update

[amy s]

Today was dd's first rheumatology appt. Her pediatrician wanted their input regarding IVIG and antibiotics, etc. They said 'wow, the evidence is pretty convincing that she has PANDAS' but they have never seen a pandas patient before in that clinic. They sounded like they felt that a steriod burst trial and IVIG were her best options for treatment and are going to call her pediatrician to discuss it further. They did say to stay on antibiotic therapy and didn't comment when I asked about Azithromiacin rather than the PCN that she's on now. I think they were taking it all in.

I'm so exhausted. Aren't you guys? This is just overwhelming sometimes. The days that she doesn't have medical appointments or tests, I get called to rush to the school and take her home because of meltdowns (2 or 3 times per week). And if anything special is going on at school I have to be there just in case. I'm constantly having meetings with someone from the school. I'm just exhausted. Anyway, a question... in making her IEP they classified her as 'emotionally disturbed' rather than the one I wanted which was 'other health impaired'. I don't remember all the criteria right now but i didn't feel that she met the criteria that they chose. anyway, so I did take some issue with that but they said the services don't change. They are also trying a 'behavior plan' which I wonder how that will help. I mean, this is not like she is doing this because of no discipline. Anyway, I hope it helps. They are also getting a para for her full time and they will put her in the safe defense training. All her testing came back in normal range except of course the mental health testing that the school did.

[EAMom]

Hi Amy,

my vote is for a 1-2 mo. trial of Azithromycin to see if it helps your dd's behavior. I think more strains of strep are "resistant" (to use the word loosely) to penicillin or amoxicillin nowadays. It's certainly worth a trial, IMO is safe, and cheaper than IVIG (which most people pay for out of pocket).

[Lacy]

Today was dd's first rheumatology appt. Her pediatrician wanted their input regarding IVIG and antibiotics, etc. They said 'wow, the evidence is pretty convincing that she has PANDAS' but they have never seen a pandas patient before in that clinic. They sounded like they felt that a steriod burst trial and IVIG were her best options for treatment and are going to call her pediatrician to discuss it further. They did say to stay on antibiotic therapy and didn't comment when I asked about Azithromiacin rather than the PCN that she's on now. I think they were taking it all in.

I'm so exhausted. Aren't you guys? This is just overwhelming sometimes. The days that she doesn't have medical appointments or tests, I get called to rush to the school and take her home because of meltdowns (2 or 3 times per week). And if anything special is going on at school I have to be there just in case. I'm constantly having meetings with someone from the school. I'm just exhausted. Anyway, a question... in making her IEP they classified her as 'emotionally disturbed' rather than the one I wanted which was 'other health impaired'. I don't remember all the criteria right now but i didn't feel that she met the criteria that they chose. anyway, so I did take some issue with that but they said the services don't change. They are also trying a 'behavior plan' which I wonder how that will help. I mean, this is not like she is doing this because of no discipline. Anyway, I hope it helps. They are also getting a para for her full time and they will put her in the safe defense training. All her testing came back in normal range except of course the mental health testing that the school did.

 

Oh my goodness - I had to make sure I wasn't reading a post from myself! Seriously, when I got to the "I'm so exhausted part"... it was a mirror image of what we've been through - right down to the various doctor's appointments or picking up DD from school.

 

DD has an appointment tomorrow with her pediatric Infectious Disease specialist for a resurgance in her meltdowns recently. It seemed to have come on about two weeks before she got sick with a flu-like bug, and it's been downhill from there. Next week we have an appointment to restart the Child Studies meetings with the school... the new assistant principal is not up to speed with where we left off and how we'd deal with DD's meltdowns. . . instead he's in his own little world and making things so much worse on us and DD. I can't stand the man and I've told him so in a lapse of good judgement and frustration.

