Need to vent

[melanie]

Hi

Dr J doesnt know about Dr Bs visit.Dr J wont confirm dannys Pandas dx because he never had eleveted titers documented.She says inflamation somewhere in his sinus.

She gave us minocycline which I stopped because I think it may have caused some of this aggression .It did last time too.

Jody what can I say to her ,to convience her to up this? Hes been dxed with PANDAS by 5 drs

Sultan,Trifeletti,Dorenfield,Dr B and Dr J but now shes saying shes leaning towards inflamation!!!

mELANIE

[sptcmom]

Hi

Dr J doesnt know about Dr Bs visit.Dr J wont confirm dannys Pandas dx because he never had eleveted titers documented.She says inflamation somewhere in his sinus.

She gave us minocycline which I stopped because I think it may have caused some of this aggression .It did last time too.

Jody what can I say to her ,to convience her to up this? Hes been dxed with PANDAS by 5 drs

Sultan,Trifeletti,Dorenfield,Dr B and Dr J but now shes saying shes leaning towards inflamation!!!

mELANIE

Her ego aside, she really shouldn't be offended if you're seeking a second (or seventh) opinion for your child. Have you told her all these other docs have diagnosed Danny with Pandas? What about Pitand? She has to acknowlegde atleast that based in danny's history. If you feel its Pandas and she doesn't, shouldn't you pursue another doc who sees eye to eye with your beliefs? I believe a mother's instinct about her child is very accurate. Infact Dr K. gave a long lecture to DH about this.

Dr T told me she is the Pandas/Pitand authority at UMDNJ and I also learned she's taken over the Pandas research at UMDNJ. I am very curious now to actually meet with her. Not until Aug though.

[Fixit]

 

Dr T told me she is the Pandas/Pitand authority at UMDNJ and I also learned she's taken over the Pandas research at UMDNJ. I am very curious now to actually meet with her. Not until Aug though.

 

You are talking about the same woman who will not even consider raising Danny's dosage to 1.5G????

That would be scary....as she is dismissing pitands too???..

 

but i consider the terms interchangable....

the Condition, reaction, presentation...warrents the tittle...the trigger should be irrelivant.....Infectous trigger, autoimmune response...something like that

i think we need one acronym for the expression of symptoms....i think the subclassing is getting us in trouble!!

[peglem]

Jodie,

From professional experience I do that higher the dose the more antiinflammatory the IVIG is.

 

Can I ask what your professional experience is? Not only am I curious, but I think it would help me to have a context for your postings.

[melanie]

I just recieved a report from dr j,she always sends a report on the visits.It says clearly pandas syndrome along with other dxes Im on my way out but will post more later.I didnt know she was heading up anything at umdnj with pandas,and if she was why wouldnt she do more???!!!?!?!?!?!?

 

I dont want to leave her I want her to do everything MY WAY.

 

Melanie

[saidie10]

Ok so Im real confused again.

Saw Dr B and decided to do the 1.5 g dosage wit him.Dont know when that will happen because he has to do the insurance stuff.

 

Yesterday dan had a bad day at scholl Hit and kicked a teacher because he didnt get to do what he wanted(hes 16) not 4!!!

He hasnt behaved this way in sooo long.Needless to say Im depressed this is a new school and not how I wanted this to start.

 

He just handed me a note addressed to the eacher apologizing for his behavior and why he feels he lost it.Very sloppy,havent seen the sloppyness in a while either. HIs ticcing seems worse than its been in a while.

 

I am anxious angry and sad !! I dont know if I should do the 1g scheduled for friday with Dr J or what.I dont know when Dr B will be able to schedule the IVIG 1.5g or if its even possible ?

 

I dont like that I have no control over any of this.I want to go to my room and go to bed.

 

I took some of his research away as a punishment and now hes sweet as pie.So I know he can be .

 

Im scared to change mds what if dr B cant deliver.He says he can make him 95%?Is that really true.He says hes seen the same stuff with other kids.

 

I need support

Melanie

\\

 

Melanie, I am sorry you are struggling. I wish I could reach through this computer and give you a big hug! I am sorry your son is regressing right now and I know you really want to help him. It sucks you are trying to make such a hard decision. Wish I had a perfect answer for you. You will make the right choice and be confident that you are a great Mom who is helping her son and he will be thanking you one day!

[sptcmom]

Hi I was given her ref by an old prof of mine , an immunologist himself and he holds her in high regard. and then Dr T, and another local pediatrician who said Dr J was highly regarded at CHOP and has now moved to UMDNJ. I spoke with her about DS before IVIG and she extended me wonderful professional courtesy by reading DS's bloodwork and pointing out a couple things I was missing- all this sight unseen. She was very openly receptive to my mentioning Dr K's name and dosage of 1.5 gm/kg. Infact tried to extnd her services for the same so I wouldn't have to travel to Chicago- I was really touched. I spoke with her again after IVIG and again mentioned Dr K's protocol and she was once gain very supportive and assured me I would be fine in NJ. I therefore made an appt to see her. I met Melanie on the forums just recently and I am very confused with the situation. I guess I need to be prepared for what she may have to express at Ds's appt in august.

