Re: Bloodwork requested

[Guest guest]

The National Down Syndrome Society has created checklists based on our kids' ages...I always brought a copy to our pediatrition, but if there is a DS clinic in your area (we don' t have one yet---but soon!) then go there at least once a year and use the pediatrition for basic ailments.

Link:

http://www.ndss.org/index.php?option=com_content & view=category & id=38 & Itemid=59

, Mom to 15, DS, Southern California"People who say it cannot be done should not interrupt those who are doing it!"-------Chas

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

[DownSyndromeInfoExchange] Bloodwork requested

Hello,Just returned from an appt with a new pulmonologist for my 6mo old son with laryngealmalacia. Dr asked if I had bloodwork done already and I assumed he meant TSH, and CBC for leukemia and he indicated that there was other bloodwork I should have done and that perahps I would be better off in a DS clinic rather than my current pediatrician. This was further emphasized when I was unaware of some test or info that I should be aware of regarding my son's neck. I feel so ill informed and I thought I was keeping up. The bloodwork requested was Serum IgA, IgG,IgE and Igm. Can anyone shed any light on this blood test and remark regarding neck?Thanks so very much-Margie Lucky mom to Colin

[Guest guest]

Hi, Margie!

Don't be alarmed! And don't let doctors scare you with

their " knowledge " of down Syndrome! You will soon find that you will

know more about Down Syndrome than most, if not all, of the " experts "

seeing your son.

The Serum IgA, IgG, IgE and Igm is testing for celiac disease. Kids

with Down Syndrome can be unable to process gluten. So, it is a

regular test to check for that.

My son is 3. When he was your son's age, I was overwhelmed at the

information out there. Then, my little guy had a severe health

crisis that drove me to learn all I could. You will always be your

son's best advocate, and you will know him better than anyone else.

Study, learn, and go with your gut. Most important for me was to

find a pediatrician that was familiar with down syndrome, but that

SAW my son as a valuable person first. Never as a " syndrome "

Congrats on your son!

Sharon

>

> Hello,

> Just returned from an appt with a new pulmonologist for my 6mo old

son

> with laryngealmalacia. Dr asked if I had bloodwork done already and

I

> assumed he meant TSH, and CBC for leukemia and he indicated that

there

> was other bloodwork I should have done and that perahps I would be

> better off in a DS clinic rather than my current pediatrician. This

was

> further emphasized when I was unaware of some test or info that I

> should be aware of regarding my son's neck. I feel so ill informed

and

> I thought I was keeping up. The bloodwork requested was Serum IgA,

> IgG,IgE and Igm.

> Can anyone shed any light on this blood test and remark regarding

neck?

> Thanks so very much-

> Margie

> Lucky mom to Colin

>

[Guest guest]

Margie,

Hi,

My son also had laryngealmalacia. The ENT dxd it by a scope and we

waited it out by going NPO (nothing by mouth; we had a g tube) until

we seen IF it would grow out so he could eat orally.

The test the Dr might have been talking about for the neck is AAI

(antio axial instability). It is NOT a bloodtest but an xray.

I agree with Sharon, don't let the Dr. talk over you with medical

talk, nor let them NOT treat your child as a person or you as their

mom and primary caregiver.We had to change pediatrician twice before I

found one that that complimented our family.

Janet H

[Guest guest]

Hi Margie! Welcome to the list. :-) I think we were ALL overwhelmed in the beginning, but after a while, it's will just be old hat. :-) You are taking care of the most important things, and that's what counts. If he's had his heart and thyroid checked right away, you can slowly check out the rest in due time.Here is a list of recommended Health Care Guidelines you can print and give your Ped.I went to a supposedly really well run DS clinic here in Chicago and I was underwhelmed. I still knew more then they did and it was a huge waste of my time. I do have the BEST Ped on the planet though!!! If your Ped didn't bother to find out the common health issues relating to DS by now, I would be looking for a new Ped.

:-) No Ped knows everything, but one who doesn't bother to even CHECK, would not be a good choice for you child.You want someone who is interested enough in your child to take some time researching so they could give him the best care.If you ask you will find many of us have 'fired' more then our fair of Peds and Specialist over the years. Be picky! There are excellent Drs out there!!!The neck tests are refering to an instability of the neck bones, AAI- he has to be much older before they can do an x-ray for that. Sometimes kids with DS have larger spaces in their neck bones, making their necks unstable and prone to injury. It's not a huge deal for most of us. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace.com/vennamusicFrom: thedoyles2008 To: DownSyndromeInfoExchange Sent: Friday, January 9, 2009 3:58:03 PMSubject: [DownSyndromeInfoExchange]

Bloodwork requested

Hello,

Just returned from an appt with a new pulmonologist for my 6mo old son

with laryngealmalacia. Dr asked if I had bloodwork done already and I

assumed he meant TSH, and CBC for leukemia and he indicated that there

was other bloodwork I should have done and that perahps I would be

better off in a DS clinic rather than my current pediatrician. This was

further emphasized when I was unaware of some test or info that I

should be aware of regarding my son's neck. I feel so ill informed and

I thought I was keeping up. The bloodwork requested was Serum IgA,

IgG,IgE and Igm.

