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[mama2alex]

I’ve been reading this forum for several weeks now, but have not been able to gather the energy (or organize my thoughts) enough to post until now.

 

Our 9 year old son became ill with a sore throat, fever, vomiting and pneumonia on June 6th of this year. His throat wasn't that red, so he wasn't checked for strep. He was prescribed Amoxicillan and two asthma medications. (This was his 6th pneumonia.) He also has asthma and allergies and has struggled with yeast overgrowth (that affects his behavior) for years, so we’ve known for a while that his immune system is stressed and not performing well.

 

He had what looked like a panic attack at bedtime 5 days into his illness and from then on was convinced there was a robber in our house. He continually asked us to check and would get very agitated at the slightest noise. He had headaches, stomach aches, slightly shaky hands, frequent nightmares, a lot of separation anxiety (something he had before but nowhere near this severe) and constantly asked us to check the house for a robber. He also had a terrible time getting to sleep every night and would wake up in the middle of the night terrified and ask us to “check.”

 

After consulting with our pediatrician, a developmental pediatrician, a neurologist and psychiatrist at Stanford Hospital’s ER, a psychologist, another psychiatrist and two pharmacists (to see if it could be a reaction to the medications) and receiving a diagnosis of OCD and Separation Anxiety Disorder, I joined the OCD and Parenting Yahoo Group and quickly learned about PANDAS. It seemed to fit.

 

We too have been helped tremendously by Diana P. (through PANDAS Network) as well as a few other wonderful moms in our area who have taken the time to talk on the phone and email. Their help and support have been incredible and we wouldn’t be this far along without it.

 

We’re now working with a pediatric psychiatrist in Palo Alto, CA (I think several other parents here are working with her) and started on Azithromycin 3 weeks ago. We saw his symptoms decreasing within 4 days of starting. We also tried a 5 day prednisone burst, but stopped after 3 days because he seemed to be getting more anxious, oppositional and angry, and started to hear “people whispering” in the other room. The psychiatrist also checked ASO and Anti-DNase B titers – ASO was normal range and Anti-Dnase B was slightly elevated (340). Throat culture was negative, but this was two months after he was ill. We just sent a blood sample to Dr. Cunningham and we’re having a phone consultation with Dr. K in Chicago this Tuesday.

 

I have a million questions tumbling around my head, but thought I would introduce myself first and share our story. We don’t yet have a definitive PANDAS diagnosis, but at this point it’s hard for me to believe it’s not PANDAS. In any case, I am so thankful to have found this group.

 

Any thoughts or suggestions would be more than welcome. This seems like a fantastic group of parents.

 

Jennifer

[ShaesMom]

Welcome to our little club Jennifer--so sorry you needed to join us!

 

I talk to Diana often by phone or email. You are very lucky to have such a great source of support and info so close. I hope she has talked with you about having a complete immunological blood work panel done on your son especially since he has had pneumonia 6 times. I've included a link that gives a brief description of primary immune deficiencies.

 

 

http://www.primaryimmune.org/about_pi/about_pi.htm

[T_Mom]

Welcome Jennifer--

I am so very sorry your dear child has been going through this tough, tough time...and that you had to find this forum!--but it sounds like you have been able to get some excellent support along the way and are well tied into some great resources in your area.

This forum of parents is both honest and caring--concerned for each other and our children. Because most of us are suffering some form of PTSD don't let that scare you! It is a caring group and an understanding honesty prevails. Welcome.

[EAMom]

Welcome Jennifer,

I should say that our dd seemed almost worse on her steroid burst (although she already starting to ramp b-4 the burst, which was one reason we did the burst) but there was an improvement 2 weeks later.

[sf_mom]

Jennifer,

 

I've been meaning to e-mail and was wondering how you are doing? We have schedule IVIG for September 18th, 19th........ One thing I think you should read, is the information about IgG subclasses 'PDF' on pandasnetwork.org. In that article, it talks about having susceptibility to pneumonia. I'm in a rush right now but will post the link later.

 

Glad to see you posting and fantastic that your son is doing better.

 

-Wendy

[thereishope]

.

Edited October 18, 2016 by vickie

[mama2alex]

Thanks to all of you for your replies! Specific responses to some of your comments:

We’ve had some immunological blood work done, but I’m not sure whether we’ve done everything we need to. We’ve had IgG, IgE, IgM and I think IgA tested – all within normal ranges. But there’s no way his immune system can be “normal” with everything we’ve seen. I’m very interested to get the link to the info on IgG subclasses, because this doesn’t sound familiar. Our pulmonologist wanted to test his titers to Pneumovax before and after giving the vaccine, to see what the response is, but I have been too scared to give him any more vaccines since doing my homework on these when he was 3. This is something I plan to discuss with Dr. K on Tuesday.

It sounds like the steroid burst has different effects on different kids. The psychiatrist indicated that she’s seen these somewhat negative reactions in other PANDAS kids, but it does seem like these are just side effects and the prednisone is actually having an anti-inflammatory effect, because we definitely continued to see more improvement after we took him off the steroids.

