New member; ? son has mild pandas

[Deja2]

Hello everyone,

 

I have an 11 year old son who I suspect has PANDAS. When he was 7 years old, he had a sudden onset of OCD symptoms along with impulsivity, separation anxiety, regression, irritability, and tics. His strep titres were elevated so he was put on Zithromax (5 days) without any apparent change in his symptoms. His initial symptoms eventually subsided, and since then his OCD/tic/ADHD symptoms have waxed and waned over the years. At times his symptoms seemed correlated with a strep infection, but other times it hasn't been clear. He has never been treated with psych meds, but he has seen a psychologist and has responded well to Cognitive Behavior Therapy. In addition, we give him Omega 3 (Omegabrite) and sometimes magnesium.

 

This past month he had a strep throat treated with Keflex. Several weeks later he had an increase in tics, impulsivity, and OCD. This recent bout has caused me to look into the PANDAS research once again. His pediatrician is open to the possibility of PANDAS, but isn't too experienced with treating it. I asked her about a referral to a rheumatologist, which she thought was a great idea. So, we are waiting to get an appointment with Robert Fuhlbrigge in Boston. I hope he agrees to see my son even though his symptoms are on the milder end of the continuum. I have read cwmom's posts and it sounds like Dr. Fuhlbrigge has been very helpful with her son.

 

This forum has been a great resource for information and it seems like there is much support among the members here. I look forward to being part of the forum.

[T_Mom]

Welcome Deja2,

I am sorry to hear you have been dealing with this once again--but welcome to the site. I, like many others, have found tremendous help from this forum --welcome.

Best,

TMom

[Lisa1971]

Welcome

 

My son Also is on the mild side of the spectrum...it took us about 6 weeks on antibiotics...Cefdinir 125 mg broken up 2x per day...but the tics are completely gone...not a wiggle or twitch...and he has been exposed to strep while on the Rx without incident...so there it hope...

 

See if you can get your ped to refer you to a neurologist also...not all recognize PANDAS, we just got lucky...

 

Hang in there...and good luck

--Lisa

[NancyD]

I, too, am new to this forum, though I am not new to PANDAS. My 13 YO daughter has very severe PANDAS. She developed an overnight onset of tantrums, extreme hyperactivity, impulsivity, anxiety, tics, OCD, sleeplessness, and mood dysregulation at the age of 3 1/2. Coincidently (or not), she had a staph infection in her hand one week prior. Since she had already been diagnosed with mild ASD at the age of 2, everyone assumed these sympoms were part of the ASD. At the age of 6 she was misdiagnosed with bipolar and ADHD. Over the years her tantrums progressed into violent rages (October-March were the worst months). Risperdal was the only medication that helped. Finally, at the age of 7 we saw a specialist in NY who suggested we check her ASO and anti-DNASE B levels, even though she had never had a strep throat infection. Her levels were up around 3000. We put her on penicillin and within 24-hrs her violent rages stopped. (As a side note, my brother had SC when he was little.)

 

Over the years we tried reducing the penicillin to a prophylactic dose but her symptoms became more severe so we had to keep her on 250 mg twice daily. Her doctor suggested a 6-month trial of IVIG but, of course, insurance would not cover and I could not afford the expensive treatments with all the other out-of-pocket expenses for her ASD treatments. As she moved into puberty the tics and OCD became quite prominent, the tics turned into full-blown tourettes, she was depressed, and she was losing friends. We tried everything from traditional medicine to alternative treatments. Nothing helped.

 

Last August we started seeing Dr. Fuhlbrigge (Deja2, you will like him -- he is wonderful to work with!) and he supported our doing monthly IVIG infusions. After fighting two insurance companies for years and getting nowhere, I discovered quite by accident that Harvard Pilgrim Health (HPH) covers IVIG for PANDAS. So since August, my daughter has been undergoing monthly infusions and HPH has been covering it 100%.

