So, where do I begin???? It has been a LOT. A lot to take in, Really. I dont always spill details because I dont want to note everyone. Also being that everyone has their own issues and I dont want to be negative all the time. Blessed we are either way. The first two appts were on the negative side and the second two , while some negative had some positive as well. As yall know JA had some significant wt loss issues coming into this round of appts and was having some more stomach issues and not tolerating his formula as well as needed along with stool retention. We started some treatment for that. But was not having much success. First appt was GI He did another abdomen film. Stool was remaining. Some better but not as well as was needed. He feels its his gastroparesis thats affecting his lower GI system as well. We were given orders for a modified clean out at home. We had to balance the two issues. The need for cleaning the stool out and the fact that JAs body cant tolerate the least bit of dehydration very well. Do his GI dr came up with an amazing modified clean out at home using spurts of 500 ml pedialyte to two capfuls of miralax. We did two spurts and it seems to have helped. He is back to the two capfuls per day. Its very hard to hear that the gastroparesis has progressed to lower GI as well but we are blessed to have a GI that has the gift of the wisdom to help. Neuro Appt At his neuro appt his sinimet(carbidopa/levadopa) was increased. JA has been on the same dose for over two years. While he has had wt loss in the recent past , he has had a net gain for almost 20 pounds and with recent symptoms of the dystonia and other neurological /muscular issues Dr Trasmonte felt an increase was needed. It was a hard decision because upping it completely and if too much could send him into a severe episode that would be very hard to bring out of. Soundtrack of upping the strength it was decided to stay on the same one but instead of giving 1/2 tablet twice daily we would add a lunch time dose and give it three times daily. It seems to be helping and not causing any noticeable issues. We started gradually by doing every other day and tomorrow we will start daily. Unfortunately some of the symptoms he has developed over the last few months can not be fixed or whatnot. It breaks this mommas heart. I wont go into details. I will say that there has been episodes of confusion, frustration, and some regression. They have gotten worse but not very often so at least we have that on our side. Neuro said that unfortunately this is from disease and we cant medicate it to go away. Thats the hardest for me I think. Of anybody wants details feel free to message me. Its the hardest for me. To see him not be himself and then know something happened and cant even remember. Or when he is getting confused and the frustration he has. Its not easy. And definately not easy to hear from the neuro that I cant help it. I cant stop it. Its hard. But I cant focus on the negative too long. And thats been something I have hesitated to make public. It is just episodic right now. I just pray for no progression in that especially. Please pray with us. On everything really but that specifically. Immunology It looks like we have a new specialist to add. Oh joy. He is a fantastic dr though. I even asked our GI about him and he spoke highly of him. He says he feels JA does have some immune deficiency. But he wants to know for sure before any treatment is started. He did labs. We go back in 6 weeks. He also did some blood allergy panels. He is doing some vaccine antibody panels. He also is going to see of JAs IGG is still low which he suspects it will be. But instead of doing subclasses he is doing a complicated test that tells how well the immunoglobulins are working. He said the subclass test is outdated lol. JA will likely be getting the pneumonia vax. After these tests come back it will be decided of the benefits outweigh the risks to do IVIG. Im thankful for a dr who thoroughly investigates before making such a huge decision. We know when needed IVIG is a huge blessing. We just need to make sure its needed though because of not needed , there are risks that I wouldnt feel comfortable taking. Dr Vangala said we are absolutely needed to take the immune deficient precautions we have been. At least until the results are in. We are praying we dont have to add another treatment to his list bit get the all clear to lift the precautions. Even though it has seemed to help its hard on my not to not be able to go places and to wear a mask when its necessary to go. I know others who have no choice and my heart goes out to them. I know we have it hard , but a lot better than most. Cardiology Kimberly Smith, did yall love him as much as we did? This Dr is amazing. Dr Sharma is who I recommend to anyone who needs a pediatric cardiologist. He is truly gifted and is highly knowledgeable in autonomic dysfunction/POTS. Not that I was wanting yet another specialist to add....ugh...but at least this is one that will be beneficial. I must say that we have been so blessed to have some great specialists. Unfortunately JA has some pretty severe dysautonomia/POTS. I sincerely hoped it wasnt that big of a deal even though I knew he had some pretty horrible symptoms. I was in denial, I suppose. When they did the one test where they monitor you lying then standing for 5 minutes and look for a 30 pt raise in hr. JA had nearly a 40 pt difference at only 3 minutes , bp dropped,and had to stop the test due to dizziness and needing to lye down. They asked him to perform so his body decided it would do a good job with it. Lol. He has to have 7-10,000 mg of sodium daily, 3 liters of fluid, and salt sticks as needed. He explained it so well. About the blood pooling, syncope, dizziness, how the least little thing like getting upset causes it to be aggravated. How the whole body system is affected. Certain exercises we can try to help it even. He explained in detail what goes on in his body. Even though we got news we preferred not to get, it was a great appt with a very knowledgeable dr who we will see every there months for now and call of needed in between. So thats the update for now. I know its long. I apologize. We thank you for all the prayers and support. Yall are a blessing for sure.
Posted on: Sat, 16 Aug 2014 00:09:35 +0000
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