mom md
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Posts posted by mom md
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We completed day two today and he did great. He did 2gm/kg total (1gm/kg x 2 days) of Gammunex. She ordered gammuguard but the pharmacy substituted gammunex. They did it without telling the doctor so she was pissed. No harm though, he tolerated it fine. He was well hydrated and I premedicated him with tylenol, benadryl, zantac, and 20mg of prednisone. He has not had any side effects either time. Not even a headache. He came home today and played outside afterwards. His mood is unbelievable.
Last time we saw some interesting neurological things come out (movements, irritability, OCD issues) which were mild but apparent for about the first week off and on. Then from day 7-10 he was basically back to normal. His eyes were very dilated for two weeks (his sympathetic nervous system was definitely working. At 5 weeks post-tx we saw some poor impulse control issues and very rude and out of character remarks to his teachers and then 5-6 days later they were gone. He is 8 weeks post the first treatment with IVIG and we did one more yesterday and today. We follow up with two local neurologists next month to come up with a long term game plan and we see the immunologist next week. In May we see peds infectious disease here to discuss antibiotics. I will keep everyone posted on what they say. They are by no means experts but very interested in this disease.
I know the turning back the pages is hard to stomach but I think of it like chemo and hair loss...it is a tangible sign the treatment is working!
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We really are doing great. I almost hate to even say it out loud because I am scared I will jinx it! Please keep me posted!
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My son's doctor compared it to a parent who had treated their child for leukemia..with every "bruise" their hearts stop beating and they relive the fear of the disease...only time will heal this. My son who is 99% now and started hopping on only the yellow squares in the store the other day. My heart skipped a beat and then I tried to reaasure myself he was only eight and this is normal. I think time will heal but it will take a while. As I have seen him return to baseline though now with PEX, steroids, and IVIG I still do not feel I really know the enemy but I know what works to help cure.
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We are on 250mg azith each day. He weighs 75lbs. We meet with the infectious disease doctor in May. I spoke to her recently and she said she felt azith was very benign to take every day (she did have concerns regarding augmentin...she suggested I leave that one in my back pocket if he gets strep) and said a lot of cystic fibrosis kids take it regularly for the immune modulatory effect. At some point I may want to switch to the rheumatic protocol which may be a better way to protect against strep.
mom md,Thanks for the reply. I just want to clarify - do you plan on keeping him on full strength antibiotics until he is an adult or are you using a prophylactic dose?
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We decided to go to IVIG after we had a bad exacerbation post-PEX. His titers were way up and I realized we needed to "retrain" his t-cells. You do not need to be in a exacerbation to do it. We were doing well when we did it. The first week after IVIG was very interesting. Symptoms were coming out each day. After a week he settled down and then 5 weeks out we say a three day return of mild symptoms. It is a sawtooth type recovery, not immediate. We plan to keep him on antibiotics until he is an adult.
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My son went back the day after IVIG. We are now 7 weeks out and will do the next one next week over Spring Break. He will go back the next week. I inow other parents have done differently but we are trying to keep him as "normal" as possible. He is on abx and I feel I can protect him somewhat from strep but he also flares with viruses too and I can not have him live in a bubble. I am in the hospital working and probably bring stuff home too. I switch tooth brushes each month and wash hands a lot. And pray.
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My son looking back started with symptoms around age 18 months (seperation anxiety, night toerrors) and then by 4-5 had clear OCD. He was always anxious, OCD, temper tantrums that looked exorcist like and then just as we were about to go to the doctor things got better. He had a rash at one point and multiple ear, sinus, pulmonary infections. We went to a series of doctors over the last three years (14 to be exact) and got a series of diagnosis (ADD, restless leg syndrome, anxiety, OCD). Then he started with the tics, rages, insomnia, and finally full blown chorea. Even as a doctor it took the tics and chorea for me to realize this was neurological. Then at 7 we got the diagnosis of PANDAS. ASO was 1750 and antiDNase B was 1320. At that point his last documented strep infection was two years prior. We did azith with soem improvement but then went to PEX and IVIG. We did a phone consult with Dr. K and he said "Not to worry, he is young and can be cured". Now we are a year later and he is 97% normal. The majority of our days are good and I now recognise how sick he was without me knowing. Please know you are doing the right thing and he will be treated.
