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adkmom

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  1. What's the dosages for IVIG? high dose or medium or low dosage? We are planning to do IVIG too. But two doctors have different suggestion: high dose or medume dose.Whatis your son's experience? Thanks. Any suggestions will be highly appreciated. Yanni

     

     

    We didn't get that far into the discussion about dosage. But the doc was calculating the cost of IVIG based on my son's weight and amount that would be needed.

    Maybe others here have dealt with dosage levels.

  2. Hi Darlene-

    My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

     

    In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

     

    Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

     

    This is my first post here (although I have been reading for a long time) so I will give you more info/background:

    This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

     

    He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

  3. Hi Darlene-

    My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

     

    In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

     

    Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

     

    This is my first post here (although I have been reading for a long time) so I will give you more info/background:

    This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

     

    He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

  4. Hi Darlene-

    My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

     

    In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

     

    Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

     

    This is my first post here (although I have been reading for a long time) so I will give you more info/background:

    This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

     

    He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

  5. Hi Laure,

     

    Thanks. still at it! not as severe symptoms but just can't get the 100% mark. Lyme doc agrees but pandas doc suggesting. We're doing 1 more shot at Azith.

    and Augmentin to see if it helps but then we need to start discussing IVIG seriously. Lyme seems to be cleared out. But autoimmune stuff still remains.

    where are you guys at? how's sophie?

     

    darlene

  6. Hi!

    My son had ivig one year ago when he just turned 8. He wasnt as young as your son, so not sure about that. Maybe some others will post. He is doing fantastic now. Very few pandas symptoms and only after illness. He did experience headaches and nausea for days following treatment. Nothing severe.

    Good luck!

  7. Hi everyone,

     

    Haven't been on the forum in awhile. But still (1 1/2 years later!) fighting this for our DS5. Dx PANDAS and Lyme. The Lyme seems to be

    clearing but the PANDAS symptoms remain. Many are gone...but OCD, some tics, ADHD, anxiety/fear are still there.

     

    IVIG has been recommended...Based not on the severity of the symptoms but on the length of treatment. Our dr. said that his concern is

    that the symtoms can (not always) get worse. If it's not dealt with now, a few years from now we could be looking at OCD that is more severe, along

    with other symptoms. And that's even more challenging to fix.

     

    Has anyone done IVIG with a young child? what was your success? lots of side effects?

     

    Thanks once again..to everyone for your guidance!

     

    darlene

  8. Hi Everyone,

     

    Our ds5 recently started a new tic...pulling his lower eyelids down quickly and rolling his eyeballs upward (if you can visualize). he doesn't do it constantly but when he does it, it's very creepy looking. If anyone else has experienced this, would love to know. It's scary looking.

     

    Also, started swiping his body from feet to head with both his hands.

     

    Thanks everyone, as always!

     

    Darlene

  9. I know this all too well. I have a ds5 dx with pandas and lyme (suspected Bartonella but unsure). However, it did not start with the rage/frustration (in our case). There was a sudden onset of tics and what we now realize was mild OCD behaviors. My son had strep but none of the symptoms of it. His rage/anger has subsided greatly after antibiotic treatment (he is also on ADHD meds which have helped)

     

     

     

     

    I have a 9 year old relative who is having a lot of trouble with rage/inability to cope with frustration/anger. He does not have pains or other symptoms that his Mom is aware of but has had strep in the past numerous times. Where should they start looking for the cause of this issue and have any of you dealt with rage in a child and seen it go away with lyme/bartonella/babesia/strep treatment?

  10. What great news! I remember us chatting from the very beginning when both our kids were dx in November. It's been such a year and I can so relate to all the struggles you mentioned (with yelling and fighting in the family!) So exhausting! But you've been such a determined mom to get the right help for Sophie and it's paid off! Colin is still ticing and recently a psychiatrist said "well if it doesn't bother him, it's fine, right?" I told that to Dr. B and he chuckled and said, "yeah, but kids don't just tic, we need to stop it." So, your "Keep pushing" statement hit home with me. (During an evening when I thought maybe I'm making too much of this and should just let whatever it is be.) In relation to a lot of other children, Colin is doing pretty well, but he's not 100% and that's what we're all striving for, right? To get our kids COMPLETELY better. So, thanks for your encouraging words, you give us all hope!

     

    Darlene

     

     

     

     

    Hi All,

    I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness.

    Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing.

    Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet.

    Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon!

    Laura

  11. Our child psychiatrist said that recent studies indicate that tics are NOT made worse by stimulants. She said the reports are mixed.

    My son has tics (from PANDAS) and takes Metadate (30mg daily) and it has not increased the tics. Every child may be different, not sure.

     

    good luck.

     

    adkmom

    from lyme board

  12. Hi everyone,

     

    Haven't been on the forum in awhile. But this is our 1 year mark since DS5 was diagnosed with Pandas (Lyme dx in Feb.) In desperation to control

    ADHD symptoms (that weren't improving on meds), I took him off all 3 antibiotics for 10 days and his symptoms disappeared. Less agitation, irritability, happier,

    but his tics remained. Anyone else see improvement in symptoms when OFF antibiotics? It doesn't make any sense.

     

    For those struggling with ADHD symptoms....I've found his med helps minimize the symptoms and control them BUT during certain periods of the month, the med is less effective. The docs says, the med will help but if Lyme or PANDAS is active, those symptoms will still emerge.

     

    Even after a year, this is so confusing!

     

    Darlene

  13. Hey Laura,

     

    So glad to hear your news! I'm confused though...Did Igenex tests show negatives for those infections...and the ART doc run a different type of test? When do most kids move onto to try ART? I'm completely clueless in this area! I've been told that we're only on Lyme treatment full force (treating Bartonella as well as Lyme) for 4 months...not long enough to elimiante all the symptoms...so we're waiting. We have started ADHD meds with great reluctance and it's improved those symptoms but now, it's confusing and I need to check with docs about how we can still monitor progress with Lyme treatment if ADHD meds are eliminating (or masking) his key symptoms!

     

    Colin has never really had OCD issues, is that what ART is more for?

     

    Darlene

  14. Just wondering if anyone has done food allergy/sensitivity testing for their PANDAS child? Tics come and go. No sign of infections or sinus problems...but wondering if I should investigate food testing? I know some of the kids react to Food dyes but would like to know for sure if that could be triggering symptoms. <_<

     

    Thanks everyone.

     

    Darlene

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