Can I moan, whine and cry for a moment?

[kferricks]

I feel so lost, scared and confused. I wish there was someone who could hold my hand and guide me step by step. It is so hard watching her terrified eyes. If people went to school to become doctors, then at one point they must have had a love of learning. They must have had that WHAT IF factor in thier brains. At what point do they stop wanting to learn so that they are better able to help the general population?

 

Ok, I will not put my big girl panties back on and get on with life; wherever that may lead.

[thereishope]

I've thought that exact thing before. You'd think more would embrace our children, see them as a challenge they haven't had in awhile, see them as their ability to make a mark in the world and in science. I have no answer on that.

 

At what point do they stop wanting to learn so that they are better able to help the general population?

 

[SarahJane]

 

 

Ok, I will not put my big girl panties back on and get on with life; wherever that may lead.

 

 

I like your Freudian* slip of the word "not" that was supposed to be "now", right?

 

I agree with everything you say! First do no harm...don't they believe that anymore? You moan, whine and cry as much as you want to for as long as you like!!!

 

 

 

* Note: Reference to Freud does not in anyway reflect any agreement by the poster with his psychological methods, which have most assuredly helped limit the chances of us getting PHYSICAL ILLNESS diagnoses for our mentally ill children. He may have made some contirbutions to the field, but BOY did he set some of us back centuries.

[tired mom]

We are all there for you so no need to feel alone. I know that is easier said then done because everyone knows that feeling of total despair. I am so grateful for this forum and everyones kind words that I don't know how I survived all the years before I found this forum. That is when I felt helplessly alone .

[peglem]

I feel so lost, scared and confused. I wish there was someone who could hold my hand and guide me step by step. It is so hard watching her terrified eyes. If people went to school to become doctors, then at one point they must have had a love of learning. They must have had that WHAT IF factor in thier brains. At what point do they stop wanting to learn so that they are better able to help the general population?

 

Ok, I will not put my big girl panties back on and get on with life; wherever that may lead.

What can we do to help?

[EmersonAilidh]

Hugs from Texas. <333333333

I know it's discouraging now but every day kids like myself & parents like yourself are helping to transform that "what IF" into a "what IS". Keep your head up, girl. One day P.A.N.D.A.S. will be as common an acronym as ADHD & we will have our resilient selves to thank.

[kferricks]

Thanks all. I am gratefull to have this place to come.

 

LOL! I will put my big girl panties on!

 

I'm sorry, I'm just frustrated and feel so dumb. The first 13 days that my DD was on Keflex, I also kept her on the Zolof 25mg. I was afraid to take her off of them after all we been through. (that is not to say that I've noticed any difference being on it)I finally took her off of it and her last dose will be Friday.

 

While I have notices some improvement, I'm hoping to see a bigger one. I'm terrified of what is to come on Saturday.

 

Monday, I am applying for extra insurance. I am also planning on calling Dr. B in Conneticut and making a regular appointment. My own doctor had said that after this round of Keflex that I needed to find someone else who specializes in PANDAS.

 

Where can I get a list of all the tests that I should ask him for? Maybe if he does these tests, it will convince him to put her on an antibiotic till I can get her in Conneticut.

 

Plus, I have her in an OCD clinic 4 days a week. I don't think the psychiatrist there believes in pandas and wanted me to up her zolof last week to 50mg. So, I'm worried about what they will say...

 

I have no diagnosis for PANDAS. But, I just can't see ocd comming on that strong out of the clear blue just because.

So, I talked my doc into putting her on the antibiotic for 20days. Because I wanted to see a difference. I wanted to know if maybe she has PANDAS. The only main difference that I can see is that she sounds more like herself and most of her movements are not so stiff.

 

I worry that I took matters into my own hands and what if I'm making something worse? All I do is worry anymore.

 

I think my DDs' OCD is making me OCD! (jk) Honestly though, next week is comming too soon and I'm not making progress quick enough.

 

Thanks for being a shoulder to cry on and a warm place to come.

 

Jodi

[philamom]

Here are some of the blood tests to get you started:

 

Immunoglobulin G Subclasses Panel 1,2,3,4 & A,G,M

Immunoglobulin G, Serum

Haemophilus Influenza Type B IGG

Streptococcus Pneumoniae IGG AB (14 Serotypes)

Anti-Streptolysin O

DNASE-B Antibody

CBC & Diff/Plt

[kferricks]

Here are some of the blood tests to get you started:

 

Immunoglobulin G Subclasses Panel 1,2,3,4 & A,G,M

Immunoglobulin G, Serum

Haemophilus Influenza Type B IGG

Streptococcus Pneumoniae IGG AB (14 Serotypes)

Anti-Streptolysin O

DNASE-B Antibody

CBC & Diff/Plt

 

 

Thanks! Am printing this out now.