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I agree with the above statement by reactive. In 2002 the guidelines were changed to screen all pregnant patients for rgoup B strep at 35-37 weeks. Approximately 30% of all women are colonized in the GI or vagina. Prior to 2002 only infants thought to be high risk (preterm <37 weeks) were treated with IV antibiotics in labor or if they had the prescence of group B strep in their urine. The recommendation is to only treat if the patient is symptomatic or if the colony count is >100,000 (unless they are pregnant). As there were some severly effected full term infants with GBS induced pneumonia at term, the screening recommendations were changed. All newborns are somewhat immunocompromised so this also played into the decision to change the recommendations. So basically, if you delivered prior to 2002 you may have been GBS positive and not known.
If you were GBS positive it could explain his colonization, but he could have been colonized by anyone he came in contact with the first 11 months of life too. Often urine cultures grow out small colony counts of other bacteria and according to the CDC there is no reason to treat unless they are symptomatic.
ACOG and the CDC have a lot of info on GBS and the studies done so far. From what I have seen though from babies infected with GBS, it like group A strep, should not be underestimated.
www.cdc.gov
www.ACOG.org
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WE have BCBS NC and they have covered it. Interesting though, our total bill for PEX was around $40,000 and BCBS paid a few thousand and Georgetown wrote off the rest. Once the insurance pays the hospital has to accept there fee and can't bill the patient the difference. Just shows even if they cover it they do not reimburse hospitals appropriately. I
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We have never done monthly IVIG, just our first in January. We will have our second in two weeks, which is 8 weeks after our last. He was almost perfect for the initial month after the IVIG (with the exception of the initial exacerbation the first week) and he appears perfect at home. The only thing we are seeing are a few issues at school (primarily poor impulse control issues). It definitely fits with the "turning back the pages " description and it appears at about 5 weeks post IVIG which is right around the half-life of the treatment. I did up his azith this morning. I am also going to start researching neurofeedback as well as the brain train program and see if they could help. It makes sense that with any other brain injury you would do some form of rehab.
Susan, I am so sorry you feel like you are slipping backwards. It is so frustrating not to know what the cause is. Typically with weekly allergy shots the immune system is stimulated for about 5 days so you may see if day 6 or 7 you seem to be seeing a little improvement. If you do, it may be the shots stirring up the immune system and symptoms. You also may want to try to get an appointment with Tess Nelson on the books. She is supposed to be "the best" and she told Dr. O she is excited to see us in April. She said she is fascinated with this disease. I will be interested to see what she has to add. I know she books almost 6-9 months out but maybe if you set something up and things get worse Dr. O could try to get you in sooner. (She got us in in 5 months!). As far as I am concerned another opinion is never a bad idea.
I just wish I was a pediatrician and not a ob/gyn. I swear I would close my practice and start treating these kids like Dr. K. I am too tired though to go back and be a resident!
Claire, I am sorry you are experiencing a regression. I hope the saw tooth recovery and/or exposure to strep is the only culprit. We are struggling very much right now. I don't know if it's the allergy shots or exposure to strep or something else. We see Dr. C on the 22nd and Dr. O in April. I'll be begging for IVIG, new abx and if neither help or if we don't get help, I will stop the allergy shots. If things get any worse, I'll stop them.Susan
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Good point about the dramatic PEX results vs. the more sawtooth IVIG recovery. We tried some behaviorial therapy guidance today and he did great without shouting out. I may up his antibiotics just to be sure. Thanks for all the input. My maternal instinct tells me it is all part of healing but I may up the antibiotic for a while to be sure.
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Did you recheck titers or change antibiotics? He is on azith 250mg with a negative rapid strep.
I am finding that every time we are having 'flipping of the pages' there has been an exposure to strep. He doesn't necessarily have a full blown infection but is responsive..... its like an allergic reaction. 3 weeks ago he went to school one kid, came home as another... pulled him immediately from school until I could determine what had happened. The following day a little girl in his class was sent home with 104 fever and later confirmed with strep throat. Our sons uptick in symptoms lasted about 48 hours and then he seemed to get better, better than even prior to exposure. Apparently, their reactivity to strep should decrease over time as healing continues.Our son, has been exposed at least six times since his first IVIG in September. We have had 3 larger dose IVIG and can tell his body is finally able to combat exposures.
