New, Worried and Overwhelmed!

[sf_mom]

Our 5 1/2 year old son took ill on June 24th and its been an unbelievable roller coaster ever since..... I'm exhausted, frustrated and worried!

 

He started 250 m.g. Azithromycin August 8th and completed a 5 day steroid burst August 13th per Dr. K. He did well on the steroids but I am noticing minor tics increase again. We are planning on doing IVIG September 17th with Dr. K. I've had such conflicting information from different Dr's and just got of the phone with an Immunologist who wanted to see my son get sick again, test positive for strep or no antibiotics and have a more severe presentation of TICS/OCD before she would concur PANDAS diagnoses!!!!! She has sent this recommendation to my son's pediatrician and meanwhile this is the first PANDAS child she has ever seen in her office. His titers were 244 at peak of illness, 205 as he improved and is at 206 with negative Anti-DNase B Titers as of last week.

 

Right now, I could use any positive stories regarding IVIG!

[EAMom]

welcome sfmom! are you in San Francisco?

 

Could you tell us a bit more about your son's history/symptoms? Were they mainly tics or ocd?

[sf_mom]

Thanks for responding. My son had both, he starting out with rapid eye blinking, clearing of throat, an inability to sleep immediately after high fever sore throat for 4 days. Within a week, he was shrugging his shoulders, head tilting to left, flicking back of ears, clearing of throat, grunting, eye blinking, sneaking off to wash hands, plucking hair, had to wash hands prior to touching baby blanket and couldn't touch anything in between, very concerned about other germs, separation issues at school/camp no previous problem, inability to fall asleep, lengthy nighttime routine, needed constant reassurance, night waking, complaining of joint pain every morning, writing name in a mirrored fashion...... May have missed a few symptoms.

 

My fear is..... I have heard that IVIG hasn't been as helpful with the presentation of both TICS/OCD. Currently, he is about 90% better but I'm starting to see symptoms increase slightly as the steroid burst wears off.

 

Any perspective would be helpful and thanks for the welcome. Wendy

[sf_mom]

Oops, forgot to add, we were living in SF and moved to PA area just a year ago.

 

-Wendy

[bronxmom2]

SF Mom,

I just wanted to say that you seem really on top of it-- seems like you really acted quickly to help your son, and that's great. You should be proud of that.

[T_Mom]

Welcome SFMom--

I entirely agree with BronxMom--you are incredibly on top of this if it only just started at the end of June. Way to go.

I hope you do see a marked improvement with the steroids--and subsequent IVIG. Please keep us updated as to how it goes--

All the best,

TMom

[P_Mom]

Wendy,

 

Where in PA are you? I live in Pittsburgh.

 

Kelly

[sf_mom]

Thanks everyone for the warm welcome and for your words of support.

 

Looking back, we don't think this was the first episode for our son........ at 4 1/2 he had a similar clearing of the throat/tic for several months and after three visits to the Dr. to rid him of it (only five day course of antibiotics perscribed) we were told it was just a 'habit'. I've spent hours upon hours researching PANDAS on-line and ran across a blog posting on some website of Diana P's and e-mailed her. It turns out she lives only about 2 miles from our house and our children are in the same school district. She was the angel, I prayed for when my son got sick and huge advocate behind my sons immediate assistance. She even gave me her sons Dr. appointment!!! I've been leaning on her a lot and don't want to be a 'pain in the rear'.

 

So I'm praying, worrying, stressing, investigating, posting......... ANYTHING to help ease the worry, find a solution and build confidence that this will work. Our sons, blood work was mailed to Madeleine Cunningham on the 24th and we are awaiting those results. He failed 11 of the 14 Serotype for the Pneumococcal Antibody Titer and still hope to test his IgG subclasses.

 

Two other pluses: My father-in-law is a Urologist so 'he gets PANDAS' and our younger son had Kawasaki's at 5 1/2 months old. We saw an amazing turn around he took in less the 24 hours after IVIG. So, we know how beneficial it can be.

 

Again, I'd love to hear success stories. Dr. K seemed hopeful for IVIG even with the TIC presentation but it would be nice to know if others have had success also.

 

-Wendy

[sf_mom]

Kelly,

 

I should have clarified Palo Alto, CA near Stanford University..... suburb of San Francisco.

 

-Wendy

[EAMom]

Hi Wendy,

we're in Sunnyvale. Which immunologist did you talk to? At LPCH? What a wimp-out for her to want to see your child get sick again! Unfortunately, (with the exception of our psychiatrist) we haven't come accross a "PANDAS knowledgeable" doctor in our area. Our appointments are more a matter of going to a somewhat open-minded doc armed with evidence and information and then it is up to us to educate them so we can "get" what we want.

 

I do get the impression that tics are the most resistant to treatment (IVIG). On the other hand, the fact that your son responded so well to the burst (and azith) is encouraging. I also think it helps that your son is younger and you are treating agressively early on in the disease. I honestly don't know if PEX is a better option. I would say that IVIG (we had it 3 weeks ago) seemed pretty easy and straightforward vs. the desciption of PEX that have been posted.