[Fixit]

Here are some of the blood tests to get you started:

 

Immunoglobulin G Subclasses Panel 1,2,3,4 & A,G,M

Immunoglobulin G, Serum

Haemophilus Influenza Type B IGG

Streptococcus Pneumoniae IGG AB (14 Serotypes)

Anti-Streptolysin O

DNASE-B Antibody

CBC & Diff/Plt

 

 

Thanks! Am printing this out now.

 

if i could just add a couple while your in there..

 

mycoplasma pneumaiae. igg and igm

thyroid..tsh t3 t4

vitamins D3 B12

Mins Mag and Ferritin

 

the last 3 are basic to a doc and they usually dont' mind checking those

[tired mom]

It sounds like your dd's OCD is pretty intense now. I know when my dd's OCD was really bad her psyc kept increasing the Zoloft and when it was over 100mg I just decreased it and then stopped it. It did nothing at all for her. I know the frustration you feel but you are on the right track. It will get better.

[kimballot]

I am feeling for you, Shadowtails. Keep investigating and find the docs that will think outside of the box. Stay in touch here find support. Also - if you are going to call Dr. B, you can ask him for a list of bloodwork that he recommends - then have your pediatrician order it before you consult with Dr. B. That could speed things up a bit.

[lmkmip67]

You can call and make an appointment with Dr. B. His office will send you an order for all the blood tests you need. then you should be able to go to your local lab where your insurance is accepted and get them done. that is what we did. They will send the results to Dr. B. I know how frustrating, scary, uncertain this is. I am feeling the exact same way. I am trying to so hard to not let it all get me down. But it is hard. I think when it is new it can be overwhelming. I know it is for me. Keep putting one foot in front of the other, try to focus on one day at a time and we will all make it through this together.

 

Lisa

[kimballot]

* Note: Reference to Freud does not in anyway reflect any agreement by the poster with his psychological methods, which have most assuredly helped limit the chances of us getting PHYSICAL ILLNESS diagnoses for our mentally ill children. He may have made some contirbutions to the field, but BOY did he set some of us back centuries.

Sarah Jane - You mean my son's 13 years of problems every time he has a sinus infection ISN'T because I potty trained him too soon or because he secretly wants to marry me?

It is pretty funny that people will go to great lengths to use Freudian theory (Which has NO SCIENTIFIC EVIDENCE) to explain our kids' problems, but they accuse us of grasping at straws when we apply the evidence from Swedo and Cunningham to our kids' situations~!

[thereishope]

I'm assuming you read on her that some PANDAS kids will react in a negative way to SSRI's. If they are taken, they may have to be dosed differently (lower) than what is "normally" given. By weaning her off of the Zoloft, you will at least have a true picture if antibiotics is helping. Otherwise, if she does start to improve, the psych will say it's because of the Zoloft and you won't really know what helped.

 

 

Thanks all. I am gratefull to have this place to come.

 

LOL! I will put my big girl panties on!

 

I'm sorry, I'm just frustrated and feel so dumb. The first 13 days that my DD was on Keflex, I also kept her on the Zolof 25mg. I was afraid to take her off of them after all we been through. (that is not to say that I've noticed any difference being on it)I finally took her off of it and her last dose will be Friday.

 

While I have notices some improvement, I'm hoping to see a bigger one. I'm terrified of what is to come on Saturday.

 

Monday, I am applying for extra insurance. I am also planning on calling Dr. B in Conneticut and making a regular appointment. My own doctor had said that after this round of Keflex that I needed to find someone else who specializes in PANDAS.

 

Where can I get a list of all the tests that I should ask him for? Maybe if he does these tests, it will convince him to put her on an antibiotic till I can get her in Conneticut.

 

Plus, I have her in an OCD clinic 4 days a week. I don't think the psychiatrist there believes in pandas and wanted me to up her zolof last week to 50mg. So, I'm worried about what they will say...

 

I have no diagnosis for PANDAS. But, I just can't see ocd comming on that strong out of the clear blue just because.

So, I talked my doc into putting her on the antibiotic for 20days. Because I wanted to see a difference. I wanted to know if maybe she has PANDAS. The only main difference that I can see is that she sounds more like herself and most of her movements are not so stiff.

 

I worry that I took matters into my own hands and what if I'm making something worse? All I do is worry anymore.

 

I think my DDs' OCD is making me OCD! (jk) Honestly though, next week is comming too soon and I'm not making progress quick enough.

 

Thanks for being a shoulder to cry on and a warm place to come.

 

Jodi

Edited October 31, 2010 by Vickie