the same time. He needed a special antibiotic to cover both bacteria. The pharmacist told me insurance would not cover a tier one med. It was one little bottle, and my son had to have it. I said, "How much will it be?" and the pharmacist said, "Between 500 and 600

dollars! I almost started to cry (this is how we went broke over the years paying out of pocket for emergency every two weeks at a 500 deductible and paying for tier one meds he needed) Then I remembered we ahd the waiver and I had the medicaid card in my purse. What a lifesaver that was!

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I find it interesting how they will put you on the list and not tell you any of this information! I will call them again today. Also, do I just put her albuterol and pulmicort as PRN on the list, and then her vitamins as daily? She isn't on anything else....

Carolyn

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 9:37 AMSubject: Re: Texana Services

She has asthma and needs a nebulizer. this is enough to get her covered under MDCP and request a Rider 28. Call them today.

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For list purposes your child only needs to be on the list. Once you request rider 28 and the case mgr and nurse come to your home, you will then give them diagnosis and meds PrestonSent from my iPhone

I find it interesting how they will put you on the list and not tell you any of this information! I will call them again today. Also, do I just put her albuterol and pulmicort as PRN on the list, and then her vitamins as daily? She isn't on anything else....

Carolyn

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 9:37 AMSubject: Re: Texana Services

She has asthma and needs a nebulizer. this is enough to get her covered under MDCP and request a Rider 28. Call them today.

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Ok, so for anyone using the MDCP services, I have heard that they will pay for a person to be caregiver to the child. Is this true? Can I name my husband (who is home 24/7) for this part of the program?

Thanks,

Carolyn

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 9:37 AMSubject: Re: Texana Services

She has asthma and needs a nebulizer. this is enough to get her covered under MDCP and request a Rider 28. Call them today.

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Mdcp will not pay anyone living in the home. You do have an option by choosing an agency who will hire a caregiver or you can choose the CDs(consumer directed) option where you hire someone you know or are familiar with. PrestonSent from my iPhone

Ok, so for anyone using the MDCP services, I have heard that they will pay for a person to be caregiver to the child. Is this true? Can I name my husband (who is home 24/7) for this part of the program?

Thanks,

Carolyn

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 9:37 AMSubject: Re: Texana Services

She has asthma and needs a nebulizer. this is enough to get her covered under MDCP and request a Rider 28. Call them today.

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Ok, so, I did it, and did the appropriate phone calls, just finished talking with the intake person. However, she said that things had changed a little in that it used to be a one day stay in a nursing home but now it is dependent on a medical doctor and board that makes a decision how long the stay is if we meet the medical criteria to even do it.... That stresses me out, but I am trying to stay optimistic, and hopefully they would understand that she would NOT do well in such a situation and place. I am praying for some help, cause she deserves SO much more!

Thanks,

Carolyn

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 9:37 AMSubject: Re: Texana Services

She has asthma and needs a nebulizer. this is enough to get her covered under MDCP and request a Rider 28. Call them today.

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Dont worry! One step at a time. We had to have a doctor letter stating that it would not be in our daughters best interest to stay in a nursing home longer than 48 hours and at that time Mdcp only required 1 day. That may be a new tactic to discourage parents from applying for rider 28. PrestonSent from my iPhone

Ok, so, I did it, and did the appropriate phone calls, just finished talking with the intake person. However, she said that things had changed a little in that it used to be a one day stay in a nursing home but now it is dependent on a medical doctor and board that makes a decision how long the stay is if we meet the medical criteria to even do it.... That stresses me out, but I am trying to stay optimistic, and hopefully they would understand that she would NOT do well in such a situation and place. I am praying for some help, cause she deserves SO much more!

Thanks,

Carolyn

To: Texas-Autism-Advocacy Sent: Friday, May 13, 2011 9:37 AMSubject: Re: Texana Services

She has asthma and needs a nebulizer. this is enough to get her covered under MDCP and request a Rider 28. Call them today.

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You can tell the nurse and case worker her meds when they come to the home.  I offered them Ethan's medical notebooks to look at (over a thousand pages)  but they said that wasn't necessary.  I just gave them a verbal list of what he was on concerning prescription meds and supplements, but I did not say I give each vitamin mineral separately.  I just said vitamins, minerals, and amino acids.

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