[melanie]

Im reading his blood tests and all her Dxes I notice his IG Qn serum is 2228 very high range is 549-1584 Ill call her tomorrow. What is that?IGA is low 50 range 61-348

 

Specific polysaccharide defiency,chronic rhionosinsitis recurrent infection worsening behavioral symptoms following infection

 

Doesnt that mean pitstand or and pandas

 

Her immpressions Autoimmune related condition Tic disorders Pandas like

 

 

HELP what can I do to convience her to up this IVIG!! I need papers that she will read and go with

 

Love you guys and thanks

 

Melanie

[sptcmom]

Im reading his blood tests and all her Dxes I notice his IG Qn serum is 2228 very high range is 549-1584 Ill call her tomorrow. What is that?IGA is low 50 range 61-348

 

Specific polysaccharide defiency,chronic rhionosinsitis recurrent infection worsening behavioral symptoms following infection

 

Doesnt that mean pitstand or and pandas

 

Her immpressions Autoimmune related condition Tic disorders Pandas like

 

 

HELP what can I do to convience her to up this IVIG!! I need papers that she will read and go with

 

Love you guys and thanks

 

Melanie

 

Hi

Low IGA serum total is a contraindication for IVIG I believe. I have heard of cases where the doc will go ahead anyways with careful monitoring. Dr J knows this as she told me herself to make sure I check the total IGA and if its low then not to go ahead with IVIG without extreme caution. So please research this further since I didn't since DS had normal IgA levels. I also did IgA subclasses just to be extra cautious. Dr K. agreed to this info about IgA. Even explained but I don't recall. Maybe someone else can chime in if they remember.

Why is IgG levels so high? have they always been so high? it happens in some kids. Also Post IVIG it happens but those need to go down. Is he accumulating donor antibodies for some reason? I'm confused. An immunologist needs to answer this one- Dr J or Dr B

Edited July 11, 2010 by sptcmom

[melanie]

Oh no Im concerned now .Ill email her right now ,this will give me the oppertunity to discuss my concerns .What should I say?

[sptcmom]

Oh no Im concerned now .Ill email her right now ,this will give me the oppertunity to discuss my concerns .What should I say?

Sorry Melanie we went to the beach and just got back. I would discuss his IgA levels being low and the implications for IVIG. Maybe she allows low dose IVIG with low IgA and mabe thats why she's been avoiding high dose with Danny. Ask her if the low dose IVIG is allowed with low IgA levels and if she thinks Danny is havng adverse reactions of any sort because of his low igA levels.

Mention to Dr B as well. IgA is imp for IVIG.

Also discuss his high IgG levels if they've always been high, are climbing after IVIGs every 21 days, why are they climbing? what are the implications?

All bloodwork needs to be compared with previous by your doc and with baseline meaning prior to IVIG bloodwork to keep things in perspective. As a researcher she knows all this and may have been totally aware, is directing her treatment as such but may have just failed to communicate all with you. Many physicians will not go technical with parents.

[melanie]

I emailed her earlier.She will respond to me tomorrow she usually does.

I was reviewing his blood work over the past 6 months and its definitly different

10-22-09 igg =900

11-19-09igg =788

1-10-10igg=821

 

wait i cant find the last page

Im reading on that Optigam (the brand of IVIG were using )has >95%intact igg molecule,maybe that means something?

and a low normal B cell count ??What the heck does that mean???

 

HELP

 

Melanie

Edited July 11, 2010 by melanie

[peglem]

Okay, breathe! Allie's IgA is MUCH lower than that! If Danny has had many IVIG treatments w/o anaphylactic shock, its probably not a problem. (Do consult Dr.J, but realize that she's read the lab results). The danger w/ low IgA is the small amount of IgA in the IVIG could cause an allergic reaction. Allie gets a solution that is very low in IgA. The other thing is, you are supposed to have high IgG levels after IVIG- that's what its for! Do you know what his levels were before he had any IVIG?

[sptcmom]

Okay, breathe! Allie's IgA is MUCH lower than that! If Danny has had many IVIG treatments w/o anaphylactic shock, its probably not a problem. (Do consult Dr.J, but realize that she's read the lab results). The danger w/ low IgA is the small amount of IgA in the IVIG could cause an allergic reaction. Allie gets a solution that is very low in IgA. The other thing is, you are supposed to have high IgG levels after IVIG- that's what its for! Do you know what his levels were before he had any IVIG?

Peglem, Im so glad you chimed in. Did your dd have a high dose IVIg? how did her doc compensate for low IgA? I heard from another mom in CA about low IgA levels and her doc going ahead anyways.

 

Melanie, Peglem is right about there not being an emergency situation. Doesn't sound like it. You just need clarification. We did Gamunex and I kept the boxes. Mine say 100 mg protein of which 98% is immuneglobulin and 15mg Glysine. Yours says low B cell count which is the memory cell and 95% immunoglobulin. Thats all I know about that.

Higher IgG levels post IVIG are normal esp if he's getting every 21 days. I'm not sure how much is too high and what his baseline was prior to IVIG.

Do still ask her about IgA implications. I believe the precaution for allergic reaction should be with each IVIG and not assuming if its been ok so far it will always be ok. Most treatments work that way. Nothing invasive is to be taken at face value per se. I think Dr K makes you sign the waiver/disclaimer each time you do an IVIG with him even if no issues after 1st one.

Again please remember pediatrics of any kind/specialty is a huge liability medical practice and I'm sure that Dr J is totally aware of everything in Danny's bloodwork.

Edited July 11, 2010 by sptcmom

[peglem]

Peglem, Im so glad you chimed in. Did your dd have a high dose IVIg? how did her doc compensate for low IgA? I heard from another mom in CA about low IgA levels and her doc going ahead anyways.

 

Yes, she gets 1.5g/kg every 4 weeks. Her doc just uses a solution that has low IgA. But, she also has almost no IgE, so possibly that puts her at lower risk of allergic reaction. My understanding, though, is that there is very low risk (but not no risk) for people with IgA deficiency, and the nurses who administer are very careful to watch for reaction.