 

I am happy to report that the tics are nearly gone, her moods are regulated, she is sleeping through the night, she is happy, and her grades have improved from Cs and Ds to all As. And, for the first time in 10 years, she is no longer taking Risperdal. The only two things that have not gotten better are the anxiety and intrusive/obsessive thoughts she gets.

 

We do not know how long she will have to undergo IVIG infusions, but it could be years. Perhaps because she has had the PANDAS for so many years, it may have done some permanent damage. If I have one regret, it was not getting the IVIG infusions 7 years ago when my daughter was first diagnosed.

 

I am so pleased to find this forum and am particularly interested in the information and insight Buster is providing. I have been following Sue Swedo's work for years and have contacted her a few times. I have been told that most of the kids from the original IVIG clinical trial are doing well. However, the kids were young when they received the infusions. This may make a big difference. I look forward to participating in this forum!

 

Nancy

[EAMom]

Wow Nancy D...thank you for that really interesting and informative post. What dose of IVIG is your dd getting?

 

That must be such a relief to have your dd doing so much better! How many IVIG's did it take to start seeing improvement? Does she improve more with each IVIG now or are things holding steady? How bad is the anxiety/intrusive thoughts?

 

Is she still ASD or was that all the PANDAS?

[NancyD]

Wow Nancy D...thank you for that really interesting and informative post. What dose of IVIG is your dd getting?

 

That must be such a relief to have your dd doing so much better! How many IVIG's did it take to start seeing improvement? Does she improve more with each IVIG now or are things holding steady? How bad is the anxiety/intrusive thoughts?

 

Is she still ASD or was that all the PANDAS?

 

 

EaMom,

 

My daughter's dose is 0.8 gm/kg Gammagard every 28 days (about 2x the expected replacement dose for someone who is immune deficient). Just before the 3rd infusion we saw amazing results. She regressed a little two months ago but then came down with a cold. I gave her high doses of Transfer Factor and Quercitin and that helped. She was back to where she was within a week and now she is holding steady.

 

I forgot to mention that the last set of titers were around 75 (down from 3000). We just tested her IgG levels and are waiting to see the results. Dr. Fuhlbrigge says "you don't want to push the IgG levels too high -- makes the blood viscous causing headaches and leads to cardiac strain."

 

The anxiety/intrusive thoughts are fairly invasive. She tells me almost daily that it's driving her crazy. Technically, she has been off the autism spectrum several years. She no longer meets the diagnostic criteria, though she still has some residual issues -- she misses subtle social cues, has auditory processing deficits, and talks non-stop (I should have been more careful what I wished for when she had no language at age 3!). She also had severe colitis when she was younger but we cleared that up with monthly glutathione IVs over a two-year period. She had been gluten-casein-soy-dye-additive free for years but can now eat whatever she wants -- although I try and keep her dye- and additive-free and give her as much organic food as I can.

 

Nancy

[melanie]

Wow Nancy D...thank you for that really interesting and informative post. What dose of IVIG is your dd getting?

 

That must be such a relief to have your dd doing so much better! How many IVIG's did it take to start seeing improvement? Does she improve more with each IVIG now or are things holding steady? How bad is the anxiety/intrusive thoughts?

 

Is she still ASD or was that all the PANDAS?

 

 

EaMom,

 

My daughter's dose is 0.8 gm/kg Gammagard every 28 days (about 2x the expected replacement dose for someone who is immune deficient). Just before the 3rd infusion we saw amazing results. She regressed a little two months ago but then came down with a cold. I gave her high doses of Transfer Factor and Quercitin and that helped. She was back to where she was within a week and now she is holding steady.

 

I forgot to mention that the last set of titers were around 75 (down from 3000). We just tested her IgG levels and are waiting to see the results. Dr. Fuhlbrigge says "you don't want to push the IgG levels too high -- makes the blood viscous causing headaches and leads to cardiac strain."