Can anyone shed any light on this blood test and remark regarding neck?

Thanks so very much-

Margie

Lucky mom to Colin

[Guest guest]

Hi Margie-

Congratulations on the birth of Colin!(I know I am late, but oh

well;-)

Here is a checklist for “preventative health” tests

for people w/Ds.

http://www.downsyn.com/guidelines/infancy.php

The checklist is divided up by age groups. Does the doc suspect

that your son has celiac disease? That is usually not checked until around age 2-3.

The only neck issue that I am aware of for people w/Ds is AAI

(Atlanto Axial Instability)

http://www.ds-health.com/aai.htm

and that is usually tested for between the ages 3-5 yrs. In the

meantime, it is a good idea to treat the child as though he might have AAI, and

handle the neck carefully (which *you* would do anyway…the major

thing that you, as a parent, would have to do about this is to make sure that -if

your child has to have surgery before he has been screened for AAI- the

anesthesiologist is skilled in working with babies with  Ds and is aware of the

need for extra caution when positioning the neck during the anesthesia process.

There are two growth charts as well…one for kids w/Ds, and

one for kids who are developing ‘typically’….when Danny was

little,  I  found it helpful to have the doc chart his growth on both charts so

we would have a clearer picture of how he was doing. Those charts are here:

http://www.growthcharts.com

And I agree with Sharon- don’t let the doc intimidate you.

There is a lot to learn, but you don’t have to learn it all at once…….the

big thing is that  you know your child better than any doctor could, so you are

a very important part of his health team. We changed docs more than once if we

got the feeling that the doc did not value Danny as a person. Our family doc

has always been great..he  delivered Danny, was wonderful when Danny was little

and very medically involved…sent us to specialists as needed…some

of the specialists have been real ‘pips’ though;-) Our family doc

is not an expert on Ds, but he has always been open to reading any info that I send

to him about treatments, etc and will give me his opinion on whether or not it

was safe to try with Danny.

I know that the majority of Ds clinics are very good, the

doctors and staff are excellent, caring and helpful. However, that is not the

case for all of them. The clinic that we took Danny to when he was a baby

(several times) charged a very inflated price, and didn’t give us much in

the way of useful information.

Kathy R(Danny is 10 ½ yrs old)

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of sharondcaswell

Sent: Saturday, January 10, 2009 10:12 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: Bloodwork requested

Hi, Margie!

Don't be alarmed! And don't let doctors scare you with

their " knowledge " of down Syndrome! You will soon find that you will

know more about Down Syndrome than most, if not all, of the " experts "

seeing your son.

The Serum IgA, IgG, IgE and Igm is testing for celiac disease. Kids

with Down Syndrome can be unable to process gluten. So, it is a

regular test to check for that.

My son is 3. When he was your son's age, I was overwhelmed at the

information out there. Then, my little guy had a severe health

crisis that drove me to learn all I could. You will always be your

son's best advocate, and you will know him better than anyone else.

Study, learn, and go with your gut. Most important for me was to

find a pediatrician that was familiar with down syndrome, but that

SAW my son as a valuable person first. Never as a " syndrome "

Congrats on your son!

Sharon

>

> Hello,

> Just returned from an appt with a new pulmonologist for my 6mo old

son

> with laryngealmalacia. Dr asked if I had bloodwork done already and

I

> assumed he meant TSH, and CBC for leukemia and he indicated that

there

> was other bloodwork I should have done and that perahps I would be

> better off in a DS clinic rather than my current pediatrician. This

was

> further emphasized when I was unaware of some test or info that I

> should be aware of regarding my son's neck. I feel so ill informed

and

> I thought I was keeping up. The bloodwork requested was Serum IgA,

> IgG,IgE and Igm.

> Can anyone shed any light on this blood test and remark regarding

neck?

> Thanks so very much-

> Margie

> Lucky mom to Colin

>

[Guest guest]

I'll ask my friend .

Her little 4 yr old son with DS, , ( he is TRI lingual btw.. Spanish, ASL and English) was just diagnosed with AAI.. but of a particular nasty kind.. not the usual.. around the C4 and C5.

I'll ask if they did any special blood work.

Steph

[DownSyndromeInfoExchange] Bloodwork requested

Hello,Just returned from an appt with a new pulmonologist for my 6mo old son with laryngealmalacia. Dr asked if I had bloodwork done already and I assumed he meant TSH, and CBC for leukemia and he indicated that there was other bloodwork I should have done and that perahps I would be better off in a DS clinic rather than my current pediatrician. This was further emphasized when I was unaware of some test or info that I should be aware of regarding my son's neck. I feel so ill informed and I thought I was keeping up. The bloodwork requested was Serum IgA, IgG,IgE and Igm. Can anyone shed any light on this blood test and remark regarding neck?Thanks so very much-Margie Lucky mom to Colin