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My son is 5-6 weeks post IVIG and was doing well until about 1 week ago. He started having behavior issues at school(poor impulse control, shouting out rude comments) which we are not seeing at home. This is exactly what we saw last year before we had the diagnosis of PANDAS. I did a rapid strep on him which was negative and feel like we are "turning back the pages" but wanted to see what you all thought. He is supposed to get his next IVIG on March 18th (1mg/kg for 2 days). We have noticed MULTIPLE improvements since the IVIG but will take several steps forward and then some back. I know people have said this is normal but I just want to hear it again.
Thanks,
Claire
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WOW. My son Carter who has PANDAS had PEX this summer. He was cured. My other son got H1N1 with presumed Step. Pneumoniae superimposed. He had a very bad pneumonia and was in the hospital for 4 days. Exactly three weeks later my older son relapsed with his ASO at 500 and his anitDNase B at 700. His throat culture was negative. We have done one IVIG and are set to do another one 8 weeks form the first. He is doing well now. All very interesting.
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We did two studies along the path to finding a diagnosis. The first one suggested restless leg syndrome and the second one did too. In the first he was arousing 5-7 times an hour and then the seond one 14 all do to movements. Before we knew about PANDAS we tried many things for sleep and none worked. We tried Mirapex for RLS which is a dopamine agonist so it made the PANDAS much worse. Once we got the PANDAS diagnosis and have treated it he is now sleeping very well.
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We are only 10 days post-IVIG but I can already tell we are doing well. We had PEX in July and did well until November and then decided after seeing improvement on steroids (slipping back each time we tapered) that IVIG was needed. My son still has some mild symptoms but they seem to get better each day. The most amazing thing is his mood. He is pleasant, patient, respectful, helpful, and the list goes on. Yesterday my three year old knocked down this 4 foot tall roller coaster model he built (it took him 6 hours to build) and he was so calm. He actually told her it was OK. Normally this type of thing would have sent him into a rage. We also got his report card today and it is a 180 degree turn from last year when we were at our worst. To compare the two it is like they are talking about two different kids. I definitely think we are on the road to recovery!
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We had the same response with steroids with a great results after his exacerbation in November but 2-3 weeks later we started to see the symptoms resurface. We have been on steroids now since early Dec and are still trying to taper him off. We were almost off and then had to bump them up for the IVIG and now we are tapering again. Hopefully we will be off them in the next couple of weeks.
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Just an update. We are 1 week post IVIG (post PEX) and we definitely see an increase in symtpoms but not unmanagable. His pupils remain dilated which I think is similar to SF mom's child, my guessnis the body's fight or flight response to the IVIG. I think a lot is going on in there. He sporadically is walking on his toes and seems more irritable and very untolerant of his younger brother. Last night he got mad at him for breathing too loud. He did say he felt more able to control his legs and movements some. He said, beofre IVIG I would have to move but now I can control them in class more. It makes me realize despite PEX he still needed the IVIG.
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My son is at a private school and they have been nothing but supportive during this nightmare. Multiple times I have asked if dealing with this is too much and they have said no. I have not had to worry about days miseed, etc. I have nothing else to compare it to but it has been hassle-free and they seem very willing to learn and help my son.
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His thyroid was normal. Two years ago when he was having issues with focusing and poor impulse control they gave him a diagnosis of ADHD which I did not believe. I did a sleep study aand he was diagnosed with RLS. because he moved his legs 5-7 times and hour to the point of arousal and also complained of burning legs and creepy feelings. They recommended Mirapex which I did not want to do because it is a Parkinson drug that has not been studied in kids. One year later he moved all night long with awlful insomnia and worsening symptoms. His sleep study was repeated and he was now arousing 14 times an hour from movement. They really felt they could not evaluate the day unless he got some sleep because they could not believe how he was functioning. We tried Mirapex for RLS (the Parkinson drug) and it made things much worse! It is a dopamine agonist so it did not agree with PANDAS at all.
