Mystery Diagnosis PIDD Part 2 of 2

[GThureka]

the doctor who did the blood test is so busted because he never did part 2 of the blood test.

[deb310red]

A good doctor listens to their patients. He/She doesn't assume that their patient is "making things up" or "over-reacting" to symptoms. That's why it often takes so damn long to get a diagnosis: because a patient's time is wasted by some arrogant know-it-all doctor who refuses to follow the Hippocratic Oath.

[FightingforAutumn]

My little girl has been sick since she was born. She will be 4 on Sunday and has had over 50+ lung infection, over 25 ear infection, and over 30 hospital stays. We were finally diagnosed 2weeks ago with PIDD/CVID we started IVIG last Thursday and will start Sub-Q treatments at home with GammaGaurd with an in home nurse weekly. We are so thankful to finally know what is wrong with her.

[MamaFox79]

My mother was sent to heatologists, infectious disease specialist, among others and was not referred to an immunologist until later. There are many doctors who don't even know what CVID is. Make people aware!

[MamaFox79]

For those who don't know it is a hard thing to live with. My niece my niece has been home schooled because of all the doctors appointments and she has been having IVIG for 2 years and is very sanitary. Even when treatment is received there can still be ongoing problems.

[MamaFox79]

More people need to know about CVID. I believe there are more people who have it than 1 in 25,000-50,000. I am doing a report on it for school and everywhere i look people are misdiagnosed for years. My aunt died of it at age 19. My mother died from it (pneumonia) at age 43. My sister was diagnosed at age 35 and her daughter at age 10. They might not have been diagnosed either but because of the history, my sister knew what to ask and look for.

[SzeChengg]

Aww.. the daddy cried for his son. So touching!

[rydag11]

@SzeChengg Made me cry too

[zeeab]

Doctors hate parents who are aware and aggressive in finding their children help; they dont like anyone telling them anything. That goes for adults too, who are aggressive in finding out whats wrong with them. Some people just shouldnt be doctors because they are asshats and to insecure and have god complexes. It's my body, or my childs body and we have every right to be aggressive in finding good care for them. Damn sure if it were their kids illness they would find out what it is!

[errorafterdark]

I would make a great doctor because I am a hypochondriac.

[MissMaddy881]

@errorafterdark lol

[mellynn143]

God bless u Kathy! It's unfortunate that unless someone has lived it, most will not understand it. Thank God for IDF & Jeffrey Modell foundation who help to bring awareness to PIDD. IGG replacement therapy changes the quality of one's life! Severe, persistent, unusual and recurrent infections that do not respond to medication...(How is this not a problem? An Immunological panel proves it!) WTG Parents!

[psp785]

wait so they went through all of this because the second part for the immunize test was not completed

[auroraborealisrox]

@psp785 oh my gosh i think you're right! They probably would've found out sooner if they had bothered to finish the test.

[PriestessYuki]

i can totally relate... I was diagnosed with CVID about 5 months ago. I remember the look of relief on my mom's face once we finally found out what was wrong with me. it sucks that it took my doctor 15 and a half years to figure it out.

[eajanzen]

And then there's the 'weird' ones like me who don't tolerate IVIG or SCIG and they don't know what to DO with me right now. I've been waiting around for months while they 'look into things'...

[theflower1267]

@eajanzen :

exactlyyyy ive had a doctor before who was like u will be okay nothn is wrong, but it turned out to be a serious illness

[neilrtucker11]

the thing i like about this show is that theres always a happy ending

[dithcutie]

that guy on 2:18 looked very red...

[TJones0868]

Wish there were more of the "Smart" Dr's around .. It sure would make a difference in my life

[BlehxIshxMe]

@mylieftw

Hi there. xD I know this is random, but I read your comment and was alerted. I got diagnosed about two years ago with PIDD, and I hope everything has worked out for you then! If not, then you should request blood work, overlooking your IGA, IGM, IGE, and IGG, although with T-cells, and B-memory cells. If those things are low, your doctor should refer you to an immunologist. :] Good luck!

[markleventhal]

Kathy is a fabulous advocate for PIDDs and IDF, besides being really likable

[LargeOdalisque]

I cried. This was beautiful.

[HououMinamino]

Aww, that poor dad! He looked like he was tearing up. I don't blame him.