[sf_mom]

EAMom, Its so nice to have people close by that are going through the same thing! The immunologist is in SF out of CPMC - Dr. Kwong-Pounce. Because we moved down the Peninsula less than a year ago, I have not switched Dr.'s yet. Our pediatrician seems open to listening and researching. He was a little hesitant when I spoke about ongoing antibiotics. I figure if I can't get him on board, I'll find another Dr. and have one referral of somebody who has dealt with PANDAS. Who is your psychiatrist, M.T? She is ours and willing to talk to our Pediatrician. Have you found a supportive immunologist?

 

How is your Daughter/Son doing after IVIG? Have you seen improvement 3 weeks post treatment?

[ShaesMom]

Hi Wendy,

 

My dd7 has had the two day IVIG, three weeks later she had another round, and she is scheduled for round three this Friday. She had severe side effects following the two day treatment but otherwise she did really well. IMO-the second round seemed to really put her over the hump. I would say she is 95% improved.

 

My dd failed 12 of the 14 Pneumococcal Titers and now receives monthly IVIG. IMO-I am so greatful that she is receiving it monthly. She has a long history of illness so I am convinced that one IVIG tx would have just resulted in full blown Pandas the next time she picked up an infection. She is also one of those who gets symptoms from virus' and infections other than strep. We have also seen her symptoms flair when those around her sick.

 

If your child has an underlying immune issue, I'm not sure PEX would be the answer. I have never seen any information on someone receiving the PEX who has immune issues but I could be wrong.

 

You have a great ally in Diana!

 

Sam

[EAMom]

Hi SFMom...I sent you a private msg. about docs.

 

Re IVIG, our dd had a slightly higher dose than Dr. K. normally uses, 2 gm/kg (vs. 1.5 gm/kg). I had e-mailed Dr. K. and asked about dosing. He agreed that the higher dose was indicated due to dd's age (9) and also her hx of anorexia (it seems these kids are more likely to need a 2nd IVIG). 2mg/kg is the dose Swedo used in her study. She did have some flu-like symptoms (headache, fever) 1-2 days post IVIG, but overall, she handled it great.

 

Our dd is doing well 3 weeks post. 1 week post we had tantrums, irritability (to the point I thought she was worse). That is better now. We do appear to be having some "turning back the pages" (relieving old symptoms, some new ones). The other day dd said "her taste buds weren't working and things that should taste good don't" (Diana's son had this symptom when his PANDAS was bad). She also has a slight oppositional attitude towards her new teacher. I don't know if this is PANDAS, her new teacher (he has a lot of rules), or some kind of readjustment of her brain chemistry making her current dose of Prozac (10mg daily) too much for her and now this is a Prozac side effect. Our dd has also had some learning issues (handwriting, math) despite a an IQ in the gifted range, so this may be the source of school stress (we have an IEP). We don't also don't even know if these learning issues are PANDAS related (her handwriting certainly goes from bad to worse during an exacerbation) but we haven't seen an obvious big improvement in this area at this point. We haven't seen any tics since IVIG. However, for us tics were a mild symptom which showed up late in the game. I still see flashes of anxiety, irritability with her, but they pass. Socially she is doing great (anxiety better). I would say, overall things are good. I did send Dr. K. and e-mail 1 week post (b/c of the irritability)...he said to give her 1-2 mo. for healing (although it seems that others can take even longer to heal). So, overall, things are good...but I think it is too early to give a final answer as to how sucessful IVIG was.

[sf_mom]

EAMom

 

Thanks for all the information.... I've responded to your PM. I'm still trying to figure out the forum so if you don't see my response... let me know. When my son was at his worse, he was actually writing his name backwards in a mirrored fashion. So, if you held his writing sample up in the mirror it read correctly. I had numerous examples but threw many out not understanding the potential importance at the time. I did find two examples though and have forwarded them to his Dr.'s. Its scary what this does to the brain. My son barely knows how to write at this point and never wrote his name in that fashion prior to being sick.

 

Again, my younger son had Kawasaki's at 5 1/2 months old and he made such an amazing turn around with IVIG. BUT, it took his heart ventricles almost a year to repair. I'll be interested to see how she is doing 6 months, year.

[ShaesMom]

Hi SFMom...I sent you a private msg. about docs.

 

Re IVIG, our dd had a slightly higher dose than Dr. K. normally uses, 2 gm/kg (vs. 1.5 gm/kg). I had e-mailed Dr. K. and asked about dosing. He agreed that the higher dose was indicated due to dd's age (9) and also her hx of anorexia (it seems these kids are more likely to need a 2nd IVIG). 2mg/kg is the dose Swedo used in her study. She did have some flu-like symptoms (headache, fever) 1-2 days post IVIG, but overall, she handled it great.

 

 

My dd also had a higher dose-2gm/kg.