I love the idea about jotting notes down during the day. I am keeping a log on my computer, but it’s not always easy to get to it, and I sometimes let it go for days. The written notes would also allow me to write down thoughts or observations while we’re out of the house.

As for being scared off by moms with “PTSD,” not to worry. This has been very traumatic for our family and so I’m right there with you!

Thanks for all the kind words, support and suggestions.

[ShaesMom]

Thanks to all of you for your replies! Specific responses to some of your comments:

We've had some immunological blood work done, but I'm not sure whether we've done everything we need to. We've had IgG, IgE, IgM and I think IgA tested – all within normal ranges. But there's no way his immune system can be "normal" with everything we've seen. I'm very interested to get the link to the info on IgG subclasses, because this doesn't sound familiar. Our pulmonologist wanted to test his titers to Pneumovax before and after giving the vaccine, to see what the response is, but I have been too scared to give him any more vaccines since doing my homework on these when he was 3. This is something I plan to discuss with Dr. K on Tuesday.

It sounds like the steroid burst has different effects on different kids. The psychiatrist indicated that she's seen these somewhat negative reactions in other PANDAS kids, but it does seem like these are just side effects and the prednisone is actually having an anti-inflammatory effect, because we definitely continued to see more improvement after we took him off the steroids.

I love the idea about jotting notes down during the day. I am keeping a log on my computer, but it's not always easy to get to it, and I sometimes let it go for days. The written notes would also allow me to write down thoughts or observations while we're out of the house.

As for being scared off by moms with "PTSD," not to worry. This has been very traumatic for our family and so I'm right there with you!

Thanks for all the kind words, support and suggestions.

 

My daughter had normal Ig's and Igg subclass results. She failed the Pneumococcal titers vaccine test-she only made antibodies to two of the 14 serotypes. Because she was vaccinated with Prevnar four times between the ages of 2-3 her Immunologist felt she did not need to be revaccinated at this time and started her on monthly IVIG. Our Immunologist is a Clinical Professor at the UCLA School of Medicine and will be there September 23-29 for the Siegel lectures and LA Allergy Society meetings. It also looks like he will be doing some teaching. Get a hold of him somehow and see if he can help find an Immunologist who will test your son's titers without redoing the vaccine and treat. Our Immunologist does not have great bedside manner but he is suppose to be one of the best in the country and is a big wig in with Immune Deficiency Foundation. Roger H. Kobayashi, MD

 

http://allergynebraska.com/index.php?title...3d5d6b601ff9d7a

 

 

Here is a link to the subclass info from the Immune Deficiency Foundation's website. http://www.primaryimmune.org/publications/...pats/e_ch10.pdf

[mama2alex]

My daughter had normal Ig's and Igg subclass results. She failed the Pneumococcal titers vaccine test-she only made antibodies to two of the 14 serotypes. Because she was vaccinated with Prevnar four times between the ages of 2-3 her Immunologist felt she did not need to be revaccinated at this time and started her on monthly IVIG. Our Immunologist is a Clinical Professor at the UCLA School of Medicine and will be there September 23-29 for the Siegel lectures and LA Allergy Society meetings. It also looks like he will be doing some teaching. Get a hold of him somehow and see if he can help find an Immunologist who will test your son's titers without redoing the vaccine and treat. Our Immunologist does not have great bedside manner but he is suppose to be one of the best in the country and is a big wig in with Immune Deficiency Foundation. Roger H. Kobayashi, MD

 

http://allergynebraska.com/index.php?title...3d5d6b601ff9d7a

 

 

Here is a link to the subclass info from the Immune Deficiency Foundation's website. http://www.primaryimmune.org/publications/...pats/e_ch10.pdf

 

ShaesMom,

 

Thanks for this information! Just to clarify, did you have her titers tested before and after giving her the Pneumovax? When did you give have this done? After being diagnosed for PANDAS? Did she have any negative reaction to the vaccine?

 

My son is fully vaxed with Prevnar, and they've checked certain pneumococcal titers, but they felt the before and after test with Pneumovax might give more info (and I know if he doesn't show enough of a response, IVIG would probably be recommended and covered by insurance).

 

Depending on how our discussion with Dr. K goes, I may be interested in calling or seeing your immunologist. Apparently, there aren't any immunologists in the SF Bay Area who are familiar (and/or willing to work) with PANDAS (someone please correct me if I'm wrong on this).

 

As it turns out, he's based in my home town, Omaha, Nebraska, so it wouldn't be too hard for us to go out there and schedule an appointment during the visit. This would probably be easier for him that meeting in L.A., and we are long overdue for a visit.

 

Thanks!