[Ko252]

@mylieftw First of all, I am not trying to diagnose over the web. Second, if you have doubts, I would suggest to contact a doctor near you.

[Ko252]

@mylieftw there are several reason for this. for instance, if you are growned up, and have children in day care etc.

[lovehamsters14]

he's so cute.

[florry61]

@lovehamsters14

[florry61]

-and healthy! Thanks to a wise Immunologist. I'm 1 of 100 with PIDD, living in Norway, but didn't get the diagnosis until 2 years ago, when I was 47. If my former family MD had understood the phrase:'to be a lumper, and not a splitter', I would have been healthy now. All the infections, stomach problems in my life has cost me a lot of problems; as some few PIDD pat. get: Chronic fatigue, despite adequate treatment, the same as Isaac gets. Thanks A LOT for sharing Isaac, mam/dad, MDs!

[florry61]

My comments, is a respons to your sentence: He is so cute, and I added '-and healthy' ! I know this is a very rare illness, and I am that happy for Isaac and his family, that got the diagnosis that early, and of course the treatment! We can live with the infusion every week, sometimes more than one times, - some of us three times a week for the rest of our life. Generally; I have been that much better, since my B-cells are 'in shape' now, thanks to the best immunologist in Norway! THANK, YOU!

[TheMelamia]

Ahhh, bless you Isaac. What a sweetheart!

[missicamps]

No One should judge anyone else's for the emotions they feel, how hypocritical! You are NOT in their shoes! I'm very thankful that this family got answers and if doing well! If your not buying people's food it's none of your business what they eat!

Some people just have to find something about others to criticize for they do not have enough life of their own!

[xSimplyAmusedx]

oh wow! did the doctor do all that just to feel proud of himself???

[fareastern00]

@xSimplyAmusedx i hope he jus said the wrong words haha

[trinagranger]

Awwww i wish them all the best!

[MachineAmbition]

lol now he can eat fries and pizza and other junk the whole family eats

[blondecat666]

A 'lumper' or a 'splitter'. It makes me sad that I have to hear that from a serious-looking doctor. I am far from being a doctor, but isn't that the first thing you'd try to do.... to diagnose the illness, rather than treating the symptoms????

[Fyrato]

Sometimes it's hard to tell which is a symptom and which is an illness. Especially with rare diseases. If you were a doctor and saw a few purple bruises on a boys leg, you want to think that it's just from a fall, and not immediately leukemia. I guess that's why it's so hard for these individuals to find a proper diagnosis.

[ilovesparky13]

im so happy that Isaac is healthy now.

[Ko252]

@Fyrato The second problem is to actually think about the disease. You see what you look for.

[dithcutie]

@Fyrato to find out of it is leukemia that boy with bruises needed some blood testing to tell if it is from a fall or it is leukemia...

[BlehxIshxMe]

Wow, this story is so sweet. I actually typed in PIDD into youtube because I was diagnosed with it back in August of this year.

This is very inspiring for someone like me. Thank-you so much for posting.

[TashaRichardsonFan]

Finally the figure this out! Thanks God!

[M1G34]

the mom in this episode is such a sweetheart (= i hope the best for the family.

[MachineAmbition]

@M1G34 she actually annoys me, because she oozes anger all the time...justified at the time, but she could have toned it down for the show

[M1G34]

@MachineAmbition I think that she is completely justified, and that it is expected for her to get somewhat angry whenever she thinks of a situation like this. It's her child who she's talking about, here.

[MachineAmbition]

@M1G34 I understand why she's so upset, but she doesn't really seem to be able to control it at all. I just hope she doesn't act this way most of the time outside of the show. The father, for instance, is clearly upset but he doesn't seem like the type of person who makes customer service work hell.

[fareastern00]

@MachineAmbition tone it down for the show?? but she is not a tv celebrity or actress. =) isnt it good to know the show is as real as it can be, and showing true emotions??

[fareastern00]

@M1G34 i can tell she is very good mother, thats why she gotten very angry over the doctors not taking their case seriously. =)

[littletugartbug]

:) Isn't this show the best? I love this show.

[Dado75]

Awesome story; I am so happy for you guys!

[crisshady198666]

i am very glad for ur family

[mleady1971]

This is so great to see! I'm glad to see it getting some attention- especially from this show!

[johngordonboyle]

Great to see some familiar faces here :)

[AlaneMichelle]

Yeay! I am so happy for your family!!