melanie Posted September 22, 2009 Report Posted September 22, 2009 Well I think Dannys ticcing again Probably because hes not on any antibiotics!!I called the MD he called me back but I missed the call.Oh MY GOD I cant take this !! Its definitly not as bad not even close and his behvior is very very good .He seems to tic or curse (maybe its a compulsion not a tic)when hes frustrated. My dog is sick again maybe shes getting him sick .My daughter has a stuffy nose(allergys?) Tok her to the MD no strep .I need a bubble for him. Maybe this didnt work But I saw some unbelieveable days .Maybe a fluke? 3 weeks post IVIG tomorrow. Hes 15 maybe it didnt work . Melanie
dee45 Posted September 23, 2009 Report Posted September 23, 2009 Hi Melanie, can't the doc who ordered the IVIG order antibiotics?? I hope things get better. Deana
melanie Posted September 23, 2009 Author Report Posted September 23, 2009 Hi Melanie,can't the doc who ordered the IVIG order antibiotics?? I hope things get better. Deana You would think Is it to late now ?If he doesnt Ill go to the md and tell them im sick and get some I dont know why you would do the IVIG and not follow with the protocol I just dont understand why? He is ticcing and spacy again I am misrable
KeithandElizabeth Posted September 23, 2009 Report Posted September 23, 2009 Melanie: Did you ever do the immunological work up? Perhaps Danny will need more than one round of IVIG? I have heard that insurance would cover this if there is an immunological deficiency. And so far, several of our children have been either failed/or been low in several areas of the immunological work up. And the healing process is so complex for the brain - we are going up and down 3 weeks post IVIG. Who is treating your son that will not give him antibiotics? Our new immunologist who does treats PANDAS is anti-antibiotics as well. I am still going to do the year of antibiotics just to be safe. It is all so stressful and my thoughts are with you right now! Elizabeth
melanie Posted September 23, 2009 Author Report Posted September 23, 2009 Melanie: Did you ever do the immunological work up? Perhaps Danny will need more than one round of IVIG? I have heard that insurance would cover this if there is an immunological deficiency. And so far, several of our children have been either failed/or been low in several areas of the immunological work up. And the healing process is so complex for the brain - we are going up and down 3 weeks post IVIG. Who is treating your son that will not give him antibiotics? Our new immunologist who does treats PANDAS is anti-antibiotics as well. I am still going to do the year of antibiotics just to be safe. It is all so stressful and my thoughts are with you right now! Elizabeth When you say up and down do you mean good days and then bad ones tic wise and ocd wise Hes ticccccing so much ( verbal )Im going to cry
KeithandElizabeth Posted September 23, 2009 Report Posted September 23, 2009 Oh Melanie - It is so painful for a parent to go through this.... Yes, we have good days and bad days and good moments and bad moments. Quinn's thoughts and OCD were our primary issues and tics were our secondary issue. So, I will think that we are doing so well and then Quinn will make a comment about one of his fears and it feels like someone just stabbed me. Or, he never had eye rolling and he had a day of eye rolling. I just wanted to throw up.... Overall, I see much improvement. I think it may take longer for you because Danny is older. Just keep remembering that the brain can take a while to heal. elizabeth
melanie Posted September 23, 2009 Author Report Posted September 23, 2009 Oh Melanie - It is so painful for a parent to go through this.... Yes, we have good days and bad days and good moments and bad moments. Quinn's thoughts and OCD were our primary issues and tics were our secondary issue. So, I will think that we are doing so well and then Quinn will make a comment about one of his fears and it feels like someone just stabbed me. Or, he never had eye rolling and he had a day of eye rolling. I just wanted to throw up.... Overall, I see much improvement. I think it may take longer for you because Danny is older. Just keep remembering that the brain can take a while to heal. elizabeth Thanks but its normal to get great then not great?
KeithandElizabeth Posted September 23, 2009 Report Posted September 23, 2009 Yes!!! Dr. K told us to expect this..... this is what is considered the "sawtooth" pattern of healing..... elizabeth
lss Posted September 23, 2009 Report Posted September 23, 2009 Melanie, I am so sorry to hear that you and your son are experiencing this "saw tooth" effect, or the turning or flipping of the pages as Dr. K calls it. In this world of instant gratification we all expected instant cures for our children after doing IVIG or Pex. I say this, because we too did the IVIG with Dr. K back in May and within the first few days things were great, tics were gone! Then week 3 things got worse than they were before IVIG. Yes, it is normal to have great days and then not so good days. I was so depressed, then about 2 weeks later, things got better again, except for the the tics. We saw good days and bad. In August we decided to do Pex with Dr. Latimer which was just done Sept. 9-11. As with Ivig, things were good even after the 2nd day of PEX. We still continue to see great improvement, especially with the tics, but he still has some separation anxiety as well as a bit of OCD. I'm expecting good and bad days. I honestly believe that the healing process for our children will be at least 6-9 months if not a a full year. Remember this is the brain we are talking about, and it took a long time for this to happen to our kids, we cannot expect an overnight repair. I'm suggesting that we all have to have patience once again for the healing. Linda
dee45 Posted September 23, 2009 Report Posted September 23, 2009 Hang in there Melanie, You should call the doctor and run this by them I have to agree with the other posts the brain takes awhile to heal there is no quick fix I hope as the week goes by you see more good moments than bad, but do call the doctor and let him know. I do not know alot when it comes to IVIG or PEX but can steroids in conjunction with antibiotics be used after this??? Keep us posted Melanie I will keep Danny in my prayers and your family duirng this time. Deanna
melanie Posted September 23, 2009 Author Report Posted September 23, 2009 Hang in there Melanie, You should call the doctor and run this by them I have to agree with the other posts the brain takes awhile to heal there is no quick fix I hope as the week goes by you see more good moments than bad, but do call the doctor and let him know. I do not know alot when it comes to IVIG or PEX but can steroids in conjunction with antibiotics be used after this??? Keep us posted Melanie I will keep Danny in my prayers and your family duirng this time. Deanna Ill call the ms as soon as his office opens today What should I tell danny Hes upset tha the hopspital didnt work .I am so sad I hear what yhou guys are saying and I need to hear that its ok but I am still real real sad.I hope school goes ok today Have a nice day Melanie
thereishope Posted September 23, 2009 Report Posted September 23, 2009 If it means anything, even my son who did not do IVIG had a sawtooth pattern while healing. It's was odd that he'd be doing well, then get bad again, then get better again but better than he was prior to the setback. I learned not to freak out immediately because maybe meant more healing was about to occur.I'm seeing some of the same patterns in kid who get IVIG as in kids whose bodies are lucky enough to get better on their own. Those kids just needed that IVIG jumpstart.
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