We then tried Neurontin. Nothing helped. Then we started seeing chorea, checked his titers, and the rest is history. He may have some RLS though from low ferritin. Iron is a precursor to neurotransmitters and if low can cause RLS.
I hate to put the poor child through more testing but it makes you wonder if it is all related in some way.
I think the only thing he needs to be on for the celiac test in gluten. As long as he's eating wheat every day, the test should work, unless I just have never heard of those other things affecting the test, although I know false negatives are common in children anyway. His symptoms do sound very celiac. I would get the panel done and then give it a gluten free trial even if the test comes back normal. Have you ever tested his thyroid? I have trouble with my ferritin, iron and vitamin D levels and don't absorb them well even with supplementation.I am so glad the IVIG went so well. Such interesting observations! I've been thinking of you guys a lot. Especially since we are in the throws of possible allergy shot reactions! Things aren't too pretty here right now and I'm confused.
Melanie, my dd had burning hands and feet. Our Dan! gave us P5P b6 which made it go away. I don't know if that would apply to leg burning too but I thought I would mention it.
Susan
How is P5P with tics?
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We completed his first IVIG yesterday and Carter is doing really well. We had no issues or reactions and the treatment went well. We did 1gm/kg and it only took 3 hours and was really no big deal (especially compared to PEX). Yesterday after the second infusion he got irritable which I thought could be the steroid load or the IVIG. Later he began having some mild finger/wrist rolls and then started toe walking. I found this fascinating! He toe walked when he was little and I never knew why. He did it again today. We are definitely turning back the pages. I had not seen that in 5 years. It makes me think we have had this since he was probably two. He also had some more chorea and vocal tics this morning but now is resting in front of the TV and doing well.
Also, we did a bunch of labs yesterday and I am still waiting for most of them. Carter's ferritn was 24 last year when he was diagnosed with restless leg syndrome. We tried hard to replace it and got it up to 36. We have been giving him 90mg of carbonyl iron for one year and yesterday his ferritn was 20. I am wondering why he is not absorbing it. He does have a history of inability to gain weight, large stools, transient stomach issues, leg pain, poor teeth enamel (mottled appearance). It is all very interesting. I wonder if he has celiac? All these autoimmune diseases tend to run around together. Can he be tested though if he has been on steroids for three months and also has had IVIG?...all very interesting!
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Allergy shots definitely made us worse. I understand the theory behind using them to calm but I do not think with this disease. Cunningham also felt that they would stimulate the immune system and possible make things worse...just like MS. In 1989 the WHO made a statement that immunotherapy should not be given to patients with some autoimmune diseases because it can make them worse. I think PANDAS is in this category. I do think several patients will have to try it to prove this to doctors. The allergy shot stimulates the immune system for about 5-6 days then starts to wear off. Things started to get a little better exactly 5-7 days after the shots. It took about 4-5 weeks before I felt like we were back to baseline (even on steroids). Our doctor keeps saying we will revisit the subject later after IVIG...I do not want to bite the hand that is feeding us right now but...NO WAY. We gave it two weeks of shots and it was CLEAR we were worse so we stopped. I think by the next shot you will know what to do.
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We got moved from Mon/Tues to today and tomorrow but are almost finished with the infusion and it has gone great. Bless Carter's heartt, he threw up in the lobby of the hospital on the way in because he was so nervous. There went all our pre-meds we took at home! He had a lot of anxiety but once we got the IV in he did great. They put emla cream on him and did a great job. The whole infusion will only take 3 hours. They are letting him go home with his IV in so he does not have to get stuck tomorrow. They are using Gamunex at a dose of 1gm/kg.
Our insurance company said that we have an 80/20 plan with a $2000 deductable. We have already met $1750 of it so they thought that is all we would pay. I was really nervous he would have some sort of allergic reaction given what happened with the FFP at Georgetown when we did PEX but he has had no issue at all. I am watching him right now eat chocolate ice cream and watch Scooby-doo.
Thanks for thinking of us.
Differential CBC
in PANS / PANDAS (Lyme included)
Posted
Unfortunately a diff was not ordered, just a CBC. When he saw the immunologist 2 months after PEX his IgE was 280 which is very elevated. He also had a significant response to the allergy test (so much so that they had to stop it, wipe it off, and give him Allegra). Very interesting.