Three weeks after 2nd IVIG...

[Dedee]

My daughter had her first IVIG the end of June and we saw immediate improvement. After about a month we started to see gradual regression but didn't worry because she was scheduled to have another in August. Her second IVIG was second week of August and she got immediately worse. After two weeks she started to improve some, but I would say only about 50%. That is pretty much where she is stuck at now. We are a little past the three week mark and I am starting to get worried. She has some days that are good and others that still put me in tears. She is still on biaxin for her mycoplasma and they said leave her on that for at least three months after the IVIG.

 

I keep questioning if I should be doing something else for her. Maybe seeking another opinion? We have seen Dr. M in Florida who recommended the IVIG and antibiotics. We also have seen a physician here who treats PANDAS and Lyme patients (although not one of "THE" PANDAS doctors). She has a pediatric neurologist who is good and believes in PANDAS but hasn't been much help. We did the CBT program during her "good" time after the first IVIG, which was helpful, but since the regression she can't seem to put it into practice. Her LLMD did not think it was necessary to test her for Lyme prior to the IVIGs because she was showing some improvement on the biaxin. Am I being to impatient and not giving the IVIG enough time to work? Should I consider starting Lamictal? One of the doctor's suggested that prior to the IVIG but I wanted to hold off to see what the IVIG would do. I am starting to feel that desperate feeling again. You know, when things start falling apart with your child and you don't know what to do........Ugggg.......

 

Thoughts....ideas.......suggestions???????

 

Dedee

Edited September 5, 2011 by Dedee

[Burnell]

Wow we are following you. We just got back for USF. Our DD12 had a bad episode tonight where she went out in the rain for a half hour in her socks to perform her touching compulsion. She touches the ground nearly every 2 seconds when its bad. She was so wet and cold and could not stop doing it.

We had the Biaxin suggested by Dr T a few weeks ago but have not tried it yet.

 

DR M made other suggestions to us, one of which is possibly a 2nd ivig, here are her others...

1. Vitamins: Omega 3, No 6 or 9, at 1,000 tp 3,000 mg.

Vitamin D 2000-3000 IU and N-acetyl-cysteine 300-600 mg. day

2. Immune complex lab work.

3. Augmentin 875 mg

4. Clonidine 0.1 mg at nigth to help with falling asleep. Can go up yo 0.3 mg but u haev to take their blood pressure daily as its a low blood pressure med for adults.

5. May add Abilify

6. May increase her Celexa dose from 20 mg to 30.

7. Continue at home with CBT.

 

We have an appt this week with new CBT psycologist. Hoping to get in soon w/ new psychatrist to start abilify. Also wating for blood results.

Does you DD have low blood platlets? Ours does 85. Should be over 150.

[Dedee]

We do the fish oil and Vit D also. Just this week we have added Rifampin to the Biaxin. This was suggested by a doctor we see locally who is seeing her for the myco p. I think I am seeing some improvement the last day or two. It is hard to get her to take very much medication so I am limited to what I can get in her. I am hoping this improvement I am seeing is an indicator that the IVIG is starting to work. Of course one or two good days doesn't always last but I am trying to be optimistic. I am so sorry your daughter is suffering so. That sounds terrible about her compulsions. You should think about another IVIG after you get her lab issues figured out. I am interested to see what you find out about that. Please keep me updated. Best of luck with your daughter.

 

Dedee

[Burnell]

Her labs are normal other than the platlets. We saw a psycologist today to begin CBT. We will be seeing a new psychatrist soon, looks like Celexa that she has been on for a year does not help w/ anxiety. Hope to get different SSRI such as Lexipro that does bring down anxiety.

Also going to have her hormone levels checked out, did not know that out of wack hormones can cause mental issues too.

[kimballot]

Dee Dee -

 

I often feel like I am walking on a tightrope with my son. I can never relax - even when he is doing well- and as soon as he starts to slip I am picturing the fall. I am so sorry that you are going through this.

 

I am curious about the LLMD suggestions. We did igenex testing with my son before IVIG and he had a couple of indeterminate bands, but the only thing that was positive was band 41, which may have been due to mycoplasma. My son did very badly after the first IVIG and we did MANY things to pull him out of the exacerbation - one of which was going to an LLMD, who thought we should do an antibiotic challenge and then retest for lyme. So, she put him on 3 weeks of strong doxycyline and flagyl - and everyone warned me to watch for herxing and that the symptoms would get worse before better. On day 3 of the challenge we saw rages (not as bad as right after IVIG), and anger - but it then went away. Somewhere around day 5 my son said "mom, I really like those new blue pills - they give me so much energy"... We had also started CoQ 10 around the same time as the doxy, so I initially attributed it to that.

 

When the 3 weeks ended we put him back on zithromax and saw immediate regression. We then put him on 6 weeks of minocycline and tindamax (which are simiar to doxy and flagyl but better for sun sensitivity), and he continued to show slow progress. When the 6 weeks ended we decided to try augmentin- and again saw regression in behavior and mood, so we changed him back.

 

Interestingly, his Igenex test after the antibiotic challenge had FEWER indeterminates than before and again had only band 41 positive. However,we did a CD 57 on him (that is usually used for adults, but he is adult-sized), and it was suppressed. Given this and his response to antibiotics, the immunlogist, lyme doctor, and pediatrician all agree that there must be some underlying infection (lyme? coinfection? something yet to be discovered?) that is brewing in his body and we are now an a new protocol of minocycline (this will change to doxycycline as soon as I get the rx filled!), and azith - with tindamax rotating in.

 

You know a bit about my son's story so I will tell you that he has gone to school all 4 days this week (first week of school) - on time and with a smile on his face- and without me even waking him up in the morning. I hold my breath every day, but so far so good. Still lengthy rituals in the morning - but we are doing CBT for that.

 

So— I guess my advice is to revisit the antibiotics and see if the doctor is willing to try some different combinations. I know taking medication is an issue for your dd so this may be difficult.

 

Please let us know how she does... I will keep you guys in my prayers -

Edited September 10, 2011 by kimballot

[Dedee]

I am so glad to hear that your son is doing better. That is wonderful. I do think we may need to try more aggressive antibiotic therapy for my daughter. She seems to be improving now but still not at a rate that I would expect. I think the IVIG is working but we are no where close to where she needs to be. Could be I am expecting to much to soon. I am going to make another appointment with the LLMD but probably be three months before I can get her back in. Still considering the Lamictal but I was worried about "masking" symptoms. We need to get back into a weekly CBT program but I am having such a hard time since going back to work. Everything is crazy hectic and my husband is acting like an idiot lately. He tends to do that when things get really stressful. Why is it that the Mother has to be the one to stay strong and handle everything.....uggg......

 

Dedee