Not sure where to begin

[sdrew99]

Hello.

 

I just found this site last night, and after reading all night about PANDAS, I feel fairly convinced that this could be what my 8 year old daughter is dealing with.

 

A bit of background: When she was 6, I took her to the doctor for strep, and a funny sore she had on her ear (impetigo). She was put on abx, sent home. Over the next day, she developed a red rash and fluid-filled blisters appeared all over her body. She was rushed to the hospital and put in ICU for 4 days, diagnosed with a Staph infection called Scalded Skin Syndrome http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002328/ . She was in the hospital for a week, received heavy-duty antibiotics and was fine after that. While in the hospital she had some sudden behavior changes (which I attributed to the situation) She was incredibly angry, said she hated us and that she "knew" we didn't love her.

 

Over the next few months, she developed some serious fears involving bedtime, unable to sleep, major anxiety, etc. It got so bad that we brought her to a therapist, which wasn't much help. The next doctor was a nurse practitioner who put her on zoloft, and if that didn't work (didn't) she wanted to move to anti-psychotics. We quickly took her off everything and moved to a homeopathic doctor to try and treat the anxiety with homeopathy. We had some success with that, but the past few months, the anger and rage and separation anxiety has been unbearable. In researching bipolar, it lead me to PANDAS.

 

Some things that make me think PANDAS:

 

- we have a strong autoimmune link - her little brother has type 1 diabetes and has extremely low levels of IgA.

- the staph infection from the hospital, and the symptoms appearing after that, she has has also had strep & scarlet fever

- the fact that she never gets sick! But her symptoms are always worse when one of us is sick.

- she has a huge, huge, huge fear of throwing up. it's like a tic almost, where she won't sit anywhere in the house where she has thrown up before, or someone else has.

 

I guess my question is - what do I do from here? Do I call up her pediatrician and say, "I think she has this....can you do some tests?" Do you see an immunologist? An endocrinologist? We have access to an endo, because of my son - I wonder if he'd do the blood tests for me.

 

Thank you in advance for any advice or direction. We are in Arizona, not sure if there are any doctors here that are familiar with PANDAS.

[Chemar]

welcome

just bumping your post up for the forum members to see

[EAMom]

Hello.

 

I just found this site last night, and after reading all night about PANDAS, I feel fairly convinced that this could be what my 8 year old daughter is dealing with.

 

A bit of background: When she was 6, I took her to the doctor for strep, and a funny sore she had on her ear (impetigo). She was put on abx, sent home. Over the next day, she developed a red rash and fluid-filled blisters appeared all over her body. She was rushed to the hospital and put in ICU for 4 days, diagnosed with a Staph infection called Scalded Skin Syndrome http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002328/ . She was in the hospital for a week, received heavy-duty antibiotics and was fine after that. While in the hospital she had some sudden behavior changes (which I attributed to the situation) She was incredibly angry, said she hated us and that she "knew" we didn't love her.

 

Over the next few months, she developed some serious fears involving bedtime, unable to sleep, major anxiety, etc. It got so bad that we brought her to a therapist, which wasn't much help. The next doctor was a nurse practitioner who put her on zoloft, and if that didn't work (didn't) she wanted to move to anti-psychotics. We quickly took her off everything and moved to a homeopathic doctor to try and treat the anxiety with homeopathy. We had some success with that, but the past few months, the anger and rage and separation anxiety has been unbearable. In researching bipolar, it lead me to PANDAS.

 

Some things that make me think PANDAS:

 

- we have a strong autoimmune link - her little brother has type 1 diabetes and has extremely low levels of IgA.

- the staph infection from the hospital, and the symptoms appearing after that, she has has also had strep & scarlet fever

- the fact that she never gets sick! But her symptoms are always worse when one of us is sick.

- she has a huge, huge, huge fear of throwing up. it's like a tic almost, where she won't sit anywhere in the house where she has thrown up before, or someone else has.

 

I guess my question is - what do I do from here? Do I call up her pediatrician and say, "I think she has this....can you do some tests?" Do you see an immunologist? An endocrinologist? We have access to an endo, because of my son - I wonder if he'd do the blood tests for me.

 

Thank you in advance for any advice or direction. We are in Arizona, not sure if there are any doctors here that are familiar with PANDAS.

 

Contact Peglem. She is also in AZ and may be able to recommend docs. You can send her a PM.

[Kiera]

Hi sdrew99, we have just started a pandas support group here in az last month, I'll pm you later today (as I'm running out the door now) look for the message in the top right cornor of the screen!

[peglem]

Hello.

 

I just found this site last night, and after reading all night about PANDAS, I feel fairly convinced that this could be what my 8 year old daughter is dealing with.

 

A bit of background: When she was 6, I took her to the doctor for strep, and a funny sore she had on her ear (impetigo). She was put on abx, sent home. Over the next day, she developed a red rash and fluid-filled blisters appeared all over her body. She was rushed to the hospital and put in ICU for 4 days, diagnosed with a Staph infection called Scalded Skin Syndrome http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002328/ . She was in the hospital for a week, received heavy-duty antibiotics and was fine after that. While in the hospital she had some sudden behavior changes (which I attributed to the situation) She was incredibly angry, said she hated us and that she "knew" we didn't love her.

 

Over the next few months, she developed some serious fears involving bedtime, unable to sleep, major anxiety, etc. It got so bad that we brought her to a therapist, which wasn't much help. The next doctor was a nurse practitioner who put her on zoloft, and if that didn't work (didn't) she wanted to move to anti-psychotics. We quickly took her off everything and moved to a homeopathic doctor to try and treat the anxiety with homeopathy. We had some success with that, but the past few months, the anger and rage and separation anxiety has been unbearable. In researching bipolar, it lead me to PANDAS.

 

Some things that make me think PANDAS:

 

- we have a strong autoimmune link - her little brother has type 1 diabetes and has extremely low levels of IgA.

- the staph infection from the hospital, and the symptoms appearing after that, she has has also had strep & scarlet fever

- the fact that she never gets sick! But her symptoms are always worse when one of us is sick.

- she has a huge, huge, huge fear of throwing up. it's like a tic almost, where she won't sit anywhere in the house where she has thrown up before, or someone else has.

 

I guess my question is - what do I do from here? Do I call up her pediatrician and say, "I think she has this....can you do some tests?" Do you see an immunologist? An endocrinologist? We have access to an endo, because of my son - I wonder if he'd do the blood tests for me.

 

Thank you in advance for any advice or direction. We are in Arizona, not sure if there are any doctors here that are familiar with PANDAS.

 

Contact Peglem. She is also in AZ and may be able to recommend docs. You can send her a PM.

I PM'd you- check the upper right hand corner by your screen name.