Immunologist Appt Update

[Suzan]

We saw our immunologist today. It was a rushed visit, she was over booked, but we are on the way to getting dd some help I think. She is recommending allergy shots to help with dd's multiple allergies. She did not indicate at this point that she would need to re-vaccinate with prevnar. She said she knows dd has PANDAS and an immuno deficency and she needs IVIG. It's just a matter now of finding out of she can prove it for the insurance companies. DD had to give a lot of blood today but they were only able to get some of it. Her veins dry up before we get all the vials filled.

 

She wants to review everything I gave her (family history, daily diary, symptoms list, etc.) and see the blood test results and then we talk again.

 

The doc also recommends a psych evaluation so maybe some OCD meds might help us cope until she can get IVIG approved. I have not thought of this option before so I will need any thoughts from you guys on these meds and whether they may help in our situation.

 

I have a horrible cold and my computer is messed up so it's taking me a long time to type this.... I'll have to check in later.

 

Susan

[ShaesMom]

We saw our immunologist today. It was a rushed visit, she was over booked, but we are on the way to getting dd some help I think. She is recommending allergy shots to help with dd's multiple allergies. She did not indicate at this point that she would need to re-vaccinate with prevnar. She said she knows dd has PANDAS and an immuno deficency and she needs IVIG. It's just a matter now of finding out of she can prove it for the insurance companies. DD had to give a lot of blood today but they were only able to get some of it. Her veins dry up before we get all the vials filled.

 

She wants to review everything I gave her (family history, daily diary, symptoms list, etc.) and see the blood test results and then we talk again.

 

The doc also recommends a psych evaluation so maybe some OCD meds might help us cope until she can get IVIG approved. I have not thought of this option before so I will need any thoughts from you guys on these meds and whether they may help in our situation.

 

I have a horrible cold and my computer is messed up so it's taking me a long time to type this.... I'll have to check in later.

 

Susan

 

Susan this is great news to hear that you are headed in the right direction! I would be very careful with the OCD meds-from what I've read and heard they may actually do more harm than good with her Pandas. I'm sure others who are more experienced in this area will chime in.

[KeithandElizabeth]

Susan:

 

What wonderful news! We have had 2 IVIG's and our son's OCD issues are practically gone!!!!! His first IVIG was 6 weeks ago. He was so debilitated from OCD and anxiety that I had to home school him. Today he asked to go to school again. I will try to give a full update later. It is really mind blowing when you think about it! I am excited for you.

 

Elizabeth

[ShaesMom]

Susan:

 

What wonderful news! We have had 2 IVIG's and our son's OCD issues are practically gone!!!!! His first IVIG was 6 weeks ago. He was so debilitated from OCD and anxiety that I had to home school him. Today he asked to go to school again. I will try to give a full update later. It is really mind blowing when you think about it! I am excited for you.

 

Elizabeth

 

Elizabeth-That is fantastic news!!!!! Just wait until you finish the third IVIG and he improves even more. Congrats!!

[thereishope]

I have also heard that meds may do more harm than good. What OCD problems is she having? There are therapies that can help her that do not include SSRI's. Maybe see a psychologist instead of a psychiatrist. A lot of times psychiatrists will want you to try therapy only first anyway. You really need to understand OCD to help deal and overcome it. I read the book "Freeing your Child from OCD" and it helped me develop strategies for my son. He doesn't have any OCD now and I feel I have more knowledge of what to do if PANDAS and OCD should resurface again.

[pixiesmommy]

I can tell you more specifically, but in our situation the Zoloft, Abilify, and Prozac made things worse in one way or another. Abilify being the worst because we had EPS (large muscle spasms.) They all increased tics. The Zoloft made her hyper and edgy and we stopped, then the Abilify made her sleepy, so the Prozac was added to wake her up and then it all went to pot and we did IVIG and saw results.

 

[melanie]

Susan:

 

What wonderful news! We have had 2 IVIG's and our son's OCD issues are practically gone!!!!! His first IVIG was 6 weeks ago. He was so debilitated from OCD and anxiety that I had to home school him. Today he asked to go to school again. I will try to give a full update later. It is really mind blowing when you think about it! I am excited for you.

 

Elizabeth

 

 

when did u do the 2nd iV was there another infection?

[T_Mom]

Have you been on full strength antibiotics? Steroid burst? These are the tools that WORKED for our d's severe and crippling OCD...that was Pandas related.

 

We also tried, and remain on low level prozac, but it seems inconsequential to us--just have been reticent to change a thing.

 

Early on we had very bad reactions to psych drugs for OCD (from Hopkins--well meaning intern over prescribed and our d was up until 3 am crying and holding painful OCD positions--a complete nightmare disaster.)

[KeithandElizabeth]

Hello:

 

We did a smaller dose yesterday. It was so smooth...... it took about 2 1/2 hours and Quinn did not have any side effects. I know there may still be a saw tooth healing pattern, but within 24 hours of this small dose we have seen a huge improvement. He was probably 60% improved within 6 weeks of his first dose and then he seems like he is 90% improved after IVIG yesterday. I do need to be careful because I get overly optimistic at times. The one thing that we are not seeing improvement on yet is the constant, like every 5 minutes, need to urinate.

 

The doctor believes we may need to do 4 or 5 more small dose IVIG's. He wants to make sure that Quinn's IGG levels remain in the 1000's without IVIG.

 

How are you doing???

