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Everything posted by dabel

  1. I have not posted in awhile because I did not want to jinx my son's recovery. I guess I won't jinx it now because he is slipping. In a nutshell my son just turned 13 and was diagnosed one year ago this month. He had this since about age two but really crashed at 5. He has been in the hospital a couple of times and is considered a severe case. He has been on 875 mg Augmentin 2 x's/day since last October (one full year). He had IVIG last December and made slow but steady positive progress. He was doing fantastic and actually went to school this year. He had missed the last two years due to this lovely illness! I was very optimistic. He did well and even joined the cross country team. Then he got a virus! The virus wasn't even a big deal but here came the crippling depression etc. I took him to our Ped. and she gave him a 20 day steroid taper and ran some blood work. I would like to share his titers with all of you and see if any of your children have had this same type of result. Month/Year ASO antiDnase B Oct. 2008 400 not tested Sept. 2009 400 1590 May 2010 400 958 Sept 2010 400 1180 I do not understand why the ASO has not changed at all in two years. I also do not understand why his antiDnase B would go up recently?! Keep in mind that he has been on full strength Augmentin for one year and had IVIG in Dec 2009. I emailed Dr.K before I had the tests results back and he said if a VIRUS caused this and my son is not better in a week we will have to consider another IVIG. He has told me in the past that the titers can take awhile to come down. I get that - but two years and now the antiDnase B is going up. Would this indicate possible intracellular strep? If so then Augmentin would not work. Have any of your children's titers done this? Thanks for the input!
  2. I am looking into going there for two kids. Thank you so much for finding them and letting us know! I hope all is well with you and we'll have to chat soon. I am sooo happy that things are getting better!!!!!
  3. I also want to add that my older son who is considered a pretty severe case of PANDAS has no eeg abnormalities. Just thought I would add that for what it's worth.
  4. Okay....I am sorry for freaking everyone out here. I just wanted to address the mention of brain damage on the show that some were questioning. All I know is that we took him to a neurologist who did a work up on him which included eeg, physical, mri, etc. He concluded that my son had suffered bilateral brain damage due to encephalitis. This is not the same son I have wrote about before. This one actually lost his speech and failed to progress in both his fine and gross motor skills. This was after an illness which I took him in for a few of times. The second time was due to the fact that he was no longer my child. He had become very aggressive, crabby, slamming his head on the floor etc. He had been my absolute angel child before. Does this sound familiar? The doctor said that strep could cause behavioral problems (although she never mentioned PANDAS) and she decided to switch his antibiotics at that time. He has never been quite the same and has since been diagnosed with PANDAS. I don't want to scare everyone here any more than they already are. I do not think this is common as Dr.K said he had not seen this before. This was about seven years ago now and PANDAS was not really known but I have never forgot what the doctor said about the connection between strep and behavior because I found it strange at the time.....I don't find it strange anymore!! I have three of them. I should mention that my son received occupational, physical, and speech therapy for years. He has greatly improved in those areas but is still not quite there yet. The damage does not appear to have affected his cognitive abilities much if at all (we have no way of knowing what his IQ would be if this had not happened). He did have a neuropsych eval and scored quite high. As a matter of fact, he has been identified as a gifted and talented student. I am just grateful that he pulled out of it as well as he did. I hope with time and proper treatment he will get even better!
  5. My son has documented bilateral brain damage. This was evident on eeg after what we thought was his first episode but in retrospect most likely was not. Dr.K says he has not seen this before but I am here to tell you it happened to one of my three. We know that he had normal eeg before this as it was checked when he was younger
  6. I guess time constraints would limit everything they could say on it. I agree on the rare disorder thing. I think when all is said and done, THIS is going to be a lot more common than anybody thinks. My son has documented bilateral brain damage. This was evident on eeg after what we think was his first episode. Dr.K says he has not seen this before but I am here to tell you it happened to one of my three. We know that he had normal eeg before this as it was checked when he was younger.
  7. I guess time constraints would limit everything they could say on it. I agree on the rare disorder thing. I think when all is said and done, THIS is going to be a lot more common than anybody thinks.
  8. Lisa Marie, I am sorry to say this, but based on what you wrote it does sound like PANDAS. If it is, you have caught it early and that is a good thing. I am glad that you got her in with a PANDAS doctor so soon! I have three children with this. They all present different but my oldest hallucinated along with many other horrific symptoms. How scary that is!!! It took us seven years to get him diagnosed and properly treated. He is doing much better now. Thank God!! As far as the heavy duty psych meds go, we did not have a lot of luck with them. It seems that initially they would help but loose their umph after a short period of time. Then there is the issue of side affects with them. The problem I have with them is they address the symptoms but do not get at the root of the problem. My son is off of all psych meds now but continues to take antibiotics. You are lucky that the pyschiatrist you saw is familiar with and believes in PANDAS. Many off us go all over with our sick children before the word is even mentioned. Have you seen any improvement since she has been on the antibiotics?
  9. I have three kids with PANDAS. 12,10, & 9 years old. I was only able to vote once and the kids are different. The 12 yo is exrememly bright - rocket scientist bright. He has ceilinged out on the tests he has been given etc. He is in the gifted and talented program but is still bored with that. The 10 yo is also very bright. He is in the gifted and talented program at school also. The 9 yo is in regular classes and does well. He has not been tested for the gifted and talented program but I do not think he will be in it. He does very well in regular classes but I don't think he is up there like his brothers.