[michele]

Lacy how old is your daughter? Does the school not understand this is neurological? I think you need to come armed with info about PANDAS and Tourettes to that meeting and read it to them word for word. Also bring letters from your Dr. that your daughter will require accommodations due to her illness. I don't think ED is the way you should do the IEP. She is OHI. Go online and look at the Tourttes association website and Leslie Packers Tics Plus site. We went around with the school last month. I got little because my son is not a behavior problem and is average intelligence so they are denying him services other then OT for OHI. They skated over any area he had weaknesses in. I am giving them a grace period to do the right thing. He is only in grade 1 and has a great teacher but she is not super woman and he has visual discrimination issues from the dysgraphia and hyptonia due to the diagnosis of TS. With a diagnosis of PANDAS and ADHD they dug in their feet and refused any accommodations. I thought he should at least get tutoring but not by their standards even though he is in the 3rd % for his age in visual perception and not getting Math concepts. I will give it some time. I think his teacher will make the accommodations on her own but that doesn't help next year though. I think ED is not the correct label for your child because it is a medical reason that is causing her issues. Maybe you should call an ed advocate from your county. I did that also but it didn't get me much in the way of help! At least I let them know I was on the ball with my son's health problems. It helped to have other people along with me.

I've often thought of a rheum Dr. to discuss PANDAS. Did they seem to get it? I hope they will help you. Try the long term antibiotics it may help keep her immune system from getting strep again. I have noticed my son has become resistant to some and they stop working over time.

 

Michele

 

 

Today was dd's first rheumatology appt. Her pediatrician wanted their input regarding IVIG and antibiotics, etc. They said 'wow, the evidence is pretty convincing that she has PANDAS' but they have never seen a pandas patient before in that clinic. They sounded like they felt that a steriod burst trial and IVIG were her best options for treatment and are going to call her pediatrician to discuss it further. They did say to stay on antibiotic therapy and didn't comment when I asked about Azithromiacin rather than the PCN that she's on now. I think they were taking it all in.

I'm so exhausted. Aren't you guys? This is just overwhelming sometimes. The days that she doesn't have medical appointments or tests, I get called to rush to the school and take her home because of meltdowns (2 or 3 times per week). And if anything special is going on at school I have to be there just in case. I'm constantly having meetings with someone from the school. I'm just exhausted. Anyway, a question... in making her IEP they classified her as 'emotionally disturbed' rather than the one I wanted which was 'other health impaired'. I don't remember all the criteria right now but i didn't feel that she met the criteria that they chose. anyway, so I did take some issue with that but they said the services don't change. They are also trying a 'behavior plan' which I wonder how that will help. I mean, this is not like she is doing this because of no discipline. Anyway, I hope it helps. They are also getting a para for her full time and they will put her in the safe defense training. All her testing came back in normal range except of course the mental health testing that the school did.

 

Oh my goodness - I had to make sure I wasn't reading a post from myself! Seriously, when I got to the "I'm so exhausted part"... it was a mirror image of what we've been through - right down to the various doctor's appointments or picking up DD from school.

 

DD has an appointment tomorrow with her pediatric Infectious Disease specialist for a resurgance in her meltdowns recently. It seemed to have come on about two weeks before she got sick with a flu-like bug, and it's been downhill from there. Next week we have an appointment to restart the Child Studies meetings with the school... the new assistant principal is not up to speed with where we left off and how we'd deal with DD's meltdowns. . . instead he's in his own little world and making things so much worse on us and DD. I can't stand the man and I've told him so in a lapse of good judgement and frustration.

[Dedee]

Ugggg, that really bugs me that they would label her "emotionally disturbed". I agree that you should take medical records and any other supporting information and ask that it be changed. I am sure they will think it is no big deal but I assure you it is. Of course my sons education file reflects that he has OCD, and in the past I have spoken with the teachers each year about the best way to handle things, etc. Well last year he was doing so well that I didn't say anything at the beginning of the school year. However, while on a field trip I was talking with one of his teachers and somehow his "quirks" came up so I mentioned that he actually has a diagnosed OCD but has been very stable lately. She responded "Oh yes, I know, I read it in his file". OK, so I didn't really take to much offense because she was very nice and he did well in her class. But my point is, that many people in the future will read your daughters file and have pre-conceived ideas before ever having an experience with her. These things really need to be treated with professionalism and tact. Some people are so judgemental. That attitude makes me so mad. As if the parents don't have enough to deal with, now they have to deal with uninformed, judgemental, inconsiderate adults. Sorry for the rant. Obviously I had issues on this topic. I hope you have a positive outcome. Good Luck. I'll be praying for you!

 

Dedee

[myrose]

I know that she is young, but that written in her file could very well effect her as an adult....jobs, ect...

I would get that off. That makes me EVEN MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!