 

The anxiety/intrusive thoughts are fairly invasive. She tells me almost daily that it's driving her crazy. Technically, she has been off the autism spectrum several years. She no longer meets the diagnostic criteria, though she still has some residual issues -- she misses subtle social cues, has auditory processing deficits, and talks non-stop (I should have been more careful what I wished for when she had no language at age 3!). She also had severe colitis when she was younger but we cleared that up with monthly glutathione IVs over a two-year period. She had been gluten-casein-soy-dye-additive free for years but can now eat whatever she wants -- although I try and keep her dye- and additive-free and give her as much organic food as I can.

 

Nancy

 

Hi Nancy

Where is this DR located?

[NancyD]

Wow Nancy D...thank you for that really interesting and informative post. What dose of IVIG is your dd getting?

 

That must be such a relief to have your dd doing so much better! How many IVIG's did it take to start seeing improvement? Does she improve more with each IVIG now or are things holding steady? How bad is the anxiety/intrusive thoughts?

 

Is she still ASD or was that all the PANDAS?

 

 

EaMom,

 

My daughter's dose is 0.8 gm/kg Gammagard every 28 days (about 2x the expected replacement dose for someone who is immune deficient). Just before the 3rd infusion we saw amazing results. She regressed a little two months ago but then came down with a cold. I gave her high doses of Transfer Factor and Quercitin and that helped. She was back to where she was within a week and now she is holding steady.

 

I forgot to mention that the last set of titers were around 75 (down from 3000). We just tested her IgG levels and are waiting to see the results. Dr. Fuhlbrigge says "you don't want to push the IgG levels too high -- makes the blood viscous causing headaches and leads to cardiac strain."

 

The anxiety/intrusive thoughts are fairly invasive. She tells me almost daily that it's driving her crazy. Technically, she has been off the autism spectrum several years. She no longer meets the diagnostic criteria, though she still has some residual issues -- she misses subtle social cues, has auditory processing deficits, and talks non-stop (I should have been more careful what I wished for when she had no language at age 3!). She also had severe colitis when she was younger but we cleared that up with monthly glutathione IVs over a two-year period. She had been gluten-casein-soy-dye-additive free for years but can now eat whatever she wants -- although I try and keep her dye- and additive-free and give her as much organic food as I can.

 

Nancy

 

Hi Nancy

Where is this DR located?

 

Hi Melanie,

 

Dr. Fuhlbrigge is a pediatric rheumatologist at Children's Hospital Boston. We've been seeing him since last August and he orders the IVIG for us at the Children's Hospital Infusion Center in Waltham, MA. Our primary specialist, who originally recommended IVIG a few years ago, is Ken Bock, MD. He's a terrific DAN doctor in Rhinebeck, NY who my daughter has been seeing for almost 9 years. His practice does IVIG but my insurance company will not cover it 100% as they will at Children's.

 

Nancy

[Deja2]

I am following up on my original post. Thank you for your support.

 

We saw Dr. Fuhlbrigge yesterday. (First, we met with his assistant who took a history.) Dr. Fuhlbrigge is a very nice guy who answered all my questions and did not rush us. His general conclusion was that my son does not have PANDAS, but he wants us to continue to watch for any association of his symptoms and strep infections. My son's symptoms have waxed and waned and have not always changed abruptly with strep infections. He mentioned that sometimes the stress of an illness (e.g. strep throat) can cause an increase in symptoms, but not due to an immune system response. Another option he gave us was to monitor his titres every couple months, but did not think that was warranted at this time.

 

I really appreciated the fact that he did not "close the door" on my son's case, and is willing to follow up with phone calls or future appointments.

 

NancyD, I was glad to hear that your daughter is doing so much better. My son has intrusive thoughts, too. His therapist has given him some Cognitive Behavior Therapy methods (e.g., sitting with the uncomfortable thoughts; writing scripts about them), but he seems to like to argue with the thoughts instead (not always the best option in the long run). Currently, the thoughts have subsided quite a bit and don't bother him as much as they did a few weeks ago.