  10. I am so sorry that things have continued to spiral out of control for your son. I hope that you take some comfort in knowing that you have done and are doing everything you can to help him. The waiting is so hard! My son, as you know, went through many long term bouts like this. You do feel helpless and frantic! Atleast now you know that you are on the road to getting him better. Dr.K will is probably the best around and he will help your son. Waiting around and going through the process stinks! I agree with many of the others comments and would definately switch his abx. The psych you are working with is familiar with the high dose used for these kids and maybe he can just order it since your son is there. Please feel free to call if you need to talk...this is one tough journey. There is hope though.....my son is 3 months out from the IVIG and is doing very well! You will be there soon too. Hang in there! DeAnn
  11. I would definately recommend IVIG. My son is 12 1/2 and had it done with Dr.K about three months ago. The change has been amazing! I our case we basically did not have much choice and time was against us. The decision was made quite quickly and the benefits far out weighed the risk!
  12. That is GREAT news!!! I am so glad that the appt went well. Keep us posted!
  13. My son has "floaters" and I have seen many parents mention this about their kids on this forum. This may be what your son is seeing.
  14. I couldn't submit a question either. I actually thought at one point that it might be rigged as some of these webinars are. I found the whole thing quite frustrating! We are living day to day with something that he says probably does not even exist. How I wish he was actually right!
  15. My son is 12 1/2 yo. He has had this since about age two but went undiagnosed and misdiagnosed until this past October. We saw Dr.K and decided to do IVIG ASAP due to my child's age and the progression of the disease. He hit puberty early and we saw NO signs of this going away permanantly (symptoms did wax and wane over the years - this is typical with PANDAS). He had IVIG the beginning of December and the change is amazing! This was my childs's only shot at a happy and productive life! Dr.K explained that the length of illness does not appear to affect the recovery. My child had this a long time and was very severe. His age concerned both Dr.K and myself but so far so good! With your daughter being 15 yo I would recommend that you address this soon as time is against her if she does indeed need IVIG.
  16. For those who do not know what this stands for ...... F*##^% Up Beyond All Recognition
  17. Based on my experience with this lovely disorder or disease I feel that FUBAR is the best fit! This one never would or should catch on but for those of us with severe kids it fits the best!
  18. The PANDAS world can be very frustrating and confusing. What you need to do is to get all of your info together and let a specialist dig through it for you. The lab results were what I had suspected when we talked - I thought that that was the labs max. That is too bad that they did not tell you this. I think you are in very good hands with Dr.K! He will be honest and let you know if you are barking up the right tree and what the next step is. It is so sad what we have to go through to get our kids diagnosed and properly treated............Hopefully one day it will be different. DeAnn
  19. I am so happy that you and your daughter now have this behind you. Now..........let the healing begin! I am praying for a smooth recovery for your daughter!
  20. You made the right decision. My son has been inpatient twice (before we knew of PANDAS) and I don't think it was a great help medically or mentally. It did protect the family from harm at the time though. If you have a place outside of the psych ward that you can acheive this then that is what I would do. My son spent the last year before diagnosis living 5 1/2 hours away from his family with his grandmother. I am happy to report that his interaction with the family is GREATLY improved since IVIG this December. Hang in there and know that you did the right thing. PANDAS can be an absolute nightmare for the entire family! I pray that you and your family get the help and results that you so desperately need. PM me if you want more info or need to chat with another mother who has lived the nightmare for ten long years. I now have hope .......
  21. Doug, My son had IVIG in Chicago with Dr.K back in December. They are great with the kids there! Have your daughter drink plenty of fluids and she should do fine. It is common to get a headache after day two. My son did develope a fever and very sore neck a cpl days after the treatment. One dose of a steroid took care of that. The biggest problem you face with this is boredom. Make sure you take plenty of things with to keep your dayghter entertained. Other than that it is a very simple procedure considering what a life changing thing it can be. Good luck and I hope all goes well - you are in good hands.
  22. Hi .... DeAnn here. I am so glad to see that you are using this forum as a resource. These parents are pretty amazing! My son qualified for an IEP under OHI too. You should not have a problem with getting him to qualify. Then, like others have said, you need to write the IEP to accomodate his individual needs. Look out for that IowaDawn....she is something! Just kidding!!! She is one of my new found very dear friends. I had mentioned some of the similarities with your situations the other day. Hang in there and remember you are welcome to call anytime!
  23. The face to face appt was covered by our insurance. If you live in the area I would recommend this anyway. From what I understand phone consults are usually not covered by insurance.
  24. Michael, I am so sorry to hear that you have had to make this decision. I know how you feel. I have had to admit my son twice. It was the hardest thing that I have ever done. The first time he was 8 and the second time he was 11. It was during the second stay that PANDAS was mentioned so I guess it somewhat got us heading down the right path - eventually. Everyone's safety is important and when that is in question you have to make some very hard decisions. I am praying for you, your son, and your entire family during this most difficult time. DeAnn
  25. What the heck? My kids exacerbations last over a year! We have had a couple of shorter ones but typically I need to prepare myself for a long haul. Hopefully he never has another one and if he does I can use some of these tricks to help with the duration.
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