 

Elizabeth

[nevergiveup]

Hooray, I was thinking about you this week. Glad it went well. Any headaches or fever or fatigue with the lower dose? My daughter got sick this week may be swine flu. Tamiflu worked well. I hope next week she gets her first PIDD IVIG.

 

 

Hello:

 

We did a smaller dose yesterday. It was so smooth...... it took about 2 1/2 hours and Quinn did not have any side effects. I know there may still be a saw tooth healing pattern, but within 24 hours of this small dose we have seen a huge improvement. He was probably 60% improved within 6 weeks of his first dose and then he seems like he is 90% improved after IVIG yesterday. I do need to be careful because I get overly optimistic at times. The one thing that we are not seeing improvement on yet is the constant, like every 5 minutes, need to urinate.

 

The doctor believes we may need to do 4 or 5 more small dose IVIG's. He wants to make sure that Quinn's IGG levels remain in the 1000's without IVIG.

 

How are you doing???

 

Elizabeth

[sf_mom]

WOW, way to go..... I think you'll see GREAT results as you move forward.

 

 

Hello:

 

We did a smaller dose yesterday. It was so smooth...... it took about 2 1/2 hours and Quinn did not have any side effects. I know there may still be a saw tooth healing pattern, but within 24 hours of this small dose we have seen a huge improvement. He was probably 60% improved within 6 weeks of his first dose and then he seems like he is 90% improved after IVIG yesterday. I do need to be careful because I get overly optimistic at times. The one thing that we are not seeing improvement on yet is the constant, like every 5 minutes, need to urinate.

 

The doctor believes we may need to do 4 or 5 more small dose IVIG's. He wants to make sure that Quinn's IGG levels remain in the 1000's without IVIG.

 

How are you doing???

 

Elizabeth

[Kayanne]

If your doctor was referring to SSRI's, keep in mind that they take 6-8 weeks before they fully kick in. How long does your doctor expect to be reviewing your case, and then trying to get your child treated?

 

I'm not trying to sound snarky...it just doesn't seem practical to put a child on SSRI's while they are on the cusp of treatment for PANDAS.

 

It is impossible to say how much of her behavior is PANDAS and how much is actual OCD until you are sure she is no longer in an epidsode, and has returned to as close to her baseline as possible.

 

We took our daughter to a pediatric psychatrist after we were told to by an Infectious Disease Specialist...fortunatly, the psych. firmly believed in PANDAS. She felt that trying to evaluate my dd while in PANDAS episode was useless. She told us to call her only if we felt that there was some behaviors that might need treatment AFTER she received treatment for the PANDAS.

 

Considering our family history, I am eternally grateful that her ped. was at least willing to mention to us about the connection between strep and OCD, because I know that I would have agreed to put her on the meds if it was suggested...

 

I am so happy that we didn't go down the road of SSRI's because her full recovery cannot be attributed to anything other than prednisone, time to heal or antibiotics

 

Ours was a clear cut case, without any other treatments to "muddy the waters" of a PANDAS diagnosis

 

Do I think my daughter has some OCD tendancies?...yes...so does my husband and almost all of his family...but the need for medication has been minimal when you consider the large number (nine siblings--plus a lot of extended), so I am grateful that it is not a bridge that we needed to cross--and hopefully never

 

I want to add one more thing about SSRI's. While adjusting to taking them, increasing or decreasing the dosages, there are many side effects, and getting the dose right is a real art. I saw over 5 years how my DH dealt with taking them, and I was extremely reluctant to put my child's developing brain on them.

 

Good luck, I'm really glad that you found a doctor to look at your case...I'm praying that all of our kids get the necessary treatments.

[EAMom]

Susan, I totally agree with the others. Stay away from the pysch. meds. What abs is your dd on? how much does she weigh? is that doing anything?

 

If anything, I would consider a steroid burst. Have you done that?

 

Or even add on advil (if not on steroids).

 

Like the others have said, pysch. meds can really confuse things. You can have bad side effects from the psych. meds (and you might not know if it's the PANDAS or the pych. meds causing the problem!). And, psych. meds often do make things worse for PANDAS kids. And, once started, some of them can be hard to get off of (SSRI's, risperdal).

 

BTW...Like T.Mom...we are also on a low dose of prozac (longer story). We've been on it for over a year, and are reluctant to change any variables. We don't know if it doing much at this point, but don't want to confuse the issue with changing things.

[Suzan]

Thanks my friends! You know I hold your opinions and experiences in the highest regard and this is what I wanted, your honest thoughts on these meds. I really appreciate it! If the meds she is referring to are the SSRI's, then I agree, this is not a good time to try this. We have not tried a steriod burst yet so I will bring this up with our doc the next time we talk. Also, maybe changing her antibiotics or going back to full dose, although I never felt she had as good a response as I would have liked to see on her antiboitics.

 

She weights 69 lbs and I have a 30 day prescription to 250 mg of zithromax. I am giving it to her every other day at this point. I also give her 200 mg of ibuprofen 2x a day.

 

Susan

[EAMom]

She weights 69 lbs and I have a 30 day prescription to 250 mg of zithromax. I am giving it to her every other day at this point. I also give her 200 mg of ibuprofen 2x a day.

 

Susan

 

How long has she been on the Azith? What abs was she on b-4? You should definitely go higher on the Azith. Give at least 250mg/day, although at her weight she could even take 375mg/day (1.5 tablets).