Jennifer

[ShaesMom]

My daughter had normal Ig's and Igg subclass results. She failed the Pneumococcal titers vaccine test-she only made antibodies to two of the 14 serotypes. Because she was vaccinated with Prevnar four times between the ages of 2-3 her Immunologist felt she did not need to be revaccinated at this time and started her on monthly IVIG. Our Immunologist is a Clinical Professor at the UCLA School of Medicine and will be there September 23-29 for the Siegel lectures and LA Allergy Society meetings. It also looks like he will be doing some teaching. Get a hold of him somehow and see if he can help find an Immunologist who will test your son's titers without redoing the vaccine and treat. Our Immunologist does not have great bedside manner but he is suppose to be one of the best in the country and is a big wig in with Immune Deficiency Foundation. Roger H. Kobayashi, MD

 

http://allergynebraska.com/index.php?title...3d5d6b601ff9d7a

 

 

Here is a link to the subclass info from the Immune Deficiency Foundation's website. http://www.primaryimmune.org/publications/...pats/e_ch10.pdf

 

ShaesMom,

 

Thanks for this information! Just to clarify, did you have her titers tested before and after giving her the Pneumovax? When did you give have this done? After being diagnosed for PANDAS? Did she have any negative reaction to the vaccine?

 

My son is fully vaxed with Prevnar, and they've checked certain pneumococcal titers, but they felt the before and after test with Pneumovax might give more info (and I know if he doesn't show enough of a response, IVIG would probably be recommended and covered by insurance).

 

Depending on how our discussion with Dr. K goes, I may be interested in calling or seeing your immunologist. Apparently, there aren't any immunologists in the SF Bay Area who are familiar (and/or willing to work) with PANDAS (someone please correct me if I'm wrong on this).

 

As it turns out, he's based in my home town, Omaha, Nebraska, so it wouldn't be too hard for us to go out there and schedule an appointment during the visit. This would probably be easier for him that meeting in L.A., and we are long overdue for a visit.

 

Thanks!

Jennifer

 

Wow-we live in Lincoln. No, she did not receive the Pneumovax vaccine and Dr Koboyashi did not feel we needed to give it to her at this time since she had the four Prevnar vaccines. I honestly would not have let him give it to her. We received insurance approval without any hassles or requests to do the Pneumovax as well. She had her bloodwork done in June and started IVIG in July.

 

It is my understanding that it is common practice to test the titers before and after the Pneumovax but I wonder if this is because most of the people with PIDD's are adults who have never been vaccinated. Prevnar came out in 2000 so most of our kids have been vaccinated. I also wonder if this is why Koboyashi didn't feel she needed it again. We are extremely thankful that she is receiving IVIG monthly and feel that she would not have improved much with only the one dose. She has a history of illness prior to and including the strep infections.

[sf_mom]

Jennifer,

 

Look at Pandas Network website: IgG – subclass 1, 2, 3, 4 (Source PDF) at PDF file and you'll see more on the IgG subclasses.

 

Taken from article:

 

Recurrent ear infections, sinusitis, bronchitis and

pneumonia are the most frequently observed

illnesses in patients with IgG subclass deficiencies.

Both males and females may be affected. Some

patients will show an increased frequency of

infection beginning in their second year of life. In

other patients the onset of infections may occur

later. Often a child with IgG subclass deficiency

will first come to the physician’s attention because

of recurrent ear infections. Somewhat later in

life, recurrent or chronic sinusitis, bronchitis

and/or pneumonia may make their appearance.

In general, the infections suffered by patients

with selective IgG subclass deficiencies are not

as severe as those suffered by patients who

have combined deficiencies of IgG, IgA and IgM

(for example X-linked agammaglobulinemia or

common variable immunodeficiency). Very rarely,

IgG subclass deficient patients have suffered

recurrent episodes of meningitis or bacterial

infections of the bloodstream (e.g. sepsis).

Selective IgG1 subclass deficiency is very

rare. IgG2 subclass deficiency is the most

frequent subclass deficiency in children, while

IgG3 subclass deficiency is the most common

deficiency seen in adults. IgG4 deficiency most

often occurs in association with IgG2 deficiency.

The significance of isolated, or selective, IgG4

deficiency is unclear at this time. Since many

normal children under 10 years of age have

undetectable IgG4, IgG4 deficiency is generally

not accepted as a diagnosis in this age group.

Clinical Presentation of Subclass Deficiency

 

-Wendy

[ShaesMom]

This is the same article that I sent a link to from the Immune Deficiency Foundation's website.

[Kayanne]

Sorry your family is going through this too....

 

You probably already know this, but prednisone can effect the Cunningham Blood test results.

 

My daughter seemed to be more belligerent on the steroids for the first couple of weeks...but hearing voices is scary, I totally can understand why you stopped them!

 

She was on prednisone for six weeks, and we too saw improvement for a few weeks after stopping them.

 

I'm glad you've been in touch with other PANDAS families in your area....I would be lost without this forum and everyone's support.

 

Best of Luck

Karen

[bronxmom2]

Karen, are you still seeing positive effects from the prednisone?

[Kayanne]

Karen, are you still seeing positive effects from the prednisone?

 

Yes. Her last dose was July 18--she was about 98% improved

 

By the first week in August she began to draw, write, and work on her puzzles again. Essentially bringing her completely back to us. She started school last Monday, and I have heard nothing but positive feedback from teachers and admininstration.

 

Her only lingering issues are so minor that someone outside the family wouldn't pick up on them...minor potty issue, some minor germ issues, and some minor isssues with being rigid on rules.