[EAMom]

I think your son still could have PANDAS.

 

Any illness can cause an increase in PANDAS symptoms (due to changes in the blood brain barrier), it doesn't have to be just strep. Strep is what starts the problem but subsequent exacerbations don't have to be from strep.

 

Dr. Fuhlbrigge also needs to realize that PANDAS kids can have low strep titers (ASO, anti-dnase b ). If he is saying your son doesn't have strep based on anti-neural antibodies that is another matter....but I'm sure he's not running those unless he is in contact with Dr. Madeleine Cunningham (see worried dad's post) http://www.latitudes.org/forums/index.php?showtopic=4834 .

[NancyD]

I am following up on my original post. Thank you for your support.

 

We saw Dr. Fuhlbrigge yesterday. (First, we met with his assistant who took a history.) Dr. Fuhlbrigge is a very nice guy who answered all my questions and did not rush us. His general conclusion was that my son does not have PANDAS, but he wants us to continue to watch for any association of his symptoms and strep infections. My son's symptoms have waxed and waned and have not always changed abruptly with strep infections. He mentioned that sometimes the stress of an illness (e.g. strep throat) can cause an increase in symptoms, but not due to an immune system response. Another option he gave us was to monitor his titres every couple months, but did not think that was warranted at this time.

 

I really appreciated the fact that he did not "close the door" on my son's case, and is willing to follow up with phone calls or future appointments.

 

NancyD, I was glad to hear that your daughter is doing so much better. My son has intrusive thoughts, too. His therapist has given him some Cognitive Behavior Therapy methods (e.g., sitting with the uncomfortable thoughts; writing scripts about them), but he seems to like to argue with the thoughts instead (not always the best option in the long run). Currently, the thoughts have subsided quite a bit and don't bother him as much as they did a few weeks ago.

 

Deja2,

 

I'm glad you liked Dr. Fuhlbrigge, though I am sorry you did not get the answer you were looking for. This must be so frustrating! I do agree with EAMom's last post -- it could still be PANDAS. Have you had your son's IGG levels checked? Are his levels low?

 

My daughter has not complained in the past two weeks of any intrusive thoughts -- I am keeping my fingers crossed. She has been off the Risperdal for a few weeks now and, of late, she seems a bit more hyper at times, somewhat more chatty (if that is even possible!), and has more difficulty with self-regulation. But, this could be hormonal (she just got her period for the first time last week) and it could be due to the end of the school year, or a combination of the two. We see Dr. Bock in early July and I will talk with him about the possibility of switching from Pen VK to Augmentum.

 

Nancy

[EAMom]

Hi Nancy,

that is interesting about your dd getting her period. I have been wondering what effect hitting puberty has on some of these kids. I wonder if the boy from "Saving Sammy" in part got better b/c he hit puberty and sort of "outgrew" the PANDAS. Also, what is the difference in boys vs. girls.

[NancyD]

Hi Nancy,

that is interesting about your dd getting her period. I have been wondering what effect hitting puberty has on some of these kids. I wonder if the boy from "Saving Sammy" in part got better b/c he hit puberty and sort of "outgrew" the PANDAS. Also, what is the difference in boys vs. girls.

 

Hi EAMom,

 

Very hard to say. In my daughter's case, ages 7-12 were the worst years with regards to violent rages. Tics and OCD were fairly manageable. But at age 12 the tics and OCD got progressively worse. Any improvement in the past 10 months was due 100% to IVIG infusions. I have every reason to believe that she would have continued to get worse if we had not treated her with IVIG. It makes me sick to think that we wasted so many years treating her for something else.

 

Nancy

[kim]

Thought these might be of interest

 

 

http://www.medicalnewstoday.com/articles/154148.php

 

Could Hormones Explain Gender Differences In Neurological Disease?

 

http://www.jad-journal.com/article/PIIS016...bstract?rss=yes

 

Anti-brain antibodies in adult patients with obsessive–compulsive disorder